the Doghouse-- let the fur fly!

Just Say No!

2012-02-19T12:46:00.000-06:00

Today Mister Pawpower and I walked to a near by coffee shop for the usual bagels and hangman. After I had ordered my tea, I asked the employee behind the counter if there was space to sit on the bottom floor. The area is small, and I didn't want to go plowing in there with dogs and drinks and whatnot if I was just going to turn around and head back out due to lack of space. The store employee comes around from behind the counter and I told him that he didn't need to do that, just tell me if there were people back there; my dog can find a seat.

Instead of listening to me, this individual grabbed the sleeve of my coat and like a master with a dog on a leash, he started toward the seating area, towing me behind him, and with my dog confusedly trying to figure out what, exactly was going on. I stopped, removed my arm from his grip, and told him that either my dog would follow him, or that he could just answer my question of seating room, and I'd take care of finding the seat myself.

Apparently some people who can hear are deafer than I am, because once again! He grabbed me by the sleeve, starting out toward the seating area. I stopped, removed the sleeve from his hand, and said:
"Sir? Just for what it's worth, it is never appropriate, productive, safe, nor at all in good taste to grab a person without their consent and haul them around by either a piece of clothing or a body part. I appreciate that you are trying to help, but I have tried to get your attention several times and you continue to ignore me. Do not touch me. If you want to lead me somewhere, allow me to tell you how to accomplish this, and then follow my instructions when I give them."

Yes, I am sure many people are cringing right now because I was terribly rude, and he was "only trying to help." I respect that people want to help, but help should never be forced, and it should never put either party in danger.

If you were to look at me, you would never know that I have a hidden disability. My inner ear disease causes problems with balance and vertigo; thereby making walking or standing a huge chore, not just something I do without thinking. If someone wants to guide me, there are very specific ways in which they can do that. Safer, more comfortable ways. Grabbing my arm also means that my dog can't do her jobs properly.

I don't understand why people seem to think that the "normal laws" of physical contact don't apply to people with disabilities. If I walked up to a "normal" person, who asked me for directions, and I then grabbed that person by the arm or by their shirt and started yanking them in the general direction of their destination without even a word of by your leave or instruction, I would probably land in handcuffs at the most, or at the least get punched on the nose. However if this happened to a person with a disability, then it becomes generally accepted-- even smiled upon-- because the person doing the dragging is so kind and wonderful to help!

Many of my newly blind clients feel guilty or "wrong" about not accepting help, or if they do accept help, then they don't have the "right" to ask the person to do it in a way that isn't dangerous or frightening. It is still your body, even though you have a disability. If you don't like what someone is doing with your body, tell them to stop. If someone continues to help in ways which are unwanted, then you have the right to make it known that you don't like it. People with disabilities are not baggage, tugged and towed from here to there.
People often ask me the following question:
"What is the best way to help a person with a disability?"
Here is my answer.
First, ask if the person needs help. If they say no, don't take it personally, but just accept that the person has it covered and their way of doing something may look more difficult or differently than the way you do the same task, but that they are doing it and would like to do it themselves. If you ask and the person does want help, then either wait for the person to tell you how, exactly, you can help them, or ask the question yourself.

Do not grab or try to "move" someone as if they were a piece of furniture. If you need someone to move, ask, and then use words like "left" and "right" to indicate the direction. Do not ever move someone's cane/walker/wheelchair/crutches without asking. If you need the object moved, ask the person what they would like to do-- e.g. move it themselves, or get help. Just communicate, and listen!

And yes, before someone says it, the guy I yelled at today will probably not be in a hurry to help another person with a disability. But I think that might not be a huge loss!

Misadventures in the Red Stick

2012-02-12T16:24:00.000-06:00

On Thursday I needed to travel to Baton Rouge for a meeting. This requires four buses and then a ride to the meeting place once I arrived in BR. The first bus picked me up at my house around 9 am. I was dropped off at the public library where I waited to take the bus to Baton Rouge.

I read email and texted. A Deaf friend of mine saw me waiting and came over to chat. Apparently the supervisor for the bus had been trying to talk to me and didn't know I was deaf so my friend's friend who was hearing came over and through a series of he said/she said/he said kind of translations, the supervisor told me that the bus was coming at 10:50. I would have gotten out my gizmo for face-to-face communications but I didn't know someone was trying to talk to me.

I got on the bus and amused myself for the two-hour long ride. Eventually I ended up at the station in Baton Rouge and walked around until I could find someone to show me to the rest room.

When I got out, my ride was there to take me to the building where the meeting was. We arrived and I met my interpreters. The meeting was three hours long, and after about two hours my arms were hurting and I needed a little break. I was a bit embarrassed to ask for one but I did anyway. Everyone got up to take a break and I asked my interpreters to show me where the bathroom was.

I should probably back up and say that interpreting for deafblind people is different than for sighted deaf. With deafblind interpreting, there is a lot more describing of the environment that goes on in addition to just straight interpreting. For example, before a meeting starts, an interpreter for a deafblind person describes the room, how it is laid out, who is doing what, any identifying characteristics of people. There were a couple wheelchair users at this particular meeting so my interpreters told me about that. This way I'd have a better idea that those people would be taking up space differently than a person who doesn't use a wheelchair.

So I had my SSP guide me to the restroom. We reach the door, and I step inside and turn around to ask my interpreter to explain to me how the restroom was laid out; e.g. where was the toilet, soap dispenser, paper towels and sink. Obviously, a bathroom is not the kind of place you want to explore tactually! Ewww! Only when I turned around to ask, my interpreter wasn't there. I stepped back out of the bathroom, and asked someone to explain the bathroom lay-out to me, but the person wasn't my interpreter. However, she did kindly fetch my interpreter who explained where everything was. I joked about getting lost and never coming out again.

Eventually!!! PAH!!! The meeting was over, back to the bus station, only this time the transfer to the bus didn't go smoothly. The bus driver demanded "an identification card for the dog." However under federal law, a business owner or employee may not demand such identification as a condition of access. The person may ask if I am a person with a disability, if my dog is a service dog, and what tasks my dog does to mitigate my disability/s. This driver did not ask those questions, however. He kept insisting on identification. I told him that I'd call the police and press charges. Denial of access to a person with a disability accompanied by an assistance dog is a class-C misdemeanor in the state of Louisiana which is punishable by a fine and/or jail time. The bus driver yelled, and told me that it was his bus and he didn't have to obey the law because his only rules were that of the bus company. I asked if he'd care to place a wager on that. He yelled some more and told me that people would be afraid of my dog (who was being very threatening and fear-inducing by standing next to me calmly doing counterbalance work while I held her handle) The driver then called his supervisor. To his surprise, the supervisor made him let me on the bus.

The driver then told me that if anyone was afraid of my dog that he would park the bus and refuse to move and that I would make everyone late and that he would announce to the bus at large that we were not moving because I refused to remove my dog from the bus and that the dog was causing fear amongst the other passengers.

Too bad for him, nobody was afraid of the dog and she lay under my seat while I read email and blogs for the ride home. Once again I was dropped off at my public library and waited for the last bus of the day to take me home. It was over an hour late, and it was ten p.m. when I finally walked through the front door. I was gone again the next day by seven-thirty am.

I'm glad I don't have meetings like this often!

This and That

2012-02-08T15:14:00.000-06:00

Everyone in my office seems to have the winter crud, so it's no surprise that I got it. It has hung on for over a week and I am wishing it would just go away. In other news, I'm changing up the equipment I use for Laveau. She managed to break her guide handle for the harness, so Mister Pawpower is spending the day today making me a new one since I have to attend a board meeting in Baton Rouge tomorrow and need my harness. He is also going to add a light mobility handle on her back strap. As my inner ear disease progresses, I am finding myself in need of more and more Mobility tasks from Laveau. Due to my lack of proprioception, I have a hard time telling where I am in space. Having a handle to hold when I'm standing for long periods helps me. I have also taught her to counter balance for those times when I think I'm standing straight but am really canted far to one side or another about to do a face plant. We will put that handle on my harness sometime this weekend. I am super excited.

Tomorrow I'll be gone for twelve hours as I am traveling to Baton Rouge. This takes two bus rides and a cab ride each way, and then a three-hour meeting which means three hours of solid tactile interpreting. My arms hurt just thinking about it.
Baylee is filling out and continues to have boundless energy. We have a nice man walking her several times a week. Well actually it's more like jogging; but it really helps make her energy levels more manageable.

Bristol and Mill'E are doing well. Today when we were about to leave, Mill'E-Max grabbed one of the straps on Baylee's "in training" backpack and took off with Baylee running behind her. That dog just wants to be in charge, I guess.

I hope everyone in blogland has been well!

State of the Pack

2012-01-25T20:31:00.000-06:00

Mother Nature has a major case of confusion. It has been in the high 70's this whole week. I'm actually running the air-conditioning because it is so hot and muggy outside. Don't get me wrong; I'd much rather have high 70's than 40's! Hey, I'm a weather wimp! That's why I don't live in the frozen north with the rest of my family! While I'm enjoying this weather, it makes it hard to remember that we're only in January. It doesn't feel like Carnival time at all!

This good weather has given me lots of opportunity to get out with the dogs though which is nice. Bristol has seen both the regular vet, as well as the eye specialist and the old lady appears to be pretty darned fit for her age. This makes us all very happy as we would all be quite lost without our Queen Bristol and we hope she will be around for many years yet.

I am teaching myself to make incense. This required a trip to the herb store where my SSP got an education on everything from Rooibos to Tansy. It was fun, and I some how ended up buying a beautiful marble mortar and pestle (because I needed a bigger one-- promise)! So I am still in the mixing of the herbs stage. I couldn't find Makko powder at the shop so am going with charcoal and honey for combustion/binding. I am also trying Rooibos (red tea) in some of my blends and am liking it very much.

Baylee is growing and is starting to wear a small harness. She is having some body sensitivity issues and I'm getting her used to the feel of a handle on her back, being picked up and set down, as well as starting some positioning work. My friend took a bunch of pictures and tomorrow's chore involves uploading them to Flickr. I'll post the link when I have it. If I were more techy-ish, I could put them in the post itself but I still don't understand how to do that. Someone should really write a book-- blogger for idiots.

And speaking of books, I do believe that it is time to give the old lady her 2nd round of eye drops for the day and crawl into bed with my book. It is the first Harry Potter book-- obeying the maxim, that "When the going gets tough-- the tough read HP!"

Obstacle Avoidance

2012-01-18T16:16:00.000-06:00

Today I took Baylee for a walk. She has been doing some very light obstacle avoidance work, plus she will reliably stop for changes in elevation. She is in no way a trained guide dog, but we have been encouraging these behaviors since we got her, and in the last two weeks her focus and overall understanding of these behaviors has improved drastically.

Mister Pawpower needed to go to the post-office, and he "borrowed" Laveau since she is the master of navigating the lines in that building. While they were gone, I decided to take our striped one for a walk.

Everything was going just swimmingly. We had gone about 7 blocks in all, and were nearing the end of our walk when we encountered an obstacle..

No, it wasn't a trash can, or a parked car. This obstacle was a person... with a dog, on a leash. However, for some people, a leash just seems to be a pretty bit of fabric to clutch while their dog does whatever it pleases. This was the case with the woman we met.

I felt Baylee stop, and I reached down to find her sniffing the dog. I asked her to stop, and she did. I told her to continue walking, and she tried but failed as she was suddenly set upon by this dog who was thankfully not much bigger than she was. The dog thought it was great fun to jump up and pin Baylee to the ground, wagging its tail and licking her face. Poor Baylee just lay there-- still ignoring the other dog, and trying to get up but having no luck. I informed the woman that we needed to be on our way (which is a polite request to remove her dog from atop mine), however the woman was cooing and laughing and getting a real kick out of her dog's antics. Finally I told Baylee she could greet the other dog because I had no other choice.

Eventually I got the other dog off of her, got Baylee on her feet, and left on our way home. Thankfully the dog, although very poorly trained, was very friendly and its only intent was play. This could have ended up so much worse if the dog had been reactive. Baylee doesn't seem any the worse for wear, but I think my nerves are shot.

Life is like mystery soup....

2012-01-14T14:25:00.000-06:00

You never never know what you'll get. And yes, it's supposed to be chocolates, but I am making mystery soup today so soup it shall be.

I needed to clean out my fridge and veggie shelf, so today was soup-making-day. I also had some old stock I had frozen from a pork roast we had made a month or so back. I defrosted it (not an easy job when the kitchen is unheated and it's 35 degrees outside) and skimmed off the fat(ewww!) and tossed the stock in the crock pot with 5 chopped red potatoes, an onion, some leftover frozen corn and green beans, half a bottle of salsa that needed to be used, 4 or 5 cloves of garlic(just in case of vampire invasion) and a can of Skyline Chili base (I thought it was black beans, but got a surprise when I opened it so used that instead). I will make biscuits later or maybe some egg-rolls and that shall be our dinner, and if I'm lucky, lunches for me next week.

This morning we went for coffee. Our vet said that Baylee would tell us when she was ready to start going with us again, after being spayed on Wednesday. This morning she was for sure ready. Mister Pawpower and I dressed Laveau and Baylee and went for coffee and to the mini mart. Baylee was very glad to be out and not stuck at home. She has been a very good girl, not bothering her stitches. She doesn't even need the cone of shame (lamp shade collar) which is awesome.

Bristol's labs came back and they are all normal. She was examined by our vet who said that her hips are actually improving a bit which is amazing! Go team Bristol.

The weather has been so cold. Well ok, all y'all yankees are looking down your noses but it is! Also our homes don't have central heat so... brrr! My hands get so cold and I am very grateful for my new gloves with the fingertips missing so I can still read braille without freezing my hands off.

Tomorrow I am dragging my SSP to a local herb shop. I went to their website and they even have classes which sound interesting. I'm going to check out their prices and to see if they have Makko powder because I'd like to try my hand at making incense.

Yesterday I realized that this is a three-day weekend because of Martin Luther King Jr. day. I think I will celebrate by making another pot of the solstice soup I made last month. I may also make a pan of jalapeno corn bread, and perhaps some chocolate cupcakes.

I think that is all of my randomness for now.
Mill'E-Max is telling me that her water dish is empty. If I don't fill it soon she may exact vengeance. And don't let that golden retriever face fool you-- they are masters of revenge!!
Stay warm, y'all!

Random brain dump

2012-01-10T20:39:00.000-06:00

Part of my job requires that I do presentations on various topics to groups of people (mostly school children). Today I attended an "Abilities Awareness Day" held at a middle school. My interpreter arrived just shortly after I did. We have known one another for a couple of years now, but rarely get to work together. We spent a while just chatting and catching up which was nice.

Then the presentation started. As did the questions. One young gentleman asked me if I was married. A young lady asked me why I needed a dog if I had an interpreter. I think I'll pass on the guide human, thanks. One young man called Laveau a "statue" because she was holding so still. He was wondering if she ever moved at all. I kind of laughed at that because when she's not working, she never stops moving.

At one point I was demonstrating how I use my iPhone and Braille display for texting and the like. I had the display on my lap, and a teacher held my iPhone. I read the information on my display with my right hand while the left hand sat atop the interpreter's right hand so I could answer people's questions. Yes, it is possible to receive tactile ASL and read braille simultaneously. It kind of breaks my brain though. The ride to the school was one hour each way, so it was a very busy day, and very tiring.

Baylee is getting spayed tomorrow. I am nervous. Bristol is also going in for labs, and this also makes me nervous.
Also I think I'm losing more hearing. I know, who'd have thunk I'd have any more to lose at this point but there you go. I'm going to have to make an appointment with my audiologist soon to see if she can turn up my hearing aid again. Honestly I am putting this off because hearing aid adjustments are one of the auditory things that triggers an increase in vertigo symptoms. I really hate those. I don't care about being deaf but I hate being dizzy and sick. I didn't really even realize how much I've been struggling lately until I used an interpreter today and didn't have to struggle at all.
I always have to struggle to hear, it's just a fact. That makes it hard to notice an increase in the need to work when one is already working hard. But today really brought it home to me how stressful listening has become.

bla, bla, bla!
My brain is so fried right now I'm not making sense. gonna plug in all of my gizmos and go to sleep. We leave for the vets at 8:45 tomorrow with Baylee and Brissy. Good juju/happy thoughts/prayers to the deity/s of your choice are appreciated.

The Obstacles of Grace

2012-01-04T23:28:00.000-06:00

This post is for the sixth
<"Assistance Dog Blog Carnival">
The topic is obstacles.

When an assistance dog organization trains their specially-bred dogs to become working partners, it's only the top half, or less who make it. So many obstacles stand in the way of a young puppy. Will it have the correct temperament? Will it be physically sound? Will it like the work? So many things to overcome.

If a specially-bred dog has such a small chance of making it, then how much less so, a mutt who found herself in one of America's dumping grounds for pets, left to be someone else's problem. Her black color became yet another obstacle; because nobody wants the black ones; they will always have a higher chance of being euthanized.

Her name was Jewel. She had a filthy coat and eyes that seemed to know too much. Her first family didn't want her, none of the people who walked by her cage at the shelter day in and day out wanted her, and her time was running out. I was volunteering at this shelter at the time, and was also looking for another dog to train, maybe as a guide dog, just for fun, to see if I could train the tasks, but mostly just to have as a friend for Bristol, my old working dog. but we didn't want Jewel, either. I knew what I wanted and that wasn't her.

But sometimes we don't get what we want, and through a string of small yet life-changing events, I found myself up to my neck in suds and black fur. Jewel became my dog on a long-ago Saturday morning, as I washed her encrusted hot spots, trimmed her matted fur, and otherwise tried to fix what had been broken. At some point during that endless-seeming afternoon, Jewel the unwanted and castoff farm dog had taken her first tentative steps to becoming Gracy the guide dog. But just like windshields have bugs-- roads have obstacles.

She came to live with me, and it soon became apparent that her socialization was minimal, at very best. We did it all-- steps, cars, out door strip malls. She loved being out in the world. I loved having her, and what was even better, she was helping my current working dog to change for the better.

Her only problem was me. I had been taught just how to "train a dog." There was the one way I knew, and I used my method of choice in a manner I thought was pretty even-handed, and "normal." If leash corrections made her shut down, well that wasn't my fault, was it? I couldn't let the dog "be the alpha," could I? She has to learn to be tough. When I finally saw the metaphorical light, the popping sound which signified the removal of my cranium from my rectum was so loud, it may have contributed to my deafness.

Eventually I became an operant trainer and we both got a lot happier. I wasn't perfect, but I was a lot more willing to try different things, and a lot less quick with physical correction. She blossomed. We finally had a working relationship.

Things sailed along pretty smoothly for a while, but I should have known it was the calm before the storm. The storm even had a name-- it was Katrina. She rolled into town on August 29th of 2005, and left failing levees, and almost total destruction behind her. Gracy learned to work in a city other than New Orleans. We came back home in March of 2006, to a city laden with obstacles. All of the hours of training, all of the tears and hard work, and second guessing the both of us paid off.

Walking down the street was like visiting a third-world country. Homes lay neglected, with debris scattered everywhere. There were FEMA trailers on the sidewalk, rusted cars on lawns, refrigerators with their seven-months old contents lay in the pedestrian walkway. Nails in the road, and potholes which you could literally use for swimming holes. She guided me around them all. She knew what to do and she did it.

I remember on one of my first trips back to the city , when all I could do was walk-- zombie like-- through the blocks and blocks of destruction. Walk passed numbers on doors which told of the body count inside. walk passed people coming home for the first time, who stood weeping in yards. I just walked, knowing that if I were to stop-- even for a moment-- that I would be completely unable to move forward, or to even move at all ever again. There was nothing else to do-- so she lead me through this new landscape of death and broken lives. Without a flinch, or a twitch of an eyelash she guided me around the obstacles until I was safely home again.

Now she is retired. She is a gray-muzzled lady of leisure. She spends her days keeping the gardens free of mice, and the yard clear of intruders. I have another dog in the harness. I would like to think that I'm a better trainer, though. I'd like to think that somewhere along this unexpected journey which I've taken-- guided by grace-- that I've changed and that my current and future dogs will have benefited from the obstacles Gracy and I have overcome together.

Happy New Year!

2012-01-01T23:57:00.000-06:00

I would love to wish everyone a wonderful, healthy, and safe new year. May it be full of many good things. The holidays were quiet for us here, which has been really nice. It seems that I spent 2011 dashing from crisis to crisis which was exceedingly exhausting. I was not at all sad to see 2011 go into the history books.

Last night Mister Pawpower and I sat out on our porch sipping drinks. I can sometimes see the fireworks but this year none were close enough. However I did manage to hear a few with my hearing aid in. My husband said the entire city sounded like a giant bowl of Rice Krispies with all of the fireworks.
The weather has been beautiful around here. Temps in the 70's and sunshine. Today we celebrated the new year with a barbecue. Mister Pawpower did t-bone steaks, brats, and smoked sausages on top, and a pan of roasted veggies in the bottom of the grill. We ate the steaks tonight, but the sausages and brats are sandwich material for the next few days. I made lemon raspberry cupcakes and lemon pudding icing to go on top. It turned out super well. I just made the recipe up as I shopped in the grocery store, so score one for me!

Baylee is getting spayed on Wednesday. She is 8 months old now, and for several reasons, we do not want to deal with her going into heat, and so after a lot of careful thinking, research, and conversing with our vet who is really a wonderful guy, we decided to spay her around this time. I am super nervous. I will probably always see her as this little wriggling striped bundle with tiny paws and a bitsy round puppy head. I think leaving her at the vets will be very hard for me. I know this needs to be done, and I've dealt with enough post-spay bitches in my time, but this time it's different, because I still think of her as the baby. Bristol is also going in for blood work because I want to make sure that her thyroid is behaving. She is showing a return of the clinical signs of hypothyroidism, and I'd like to have a look at her numbers. Of course I'm having a big inner battle with myself because I'm just sure she has horrible cancer of some variety, or other. I am trying not to stress out about it. I don't think I'm doing very well and I just want her to go in, get blood taken and for my vet to tell me that she is ok. Needing a thyroid med adjustment counts as OK because that isn't surprising seeing as how she is 14, and everything.
I started reading the new Stephen King book today. It is called 11/22/63 and it is amazing. That man can write! I think this will go on 2012's best reads list, for sure!
Tomorrow, I think we're taking Baylee out with us when we run errands. She won't be going anywhere for the first couple weeks after her spay, so it's good to get her out now.

I am currently making a huge batch of tea, aroma therapy sprays and tub muffins. I do believe that January 2, 2012 will be spent in the herb room, which is perfectly OK with me.

Happy New Year, y'all!

Booklist for 2011

2011-12-31T19:31:00.000-06:00

I read a total of 164 books this year. Mostly fantasy and fluffy Stephanie Plum mysteries. I read a lot of books about Deafblind people/culture. I really got into the Song of Ice and Fire series even though I found "game of thrones" kind of intimidating and confusing; I'm glad I came back to it.

The Chris Rose was by far, the very best book I read all year long and the very hardest. It was like ripping off all of the old scabs and I literally cried through 95% of the book. I don't think I can or will ever read it again. However because it was such a powerful read for me, I wanted to mention it. I think others will find it interesting but hopefully not as soul-shredding to read.
I do have one silly Urban Fantasy book on my list; the Molly Harper werewolf books. They are really excellent. Once again, Christopher Moore has two books on the list, because I read two of his books and they always make the list because he is wonderful.

My friend Doug, who took his own life in March was the first introduce me to them and I can't read them any more without my heart breaking a little. But I guess that's how life works. So here is my top fifteen best books for 2011. Note that a * means that the books are part of a larger series but I have read all of the series mentioned in this list.
Top 15 books for 2011
1. One Dead in Attic After Katrina by Chris Rose
2. Sing You Home by Jodi Picoult
3. Of Such Small Differences by Joanne Greenberg
4. Walking Free: The Nellie Zimmerman Story by Rosezelle Boggs-Qualls and Darryl C. Greene
5. Coyote Blue by Christopher Moore
6. The Story of Beautiful Girl By Rachel Simon
7. The Hunger Games by Suzanne Collins *
8. The Confession by John Grisham
9. The Witches of Eileanan by Kate Forsyth *
10. Naamah's Blessing by Jacqueline Carey *
11. A Clash of Kings by George R. R. Martin *
12. Prime by Poppy Z. Brite *
13. Independent Living Without Sight and Hearing by Richard Kinney
14. How to Flirt with a Naked Werewolf by Molly Harper *
15. Practical Demonkeeping by Christopher Moore

A Hero's Quest

2011-12-22T20:31:00.000-06:00

Like the fearless explorers from years gone by, tomorrow I shall embark upon a great and noble quest; traveling to hostile and untamed lands in pursuit of a dream.

In layman's terms, this means that I'm going to the Apple Store, located in the m*ll to upgrade my iPhone. However, my initial description isn't far from the mark because doing this by myself (OK, with Laveau) will be epic, I can see it now.
I will have the following:
• Macbook so Apple Store employee can make sure the backup/restore from iTunes goes smoothly.
• USB braille display so I can read Macbook. My Macbook is still running Leopard which doesn't support bluetooth displays. I really need to fix this; it just hasn't happened yet.
• Easybraille braille display, which is connected to iPhone
• Braille Note with QWERTY keyboard and braille display so I can communicate with Apple Store staff.
• Old iPhone

This could get... well kind of tricky. I know I can read two displays at once; I do it all the time when working with both phone and Macbook. But add the 3rd one, the one for communication and it's going to be crazy; and yet again I will long to be transformed into an octopus so I can read more than two things at once. Also that ink thing would be cool, too. Also if I get lost in the mall, I'll need the Braille Note for communication so I can get directions. If I'm not out by Christmas; someone send a search party!
I'm very excited to get this new update to my much-beloved iPhone. Now hopefully Voiceover and my braille display will run much more smoothly than on my 3gs. Also Siri! I have about five million questions to ask her. like "What is the sound of one hand clapping?"

take my hand, or maybe not!

2011-12-18T17:52:00.000-06:00

Friday was my birthday, and since I've been under a bit of stress lately, I decided to party it up and have some fun. We started out at a rotisserie place called Zea. I had some pesto-crusted trout and two Mojitos, which are my new favorite drink. After that, some friends and I went to a party at a lawyer's house. I don't know this person but my friend goes to law school and was invited.

So we get there, and I have some rum and coke. I was chatting with a lady I know who works at the Advocacy Center, and then turned around to chat with my friend. I put my hand atop hers and tapped it, which means that I wanted her attention. She just laid her hand there and didn't give me any response, so I thought she must be talking to a hearing person. So I just laid my hand atop hers and sat there and waited. ... and waited, and waited, and waited. Then I tapped her hand again this time she wiggled it back and forth, in that universal gesture hearing people do when they want to talk to me but don't know how. I didn't know what she was doing. Suddenly, my friend tapped me on the shoulder and said that she had quick left and gotten another drink but didn't tell me because I was talking to someone else. So Another person had taken my friend's place-- one that didn't know us. Lol! I had been touching a stranger. Her hands were the same type and shape as my friends, and I didn't notice! Talk about embarrassing! Gotta love those Deafblind moments!

Golden

2011-12-14T19:23:00.000-06:00

Today Bristol turns 14 years old. Because this is also December 14th, it makes it her golden birthday. So I guess we could say that it's the Golden's Golden Birthday. She celebrated it by going to the park and chewing on a cow foot, and taking a nap on my shoes. She got a tug rope for her gift and I am assuming we'll break it in shortly. The old lady does love tug of war.

I don't really have anything to say about her that I haven't said before about a million times. Our relationship is so hard to quantify, and explain to people; especially people who don't have an assistance dog. Even though she's retired, she is still the center of everything I do. From my first half-awake fumble for her Thyroid medication in the morning, even before my feet hit the floor, until I do her eye drops and give her one last snuggle before falling asleep at night. She is always in the back of my mind, and even more now, that she is older.

When I first met her, I didn't want anything to do with her. My first guide dog had just died at age 3 from lymphoma. I wasn't ready to open my heart so fully to anyone. She didn't give me a choice about it. She was like a giant rock; waring down my hurt feelings and anger, and planting the seeds of great love in their place. She continued to be a rock, all through our working relationship, no matter what I threw at her. She handled everything with calm joy, and that sure-fire confidence that she could do anything that was asked of her. When I moved to New Orleans in 2003, I knew nobody. I had never been to the city before, so we spent days traveling the streets, getting lost, and then unlost together. No matter what happened, where I went, or what I had, or how I felt, she was always there. And that's the way it's always been.
I must confess, that a part of me wonders if this will be her last birthday. She can't live forever, I know this, but the wish is there just the same. The only thing I can do is to make sure that today, and the rest of her todays are all golden.

Silent Night, Holy Night.

2011-12-10T17:47:00.001-06:00

So this is my first Christmas without Christmas music. Ok, I should actually qualify that because I can still hear *some* music with my iPod and a device that hooks it up to my bluetooth hearing aid. But the funny thing about Christmas music-- at least for me-- was that its all-pervasiveness during the season is what really made it feel like the holiday.
I mean, how many people complain about that music in the grocery store, or the bathroom in the gas station, on the radio and in line at the post office. For a month, everywhere we go we are accompanied by St. Nick, Rudolf the Red Nosed Reindeer, and Frosty the Snow Man. Not to mention the Hippopotamus someone wants under their tree. It's a very quiet Christmas for me, and I really have to learn to appreciate the holidays in a new way.

I can smell evergreens when we walk toward the store. That smell immediately brings me back to my childhood, gathered around the tree with my sisters telling stories of each ornament we hung.

I love the smell of baking cookies, and cinnamon. The funny moving stuffed animal decorations, and the feeling of ribbon, garland and the hard cold metal ball of a bell in my hand.

When people express amazement that I have a real tree in my house, I smile. The tree is one of the few parts of the season which I can experience. I love the prickly branches, the scent of pine, and the tasks of every-day maintenance. And always there are the ornaments.

When I was a kid, my mother started giving me ornaments for the tree every year. When I moved out, I took the ornaments and hung them on many of my own trees. In August of 2005 they were lost, like so many things were, in the destruction brought on by hurricane Katrina and the failure of the federal levees.

Mister Pawpower and I had gone to Memphis and we had no ornaments. We decided to make our own and so we took a trip to a craft store for pipe cleaners, bulbs, buttons, and puff-paint.

We sat around our little table and created another chapter of our history. That was also the last Christmas I was able to hear any holiday music without amplification.

When we moved back here, we started collecting more ornaments. We still use the ones we made, because they remind me to persevere during the trying times. We have dog-statue ornaments, and many home-made ones from wonderful artist friends. We have funny ones shaped like Bigger (because he's a lot like Mill'E-Max), We have ones with big hearts (for Bristol), We have ones for Rudy, Gracy, and all the other dogs we have had in our lives. This year I believe we will have a striped ornament for our very special striped dog. As we decorate the tree, we tell the stories of how this particular bit of history came to us. So that by the time the tree is decorated, it is a story in its own right.

I have really been making an effort to find new ways to appreciate this time of year. However I can't seem to get away from the music! This morning, I was in Walmart with my SSP. I was surprised I could hear some kind of high pitched noise. I didn't know what it was and more and more, it sounded like someone moaning in pain, or a wounded farm animal. I asked my SSP if she could hear that moaning noise and she replied that that was not moaning, but that song "Angels We Have Heard on High." They were on the "glooooooooooooria" part, I guess. Only it didn't sound very glorious to me. We instead had a good laugh about barn yard animals singing Christmas music, because it really did sound like that! I've ruined Christmas music for her forever now!

Tomboy Goes To Beauty School

2011-12-09T22:54:00.000-06:00

So my friend texts me at work this morning and tells me that her friend, who works at a well known Beauty school here in New Orleans has invited us for facials and all of that stuff. I was kind of nonplused about this because I am a huge tomboy. For me, a clean pair of jeans and a shirt without Turmeric stains on it is good enough for anything I'm likely to encounter in my life. I do have long hair but I either wear it long or pull it back. I don't own any of that girl paint, or anything, and I've never had a facial in my life. Naturally I thought I should have the experience so I could know what all of the fuss was about.

We arrived and I had my nails done. I picked out dark purple polish and Kayla got right to work on my nails. Holding still for that was so, so hard. My hands are the world to me, and I know it probably seems obvious that it's this way for a deafblind person, I never really realized how disconnected with the world I become when I can not use my hands at will. I can't text or read, or talk, or listen, or reach down to pet my dog. It was very strange. I guess it helped me be mindful in the moment of having them done because I couldn't do anything else but relax and kind of space off into my own world.

Next was the facial. Only it was more like neck/shoulders/face. Complete with the wearing of these robe things which was awkward, and kind of cold. I laid in a bed and a lady did things to my face. And if I thought I was disconnected from the world when my nails were being done, it was nothing compared to how I felt up in a high bed, without even my feet touching. It was so bizarre.

First, the lady doing my face asked me a bunch of questions. It is during times like these when I wished to please have the multiple choice version of the test life throws you
It went something like this.
Face lady: "How does your skin feel today?"
Me: "well, I mean... it feels like skin, and I can't really say that my skin feels different from day-to-day; it's just... skin, and stuff."
F L: "Well is it dry? oily? a combination of both?"
Me: "uhh? I mean... It is just how it is. I don't have any idea."
F L: "What products do you use to clean your face?"
Me: *thinks to self that dog spit is not the answer they're looking for. *
"Well, water? soap?... yeah, soap and water 'bout covers it."

So after the questioning was over, the greasing and massage and stuff began.
I had this stuff sprayed on my face, and then removed. Rinse, repeat. At one point she wanted to do the same thing to my feet, but I put my foot down. Ok, ok, that was a bad line but I really did. No feet facialing for me, thankyouvery much. I did get a hand and arm massage.

She put this cream on me with a sort of brush thing. I told her that I felt like a giant cake someone was frosting. Then she and another lady put a lamp over my face and studied it which made me feel like a science experiment, and Inwardly apologized to all of the bacterium I ever put under a hot light.

Laveau watched everything and couldn't wait for me to get out of the bed. Eventually I was done and my face smelled like a veritable botanical cornucopia with mint, lavander, citrus, rose water, and at least five other herbs were used on my face.
And it's still the same as it always was. It was an interesting experience to have, though, that was for sure!

I think I'm probably going to trot into the great blue beyond singing the song about being a "beauty school drop-out."

Life, Liberty, and the Pursuit of Pizza!

2011-12-06T15:59:00.001-06:00

Don't get me wrong; I love to cook. However sometimes I'm feeling lazy and just want to order in and have dinner in my PJ's. Most of the time Mister Pawpower is around to call in our order, but when he is away, I go through what can only be described as phone hell to order dinner. It usually goes something like this.
I call the restaurant using Relay, and the person on the other end picks up:
Person: "Hello?"
Relay Operator: *explains relay*
P: "We don't want any"
*hang up*
Me: "redial number"
RO: *explains relay*
P: "I told you! I'm busy and don't want any!"
*hangs up*
Me: *gritting teeth and wondering if I should just suck it up and cook.
Eventually I get someone who isn't an idiot and I order dinner. Sometimes they won't listen so I send a nastygram to corporate, CC'ing the local manager. This usually results in shamed-face apology, as it should.

However, while perusing the iPhone App store, I found that Domino's has an app where you can order your pizza. It's very accessible with voiceover and a braille display. Better yet, I don't have to talk to ignorant people who don't listen to learn what relay is. Even better still, the app has a "pizza tracker" and it tells you where your pizza is in the making process, e.g. being made, cooking, out for delivery, etc. This was a liberating experience and their chocolate lava cakes are to die for. Now I have been spoiled by Domino's, I think all restaurants should have an app. Everyone accept the greek place who actually doesn't give me relay guff.

Pizza, anyone?

Festive Friday

2011-12-04T07:25:00.000-06:00

Friday was the annual Holiday Party for work. For the past three or so years, they have chosen to hold it at this buffet place. Why upper management would pick a buffet to be the party place for a bunch of blind people is beyond me, but whatever. I asked my SSP to come with me and then do some holiday shopping afterward.

We arrived a bit late and found a table with my friend Laura, and another Deafblind coworker and his interpreter. We all chatted and hung out until the festivities started. We always have to pray before we eat-- a practice that makes me extremely uncomfortable. Religion, like politics, are things that should stay out of the workplace. Along with the prayer, there was some rambling about how "Jesus is the reason for the season." I'm sure the Jews and Pagans, and others in the audience didn't quite agree with that statement.

After all of that was finished it was time to go to the buffet. The line was in a very narrow space, and I was squeezed in with my SSP and Laveau. I wasn't very hungry, so got a little food and then went back to my seat. I always feel like I have to eat at rapid speed at this thing if I want to be a part of any lunch conversation. I have yet to grow that extra set of arms which will allow me to eat and talk at the same time. After the meal, we received hats with the number of years we've worked there printed on the back. We also got an end of year gift check which will come in handy.

After the festivities, my SSP and I went shopping. I can't list the places where we went, because I wouldn't want to give anything away. We eventually made our way to our vets to get flea and hart-worm medication for the girls, and to snag Laveau's Proin, which is the medication she takes for spay incontinence. Laveau got weighed and she's 60 lbs. She could gain a couple of pounds and still be fine. At 26 inches tall, her height is mostly leg, but I've noticed her looking a bit ribbie lately, so have taken to upping her food amounts. She is quite thrilled about this.

That night, I gave Gracy back to my friend across the river. We went to dinner first and since I still wasn't hungry, I mostly sat around and chatted which was nice. All in all, it was a pretty busy day!

Loster? More Lost?

2011-11-30T21:37:00.000-06:00

If I had one of those little books which lists all of the obscure holidays, I would surely find that November 30th is International Get Lost Day. Next year I will know not to leave my house on this day.

Around 6 o'clock this evening, I realized that I was out of dog food for tomorrow. I feed a raw diet and thought I had purchased enough food, but my retired Boarder Collie guide, Gracy is here to visit so I miscalculated the number of mouthes to feed.. No problem, I'd just search the bus schedule, hop a bus and grab some marked-down turkey, and be back in an hour.

I Grabbed my phone and braille display, harnessed up the Dobermuffin, and off we went. We walked the seven or so blocks to the bus stop and only had to wait about two minutes when Laveau alerted me to the arrival of the bus. She guided me toward the door, and I waved at the driver so he knew we were going to ride. He responded by driving off in a cloud of fumes. I responded to his response by swearing... a lot... in a few languages.

I searched the bus company's website for the next bus' arrival. I waited. I texted with friends and Mister Pawpower. I practiced swearing some more.

Finally the buss pulled up again, and I got on. The driver was the same driver from before and he told me that he didn't see me standing there the first time. Which means that he was outright lying, or that he was very unobservant because I was waving at him and yelling for him to stop as he drove off. But whatever, I was on the bus and surely I was headed toward marked down turkey parts and by this point I was thinking seriously about a trip down the liquor section for medicinal reasons, of course.

We arrive at my stop, and the driver tells me that I should just go straight and I'd end up at the grocery store. Yes, fellow readers, my blog is like watching a horror movie where the ignorant heroin blithely ignores all of the signs of danger and continues onward. Why did I take directions from a driver who was so unobservant? I don't know, my best answer is that the cold slows down my thinking process. And I know to you yankees up in the frozen north are laughing at my version of cold, but really, 50 degrees is like, almost an ice-age.

Laveau and I get off the bus, and I tell her "forward!" And forward she goes. And goes, and goes, and goes... And that's when she walks me right over the train tracks. .....
Train tracks? Cue more swearing. Then Laveau alerts me to the noise, which signifies a train coming. We immediately turn around, and head the other direction. I tell Laveau to "find the inside." Eventually, she does! I thought we'd be wandering out there forever, in some kind of parking lot hell.

We go to the service counter, where we are assigned to someone who must have skipped high-school biology. When I asked her for turkey, she took me to the fish section. Who knows what they're doing in factory farms these days, but I am not remotely interested in seeing the cross breed of a turkey and a crawfish. Eventually the grocery lady figures out that turkey is in the section with the chickens, and we grab the required dog food. Thankfully my journey after that was pretty relaxed. However the cabby who took me home didn't have change for a twenty, so I gave him all of my ones instead, which didn't add up to the total cost of my trip. However twenty was way over-paying him. The cabby got grouchy with me, and I advised him to visit a bank before he started working.

I think I'm going to go to bed now, and not get up until tomorrow. Surely December 1st is International Pennies From Heaven Day, and my luck will have changed for the better.

ETA:
On another topic entirely, you know you're playing their music too loudly when the Deaf neighbor can feel the rhythmic vibrations coming through the floor, and when said vibrations set the Deaf neighbor's Deaf dog to barking! Now where'd I put that liquor?

I Once Was Lost but...

2011-11-30T12:12:00.000-06:00

This morning we went to the field down the road that is a sort of dog park. In the afternoon, the children use the basketball hoop and baseball field, but the mornings-- especially in the fall and winter-- are for the dogs. The park is fenced in, and takes up an entire city block.

I took Bristol, Laveau, and Baylee, and instead of using her harness, Laveau just guided me using her leash (leash-guiding). We arrived and the dogs snuffed around and played with some other dogs. Laveau, of course, found a random tennis ball and I spent the next hour throwing it. I need to put one of those "chuck-it" things on my holiday list, or something, because after a while tennis balls get yucky. The dogs played some more, Bristol alternately begged for treats, flirted with people, and read/replied to the pee-mail. Soon it was time to leave.

Usually, I enter the park through the eastern gate. I walk in a straight line from the gate and always keep in mind where it is in relation to me. Well this morning, I obviously had not imbibed the required amounts of tea for my brain to be at optimum functioning level because I realized, about half-way through our romp that I had no idea where the gate was. I got the girls leashed up, ad told Laveau to "find the outside," which means for her to find the nearest exit. She found a gate, but it wasn't *our* gate. I had no idea where I was. I told Laveau to "find home" and in five minutes we were on the porch. All that without a harness, I'm proud of her.

Now I'm off to read more of my book, "V is for Vengeance" by Sue Grafton. I love new books in much-beloved series.

I AM! the Inspiration! Baby!

2011-11-24T09:32:00.000-06:00

This post is for the November edition of the <"Disability Blog Carnival">

I sit with my ASL teacher in a coffee shop. Today's lesson is about drugs, alcohol, and swear words.
My teacher begins, and I rest my hands atop hers. With her right hand she spells out "cocaine" and then makes the sign. I repeat it back to her. My teacher pauses, and then tells me that someone has walked up to our table. My teacher then begins interpreting this lady's words. "I saw you sitting over here and I wanted to come and tell you how inspirational you are. I think it is so amazing that even though you are both deaf and blind, you can come here all by yourself, and get coffee all by yourself. It's wonderful that you have special friends who can talk to you. I love watching you, and I think you are so inspirational." Before I can begin to compose something sufficiently snarky, she walks away. My teacher laughs, I laugh, and we joke about cocaine being inspirational. Then she jokingly says that the ASL sign for "inspirational" should be my new name sign, because I AM! the inspiration, baby.

I am in the mall with my SSP, and we are waiting at the Apple Store for the Geniuses to fix my Mac. We are deep into a discussion of dog poop, when a young woman comes up to us and says: "I think sign language is so beautiful. I just love watching you guys signing to each other. That is so special, and wonderful. Tell her that she's inspirational." The young woman leaves, and we roll our eyes and make my new inspirational name sign, which has become a joke amongst all of my friends.

I have a staff meeting for work. The room we are using is full because another meeting was taking place in there and had run late. My interpreters arrive, and we sit down in the lobby and begin chatting while we wait for the room to empty. I am telling a funny story about a misadventure I'd had earlier in the week, and then I leave to check to see if the meeting room had emptied. a client of my agency says: "Wow, is she deaf or deaf and blind?" My interpreter tells her that I'm Deafblind. The lady's eyes widen and she says: "Wow! and you have the biggest smile on your face when you talk to her. That is so amazing, I'll bet it's like talking to an angel from heaven." My interpreter tries not to laugh, and replies that no, she is smiling because I was telling her a funny story. The client then tells my interpreter that it is such a blessing that she can still laugh even though she is deaf and blind, and that I am an inspiration. Upon my return, my interpreter repeats this entire conversation back to me, and we roll our eyes and make the sign.

Whenever my friends or family tell embarrassing stories about me, or tease me, or play practical jokes on me, I remind them that I am an angel from heaven, and an inspiration and that they'd best give me the proper reverence or I may stick a whoopee cushion under their chair the next time we're at a restaurant. Don't mess with me! I AM! the INSPIRATION, baby! And don't you forget it!

Stop and Go Laveau

2011-11-16T20:09:00.000-06:00

It seems that the Pawpower Pack got together and decided that this week it was Laveau's turn to be led around by the nose... Well maybe not by the nose, exactly but...

Yesterday I was in the kitchen letting the dogs in from the yard when I realized that Laveau hadn't gone out at all. I let the other dogs in, and then called Laveau to go outside. Laveau has a great recall, so I was surprised when she didn't recall to my side right away. I called again, and again she didn't come to me, so I went searching for her. I found her, trying to walk toward me, but having an awfully hard time of it because Baylee had taken hold of Laveau's collar in her mouth and was trying to hold her back because she wanted Laveau to stay inside and play with her. I think Mister Pawpower is going to have his hands full with Miss Stripes!

Today we were getting all of the dogs ready to go for a walk. I decided that Laveau would guide me, and Mill'E-Max would walk on my right, with Mister Pawpower taking Bristol and Baylee. I got Laveau harnessed up, and clipped her leash to her collar. Then I turned to help the other dogs get ready. I turned around with Mill'E-Max's leash in hand, only to find her walking off, Laveau's leash in her mouth, so that Laveau had no choice but to go with her. I have no idea what was going through her mind when she decided to walk the dog herself. Maybe I could hire her out as a dog walker?

Although Mill'E-Max did somewhat redeem herself today by picking up a dropped hot dog from the floor and giving it back to me. Of course I no longer wanted it, since it was covered with dog spit and floor germs, so I gave it back to her as her reward for giving it to me to begin with. I will continue to wonder what people who don't have dogs do for entertainment.

The Pawsuit of Happiness

2011-11-13T19:52:00.002-06:00

Today we went to a festival, which is hardly newsworthy, seeing how New Orleans seems to be the festival capitol of the world. This was a festival which was different than most; it was for pets. They had different booths and activities. It was me, Laveau, Mister Pawpower, Baylee, and my SSP.

We arrived and my SSP laughed because as we were entering the festival grounds, Laveau had to walk by a large lake. The path was right next to the lake and at one point, she took me near the edge so she could stare with great longing at the water. I am blind, and can't read her facial expression, but even I could feel her mental wheels turning. She loves to swim. But this was not on our schedule for today. After she gazed her fill upon the forbidden water, we entered the festival area.

My SSP started describing to me all of the booths set up by different vendors. We stopped at a booth selling collars and got Baylee a new collar with "Who Dat!" written on it. The collar is black and gold which matches Baylee's coloring really well. She was also growing out of her puppy collar, which was pink and Mister Pawpower needed a more manly collar for his dog. Then we stopped by a booth set up by a local pet shop, and I bought Laveau a hard rubber ball which looks to have great bouncing potential. This should make Laveau quite happy as chasing the ball is tied with swimming for her favorite activity. We passed a bunch of other booths, and saw loads of dogs.

There was a giant bucket of water out for the dogs to drink. I let Laveau have some, but she surprised me by hopping into the bucket with all four legs and swishing around in it. Guess she was getting even with me for not letting her swim in the lake. Once I was able to stop laughing and talk, I told her to get out of the bucket, which she did, reluctantly.
We met a family who had an English Mastiff. That dog was HUGE! He weighed 220 lbs, and his owner said that he ate 45 lbs of food every week. You know you are a dog owner when your mind immediately runs to the amount of poop that dog must deliver to his humans every day. It's like having a horse, only one that sleeps in bed with you! We also met a little girl who was around 5 or so. She was learning some signs and wanted to talk to me, so was showing me all of her ASL. It was so cute, and she had such tiny hands.

We went to a kissing booth run by Boxer Rescue. They were doing the booth to raise money to help pay the vet bills for sick Boxers.. The dog they had today was so cute. She was brown and gave sweet little kisses. The kissing booth was kind of a table thing. The dog was at like chest height on me, and would give kisses. Well she saw Laveau who was being very good at keeping "four on the floor" but who really wanted her own Boxer kisses. So the Boxer leaned down, and Laveau leaned up, and it was like a scene from Romeo and Juliet when their noses finally touched.

We walked and walked and walked some more. Laveau flirted with some more dogs and eventually we ended up getting some lemonade because it was hot. I got water mellon lemonade which was very good. We finally left the festival around 3:30. both Baylee and Laveau are exhausted.
I think Mister Pawpower is cooking French Toast for dinner, with sausage and syrup. I am getting hungry, so shall go prod him in the general direction of the kitchen.

Deaf is not a four-letter word

2011-11-08T19:44:00.000-06:00

"You don't look blind!"
"You don't sound deaf."

People tell me those things on a weekly basis. I might be slow on the uptake, but what does "blind" look like? What does "deaf" sound like?

When you think of "deaf" or "blind," what are the images which pop into your mind? The man wearing sunglasses, stumbling along, white cane in hand, trying to find his way along city streets? The woman who doesn't voice, and instead uses an interpreter?
Stumbling? Not as intelligent as "normal" people? Unable to "speak?" Clueless? Dependent? Helpless? Uneducated?

This is how history, and the media defines people who are deaf or blind.

I'm not what you think I am, and because I don't fall into line with stereotypes, I am told that I don't look or sound the way someone thinks I should.

Blindness is a spectrum term. Deafness is a spectrum term as well. There are many faces of deafness and blindness, not to mention deafblindness. We are not just one type of person with many faces. We are a cross-section of society just like "normal" people. I walk confidently, and look at people when I speak to them. Unless people see my dog or my braille book or display, you would think I were sighted. I voice for myself because I'm post-lingually deafened. I don't have any kind of "speech impediment," because I'm post-lingually deafened. I'm not ignorant, nor am I any more special than the next person. Unless you see me signing, or talk to me over the phone via relay, you would never know I am deaf.

Because I don't conform to people's standards of what they think blindness, or deafness should be, some people seem to be afraid to use the terms "deaf" and "blind." This is especially true of the word "deaf."
"She's d-d-d-... d-d-d ... ... hearing challenged." This was spoken by someone who knows me quite well. Someone who interacts with me extensively every day. Why is it so hard for her, and for others to say it? DEAF! I'm deaf. If you look at my audiogram, I have a 105 decibel loss in my "good" ear, and a 135 decibel loss in the ear that is there strictly for decoration. That's pretty darned deaf. I wear a hearing aid because I have to, in order to work where I do. I don't wear it at home, or when I'm relaxing. I self-identify as deaf, and have always thought of myself this way. So why is it so hard for others to say the D-word? I think it's because I don't comply with the stereotype of deafness, whatever that is.
I am involved in the Deafblind community. I use American Sign Language, both at work and with friends. I self-identify as culturally Deafblind. If there was a "cure" for my deafness, or my blindness, I wouldn't take it because I am who I am, and I like myself this way.

I've asked people why they continue to stumble around, searching for terms to describe my hearing loss when a readily available one is at hand? A word which i, myself use? It certainly isn't in order to save my feelings, because if the word deaf bothered me, I wouldn't use it when referring to myself. The most common answer I get is this:
"I don't want people to get the wrong idea about you."
And what idea would that be? That I can't hear? Because I can't hear. That is the simple truth, right there; I can't hear. Or is it really because I don't fall into line with our society's pre-conceived notion of what "deaf" is. If other people are discomfited by my word choices, then they should get over it, because I am not changing. Since it is me I am talking about, I have the right to identify myself in the way most appropriate. And that is deaf. People are going to just have to swallow their resistance and say it; because I will keep correcting them, and I will continue calling them out on it.
I am not impaired, or challenged. I am deaf. I voice, I use ASL, I read braille. I have several methods of communication at my disposal, and I will use whichever meets my needs for that moment. I am not helpless, nor lacking in intellect. I have a work and social life, made up of friends and coworkers, deaf and hearing, blind and sighted. I am a wife, a teacher, a dog trainer, a herbalist. I love dirty limericks, ASL poetry, and long books. I am fond of dark chocolate and cold tea. And I am Deafblind.

Just Us Bitches

2011-11-07T21:33:00.000-06:00

Mister Pawpower is in Colorado, visiting his family. Since Baylee dog is too young to fly, I have her in addition to the three big girls. So it's a house full of bitches. He has been gone since Thursday and I have spent time cooking with foods I like and Mister Pawpower does not, such as brie, smoked salmon, and asparagus. My SSP and I took all of the dogs to the dog park and that was very fun.

A lady showed up with a Komondor, and I got to run my hands through it's flocks! I want a dog with flocks! We also had a funny incident, where a police car drove close to me, and even though all of the girls were off leash, they saw it, and all came running, and stood as a barrier between me and the car. An off-leash traffic check.

Today I took Laveau and Baylee to the coffee shop. The handy man was working in my kitchen and I was hungry, so off we went. Since it was so lovely, we all sat outside and enjoyed the weather. Baylee had the hard chore of keeping her "down/stay" and not getting up to investigate her surroundings.

I have actually got to spend quite a bit of time reading since there is no other human in the house. Yes, it is possible to read and eat simultaneously.

Now that all of the dogs have had their last outside time for the day, I guess it's bed time for me. Dogs don't understand the meaning of changing the clocks back, and I'm spending my mornings trying to convince them that yes, they really can wait a little longer for breakfast. Whoever said that "fall back" gives a person an extra hour of sleep certainly did not have dogs!

Bubba!

2011-10-30T19:49:00.000-05:00

I have always loved this time of year, ever since I was a kid. One of my favorite fall activities is pumpkin carving. I remember making groceries with my Father. Come fall, we'd get out of the car, walk toward the store, and there they'd be; the heaps of orange pumpkins. Maybe I like pumpkins so much because that particular shade of orange is one which I can clearly see. We would go through the heaps of pumpkins, and each of us girls would pick out "the perfect" one.

Several hours later, we would cover the table with newspaper, and begin carving our pumpkins. My sisters were much better pumpkin artists than I was. I remember clearly, my father very patiently helping me to get it "just right." Come Halloween night, we'd put candles in our jack-o-lanterns and set them on our front porch.

Even now, when I'm supposedly a grown up, I still carve a pumpkin come Halloween. Well actually Mister Pawpower and I do it together. It started many years ago. Our first pumpkin was quite ugly. His eyes were narrow-set, and rather windswept. The nose was huge, the mouth rather lopsided. Once we had finished carving our first pumpkin, we went to put the top back on, only to discover that it was missing. We searched everywhere, and eventually began searching the dog's crates. Rule of paw at our house is that is something is missing, always check the crates. We found the top to our pumpkin, a bit the worse for wear, in Rudy's crate. Apparently he found the taste of pumpkin to be rather pleasant, and to that end, had taken a few nibbles from the edge. The top still fit, though. But it look like an in-bred hick had come out second-best with a shotgun. So we named our pumpkin Shotgun Bubba.

That started the tradition of naming all of our pumpkins Bubba. Usually with describers at the beginning of their names. Through the years, we've had Bad, Bad, LeRoy Brown Bubba, Shit-Eating-Grin Bubba, and Back-Alley, Blind-Justice Bubba, just to name a few.

This year was no different. On Saturday I went with my SSP to pick out this year's Bubba. She showed me these cool pumpkins that looked like the ones from Cinderella. And here I thought that the pumpkins in Cinderella just looked like regular, normal pumpkins. Just goes to show what I know. I decided to pick just a regular old traditional pumpkin. I found a round one with a jaunty stem, and paid for it. Today Mister Pawpower and I commenced to carving up our Bubba.

Now Mister Pawpower is very good at making straight lines and carving recognizable shapes. Me...? not so much, as my Father can attest. So despite Mister Pawpower's careful carving, I always end up making it look crazy, because I can't carve anything right to save my life.

This year's pumpkin is <"Cave-Man, Me No Have Dental Insurance Bubba."> The dental insurance part is because I kind of messed up on the teeth. The cave man part, because he is noticeably lacking in a forehead.

We celebrated the successful carving of our Bubba with a barbecue, and will roast the seeds to snack on for later.

The dogs, as always, took great delight in eating the guts of the pumpkin. Tomorrow our Bubba will go out on the porch and will frighten the entire neighborhood, I'm sure.

Autumn Roundup

2011-10-19T20:48:00.000-05:00

The universe has seen fit to have mercy upon us down here in "da swamp." We have officially entered into the season known as "not summer." This means that one can safely go outdoors without immediately becoming drenched. This new state allows for more frequent outside activities such as long walks and barbecuing, and long evenings spent on the porch with a six-pack.

Baylee is growing, but that is the nature of puppies so it shouldn't come as a surprise. But seeing as how this is my first ever dog to have from a puppy, I am surprised daily by her. It's like, one day her body will pick one part and will focus all of its growing might upon it. She is now 33 lbs and I can't pack her around with ease any more. Baylee is enjoying being bigger, and the more advantage her new-found size gives her in games of chase and tackle.

I have downloaded the new IOS on to my iPhone and have really enjoyed playing with all of the new features. I may actually get the iPhone 4s itself, once I have a chance to have a good long chat with the fine folks at AT&T. My old 3gs is over two years old and is beginning to show its age. If I do get the new phone, it will be very exciting because I'm a geek.

I am also getting a new braille display because my Braille Note has been broken more than it has been working lately. Human Ware, the manufacturer of this device is slow to repair the units and has recently broken mine even further in an attempt to "fix" it. This will be my last Braille Note. I have not had my unit in over two months and am very grateful for the loaner which allows me to use my iPhone and have independent communication. Because of all of these problems with Human Ware, it is necessary for me to get a new display for use with my Macbook and my iPhone. I am eagerly awaiting its arrival; see part above about geeks.
Miss Bristol is enjoying a bout of renewed vigor thanks to the cooler weather. She will be fourteen years young in December and we are enjoying every day we get with her.

I have just finished my 127th book of the year. I am currently engrossed in the universe of Stephanie Plum. Janet Evanovich's writing improves as the series progresses, and I highly recommend these books if you need some light reading. Once I finish my current book, I think I'll take a break from the Plum universe and read "Interview With a Vampire." It's either that or "Dracula." I haven't decided. Something scary and appropriate for the season

Oh and it is pumpkin-carving time. Our "bubba" will be carved some time this weekend or next week and I will post pictures of our... masterpiece.

That is the update from here, I need to take a dive into our huge dog freezer to search for tomorrow's canine breakfast. I'm always afraid I'll fall in there, head first one of these days.
So if you are looking for me, and I'm nowhere to be found, check the freezer.

Independent Living Without Sight and Hearing

2011-10-18T12:32:00.000-05:00

Yesterday I read a book called "Independent Living Without Sight and Hearing." It was written by Richard Kinney and was published in the 1970's. While reading this book, it really hit me how much technology has really changed the lives of deafblind people within the last thirty years.

In Mr. Kinney's day, there was no way for a person who was blind as well as deaf to use the phone. You couldn't access a TTY for sighted deaf if your couldn't read print. In his book he mentions a couple of devices for using the phone with someone who knew Morse Code. These devices were called the Tactaphone and the Sensicall. They were attached to a phone and the hearing caller could tap out messages in Morse Code which were felt as vibrations by the deafblind person on the other end. If the deafblind person could voice they could speak back. Reading about the lengths a person who was deafblind went through just to place a simple phone call, made me so thankful for my iPhone and braille display.

In the book he also mentioned that the
<"National Library Service for the Blind and Physically Handicapped">
had 10,000 braille books available for loan.
10,000 books sounds like a lot... at first... But if you really think about it, and compare it to what sighted/hearing people have, it is only a drop in the bucket. If you had special interests, such as growing carnivorous plants, you were basically out of luck. If you were Christian, there were several charities which would provide you with religious material in braille. There is even a Jewish Braille Institute which provided materials, however if you were another religion, you couldn't get any material easily available in braille.

Today we have
<"Bookshare">
which has, at last estimate, over 125,000 books. The content is largely user driven, so if you are interested in a particular title, or area of interest, you can scan books for the collection, or have a friend do it for you. There are books on almost every topic you can think of. There are sacred texts from many different religions from around the world. There are fiction books, cook books, self-help books, and text books for school. If you have a braille display and a computer or smartphone, or a note-taking device specially designed for the blind and deafblind, you can read. What's more, you can keep the books you like. Braille is three times the size of print. As an example, the first book in the Harry Potter series takes up four volumes in hardcopy braille. I think the book is somewhere in the range of 300 pages.

If I kept every book I loved and wanted to reread or own in hardcopy braille, I would need entire building devoted to housing my book collection. While something like this sounds like the closest thing to heaven on earth, to a bibliophile like myself, it is not financially feasible at this time.

Thanks to technology, I can keep copies of books on a jump drive to be read later. I can keep reference books, and cook books. My braille display weighs 2 pounds whether its hard drive is full of books or not.
Mr. Kinney's book also goes into great detail about the communication methods used by deafblind people during this time period. Although most DB people were using
<"The Rochester Method">
Which was made most famous by Helen Keller and her teacher Annie Sullivan. It is the one-handed American Manual Alphabet-- the same one used today. This book does not discuss the use of ASL or other signed languages at all.

It does discuss the use of morse code and the British Two-Handed Manual Alphabet. This Alphabet is still in use today around the world, by deafblind people from Canada to Scotland. The books gives very detailed descriptions of all three types of communication. I have always wanted to learn the British Two-Handed Manual Alphabet so that I may more easily chat with DB people from other parts of the world. I already know the One-Handed Manual Alphabet but I don't know Morse code and I think it might be interesting to learn so I have it in my "communication tool box."
Although much of the information is out-dated, this book was still a fascinating read. It really brought home to me how blessed I am to be a DB person living in this current time. I have access to information at my fingertips and on demand. I can call a taxi, read a recipe for curry chicken, or place an order for new shoes by myself. I have frequently heard some people say that technology cuts people off from one another. This may be true to some extent. However for a deafblind person, I believe the opposite is true.

Because of Steve

2011-10-06T09:48:00.000-05:00

I'm not really one to be interested in the goings-on of celebrities. However there is one person whom most would consider a "celeb" that changed my life. When the smartphone craze started happening, I was largely left out due to my increasing hearing loss. I canceled my contract with Verizon in 2006, because I was no longer able to use the phone. From that period until 2009, I didn't have one. For most people, a cell phone is a nice thing to have. However for a deafblind person it's a necessity.

I got my first iPhone in 2009. I was able to place relay calls, use GPS, text, and use many other apps right from my phone. For a person who can see and hear, this isn't probably such a big deal. You can read street signs, use a pay phone, if you had to, or read the ingredients on a box of crackers. I can do all of these things with my iPhone.
It has literally opened up an entirely new world for me, and many other deafblind people. It levels the communication playing field and gives us equal access to information which is something we have never experienced. My life-changing ability to have this device which supports braille displays and third-party applications is a large result of the work of Steve Jobs. No matter what you may think of Apple, or its products, or of Mr. Jobs personally, it cannot be disputed that he has changed lives. He has changed my life.

My sincerest condolences go out to his family and friends. They have lost more than just an innovative thinker-- they have lost a husband, a father, a friend. Steve will very much be missed.

Thank you, Steve for everything. Rest in peace.

Love Letter To A Puppy

2011-10-03T22:18:00.000-05:00

When you were new, your paws so soft, and untried.
Your toenails miniscule, and me afraid to cut them.
I carry you from room to room, with your head tucked under my chin-- feeling your sweet puppy breaths on my neck.
You are sleeping-- your head in the crook of my elbow, your tail draped over my wrist.
I watch you breathe, and for a little while I know what it is like to feel complete.

Days pass, weeks pass, and you shoot upward.
Your long legs have not learned the art of moving in concert.
I watch as you stumble, fall, and rise again.
We lengthen your collar, and shorten your leash.
I stand with you balanced on my hip-- now your head is above mine.

Yet more, outward, upward, ever changing, moving on, learning more.
I think if I just held still, and didn't blink, I could watch you growing-- see your brain expanding with each new experience.
A year from now, you'll be someone's eyes.
You will stand between him and the very big world
with cars, and shards of glass, and angry people all around you.
This is your purpose, this is the plan.
But as you sleep next to me, curled into a ball of striped legs and ears, and that very long tail, I watch you dream.
The selfish part, that protective part of myself which I didn't even know I had until you came along, wishes that you could stay a puppy forever.
I wish that I could still carry you in the crook of my elbow, and feel your soft paws on my face.
When I was young, they told me that growing up was over-rated. I never understood what they meant until today.

A Final Act of Service

2011-09-25T17:35:00.001-05:00

A guide dog has many jobs. Stopping at changes of elevation, taking its handler around partial or total barricades on the path of travel, and finding entrances and exits are the most familiar jobs that guide dogs are asked to perform. However there is another task-- one that we don't really think about much. That job is to pull the handler out of the path of on-coming traffic, either by pulling their person back, or getting in front of them and body blocking them. This part of being a guide dog has cost many dogs their lives. Yesterday it happened again.

Our friend has been hospitalized with broken bones and is recovering from surgery. His dog-- who saved his life-- was euthanized because her injuries were too severe, and the only thing that could be done was to end her suffering.

I can't even describe my feelings when I heard this news. Shock, quickly followed by horror and sadness. And the knowledge that my dog, who is currently sleeping next to me on my pillow could be asked, one day, to pay this final price.

I will hold all of mine extra close tonight and will remember the ones we have lost.

I would also ask my sighted readers who drive to pay attention. When you make the choice to get behind the wheel of your car, you are taking on a huge responsibility. This responsibility means that you need to pay attention when you are on the road. Using the phone or flipping through your stack of CDs for "just one second" could end up costing someone their life. Pay attention!

... and hug your dogs tonight, and if you have any extra juju, or energy, send some to a friend who was the victim of someone's random act of carelessness, and who is grieving the loss of his partner.

She's Too Purdy!

2011-09-14T12:12:00.000-05:00

I arrived home from Massachusetts on Saturday. I was actually supposed to arrive home Friday night, but that is another tail for another day. Suffice it to say that the plane I was scheduled to take out of Albany couldn't fly out, so the airlines put me up in a hotel for the night.

In my experience, airport personnel are, by and large, the most ignorant people when it comes to knowing the laws which apply to assistance animals and their handlers. The problem is, that most of these people don't believe that they are ignorant-- on the contrary, they tend to misquote the law to me at least once every trip, and when I argue with them and tell them to point out the applicable section of the law to me, they get miffed and can become downright nasty. This trip was sadly no exception.

Saturday morning, I showed up to the Albany airport, bright and early. Laveau was with me, naturally. We made our way to the counter so I could check my luggage, when the woman behind the counter demanded "certification" for my dog. The Air Carrier Access Act (ACAA) is the law which gives persons with disabilities the right to travel on aircraft in the United States with assistance animals. Certification is not required. In fact the law states that if the dog is wearing an identifying harness or vest, or if the handler gives "credible verbal assurance" that certification shouldn't be an issue. Laveau was wearing both harness and vest. She walked me up to the counter and was obviously guiding me. But this lady wants certification. So I very politely inform her that certification is not necessary as a condition of access. And then she says that my dog's harness is different than most dogs and it looks "too pretty" so she must not be a guide dog.

Juuuuuust when I thought I'd heard everything, some moron comes along, and opens their mouth thereby proving that the horizons of idiocy are boundless. I inform this woman that the ACAA does not define what equipment an assistance dog may wear. That would be like your car insurance carrier telling you which color of car you may own. Laveau's harness is zebra striped, black and white. Her cape is purple with zebra striped trim and large letters which say "PAWPOWER SERVICE DOG." So we've got the "identifying harness and vest" section of the law covered, no?

I tell this lady that my dog's gear is of no concern to her and that yes she is an assistance dog. The lady then says "So are you blind, or what?" I wanted to reply with "or what?" But I held my tongue and informed her, ever so kindly, that it is not required by law for me to disclose the nature of my particular disability/s. I will gladly tell anyone the tasks my dog performs which mitigate my disability/s but my disability/s are my own and they are personal. This person had not obviously read the law. I told her what tasks Laveau performs which mitigate my disability/s and went on my way with my dog in her pretty gear.

Then I got selected for a random search and the TSA agent managed to turn my carefully packed and organized bag into a jumble of stuff in under two minutes. Now I remember why I stick to riding the train!
With idiotic airport staff aside, it was a wonderful trip and Laveau had so much fun, and played so hard, that she slept for two days once we got home.

Rocket Rox!

2011-09-05T12:32:00.000-05:00

Laveau and I made it to Massachusetts without incident. On Saturday morning, we went to a garlic festival held in Vermont. It was really neat. There were many different tables set up and you could try all kinds of different things with garlic in them. We had garlic cheeses and dips, garlic mustard and pesto, salsas, and infused oils. I ended up buying a few things to bring home. We also got an order of fried garlic cloves and fried pickles to share. It was a lot of fun.

Yesterday we stayed around home in the morning, but in the afternoon we drove to Saratoga Springs, New York with our friend Lynn. We went to an Irish pub for dinner and I had some lovely Irish cider with my dinner. After we had eaten, we went to the Saratoga Performing Arts Center to see Elton John in concert.

I would like to publicly thank John Huff and Kevin Appler of the Saratoga Performing Arts Center and Live Nation tours for finding me two very skilled tactile ASL interpreters for the show. The entire staff at the SPAC were very professional and courteous, and they helped make this evening an unforgettable time for me.

We were supposed to sit on the lawn, but we were moved to an area directly in front of the stage so we could be close to the interpreters. My two interpreters were really great and we spent time chatting before the show.

The opening act were cellos, and apparently they played popular music by Michael Jackson and Guns and Roses. My friends said it was quite odd.

Elton then came on and he was wearing a suit with roses embroidered on the sleeves and across the back. The pinstripes on his pants were diamonds.

He had a full band and a chorus. I couldn't really hear much at all. His piano was a full grand, and I could feel it in my chest when he played it. My interpreters were great at describing his playing. At one point he was sitting on his piano and playing it, another time he sat on the bench like you'd sit a horse.

He played many old favorites-- Daniel, Benny and the Jets, and Your song to name a few. My favorite by far was Rocket Man. We all stood up and were dancing. My interpreter had her hands up over our heads for the rockets and we were basically doing an ASL dance. The energy in the room at that moment was really amazing. He also played Crocodile Rock and that is very fun in ASL.

Elton walked through the audience shaking hands and making autographs. My interpreter got his autograph for me which is so exciting! It is my first ever autograph.

Laveau and my friend's dog, Yancy, both did really well. Laveau laid with my friends Lynn and Nancy because it was more out of the way. I had to sit facing my interpreters and there was not a place for her where she wasn't in the way, so I sent her back to lay with them and she did fine.

Before the concert started, we got a great deal of rain, complete with thunder and lightning. I was glad we weren't sitting on the lawn, let me tell you! The drive home was quiet; we stopped for caffeine and doughnuts and for the first time ever, Laveau slept in the car she was so tired.

We got home around two in the morning and I went right to bed and slept until eleven. I am still tired believe it or not! Tonight my friend's husband is making his special lamb recipe. It is my favorite ever lamb dish, and I am looking forward to it. Her husband is a very skilled cook and we have had everything from blackberry pancakes to hot wings.

Today we are going to just relax around the house. It is rainy and gray outside and we could all use a day of chillaxing. I think there will be Scrabble and Uno games later in the day.

Happy Labor Day y'all!

Celebrating the Orange Dog

2011-09-01T20:39:00.000-05:00

Eight years ago today, the orange dog became a part of our pack. We celebrated this momentous occasion with giant perfect bones from the butchers. I thought I'd celebrate her anniversary on the blog by doing
Eight factoids about Mill'E-Max
1. Her name is actually Miele (said like me ay lay). It is italian for honey, since she is kind of that same color.
2. When she was a puppy she ate an entire pealed grapefruit, and a bag of Twizzlers. To this day she will beg like crazy if she sees me eating either one of those things.
3. Mill'E-Max has been on two cruises with me and has been to Mexico, Grand Caiman and Jamaica.
4. She can, and has retrieved something the size of a small pill, and as large as a gallon of milk. She has also retrieved my hearing aid several times without even getting it wet.
5. She loves helping with laundry. Emptying the dryer is her favorite job, and after she is done, she enjoys crawling into the warm dryer and taking a nap.
6. She talks more than any other dog I've ever had. She enjoys having conversations, and if I grrr, grrr, grrrr! at her she will do it right back. I can't hear it any more but I can feel it. She really likes wrapping paper tubes because they amplify her grrr! She has been known, on multiple occasions to spend minutes at a time parading through the house with said tube listening to herself gggrrrrrr! It is not a "I'm going to bite you grrr, it is a talking sound and I will have to make a recording of it.
7. She knows how to lead other dogs around by holding the leash in her mouth. I have trained her to go find Bristol and bring her back to me via a traffic lead attach to Bristol's collar.
8. It is one of her "jobs" to wake me up in the morning. She will at first lay on me and lick my face. If this does not work, she will resort to removal of pillows and blankets. She also will lay on her side and literally use her four feet to push me out of bed if I continue to resist. She does not have a snooze button, most unfortunately.

Happy eight years together Mill'E-Max Weatherwax! May we be so lucky to have at least eight more.

That'll Do
Lyrics by Randy Newman

A kind and steady heart
can make a grey sky blue;
And a task that seems impossible
is quite possible for you.
A kind and steady heart
is sure to see you through.
It may not seem like very much right now but it'll do, it'll do.

When you find yourself in the middle of a storm
And you're tired and cold and wet,
And you're looking for a place that's cozy and warm
You'll make it if you never forget:

A kind and steady heart
can conquer doubt and fear.
A little courage goes a long long way,
Gets you little bit further down the road each day,
And before you know it
you'll here someone say:
That'll do, Babe, that'll do.

A kind and steady heart
is sure to see you through.
A little courage goes a long, long way,
Gets you little bit further down the road each day,
And before you know it you'll hear someone say:
That'll do, that'll do,
That'll do, Babe, that'll do.

Preparing to vacate!

2011-09-01T08:42:00.000-05:00

Things have been very busy in Pawpower Land. Tomorrow I am traveling to Massachusetts to visit some friends whom I have not seen in many years. This, of course, necessitates all of those fun pre-trip activities such as laundry, packing, and shopping for goodies. Being from New Orleans means that you are obligated, by an as yet undiscovered law of the universe, to come with baggage loaded down with everything from pralines to olive salad. Shopping for goodies is one of my favorite pre-trip activities. I like trying to pick out what I think people will like.

I am still in the "laundry" portion of things, and I have prudently purchased very large bones from the butchers so that I may effectively keep all of the dogs out of my suitcase while I'm trying to pack. I am hoping that the dogs will be occupied with the bones long enough to get all of my packing finished and the suitcase stowed in a corner.

We have several activities planned for my time in New England. There is a garlic festival on Saturday, where we get to sample the wide variety of gustatory delights all containing that most magical of all botanicals-- garlic! I am told they even have garlic ice-cream. On Sunday we are traveling to Saratoga, New York to see Elton John in concert. I think I have interpreters for this event. My parents were very fond of his music, so I was exposed to quite a lot of his stuff while growing up. I am super excited to go! The venue is outside and it sounds lovely. We are hoping to go to my favorite diner in Vermont for the obligatory Cajun Omelet. Funny that my favorite Cajun dish is prepared in Vermont! We are also going to the mall and just spending time chillaxing and playing with dogs.

One of my friends has three dogs-- a working guide, a retired guide and a pet golden. My other friend has a working guide. Laveau will not lack for companionship, that's for sure!

Tomorrow my SSP is picking me up to do the afore-mentioned goodie shopping and to go to the airport. I leave around 4 in the afternoon so I can go to work for a little while in the morning which will be nice.

I hope all of my readers have a wonderful and safe Labor Day.

I want to be like Durga!

2011-08-27T11:18:00.000-05:00

Durga is a Hindu Goddess frequently pictured with eighteen arms. As a Deafblind person, I frequently feel like I should be given more arms than a sighted/hearing person. I'll give you a prime example.

Last week I needed to re-certify for CPR and first aid at work. It was a six hour class for which I had two tactile ASL interpreters. Yes, my arms were really, really stiff after it was all over. The CPR instructor played a video which described the CPR procedures and the members of the class were supposed to "practice" along with the video. We were given a dummy to practice with and the video began. Only how do I "watch" my interpreters interpreting the video and perform CPR on the dummy at the same time. Also the entire thing became so ridiculous that both of my interpreters, and myself could not stop laughing.

I "watched" the video, and then began my work on the dummy. One interpreter tapped me on the arm to mark chest compression, and the other breathed on me to indicate when it was time to give rescue breaths, otherwise known as mouth-to-mouth.

I really could have used some extra arms then, that's for sure. So if anyone has connections with Durga, please kindly ask her to lend me some of her arms!

Dogpark Picspam!

2011-08-21T18:53:00.006-05:00

Because I still don't know how to put them in here directly you have to go to
<"My FlickR page">
Enjoy!

Edit: We may have figured out how to insert photos directly into the posts..see below.

Bayou Barkers; Laveau rolling in the grass, covered in mud; Baylee chilling in the grass.

Hands

2011-08-20T16:42:00.002-05:00

When folks think about someone who is deaf and blind, most people's immediate response would be to think about how much that individual is missing. They can't see, they can't hear, so what else is there?
...

There are hands. I have never realized how widely people's hands differ from one another until I became deafblind. One of my interpreters has large hands. He has a chunky ring on his left ring finger. It has engravings on it and I think it is beautiful. His hands move confidently, sketching the words in the air. I would know him anywhere by those hands.

My friend has small hands. They are the hands of an older woman-- hands which have seen many years. They are graceful and gentle. They flutter softly against my own, but will then suddenly become emphatic. She tells funny stories with her hands-- has given me so much encouragement with her beautiful old hands.

I talked to a man who had more hair on his hands than most men have on their faces. I felt like I was having a conversation with Bilbo Baggins because of all the hair. For years I couldn't remember his name. I continued to think of him as "Bilbo."

Her hands are long and slender. She usually does musical interpretation for me. She is the song made flesh. She brings the music to me once again through her hands.

I never knew I could learn so much about a person by their hands. Their mood, their body type, their taste in jewelry,or fancy nail polish. I met a lady once who had a ring on every finger. Talking to her was very distracting. I imagine it's the same for a hearing person with food in their mouth, only less gross!

Hands guide, they communicate and teach. They read and answer questions. When I became deafblind, it never occurred to me how hands would open my world.

The Three Things

2011-08-16T20:21:00.000-05:00

I've been thinking back over my life, and how I have become the person I am today. What things have influenced my life the most? What were the choices I've made which improved my life and overall well-being? And I came up with three things that I think have made me who I am today and which have changed the way I see myself, and the way others see, and interact with me, and how I look at the world. I can't put them in order of importance because to me, it is my independence and my life rests on these three things equally. So in no particular order...
1. Partnering with an assistance dog.
When my only disability was blindness, having a guide dog was nice, and it made traveling easier and much more pleasant, but it wasn't a necessity. Now that I'm deaf and blind, and have a balance and vestibular disorder, my dog is literally my independence. She guides me around obstacles, retrieves items I drop, leads me out of buildings when the fire alarm is activated, gets my medications when I literally can't move from vertigo. She stands between me and moving vehicles. She helps me up when I fall, and lets me know when to wake up in the morning. She is my eyes, ears, hands and vestibular system. It would be extremely difficult to be without her.

2. Learning Braille.
It may surprise you to learn how few blind people learn or use braille. I didn't until I was an older adult and started having trouble with my hearing. Today I use braille for everything. To interact with my computer, and my cell phone. I can read books, keep informed about the news, look up phone numbers, make relay calls, use a GPS, read and respond to emails, and label the poisons herbs in my herb cupboard. I am able to interact with the written word in a hands-on way. Because of the marvels of modern technology, I am able to do use a computer and a phone because I can read braille. Computers and smart phones open up so many doors to people, and level the information playing-field.

3. Learning American Sign Language.
When A blind person loses their hearing, it is so catastrophic. For so long I was isolated. I lived in uncertainty and outright fear. It wasn't even the social aspects which had me so upset, but how could I go to doctors, manage my own shopping, or go to meetings at work if I couldn't hear or see? I qualify for a cochlear implant, but for many reasons it is not an option I'll take. I didn't want to be "fixed." I wanted to be independent. And yes, I wanted to have a social life. I will be forever grateful to the strong Deaf and Deafblind role-models in my life. I am thankful for their patience, for taking me to Deaf and Deafblind events, for helping me, for encouraging me. I am thankful for a fantastic teacher who manages to challenge me while making me laugh. I am thankful to all of the SSPs I've ever had, both in New Orleans and at Deafblind conferences and camps around the country. I am thankful for the gift of language which allows me to make independent medical decisions, to have informed choice when I shop, and which allows me to participate in company meetings and training sessions on an equal footing with my hearing coworkers.
I can honestly say, without those three things I'd be a totally different person than I am today. And with all of that navel gazing out of the way, I think I'll go read a book with my dog!

Sausage Wrangler extraordinaire

2011-08-14T10:07:00.001-05:00

Yesterday was Mister Pawpower's turn to make groceries. He was bringing in the bags when one of them burst. Naturally it was individually wrapped chubs of sausage which landed, and because my floor is old, and slanted, they rolled everywhere.
All of the dogs were out in the yard, and I decided to put the rest of the groceries away and then let Mill'E-Max in for her to deal with the sausages. And that is what I did.

I let the dogs in and immediately Mill'E-Max went to work, bringing back little chubs of sausage which had rolled behind my table and some chairs. She didn't even break the package with her teeth! I am super proud of her! It also makes me realize how much I depend upon her every day, and how thankful I am that I can have such a fantastic helper.

Today I'm going shopping with my SSP because my old faithful backpack is about to die,. Backpack shopping is a huge deal for me. I keep my life on my back! It has to be waterproof (because I live in the swamp, after-all), and comfortable, and hopefully purple! Because everything I own (almost) is purple, or it has zebra stripes.

As you can see, that's a tall order. Which means a lot of browsing through various stores (which I hate), in search of the perfect waterproof, comfortable, multi-pocketed, and hopefully purple with zebra stripes, backpack of my dreams! My SSP may just kill me before it's over.

Actually, for that matter, I hope Laveau doesn't kill me. She hates waiting patiently for me to look at item after item. But then again, she's enough of a show-off that working in crowded stores and malls is her favorite. And there will be so much to watch! She may not kill me after all.

Post-Prandial pondering

2011-08-11T22:15:00.000-05:00

We had dinner, it was yummy, but so, so hot!
And while eating, I thought I wondered if I could teach myself to put pictures in blog posts themselves, so this is my attempt. Obviously, I won't be able to tell if this works or not, thus your input is appreciated!

Thos should be two different pictures of a much younger Bristol at her first Barkus (dog Mardi Gras Parade), in 2004. She's dressed as a sun flower with beads around her neck. In one of the pics she is holding a can of Coke in her mouth.

The Tail of the Funny Onion, and other randomness!

2011-08-11T14:23:00.000-05:00

I stayed home quite a bit this week because of vestibular shenanigans. This made lots of time for book-reading (Yay George R. R. Martin for writing such long juicy books) and cooking (chicken salad to die for) and dog wrangling.
Yesterday morning all of Laveau's tennis balls had gone missing. Laveau's very favorite toy is the tennis ball and this was a crisis of mammoth proportions! Laveau searched and searched, but nothing-doing. Eventually she decided that if the tennis balls weren't to be found that she needed a substitute. She did not pick any of the numerous other toys we have, oh no. Instead, she picked ....

AN ONION!!!!

I'll grant you, it was a tennis-ball sized onion, but that's where the resemblance stopped. Onions, unlike tennis balls, do not bounce, and I'd imagine the flavor was markedly different! She didn't eat it, just tried to play with it. However the puppy did think to sample the gustatory delight of the onion, and that is where it stopped.

The tennis ball was found in the back yard, and the onion was tossed into the trash.

It has been very, very hot so we haven't walked much at all. Instead we've been playing games of ball and tug inside. I am really ready for October!

Mister Pawpower moved Baylee's blog due to some accessibility issues. You can now read it
<"Here">
There will be new content up soon!

As for the other dogs, they are all good. Laveau is now officially in charge of tiring the puppy out enough so that we can get other activities/training done. Laveau is really good at this new job, like she is good at everything else! Bristol is still pretending Baylee doesn't exist, but has been pretty full of piss and vinegar these last few days, wanting to play tug and in the middle of everything. It's good to see. Mill'E-Max is my big helper, as usual. Today I dropped a glucosamine pill of hers, and I asked her to pick it up and hand it to me so I could put cream cheese on it, because she won't swallow it any other way. So she did that, and was very pleased with herself.
Whoop, the puppy is awake! My blogging time is over for today! :)

Puppy Prattle

2011-08-09T19:50:00.001-05:00

We've been ultra busy here in Pawpower land. If we're not playing with the puppy, training with the puppy, or taking the puppy out to do her business, we are usually dead asleep! Having Baylee in my life really shows me how much maturing Laveau has done. I adopted her as this young, eager, slightly nervous dog. I sometimes forget that she's really a grown-up now.

On Saturday we took the pack to the dog park. Well OK, Mill'E-Max stayed behind because there wasn't enough room! Bristol and Laveau were off-leash and Baylee was on a long line. We didn't actually see any dogs while we were there, surprisingly. Laveau thought it was funny to run with Baylee and keep on for about five feet passed where Baylee's leash ended. Then Laveau would stop, turn around and taunt Baylee. It was like doggie keep-away. Bristol is still ignoring Baylee so she spent her dog park time checking her Pee-Mail and sending numerous replies.

Mister Pawpower has made Baylee's first "in training" cape. I'm getting it embroidered this week. Only a dog nerd like me would find this super exciting! And OMG her cape is so cute! and tiny! And I imagine that one day, when Baylee is all grown up that we will look at this tiny cape and marvel that Baylee was ever that small.

My dogs are all very vocal when they play. They sound like they are tearing each other's head off, but really it's just fun. Today, Baylee has discovered that she can also make noise-- a lot of noise! I can hear it!
I have a raging ear infection from wearing my hearing aid too much. These infections also produce an increase in vertigo symptoms. This results in a lack of balance, and the inability to distinguish direction. Today, while on the way to meet my ASL teacher, I crossed a small road a block from the coffee shop. It felt to me, like Mill'E-Max had crossed the road on a right diagonal. When we got to the curb, I told her to go left. What I didn't know was that Mill'E-Max had actually crossed straight, and by asking her to turn left, I was asking her to take me directly into on-coming traffic. Because I can't hear, I didn't register this fact. Thankfully, she body-blocked me and pushed me back. Thereby telling me that I needed to think again, and take a closer look at my environment. I finally figured out where I was and she carried on. It's experiences like this which make me so grateful for my dogs and their willingness to have such a crazy partner who is deaf, blind, and with a really crappy vestibular system. I can say for a certainty that I would not be anywhere as independent without a dog.
So Mill'E-Max gets extra praise, treats and love today for being an awesome dog!

Fun with Puppy

2011-08-04T10:45:00.000-05:00

I finally have Baylee pics! But I am a super blog moron and do not know how to put them in my post itself, so go
<"here">
to see 'em!
Baylee also has a
<"Blog of her own!">

Things have been interesting around here. And by "interesting" I mean exhausting, fun, and educational all at once!
On Tuesday, Baylee went to the eyevet so he could examine her eyes to make sure she doesn't have impaired vision. We can't have the blind leading the blind after all!
Thankfully Baylee did great at the eyevets, and so did Bristol!
Today we went for a walk and poor Laveau was the one left at home. Mister Pawpower took Baylee, while I took Bristol and Mill'E-Max guided. We went into the pet-friendly little mini-mart and then walked up to the doughnut shop. I stayed outside with the girls while Mister Pawpower went in with his cane to get doughnuts. Now we are home and the dogs have had a crazy play session, so it's nap time for them! I'm jealous!

Bayou Baylee

2011-08-01T18:42:00.000-05:00

Today we met Baylee, a Boxer Lab cross. She is five months old, black and gold (because she cheers for the Saints!) and is seriously adorable. She loves to explore new things, isn't afraid of much, and loves everyone; dogs and people alike.
She is Mr. Pawpower's new guide dog in training! I'm trying to get her in with Bristol at the Eyevet tomorrow for a prelim exam and then she'll see our regular vet on Thursday once her records are shipped over.

The other dogs like her pretty well, although Laveau is not happy about her crate getting taken over by the striped upstart!
I need to get her a small service vest or have Mr. Pawpower make her one. The serious guide part of her training won't start for many months but we look forward to obedience training and fun socializing with her.
I am going to try to get pictures tomorrow when I'm with sighted people who know where to point the camera!

WAGS!

Would you like me to open that, Sir?

2011-07-27T19:54:00.000-05:00

Mill'E-Max is the brains of the household; paws down. She taught herself to unscrew the caps off of bottles about six years ago. Mister Pawpower really likes wine, but I prefer beer. So he found these small bottles of wine which were only one serving. We were in a post-Katrina house at the time, which didn't have much furniture. Mr. Pawpower sat on the floor-- bottle in hand-- and became distracted by the phone. Mill'E-Max picked up the bottle and started manipulating it. She figured out that she could unscrew the bottle with her back teeth. Mister Pawpower ended his phone conversation just in time to see Mill'E-Max tilting her head to the side, while the now cap-less bottle was tipped with her forepaws aimed right for her mouth. I am not kidding.

Ever since then, Mill'E-Max will take any chance she gets to screw the lids off of bottles. She won't pick them up at random, but if I direct her to pick it up, she then thinks of it as "her bottle." And if i set her bottle down on the floor or a chair or the bed, She will then begin the task of unscrewing the lid.
Today I asked for a water in the fridge. She brought it, and gave it to me. I set it down on the bed to go play tug with Bristol, and three minutes later, I find her on the bed, front paws wrapped around the bottle, back teeth clenched on the lid, and a shit-eating grin on her face, as well as a wagging tail and that set to her ears which meant she was thinking. She had been sitting there, waiting for me to notice that she had the bottle. I did get it away from her before the first turn of the lid.

If anyone ever tells you that dogs don't have senses of humor, don't listen. Or I'll set Mill'E-Max on you!

An Even Dozen

2011-07-26T12:14:00.000-05:00

Today is Bristol's and my twelfth anniversary as a guide dog team. Ok, she's retired, but she is still my partner. I've been thinking quite a bit about everything we've done together, and it is really amazing that one little dog can have such a big impact on a person's life. I got Bristol six days after losing my first dog, Rhoda, to lymphoma at age 3 and a half. To be honest, when I first met her, I couldn't imagine myself ever meshing well with this goofy and very demonstrative little red dog. I was used to Rhoda's aloof mannerisms and high-drive nature.

Our first year together was mostly about me getting over the loss of Rhoda, and trying to figure out what, exactly was wrong with Bristol. If she wasn't having ear infections, her skin was infected. If she wasn't vomiting-- usually in public-- she was having diarrhea, thankfully always in the grass! It was scary and frustrating. Some how, in the midst of all of the sadness and fear for her health, I handed my total trust and my heart over to her, and we've never looked back since.
I couldn't even begin to describe all of the places we've gone together, the changes she has brought to my life, and the deep bond we share. So to take a leaf from two of my favorite bloggers, Brook and Jess, I give you....
Twelve Facts About Bristol:

1. She only weighed 37 lbs and was 16.5 inches tall when I got her from the guide dog program.
2. Bristol was supposed to be a breeder dog for said guide dog program, but thankfully didn't pass the tests for breeders!
3. Bristol's favorite treat is jelly beans. Because of her tendency toward yeast, she can't have many, but she had some today!
4. Bristol has ridden in a boat, a horse-drawn carriage, airplanes, trains, buses, and streetcars. But her favorite form of transportation remains the gulf carts at the airport.
5. Bristol loves to swim. She will swim for an hour or more if you let her.
6. Bristol has helped with the training of at least 5 other guide dogs.
7. Bristol used to go deer hunting with me, and when we shot one, she would try and drag the entire carcass back to the truck by the leg. Needless to say, that wasn't happening.

8. When I first introduced Bristol to raw meaty bones and organ meats, she hated them and went on a hunger strike. Now she eats them with gusto-- even the liver!
9. Bristol is largely deaf now and apparently her bark has changed since she can no longer hear herself barking. She now has a Deaf Accent!
10. Bristol's favorite game is tug of war, and she will win almost every time because she never gives up!.
11. Bristol gave me away at my wedding but my honeymoon cruise was the first time I ever left her behind; I took Mill'E-Max instead. I had to call my friend who was watching her when I made port in Jamaica just to make sure she was alright.
12. Whenever we get new dog gear, Bristol has to be the one to try it on first. She stacks herself and grunts at the person holding the new harness, leash, or vest until they put it on her and let her parade around wearing it. And of course all of the people have to mention, frequently and loudly, how beautiful they think she is wearing the new gear.

I honestly don't know if we'll make it to thirteen years. So today we will celebrate enough for a long time, and then live each day as if it were the only one we had.
Thank you Bristol, for everything. You are the very best!

He is my other eyes that can see above the clouds;
my other ears that hear above the winds.
He is the part of me that can reach out into the sea.

He has told me a thousand times over that I am his reason
for being

by the way he rests against my leg;
by the way he thumps his tail at my smallest smile;
by the way he shows his hurt when I leave without taking him.
(I think it makes him sick with worry when he is not
along to care for me.)

When I am wrong, he is delighted to forgive.
When I am angry, he clowns to make me smile.
When I am happy, he is joy unbounded.

When I am a fool, he ignores it.
When I succeed, he brags.

Without him, I am only another man. With him, I am all-powerful.

He is loyalty itself. He has taught me the meaning of devotion.

With him, I know a secret comfort and a private peace.
He has brought me understanding where before I was ignorant.

His head on my knee can heal my human hurts.
His presence by my side is protection against my fears of dark and
unknown things.

He has promised to wait for me...whenever...wherever--
in case I need him.
And I expect I will--as I always have.

He is just my dog.
-- Gene Hill

Access rights; they're not just for people anymore!

2011-07-24T21:28:00.000-05:00

Hello people! This is Bristol and I've decided that it is well time I put my paw to paper and write on this blog.
I know that the "Big Bitch" comes in here to write about access and stuff, so in order not to disrupt her flow; I'll stick to this topic.

Did you know that dogs have access challenges too? Not just the kind where you are in the harness and working and some no brained idiot doesn't want to let me into their store, either! You see, dear reader, I am getting older. Like fine wine, I improve with age, but some parts of me just don't work as well as they could. This means that sometimes I have trouble going down steps or on to high places.

So my Uncle Kelly, who is very smart and handy, built me a set of steps to help me get up on the human bed. I like the human bed for snuggle time but the new bed is just too tall for me to jump onto, so Uncle Kelly made me steps. I love them very much, but there is just one problem.

Certain Dobermans and dogs of an orange hue keep laying on the part of the bed next to the steps! Because these dogs refuse to move, I cannot use the steps to get on to the bed! Sometimes The Big Bitch and Bigpops will lift me on to the bed, using the "elevator," but this is not what I want. I need to wait for the people to leave what they are doing to "elevate" me. Whereas, if I use the steps, I can get on and off the bed when ever I want. Laveau and Mill'E-Max are therefore, blocking my access to a place of public accommodation! Well not really public, but it's as close as I can come!

I think us old dogs need to form a PAC; draft a law laying out our access rights! Like, other dogs cannot block the steps on to the bed! We may be able to tack some "Pork Barrel" into this legislation which dictates an increase in our food amounts. I don't know about y'all, but I could use a barrel of pork!

Any other Senior Citizens want to join me?
Wags&Licks®,
Bristol

Uhh, that's not in the brochure!

2011-07-22T18:23:00.000-05:00

I'm talking about the brochures put out by the service dog programs. They don't talk about the "real live" stuff of having a service dog. I mean; it's all about "freedom" and "independence", but they don't tell you about the moments (hopefully few and far between) which make you want to crawl under a rug and hide. Moments like I had today... When Laveau, with neither rhyme nor reason vomited in spectacular fashion during my beginning braille class.

Whoops, I should have put a food warning on this. Oh well; I've never been one for rules and lord knows us dog people talk about it without a second thought... So anyway; where was I? Oh yes-- vomit.

See the thing is, all of my dogs have done the deed in public, and I'm kind of an old hand at this. Mill'E and Bristol both are Theatrical Pukers. They had to go through all the motions, gag, heave, etc. It was a huge production. Which, although embarrassing, gave me ample warning of the impending gastric onslaught. I got really good at rushing my dog/s outside, or to a garbage can.
The difference is that Laveau is not a Theatrical Puker; she's one of those rare breeds-- the Stealth Puker®. I swear, one moment she'll be fine, and the next she's just horked her breakfast onto her toes. It's like that song, "Whoop, there it is!" So I was mid-way through my class when I smelled it, and selfishly wanted to hide under the rug.

I am an expert cleaner of these kinds of messes, so I quickly got back to teaching. Laveau is fine; she does this once a year or so-- will just sort of throw up (usually in public) and just be fine.

And can I just say that it will continue to amaze me when people are shocked to see my dog throwing up. One lady once said "I thought they were trained not to do that."

So yes, surprisingly enough, Service Dogs; being that they are *dogs* do all that unpleasant stuff just as we do. And you can train a dog to do many wonderful and helpful things, but they are still dogs and puke happens.

Maybe I'll print up hats for service dog handlers that say "Puke Happens." And when you are cleaning up the mess in the middle of a Wal*Mart, you can put the hat on your head and give people something else to stare at.

Bristol has been quite playful today. She really loves this squeaker chicken I bought for her in Virginia. Isn't that the way it is though-- you spend all this money on expensive toys, and it's the cheap ones you pick up without a thought that they really love.

And just not to leave her out, Mill'E-Max decided that when I asked her to hold Laveau's leash for a second, I really meant that I wanted her to take Laveau for a walk. So Mill'E-Max trotted away-- leash in mouth-- and behind her, there is Laveau, being haplessly led along by a very exuberant Mill'E-Max who thought this was brilliant.

I love dogs!

Observing the Observers

2011-07-19T14:39:00.000-05:00

I find it interesting to watch people who are watching Laveau working. People seem to love to interpret her various movements and facial expressions. Most of the time they are wrong about what she is doing, but it's interesting none the less.

One of the main emotions people say Laveau displays frequently is fearfulness. If she backs me away from a car, people are more apt to assume she is afraid, not that she's protecting me from a large vehicle I can neither see nor hear. The same reaction is seen when Laveau approaches steps or uneven surfaces. She will stop, put her body in front of me, and then advance with caution if I cue her. Once again this is seen as fearful. People tend not to realize that she is being very careful with me because I have terrible balance, and have been known-- on more than one occasion-- to just randomly fall over and then not be able to get up without a huge production.

I frequently wonder why so many people have this assumption of "fear" on the dog's part? Is it because that is what they are used to from their pet dogs? Does Laveau really look fearful. Or are people just not used to seeing a dog take control of a situation and make a deliberate decision?
Laveau is very sensitive, and does not like it when I fall, so has learned to be very cautious and careful, and to not listen too me without a keen observation of the environment, because for me, the world is not holding still and I am clueless as to which end is up. But she is not "afraid" of cars, nor steps in and of themselves.

I think it would be very interesting to let a sighted/hearing person with normal balance take her for a walk on leash, and see what she does. Mister Pawpower has worked her several times and once she figured out Mister Pawpower wasn't such a stumbling klutz with crappy balance, she was not nearly so protective and watchful with him. Not that she is unsafe, but I would say that the level of watchfulness Laveau displays with me is abnormally high for most guide dogs. However when she is with him, she's pretty average in watchfulness.

I'm very thankful that Laveau is so watchful. she is never allowed to retire!

Tech? No!

2011-07-17T10:32:00.000-05:00

I wanted to blog a bit about technology, and describe what kinds of technology are out there for Deafblind People.

The word Deafblindness is a broad term. It can mean someone who is hard of hearing, with low vision to a person who is profoundly deaf and totally blind. most deafblind people have a bit of sight, or a bit of hearing, or a bit of both. I, for example have a small bit of sight, but not enough to use for reading print, or signed conversations. I use braille and ASL tactually. I can also hear a bit but can only hear speech in quiet settings. If I am going to listen to audio long term, I plug a device called a streamer into my computer or iPod, and it links it directly with my hearing aid-- eliminating background noise and cranking up the volume. Since there are so many different combinations of "deafblindness" what works for one won't work for all.

I use a Macbook with a braille display. The display runs off of USB, and is "twenty cells" long which means that it displays twenty characters or spaces at a time. There is a program called Voice over which will either speak what is on the screen, or will translate it into braille to be read on my display.

I also use an iPhone with a braille display. I learned to operate the iPhone using the touch screen and various gestures. The iPhone has opened up new worlds for me. Until I got an iPhone, I couldn't make phone-calls independently when away from my computer. I use relay to make calls. I use AOL Instant messenger to connect with relay operators who call the number I want. They type in what the other party is saying. I read the conversation on my screen, and type back my answer. The relay operator then reads my answer back to the hearing person. It is a newer version of the TTY. But I could only use this on my computer. Until I got an iPhone and downloaded an application for AOL Instant Messenger and could now make phone calls to anyone, from anywhere.

This meant that I could call a cab for myself, when out doing the shopping. It meant that I could call the pharmacy to get refills for my meds while I was on the buss. It meant real independence. The iPhone has many other apps. I can identify money, the color of a shirt, the label on a can, and get hurricane warnings all on my iPhone. I can also do texting, which opens up a huge new world of communication possibilities for friends and family. I can also use GPS.

On Friday I took a buss from my office to the grocery store, I got on, paid my money, and opened up my iPhone and braille display. I started my GPS app, and it began naming the streets we were crossing, as well as the street addresses. I had told the driver where I was going when I got on, and also that I was deafblind and could she tap my leg when we got to my stop? But by watching the addresses move by on my braille display, I could know if we were coming close to my stop, could remind the driver about my stop, and could know when we arrived. This is more information about the environment than most deafblind people have ever had.

I also use a Braille Note. It is a small device-- about the size of a net book-- and is akin to a PDA. I can do things like compose documents, keep an address book, and read trashy romance novels, all on my Braille Note. This unit can also act as a braille display for my iPhone-- using bluetooth, it will reflect what is on my iPhone's screen or the screen of my Mac, when requested to do so. I also use my Braille Note to facilitate face-to-face communication. When going to a store, or an office, I can ask the person with whom I wish to communicate to type their message on my Braille Note's QWERTY keyboard. The message then appears in braille. The unit also has a USB port for a keyboard for use to caption meetings when I can't get an interpreter. The Braille Note can also go on the internet but I don't use this feature much because I find the speeds faster using my iPhone. I can read books from
<"Bookshare">
on there. Bookshare's collection is growing every day, and I can read books on almost any topic using my Braille Note.

There are also programs designed for computers and cell phones, for people who have low vision which make the font larger and the colors contrasting for easier reading. All of the programs I described have speech, so if a person has remaining hearing, they can use that. Whether you prefer Mac, Windows, or Linux, you use a braille display or large print, there is a computer out there which can meet the needs of almost everyone.

Since the iPhone is gaining in use amongst the deafblind population, I would like to start a series of blog entries about apps which are usable by, and helpful for, deafblind people. I will start out with my personal favorites, but would love to hear from any DBP out there who have a particular favorite app!

The Difference Is Her

2011-07-14T23:36:00.000-05:00

This post is for the fourth
<"Assistance Dog Blog Carnival">

I really gave quite a bit of thought to the topic. I had several ideas, but then all unbidden-like, this post just sort of came out.
This entry is for Bristol, who is my retired guide dog. We will celebrate twelve years together on July 26th. Although she is retired, she is still my partner.

When I first met her, she was this tiny red ball of fluff with a black shoe-button nose, and brown eyes that shown with mischief and fun. She was so different from my first guide dog who had died suddenly of cancer earlier that month. Bristol was a young female golden retriever, curious about the world, in love with anyone who would pet her, and so demonstrative in her affection. Rhoda, my first dog, had been a food-loving Labrador who was independent and aloof. I soon grew to appreciate the differences about Bristol. She was a calm and focused worker, who wasn't distracted by anything but the occasional squirrel. A huge change from my flighty Rhoda, who lost focus so easily sometimes.
Bristol wasn't a healthy dog; she had several ear and skin infections before I threw my hands in the air; finally trying a raw diet and a natural rearing approach with her. People said I was "just doing it to be different," but it was honestly her last hope. I am so glad I made that leap with her. The changes it brought about in her health and happiness were incredible.

Bristol and I worked together for five years, until degenerative joint disease forced an early retirement. I can't even begin to describe the difference she has made in my life. She has seen me through college, a cross-country move, getting married, getting a new job, losing everything I owned in a hurricane, and then going deaf. She was there through everything.

Adjusting to the different lifestyle of retirement was very hard for both of us. She didn't understand why she couldn't work any more, and I wanted her at my side. The tide had turned, the seasons changed. After years of her taking care of me, I was now taking care of her. It was a different way of relating, but we figured it out together, just like we had done everything else.

She is thirteen and a half years young now. Her hair is white-- her eyes cloudy with cataracts. But if you look closely you can still see the gleam of mischief and curiosity in their depths. That and love-- always love. She has Hypothyroidism, Toxoplasmosis, uveitis, High Blood Pressure, and a back end which is frequently failing her more and more. She has also lost most of her hearing but still manages to know when it's time to eat.

I know she will not be here much longer. I know that soon I will have to let her journey on without me. I think about how different it will be without her-- how lonely and sad. I hold her close to my heart and wonder how I can miss her so much even before she is gone.

Because of the lessons she taught me, I am a totally different person then I was when we first met. I would hope that I'm kinder, and wiser. Heaven knows I'm the richer for having had the privilege of sharing my life, and myself with such a wonderful partner. She has been the difference in my life-- the whirlwind which caught me up in its young exuberance and now, slowing with age, is about to set me down in unfamiliar territory, and it's territory I'll be traveling with out her.

Bristol... again

2011-07-11T20:24:00.000-05:00

Yesterday Bristol lost the use of her only good remaining leg. It was very sudden and we aren't sure what is going on but it looks like a pulled muscle or a strain. It could also be a worsening of her degenerative joint issues. Yesterday I talked to my vet who advised giving Bristol extra Previcox. We did that, and it at least allowed her to climb steps by herself, so we did it again today. I spoke to my vet this morning and he prescribed Tramadol to be used as needed.
I came home to a totally different dog. I mean, yesterday she was honestly not able to walk. She was having horrible muscle spasms and it hurt to watch her walk on only two legs. I honestly thought I was going to have to let her go.

When I got home she was up and walking, and coming to say hello. Later I took the new squeaky chicken and was throwing it for Laveau. This is Bristol's new favorite toy, I think because she can hear it. She got up and came over to take it away from Laveau. Then she taunted me with it for a while and we played a very light (because I made it that way) game of tug of war. And yes, she won (wink!) Then Laveau came over and they lay on the floor together wrestling. Then Laveau accidentally knocked her over and I put an end to the playing.

Barb came over with the Tramadol and I let Bristol out to see her because I knew it would cheer her up. And it totally did. Barb said that she's favoring the left leg a little but she is walking on it. We're not sure if she's actually healing or if the meds are just masking her symptoms. We'll pull her off the extra Previcox and add Tramadol to the cocktail and see what it will do for her.

I really struggled with the decision of what to do for Bristol all day yesterday and into today. I don't want her to suffer, but at the same time I don't want to force her to eave before her time. I don't know when that time will be, but she still has such a huge love for life, and if she's willing to fight yet longer, then so am I. We'll do what it takes and then we'll do what is necessary.

This experience is really bringing home that every day is a gift. It's such a Cliche, but really it is. I have always tried to give thanks every day for all of my blessings, but this brings it into a whole new perspective.

I would like to thank everyone for their good thoughts, healing energy, prayers and for all of the support. Yesterday was one of the scariest days of my life and it helped to know that there were people sending us good juju.
I don't know what tomorrow will bring, but for today she is doing better. So I will just be thankful for that and let the future take care of itself.

Taken from "The Prophet" by Kahlil Gibran
Love

Then said Almitra, "Speak to us of Love."

And he raised his head and looked upon the people, and there fell a stillness upon them.

And with a great voice he said:

When love beckons to you follow him,

Though his ways are hard and steep.

And when his wings enfold you yield to him,

Though the sword hidden among his pinions may wound you.

And when he speaks to you believe in him,

Though his voice may shatter your dreams as the north wind lays waste the garden.

For even as love crowns you so shall he crucify you. Even as he is for your growth so is he for your pruning.

Even as he ascends to your height and caresses your tenderest branches that quiver in the sun,

So shall he descend to your roots and shake them in their clinging to the earth.

Like sheaves of corn he gathers you unto himself.

He threshes you to make you naked.

He sifts you to free you from your husks.

He grinds you to whiteness.

He kneads you until you are pliant;

And then he assigns you to his sacred fire, that you may become sacred bread for God's sacred feast.

All these things shall love do unto you that you may know the secrets of your heart, and in that knowledge become a fragment of Life's heart.

But if in your fear you would seek only love's peace and love's pleasure,

Then it is better for you that you cover your nakedness and pass out of love's threshing-floor,

Into the seasonless world where you shall laugh, but not all of your laughter, and weep, but not all of your tears.

Love gives naught but itself and takes naught but from itself.

Love possesses not nor would it be possessed;

For love is sufficient unto love.

When you love you should not say, "God is in my heart," but rather, I am in the heart of God."

And think not you can direct the course of love, if it finds you worthy, directs your course.

Love has no other desire but to fulfill itself.

But if you love and must needs have desires, let these be your desires:

To melt and be like a running brook that sings its melody to the night.

To know the pain of too much tenderness.

To be wounded by your own understanding of love;

And to bleed willingly and joyfully.

To wake at dawn with a winged heart and give thanks for another day of loving;

To rest at the noon hour and meditate love's ecstasy;

To return home at eventide with gratitude;

And then to sleep with a prayer for the beloved in your heart and a song of praise upon your lips.

A Team of Three

2011-07-09T10:25:00.000-05:00

This is a subject I've been interested in exploring on the blog for a while now. Heaven knows, many people are curious about it. Having multiple working assistance dogs at once-- why would anyone want to do such a thing? How does that work, and does it effect the "bond" with your dog if you have more than one? These are some of the questions I get asked pretty regularly.

I started off as a guide dog user with blindness being my only disability. For the first 4-5 years of my guide dog-using career, I only worked one dog at a time. I had a mild-moderate hearing loss and my guide dogs performed some very light sound alert work, but that was it. Around 2003, my hearing started to worsen, and after 2006 all bets were off. Not only am I Deafblind, but the inner ear disease which causes the deafness also causes some very severe balance and mobility issues. I also deal with chronic vertigo. This means that sometimes I literally cannot tell where the floor or the ceiling are. The vertigo effects my proprioception which is the body's ability to know where its parts are in relation to each other. Lets take feeding yourself as an example. People don't need to look in a mirror when they feed themselves because their body "knows" where their mouth is. Your hand has the fork, it lifts the food from the plate, and into the mouth. You don't need to look to know where your mouth is. My proprioceptive abilities vary from day to day. I've been in and out of intense physical therapy to try and improve these issues, but even at their best, they still have impact on my life.

All of that long and probably boring explanation serves as background to my need for two dogs. My dogs are now not only responsible for guiding me from point A to point B, but they need to serve as an aid to balance and mobility as well. Sometimes I cannot articulate direction at all. I try and avoid working my dog when I'm like this but the nature of my disease is that it fluctuates. I can be feeling just great, and the next moment be unable to stand independently. I usually have very little warning. When this happens, I need my dog to make decisions about where to go, to find me a place to sit so I can take meds, and to ignore me because when I try to give cues usually I'm pointing in the completely wrong direction from where I want to go. This doesn't even begin to cover the work my dogs do in the home. This includes alerting to sounds, retrieving dropped objects, bring objects from me to someone/somewhere else, loading and unloading bags/baskets/the dryer, and providing balance assistance or rescue work. There have been times when I've gone out into my own back yard to hang laundry and have then experienced a vertigo attack which leaves me unable to find my way back in the house. It is then necessary for one of my dogs to come find me, and lead me back inside. That is a lot of work for just one dog.

I live a very active life. I have work, community activities, my own home business to help run, and the regular life errands we all must do. This does not even take into account a social life. I like to stay as active as I can. Dogs who work for a person with multiple disabilities tend to burn out more quickly than a dog who has a less stressful job. If I had just one dog, she would be "on call" from the moment I got up in the morning, all day long, until I went to bed. Any time there was a sound, or if I dropped something, or needed assistance, she would have to come running. It wouldn't matter if she had just spent twelve hours out of the home with me, guiding and helping me stand upright. I don't think that's altogether fair to the dog. If I were more sedentary, it might be different, but I'm not.

I have an "inside dog" and an "outside dog." They each know the other's skill set to some degree. Although Laveau has a great deal of catching up to get to Mill'E-Max's level of "inside work." But in all fairness, Mill'E-Max has had more years to perfect it. Laveau does the guiding, balance/mobility and hearing work when outside. She accompanies me to work, and to other places in the community. She loves her job and is very good at it. But when we are done for the day, and the harness comes off, She is off for the night. She can play with the tennis ball, or with the other dogs, and just be "a regular dog." Mill'E-Max takes over inside. She goes into the kitchen with me when I cook, helps retrieve things or bring things to the table. She goes into the herb room with me when I'm making products and does the same. She does play with the other dogs and has fun, but the difference is that if I need her, she stops and comes to help me with whatever I need and then goes back to doing whatever she was doing. She loves her job. When I come in the door with Laveau, she is there to greet us, ready for her turn to work.

Occasionally I will take Mill'E-Max out and let her guide. This is because Laveau has some separation anxiety issues, and we are slowly teaching her that it is ok to be left home alone. I want to continue to work on her "being left alone" skills, so once a week or so, I take a trip with Mill'E-Max and leave Laveau at home. It is important to do because eventually (like in eighty years) Laveau will have to retire, and will need to be comfortable with being left alone at home.

As for "the bond" I don't feel any less bonded to Mill'E-Max who has always worked in tandem with another dog, than I did to Rhoda, my first dog who was my only dog for the entire time I had her. The bonds are different because I am a different person now, as compared to when I had Rhoda. Also, Rhoda was my first dog, and the relationship with your first dog is usually different because they were "the first" and you did a bunch of "firsts" together. I don't think the human heart has a finite capacity for bonding. Just because you work two dogs at once doesn't mean that your love for them is less because you are "splitting" the bond. We can love, and be bonded to, many different beings, for many different reasons, and in many different ways. Bristol and Gracy worked together in the way Mill'E-Max and Laveau work together now, and I never felt it harmed them in any way. In fact, I felt like it benefited them because it allowed them to share the responsibilities of helping me, and it gave them another dog friend.

Laveau, Mill'E-Max and I have a three-way bond. I love each of them and have a relationship with each of them, but they also love each other and have their own very special relationship.

It may not be "the norm" but it works for us, and as long as everyone is happy at the end of the day, that's what counts!

Why do you do it?

2011-07-04T15:24:00.000-05:00

Mister Pawpower's search for an assistance dog candidate has caused some interesting reactions and these reactions have made me think-- about myself, my reasons for owner training and how it is viewed by the larger assistance dog community. Until around five or ten years ago, it was not common at all for blind people to train their own guide dogs. It was done, just not by very many at all. Owner training was an option used more by persons with other disabilities. People who are deaf or hard of hearing, or people with mobility or medical issues were more likely to train their own assistance dogs. This is because programs which serve these populations tended to have a longer wait list, to have more stringent requirements for acceptance, and to require the payment of large sums of money for their services. A blind person could get a guide dog from a program in under a year after the first application, and more times than not, the dog was given with no fee owed. Guide dog programs didn't have rules about having other pet animals in the home, or other rules about keeping one's retired assistance animal.

However, due to several factors, more and more blind people have made the decision to owner train. I don't think most people understand that this decision isn't made lightly. Owner training is costly, both in financial and time resources. It takes a very specific skill set. The dog has to go through the process of training and the handler has to put in a great deal of focused, intensive labor. The dog could then wash out and the handler is back at the beginning.

Most people put serious thought and consideration into their decision, but many people seem to be asking my husband why? Why would he want to owner train? Why doesn't he go to a program?

I can't speak about Mister Pawpower's feeling and own personal choices. I am not him, and his tale is not mine to tell-- his reasons not mine to explore. However, I can give some general reasons why someone would want to owner train.

Many people owner train because they cannot attend a program. Perhaps their disabilities make attending a program, or working with a trainer from the program in their own home unmanageable. The person may have Multiple Chemical Sensitivities (MCS), they may have such a unique combination of disabilities and considerations that no program feels equipped to train an assistance animal to meet their needs. They may have work, family, or medical commitments which prevent their going away to a program for the specified period of time (usually a month).

Many programs have very specific rules. These programs put these rules in place because they feel it is in the best interest of the populations they serve, and the dogs they train. However, many people don't want to follow these rules. It is highly preferable to find another alternative than to submit yourself to a program whose rules you cannot or will not follow. Many programs reserve the right to repossess the dog if these rules are violated, and the horror and grief over losing your partner due to such a dispute would be much more painful than the impatience of a longer wait for an assistance dog either owner trained or from another program. An example of one of these rules is that some programs state that you may not have other pet, or retired assistance dogs in the home with your working dog. They have their reasons for feeling like this is an important rule, but many people have beloved pets and have managed to go on to have a happy working assistance dog partner and a pet or retired dog living together.
Many programs will not transfer ownership of the dog upon completion of the program. For me, personally, this is a huge sticking point. My choice of programs to attend-- already limited by being Deafblind and using American Sign Language as a primary means of communication, is even more limited because I will not submit myself to a program which will not grant me full and total ownership of my dog upon completion of the training period. People can argue with me until they are blue in the face about this issue, but my mind is very thoroughly made up. We all have "that one thing" which we will never compromise on, and for me it is ownership.

Some people do not want to attend a program because they have firm beliefs in certain training, and rearing methods. Out of necessity, programs have a pretty cookie-cutter approach to dog training and care. They do try to meet every dog's needs, but most dogs will have their needs met-- both behaviorally and physically-- by the training/rearing method of choice. Again I can speak from personal experience. As a clicker trainer and a big proponent of Natural Rearing; it is extremely important to me that my dogs be fed a raw diet as soon as possible, and that they be minimally vaccinated, and treated using a blend of standard medicine and herbs. It is also extremely important that my dog be operant. This means that the dog has realized that she can operate on her environment and that the clicker or other marker has been established as a tool for communication. Many programs use it as a behavior marker, but clicker training is so much more than the clicker. It is a way of thinking-- for the person, and their dog.

Finally there are people who honestly enjoy the process of owner training. I'll grant you, we are few and far between. There are many good reasons for this-- see the part about intensive work above. But we do exist, and for us, it is a true passion and enjoyable experience to train dogs to this level.

The words "harder" and "easier" are very subjective. When people ask Mister Pawpower, "wouldn't it just be easier to go to a program?" They are speaking from their subjective view of what is "easy." For many, it is "easier" to train a dog themselves then to risk exacerbating medical issues, leaving home for a month, obeying rules which chafe, or which go against your grain. For the majority of the folks out there, this is not true. But there are always exceptions.

Nellie Zimmerman

2011-07-03T10:34:00.000-05:00

This last week was National Deafblind Awareness week. I wanted to post about one of my Deafblind heros. I'm a day late, but we'll just say I'm running on Deaf Time!

Earlier this year, I picked up a book entitled "Walking Free; The Nellie Zimmerman Story." It was written by Rosezelle Boggs-Qualls and Darryl C. Greene. It tells the story of Nellie Zimmerman who was born in the early 20th century.

Nellie was born sighted and hearing, but lost her hearing as a child. Her father advocated for her write to be educated, and even though Nellie was denied entrance to a public school, he hired a governess to educate Nellie at home. This governess taught Nellie the manual alphabet; what most people call "finger spelling."

Nellie began losing her sight as a teen, and was able to learn braille before becoming totally blind. She lived a very happy and peaceful life until the death of her father.
Upon her father's death, Nellie was shuttled from one family member to another. However none of these people could finger spell. They treated her like baggage; moving her from here to there without explanations, or a word of kindness.

Eventually Nellie ended up in a state hospital where she lived for eighteen years.

Imagine it, for just a moment. Not being able to see, nor hear, not being able to communicate, not having any control. She was effectively imprisoned for eighteen years for the crime of being deaf and blind. Eighteen years is a very long time, countless minutes, hours and days surrounded by strangers-- many with dementia or other illnesses which frequently made Nellie a target for abuse.

Eventually Nellie was able to establish communication with a woman who knew the manual alphabet. At age seventy-one she was freed from the hospital and began to live her life in the free world.
Nellie went on to attend college, with the assistance of her SSP and friend Emily Street. She eventually got a job teaching activities of daily living to Deafblind boys.

When I think of someone whom I should strive to emulate-- one of the people I'll always think of first is Nellie Zimmerman. She could have just let herself go, once confined to the hospital. However she continued to stay active, even if those activities were limited to reading her braille Bible and doing complex math problems in her head. She kept herself sharp and continued to hope. At age 71-- when most of us willingly slide into our retirements-- she began attending college for the sheer love of learning. She made friends, attended parties, and went dancing.

Nellie Zimmerman is a great example of a Deafblind person who made a difference. Her life serves as an example that it is not Deafblindness itself which is the problem-- it's lack of understanding and unwillingness to communicate which are the barriers for Deafblind people world wide. If her family had only taken the time to communicate with her-- to learn the manual alphabet-- her life would have been so different. But it wasn't to be, and rather than wallowing in misery and "might have beens" Nellie lived her life in the moment-- looking toward her future.

Deafblind Awareness Week

2011-06-28T22:31:00.000-05:00

This week is Deafblind Awareness week. But for me, and for the many people I meet every day, it is always Deafblind Awareness week/day/moment. I sometimes feel like my life is a lesson in awareness.

It has its good sides. I would hope to think that when people see me in public, doing regular things like shopping or having coffee that they will one day, just think of me as a regular person who happens to be unable to hear or see. Everyone has things that they cannot do, some are more obvious than others. I would hope, through mine, and others actions that we can show that people who are Deafblind can work, go to school, have families, and all of that.

But sometimes, sometimes I just want to be unremarkable. I wish people weren't so "aware." Of my braille, my dog, my ASL, my difference. I sometimes wish that I could spend time in public without some curious person asking me questions, invading my space, or making stupid inane remarks like "I think sign language is so beautiful! I love watching people sign."

I know they mean well. I know that when people think of Deafblindness, they think of Helen Keller and Annie Sullivan, and how does their life-- lived almost one hundred years ago-- fit into our world today? People want to know things. How do I cook, or schedule doctor's appointments, or cross roads. They want to watch me texting or reading braille, or chatting with friends in ASL, not because they are mean, but because it is new and different and "interesting." In this day and age, our society thinks that they have the right to learn and know anything about anybody. Look at all of those reality television shows, the blogs and the twenty-four-hour news coverage. We are a nosey society who believe that we have the right to ask-- to know-- and that privacy is not meant for those who have lives which are different from the norm.

I try, in my personal life, in my work, and in my community efforts, to educate, to advocate, and to continue to grow as a person. But sometimes being aware of deafblindness means being aware that your attention, your questions, your comments, aren't always welcome. If a person wants to know how a Deafblind individual crosses a road, they can look it up on Google. Which isn't nearly as interesting as asking me directly and watching my conversation partner interpret their words into my hands. But if it's truly information being sought, there are a wealth of resources out there. There are even Youtube videos of tactile ASL. Use these resources and educate yourself if you are so inclined.

I don't mean to come off as a grouchy curmudgeon. But if I could make people "aware" of just one thing, it is that I'm a regular person, just like someone who is sighted or hearing. That I'm out in the big world, trying to live my life as best as I can, and that I'm not some kind of carnival freak show exhibit to be stared at, or remarked upon. Be aware, use consideration, think!

The Last Part

2011-06-27T19:30:00.000-05:00

I'm home, actually and truly home. The last train ride lasted about 23 hours, and the train was late pulling into the station in Charlottesville, of course.

Then I didn't have a seat on the train until around Midnight so sat in the observation car doing some email checking and observating, and stuff.

Around 4 am, a person or people came on with a screaming infant. I took my hearing aid out and was very thankfully oblivious. Because if there is one noise which turns me into a quivering ball of hysterical, babbling insanity, it is the sound of babies screaming. This is why I do not have human children. I took out my hearing aid and it was quiet and lovely. Apparently the kid screamed basically non-stop for four hours. I read, and did word searches, and twittered and basically smugly laughed at everyone else who had to suffer. Because I'm mean!

Laveau knew we were going home so she refused to pee, and was very determined to save it all up for a big pee festival in the yard. Which is what she did.

But I should go back and talk about my time in Charlottesville.

I went to my first chicken swap. This was a thing where people pulled up to a tractor store in Culpepper, VA. and tried to buy, or sell, or trade their chickens. Oh and a turkey; I can't forget the turkey. I had never actually touched a live turkey, so the owner let me touch him. He was very large and feathery and I could kind of hear this weird loud noise which was him making that gobble noise. Laveau spent the time in
<"Andrea's">
SUV with Sid her SDIT. Sid actually hopped into the driver's seat and was trying to grow himself opposable thumbs while searching for the keys. Laveau stayed in back with her head out the window, keeping a look out for people who would catch on to their plan. She only confessed the entire thing to me after we left.

The two dogs, and Andrea and myself went into the tractor supply store, because I'd never been in one and being a city girl I wanted to be able to say that I went into one. I also wanted to buy a present for the dogs. Laveau was sniffy and a pain in my ass and we had to have a conversation about sniffage.

I bought Bristol a chicken made of this rubber stuff. He apparently has a very loud squeaker and I can sort of hear it if my hearing aid is in. I think Bristol can hear it. We have named the chicken Fricassee.

We eventually packed up and went back to Andrea's house where Laveau barked at the cats and stared rudely at them. We don't, and never will have, cats so her exposure to them has been limited to outside distractions. So she was very weirded out that cats actually live inside, in people's houses, and that these cats-- namely Braxton the Enforcer and Roo, weren't afraid of her and that in the case of Roo, climbed on me and I let them.
To get even with me about the cats, she rolled in the pool, then in the dirt, thereby covering herself in mud. Andrea very sweetly groomed her for me so she looked like a sort of respectable service dog on the train.

The night before the chicken swap I stayed with
<"Christine">
Who was a fantastic sport about hosting a strange lady and her strange black dog in her house. Christine also has a cat, Cairo, and what's more, Cairo knew that he weirded out Laveau; so his mission was to get her to snuggle with him. Laveau refused and would bark at him, get off of the bed or where ever Cairo was, and stomp away to lay across the room grumbling, and giving him that Doberman eyeball. Cairo went after her. She didn't know what to do with this thing which walked like a dog but which was not a dog. Christine also had German Shepherds and Laveau did know what to do with them-- play. In the pool, in the grass, in the house, and where ever. She played herself stupid with Sid and with other GSDs which explains why she slept like a dead thing on the way home and why she's been fairly lazy today.

It's kind of exasperating that the only people who have the dogs which can tire out Laveau live clear the hell in Virginia!

We got home last night and Mister Pawpower had bathed Mill'E-Max and Bristol so they were all soft and cuddly. Well Mill'E-Max was refusing to cuddle for a while because I went and left her, and she is not so forgiving as all that. But she helped unpack the suitcase and that went a long way to making her feel better.

Today I did not go to work because I didn't get to sleep until like, I don't know the butt-crack of the middle of the night last night.

Today I did laundry, and hung clothes out on the line. Then it rained because the universe likes flipping me off.
We took the pack on a walk because we are on a serious mission to strengthen Bristol's hind end. She seems to be doing great on the every-other day schedule of Previcox so we'll leave it at that for now.

Tomorrow I need to actually work and not lay around. Wednesday I have to actually go back to my grown-up job. Le Sigh!

Tonight, I'm going to try and recreate Skyline Chili which is a very yummy and unique kind of Chili I had when I was in Cinci with Jen. We are even having garlic bread with it because I'm on a bunch of steroids from the shrimp thing and OHMYGODIWANTCARBSNOW!
So... I'm off to do kitchen bitchery stuff with my Kitchen Bitches!

Life's Little Detours

2011-06-24T22:23:00.000-05:00

So... life has this funny way of happening, y'know?

I left the AADB conference Thursday afternoon headed to Cincinnati to visit my friend Jen and her guide dog Nora. We spent a lovely evening together, eating Skyline Chili, and Ice-cream, and playing with dogs. I hopped on my train out of cinci at a bit after 3 am.

Our train was delayed coming into Charlottesville, VA. Instead of arriving at 2:45 I arrived around 4.
Andrea from
<"The Manor of Mixed Blessings">
fetched me from the station and we went to her friend's house for dog snuggling, and barbecuing. Laveau had a blast meeting all of the new dogs. She has decided that Andrea's SDIT, Sid is her new loooooooove!
We called Amtrak and they said my train was late and would leave by 9:15. Since all of my trains have been late, this wasn't surprising to me.
So we sat around, ate and drank, and threw the ball for the dogs.
Then we harnessed up the pups and drove to the station in time for the 9:15 train, only to find that it had left ten minutes earlier.
Soooooo.......
I'm kinda stuck in Charlottesville until I can get a train out of here. Dunno when that will be, exactly. I'm so punchy right now that I'm not too worried about it ... yet...

Laveau is having a blast, I am curled up in bed with Cairo the Cat and some lemon cookies.
I will update as things progress.

End of Week Updatage

2011-06-22T23:01:00.000-05:00

Today was my last full day at AADB. Wow! How time has just flown by so quickly.
This morning I tested a prototype of a braille captioned radio. It was amazing!!! I mean totally amazing.

It was a braille display hooked to a small digital radio via a USB cable. The first three cells of the displays were used for things like to change the channel, to modify settings, and to check for emergency alerts. I read some radio stories, navigated throughout the menu system and was shown an alert and how the system responds when there is an alert. It was amazing, but I think I've already said that! Deafblind people who are braille readers have not had access to this type of emergency alert information in the past.

The radio works with NPR stations. When I was hearing, I loved NPR! I was a huge fan of shows like This American Life, A Prairie Home Companion, and All things Considered-- not to mention Car Talk. All of this program will be available to me using a captioned radio once the finishing touches have been put on the product. I signed up to be a tester for the first radios that come out so I can see radio shows every week and test how the system functions. The entire experience was amazing! I cannot wait to be able to have a captioned radio. It will work with any braille display and a digital radio with USB. So I can use either my Apex or my Sync Braille to run it. Digital radios come in very small sizes so it is very possible for a Deafblind person to take their radio with them and have access to the radio when traveling. This is just fantastic.

I bought pizza for my SSPs this afternoon and we had a pizza party in my room. Then I went to the AADB business meeting but didn't stay long. I had a nap, then went to dinner with a friend.
However I was chatting with someone who had eaten something which had been cooked in the same oil as shell fish. So I had to leave and go take meds. Thankfully I recovered quickly. I got to meet a student who is currently attending HKNC, and that was interesting.

Tomorrow I am checking out of the hotel, attending the AADB awards lunch, going to an update by a man who works for the FCC, and then I'm leaving the convention.

A friend of mine lives in Cincinnati and I haven't seen her in forever so we will spend time catching up, and I'll hop on the train at 3 am on Friday. Tonight is my last sleep in a real bed until I come home to my pack in New Orleans.

I will update perhaps from the road!

Chicago Pictures

2011-06-22T10:49:00.001-05:00

are up
<"HERE!">

Thanks to my friend Nahrain for being such a fantastic photographer!

The first half of the week

2011-06-21T22:27:00.000-05:00

I realized that I haven't updated since Sunday, but my arms are so sore from all of the tactile ASL, that typing is not on my list of "must do's." However, I want to write this all down before I forget. So where I left off...

Monday morning, my SSP and I went to breakfast. While we were eating, my SSP got a call that a family member was dying so she needed to leave abruptly. I was then matched with three new SSPs.
I went to a workshop on accessible braille e-books. The presenter talked about Bookshare.org, National Braille Press, and the National Library Service's Web Braille program. After that workshop, we went to lunch.

After lunch, it was time to take a tour of the exhibit hall. This is a big ball room full of vendors from various companies selling everything from Braille PDAs, to jewelry, to portable VRS units. I made it about half way around the room before getting stuck at the table for the Helen Keller National Center for Deafblind Youth and Adults (HKNC). The lady at that table had never seen an iPhone before paired with a Braille Note Apex. I took out my iPhone and braille note and several people gathered to watch. The lady from HKNC took videos of my demonstration. I tried to not sound like an idiot. I had left Laveau in the room because I was worried that the hall would be crowded, so after my demo, I went back to get her.

By this point I really needed to get out of this hotel. My SSPs and I walked to Oriental Wok for dinner and I had yummy fried rice and veggie spring roll! We had fun chatting and eating. After that I went to bed.

This morning I went to a three-hour long workshop on various types of assistive technology for Deafblind people. Topics covered included screen readers for both Mac and PC, various screen enlargement solutions for DB people who are low vision, and braille displays. In the second half of the workshop, they talked about various mobile options for DB people including Deafblind Communicator (DBC), made by Human Ware, iPhone, iPad, and Windows Mobile Phones running Mobile Speak. We also learned about stand-alone money identifiers, and color identifiers.

After that long workshop my arms felt like they'd fall off from all of the tactile interpreting. My SSPs and I went to lunch at another restaurant outside the hotel-- this time Mexican. I had nachos and they were delicious.

I came back and had a nap before going back to the exhibit hall, and then to dinner. Geez, this blog makes it seem like all I do is eat and look at technology. lol!
After dinner which was a huge salad, I went to the grocery right quick for more iced tea. Then we came back and went to a pool party where I chatted with some people and swam.

Now it is bed time. Tomorrow I'm testing out a new braille captioned radio from NPR. I'm very excited as when I was hearing, I loved NPR and I really miss listening to it. After the NPR thing, I'm going to the technology lab because many of the devices discussed in today's workshops are at the lab. There are some new braille displays I have yet to see, and I must remedy this-- big geek that I am!
After that is a general meeting of the delegates from AADB in the afternoon. Tomorrow is my last full day here at AADB as Thursday I'm leaving in the afternoon to meet a friend from Cincinnati, and then my train leaves around 3 am on Friday morning.

I am really having a blast so far!

The Journey Begins

2011-06-19T22:07:00.000-05:00

I made it to Kentucky in one piece, mostly.

Friday afternoon, Laveau and I hopped aboard the train. We had a sleeper car on that leg of the trip and immediately we met two ladies in the sleeper across from ours. We spent the evening with them and their two grown children. We ate dinner, and spent time in the observation car.

I tried to get some sleep but sleeping on a train brings a whole new meaning to the phrase "tossing and turning." Laveau slept on the foot of the bed, where she could look out the window. She immediately fell asleep while I lay there listening to old Golden Girls shows on my iPod. Eventually I was asleep, and then the train went down what felt like, a very steep hill. The feeling of tilting at such an angle woke me up, and awake I stayed.

The train was an hour late arriving into Union Station in Chicago. I got off the train, and was immediately greeted by my two SSPs for the day, Colleen and Maggie. We first found a locker for storing my luggage for the day. By then we were joined by a friend of mine who is also DB and who lives in Chicago. We took Laveau to pee, and she actually went!
We walked to a local pizza place for lunch, where were joined by yet another friend of mine and her guide dog.

I was having quite a bit of vertigo; I could still feel the train moving beneath my feet! I was pretty nauseated so took meds, and they kicked in just in time for me to eat a huge slice of Chicago style veggie pizza. It was really good. We spent time just chatting, and eventually decided to go see the Bean statue in Chicago's Millennium Park.

The Bean is a giant (and I mean huge) bean-shaped statue covered in reflective metal. I was able to see it once I stood in a place where the Bean blocked the sun. It was amazing. My friend took tons of pictures.

Then we went to a fountain near by. You can sit on a dock thing, and put your feet in the water. I took off Laveau's harness and let her jump into the water. She loved it, but we got busted by the park security because dogs aren't allowed in the water, even if on leash. So poor Laveau had to get out, but she was very happy to be wet and a bit cooler.

We put our shoes back on, then went to yet another fountain. This one was a giant wall of water, coming down from above. Like a giant shower (a very cold shower). I took off my backpack, and my hearing aid, and went with one of my SSPs and Laveau into the heart of the fountain. Like I said; it was cold! I was soaked! Laveau was pretty wet herself. It made me glad she wears a nylon harness!

After we got out of the fountain, we took the El train back to Union Station because it was time for me to continue my trip to Kentucky.

My time in Chicago was wonderful. Both Laveau and myself enjoyed it so much. I met another DB person on the train. We road together and spent time chatting. It was nice to have someone to talk to. Laveau slept like a rock!

The train was delayed a few times, so we arrived in Cincinnati about two ours passed our original arrival time. We found a number for a cab, but they wouldn't accept relay calls. The person I rode with found another cab number, and they sent a driver.

Who was an idiot and tried to deny me access to his cab with Laveau. By this point I hadn't slept in over 24 hours, I had traveled for a day and a half and I was not going to be left at the train station by some jackass who does not know the law. I tried explaining about the dog, and the law. This guy was from here, so he had no excuse not to know the law or not to understand me. Here is our conversation:
Me: "You have to take her, she's a service dog. Do you know what a service dog is?"
Driver: "No."
Me: "Do you know what a guide dog is?"
Driver: "No."
Me: "Do you know what a Seeing Eye dog is?"
Driver: "uh..... uh... I think... I think I've heard of one before."
Me: "Ok, she's a seeing eye dog. You have to take her."
Driver: "It's against the law to have dogs in the cab."
Me: *internally swearing*
Me: "You are violating federal law by denying us access. It is against the law for you not to provide me access to your cab with my service dog." Driver: "Are you blind?"
Me: "Yes!!!!!!!!"
Driver: "Is that a Looker Dog?"
Me: "Yes!! She is a looker dog!"
Me: *thinking to self... "looker dog???"*
Driver: "Well why didn't you say that! I can take looker dogs in my cab."

So I didn't have to kill him and take his keys after all! We hopped in the car and drove to the hotel. By then I was exhausted so I quickly checked in and went to bed with my looker dog.

Just a side note, I thought, being from New Orleans, Laveau would be a Liquor Dog; not a Looker Dog. And to think, for all these years, I've been blaming her for drinking all of the brandy in the keg she was supposed to be carrying around her neck. It's not because she's a lush that she doesn't have brandy, it's because she's a Looker Dog, not a Liquor dog!!

This morning I woke up, farted around on the internet for a while, then went and got my registration packet. I met an SSP from Ohio who took me in his car to get food for Laveau. I needed a refrigerator in my room because my growth hormone needs to stay cold, so there was plenty of room in there for Laveau's food. However I forgot we're not in New Orleans any more, and they didn't have things like turkey necks and pig feet! So she's having ground turkey and beef.
After we got back from the store, I took a nap because I was still so tired.

Then I went to the AADB opening ceremonies which were wonderful.

This hotel is like a maze. I keep getting lost. Tomorrow I have workshops and the exhibit hall. I'm meeting my SSP for breakfast at eight am.

I think I'm going to crawl into bed and get some shut eye. Tomorrow is going to be a long day!
It is great to be here at AADB!

The Pawpower Pack is Packing

2011-06-16T17:15:00.000-05:00

I'm starting to pack for my trip. Tomorrow, I get on a train to go to the
<"AADB Symposium">

I am taking the train and for some reason, known only to the higher-powers at good ole Amtrak, I have to go from New Orleans, to Chicago, then back to Kentucky. Yes, I kind of boggled over it for a while but decided to Carpe Shar-Pei (seize the wrinkled dog) and make the best of it. I wrote to a lady who works at the Lighthouse for the blind in Chicago who is, herself, Deafblind. She teaches a class about working the deafblind people. Two of her students will be my SSP for my 8-ish hours in Chicago. This is so fantastic and generous, and makes the entire experience so much easier.

I am also meeting friends in Chicagoland for pizza, some walking around and perhaps (if it doesn't rain), the beach!

I arrive in Kentucky on Sunday morning and stay there until Friday. On my return trip, I have a layover in Charlottesville Virginia where I will get to meet the krew from

<"The Manor of Mixed Blessings">
I have known them online for a few years now and I can't wait to meet the entire gang! I want to pet all of the dogs and see if Laveau or Sid can get to the ball first. We shall, most likely, go to dinner at a restaurant, and terrorize people with our big, scary black hounds.

But before I can get to all of the pizza-eating, beach-going, symposium-attending, and dog-groping I must pack. This is a chore which will test my patience to its limit. Because you see, dearest reader, my dogs brains fall out the moment I remove the suitcase from hiding. They know that the suitcase means travel, and all of the dogs are just sure I will come to a bad end if I do not take them to travel with me.

Usually it goes something like this:
*take out suitcase*
Laveau: "Ohhhh! We go! I will lay in the suitcase so she will have to take me with her!"
Gracy: "I will take the suitcase and hide it because I don't want to go anywhere, and I do not want her to go anywhere, and why can't we all just go out into the yard and kill small rodents!"
Mill'E-Max: "Oh! we're going! Do you need to pack? I'll help you pack! Here, do you need this shirt? What do you mean no, that it's dirty and put it back in the hamper. You are wrong and I will pack it in the suitcase for you. What are your slippers doing in the suitcase? You don't need them in there. Here, I will take them out for you once Laveau gets up from on top of them. Oh look, you are packing treats! Can I have treats? No? Will you give me treats if I bring you my water dish and put it in the suitcase? You will need the water dish if we are going to go on vacation. If you can't take the other dogs, you can just take me because I'm the smartest and most helpful and you will regret it and be sad if you do not take me, and I don't want you to be sad, so take me!"
Bristol: "I love you! I really, really love you. See how closely I'm sticking to your leg? This is so you can't leave me behind. Think of how lonely you will be if you leave me behind. And guilty... you will feel guilty because I was a Jewish mother in my past life and know how to lay on the guilt. You should take me, because if you don't, you will break my heart and that will be on your conscience forever. We wouldn't want that, would we?"
See? It's kind of a mad house once the suitcase comes out.
So I've been putting it off for as long as possible. Today, I found out that I won a new suitcase at an employee appreciation lunch at work. I wasn't actually at the lunch because they were serving shrimp and seeing as how shrimp makes my throat close; I thought it most advisable to stay away. But I won a new suitcase, and my boss is bringing it over shortly, and then it will start, and I don't know if I'll make it to the train without extra weight from a stowaway, or three, in my luggage!

Bristol Update

2011-06-13T18:59:00.000-05:00

This morning Brissy seemed a bit better but I took her in anyway. Her hind end is pretty weak; this isn't new. However she's not putting weight at all on her right hind leg, using her left hind leg to compensate. Her hip joints have a lot of bone on bone rubbing, and her muscles are wasting in that area.
My vet put her on Previcox, which is a Cox II inhibiter. And before someone comments with the laundry list of evils caused by these drugs, just do me a favor and save your breath because there is nothing anyone can say that I haven't said to myself. Right now it's about her quality of life. She can't continue living like this-- I won't let her. If these drugs which make her more comfortable do cause other problems, we'll deal with it. But getting the pain and inflammation under control is the most important thing. I have fought like a devil to keep her off of these drugs, and my vet said that most dogs start them when they are around 10. To be a 13 year old dog and needing to finally take them is good; it means she's been doing well. It's what I have to do for her and if they make her hurt less I will gladly give them to her.

I know she's old, I know she probably doesn't have years left. I know that by all rights she shouldn't even be alive after everything she's been through. But she is, and I want to make her last time here as comfortable as I can.

This is so, so hard. I would take the pain myself if I could, I would give her years off of my own life if it would make her body whole again. I will do whatever it takes to keep her comfortable and happy. When I can't do that any more, or if she wants to go, I will then make the choice to end her suffering.

She is still so full of life and vitality. She is interested in meeting everyone around her, in walks and food, and playing. She isn't ready to leave just yet.
This is the dog who has been my emotional loadstar for the last twelve years. This is the dog who has put her 40 pound body between me and an on-coming vehicle more times than I can count. This is the dog who went to college with me, moved across the country with me, traveled many unfamiliar roads with me. She walked me down the aisle when I was married. She walked me to my first job as a grown-up. She was there in the dark of the night when my fears and worries got the best of me. She was there when I lost my house, my city, everything I owned, and later my hearing. I still was rich beyond measure because I had her.

And I can't do anything for her but give her pills and make her comfortable. I can only take her out to the dog park, and to the snowball stand on her good days. I can only put her on my bed, in the coolest spot, and sit beside her on her bad days. I can give her release when it's time. It seems like I got the better end of the deal in this relationship.

If the meds don't work, then all bets are off and we won't have much time at all. I can only hold her, tell her I love her, and hope that the universe grants us just a little bit longer together.

Bristol

2011-06-12T22:20:00.000-05:00

This evening Bristol stopped being able to climb up and down steps independently. She can do "down" better than "up" which she can't do at all. She is walking slowly but fine, still interested in food and what's going on around her.
I'm taking off work tomorrow morning to run her into the vets. I'm trying not to think the worst but not doing well at that.
Please send her prayers/good juju/happy thoughts.
Thanks

The Swampy State of the Pack

2011-06-12T18:58:00.000-05:00

What a weekend it has been. The pre-trip insanity has already started, and add to that a healthy dose of technology malfunction and I've got a lot of balls in the air.

Not only that, my Vet and I had a conversation on Saturday about the medication Laveau is currently taking to control her spay incontinence. This medication is having some undesirable side-effects, and also has some very scary risks associated with it. I'm currently weaning her down off of the med and when I return from my trip, I will begin to try other methods of controlling this issue. Karyn over at
<"Through Guide's Eyes">
Has been helpful in brainstorming with me about possible alternatives. Although I'm glad to know about these problems, and feel a pressing urgency to find alternatives to correct them, it's an additional stress on top of an already stressful load.

I'm very much looking forward to my trip to the AADB symposium in Kentucky and hope that it is a fun, and relaxing time for both Laveau and myself. I am going to try to blog while on the road, and look forward to many adventures.

In other (and hopefully happier) news, Mister Pawpower has decided that he'd like to begin the search for his next assistance dog candidate. He is hoping for a puppy between 4-6 months old. He'd really like a Doberman or a Chesapeake Bay Retriever. He's keeping his options open and has contacted some breeders. It is not a time sensitive thing, and it's better to take his time and choose a candidate he feels will succeed, rather than rush in and pick the first dog offered. I, myself, always hate this part of the owner training process. Give me a dog of sound body and temperament and I can train it. It's the selecting of the dog that makes me twitchy.

That is all of the news from our neck o' the swamp.
Hope everyone is staying cool!

New Threads

2011-06-08T20:58:00.000-05:00

Laveau has needed new gear for some time now. Her harness is hanging in there alright but she really needed a new service vest for carrying things like medical information, my EpiPen, and wallet. Mister Pawpower who is the mastermind behind
<"Pawpower Creations">
wanted to take a crack at making a service cape for her. I wanted it to be purple, with black and white zebra stripes (I love zebras)!
He made a beautiful cape which is not only really sharp looking, but is roomy and comfortable.
You can see
<"Pictures">
of the cape on my FlickR page. One of these days, someone needs to tell me how to put pictures into my blog itself!

Once the cape was made, a friend of mine embroidered "PawPower" in pink thread on the top, and "Service Dog" in white thread on the bottom. It looks really colorful and awesome!
Just in time to show it off at AADB! Mister Pawpower is working on her matching harness and will hopefully have that done soon.

The Language of Loss

2011-06-07T18:17:00.000-05:00

These last few weeks have been so very hard with Rudy being gone. But sometimes it seems it's the people I speak to the most who make it harder. I wanted to write this blog post, not as a rant, or a means of finger-pointing, but to explain to non-service dog handlers about how it feels after you lose your beloved partner.

If I had a dollar for every person who has asked "Have you guys found a replacement for Rudy yet?" I could retire to France with a dozen dogs. People seem to have no inkling what so ever that this question is offensive and hurtful. I understand the intent behind the question. The person wants to know if we have found a successor to train for Mister Pawpower.

A service dog is not an inanimate object that you can "replace" when it wears out or breaks. It is not that simple. The bond between a person with a disability and his/her SD is something unique and very special. It is different, much, much different than the love you feel for a pet. This dog has been with you more than anybody else has. This dog has stood between you and danger; frequently risking their own lives to ensure the handler's safety. These dogs are, for some, a lifeline to independence.

When an assistance dog partner looses their SD, whether to death or retirement, it is very difficult. The handler experiences a complex set of emotions; everything from sadness to anger, to guilt, to relief in some cases. Each person is different in the way they experience loss. Some folks, like me, find that they do better if they find an appropriate dog to work with as soon as possible. Some people go years between dogs. Some people only have one SD and then never have another because the loss was just too hard and horrible. They don't want to experience such grief again.

There is no "right" or "wrong" time to get a dog. People from the outside looking in, have absolutely no room to judge, nor to comment. It is normal to be curious about a person's feelings regarding another dog. But I'm asking you, please be very careful and aware of the language you use when asking about a possible next dog.

If the handler does decide to get another dog it is never, ever a "replacement." A dog isn't a pair of shoes or a computer. A dog is a life; special and one of a kind. A better way to phrase this question is:
"Are you interested in acquiring a successor dog?"
or:
"Have you thought of getting another dog, or are you not ready?
Acknowledge that the new dog is not the old, is not a "replacement." Also understand that the person might not even know if they want another dog, they may not even be ready to have this discussion yet.

This is ok, it is ok because the choice of acquiring a successor dog or not, is very personal. If the person answers your question, don't judge their answer. I know it's tempting to say something like:
"You might do better with another dog, it might help."
or:
"You may want to wait a while before getting another dog; maybe a dog isn't right for you any more."
It is nobody's place to judge, or to give advice, unless specifically asked by the handler to give it.

You may have experienced pet loss, and may think you are helping the person feel better by comparing your loss of Fluffy your favorite Chihuahua to the loss of the person's service dog. As I said above, pet loss is different than losing a service animal. Not harder, or easier; those aren't my value judgements to make. It is very different and comparing pet dog loss to service dog loss is like comparing apples to socks.

I need to be honest here and say that I'm very much struggling with feelings of anger right now every time someone uses the phrase "replace the dog." I am also frustrated because some of the people who use this phrase are close to me, and Laveau. They were also close to Mister Pawpower and Rudy. How, after seeing a service dog team work in partnership can they turn around and simply use a word like "replace?" It really hurts, and what's more it hurts Mister Pawpower which makes me even more upset because he is already hurting enough.

I would ask people to please think about what they say before they say it. A moment of forethought counts for more than an hour of apologies.

The State of the Pack

2011-05-29T08:39:00.002-05:00

It has been a very hard and sad week. Also probably one of the longest weeks in recent history. We still miss Rudy every day. Our house seems so strange without him. On Thursday we got his ashes back and it was really sad.

The other dogs have had a really hard time, especially Mill'E-Max. She was with him when he died and she was very upset. So upset that she stopped doing hearing alerts in the home. I took her with me when I went to a doctor's appointment on Wednesday and she alerted then, but that has been all. She was also refusing to retrieve for the first couple of days but has now returned to her work as our "House Elf." I'm sure with time and some positive reinforcement, she'll begin alerting again as well.

There is some excitement on the horizon for Laveau and me, however. On June 17th, I'm leaving to attend the American Association of the Deafblind's symposium, which will be held in Ft. Mitchell, KY. I'm taking the train since my ears are too damaged to adjust to pressurized aircraft. The train will take about thirty-six hours each way.

On the leg of the trip going to Kentucky, we have a seven hour layover in Chicago. Yes, it's kind of ridiculous that I have to travel through Chicago to get from Louisiana to Kentucky, but efficiency has never been Amtrak's strong-suit. Returning to New Orleans, I have a Layover in Charlottesville VA.

I'm actually excited about these layovers because it means that I can meet internet friends who live in these cities, and because I always love going new places. We have a sleeper car from New Orleans to Chicago, but the rest of the time, we'll be in coach.
Ft. Mitchell KY. is right on the boarder and is very near Cincinnati, OH. I'm excited to see both cities. If you are in these areas and want to meet up, leave me a comment. Also if you are going to the symposium and want to get together, let me know and I can give my number for texting.

I've already started making lists of "must haves" and have gotten a new bait bag and some really tasty treats for Laveau to have on this trip. Now I just have to work out her food. Laveau eats a raw diet so this always takes some advanced planning. :)

I hope everyone is having a great Memorial Day Weekend!

Doing the Math

2011-05-21T08:06:00.001-05:00

In our house, everything comes in 4's, or in multiples thereof.

4 dogs
64 nails to clip
8 ears to clean and check
4 heads to count at bed time
4 cold noses prodding us toward the fridge for breakfast in the morning.
Treats and perfect bones and chewies all come in multiples of 4.
Flea and Heart-worm preventive do, too.
2 harnesses rest on the cupboard out in the front room.
4 crates are scattered throughout the house.
There are the 4 spots around the kitchen table, everyone has a place, and everyone in their place come meal time.
... and now it's not that way any more. We are suddenly counting in multiples of three. When you live your life in multiples of 4, multiples of 3 is so wrong and unnatural. I like 4, 4 is a good number. 4 means health and safety and family and that everyone is ok at home, with us, where they belong.
But now there are three. And three is a very small number, so much smaller than 4.

All About Rudy

2011-05-20T20:01:00.001-05:00

I meant to write this post several days ago, but life got in the way. I'm writing it now because today I learned that life is short, and so fragile.

Rudy was found wandering in a strip mall parking lot. He was taken to an animal shelter where he lived for a month. In 2004, my husband, Mister Pawpower, was looking for a dog to train for his guide. We found Rudy on pet finder, and decided to meet him.
He was living in a small animal shelter on the north shore of the lake pontchartrain, and some very kind shelter volunteers brought him over so we could meet him.

I knew when I first saw him that he'd be a wonderful guide. The one thing about Rudy was that he was so full of life. He loved going, it didn't matter where, as long as he was going.

Training him was a very difficult job. Rudy loved to go, and he wanted to be the one who decided the destination. He loved looking down the perpendicular streets as he guided Mister Pawpower. It didn't matter how we traveled, as long as we were traveling.

He rode buses, streetcars, cars, trains, and airplanes. Getting the harness on him was always such a challenge because he'd get so excited he couldn't hold still. He loved it best when Mill'E-Max, or Laveau and I were traveling with Mister Pawpower and him. He had his favorite places, and while some of them, like Wendy's restaurant were logical, he also adored Walgreens. He could find any Walgreens anywhere. I've frequently said that Walgreens should hire Rudy as their spokesdog because he loved it there. He loved airports, and shopping malls, and the french quarter.

At home, he was a laid back dude; preferring to nap in a patch of sun on the floor or in his crate as opposed to chasing balls. His favorite treat was pizza, and whenever we would order out, he would wait patiently for Mister Pawpower to bring the box inside. Then he would give the pizza an "honor guard" all the way into the kitchen. He would start grumbling if we didn't share. He ignored every other type of food, but pizza was just too good for him to decline.

In June of last year, Rudy was diagnosed with hip dysplasia. He slowly, and very unwillingly began easing into a life of semi-retirement. Mister Pawpower works from home, so he was able to work Rudy on trips to the store, or the coffee shop.

Today Mister Pawpower was in the tub when Rudy came and hung his head over the side and began nudging to go outside. Mister Pawpower let him out, but when he called the dogs back inside, Rudy didn't come. In his younger days, Rudy was a bit of an escape artist. Thinking that he had had a relapse of judgement, Mister Pawpower began scouring the neighborhood for signs of Rudy. He couldn't find a trace of him.

He went into the back yard to try and locate the place in the fence where Rudy may have gotten out, and instead he found that Rudy had died while out in the yard.

It was very shocking and horrible. I got the call at work, and I called the vet to come while making my way home.

When I got out of my friend's car, I saw the vet tech standing there with Rudy's 85 pound body in his arms. I knew then that Rudy was gone. Rudy was the kind of dog who went places on his own four feet, or he didn't go at all. I've never seen him so still, and quiet in a person's arms before today. I ran up and touched him on the leg. I just couldn't believe he had gone.

When you live through a situation like this, all of the "what if's" crash down upon you with merciless force. What if I hadn't gone to work and stayed home and had found him in time to do CPR. And What if I had missed some kind of crucial signal that he was unwell.

Two days ago, Mister Pawpower and I harnessed up Rudy and Mill'E-Max for a jaunt to our local coffee shop. Rudy was just as thrilled as always to get up and go. He loved the coffee shop. He loved working and getting out there.

Our vet has examined him and has determined that he died of heart failure which is sadly, very common in larger breed dogs.

We are all at such a loss. He has left a huge gaping hole in our lives.

Go in Peace, Rudy Dude. You will always be remembered with love. May you run fast and free, and your road be ever-open.
Walk within You
By Nicolas Evans
If I be the first of us to die,
Let grief not blacken long your sky.
Be bold yet modest in your grieving.
There is a change but not a leaving.
For just as death is part of life,
The dead live on forever in the living.
And all the gathered riches of our journey,
The moments shared, the mysteries explored,
The steady layering of intimacy stored,
The things that made us laugh or weep or sing,
The joy of sunlit snow or first unfurling of the spring,
The wordless language of look and touch,
The knowing,
Each giving and each taking,
These are not flowers that fade,
Nor trees that fall and crumble,
Nor are they stone,
For even stone cannot the wind and rain withstand
And mighty mountain peaks in time reduce to sand.
What we were, we are.
What we had, we have.
A conjoined past imperishably present.
So when you walk the wood where once we walked together
And scan in vain the dappled bank beside you for my shadow,
Or pause where we always did upon the hill to gaze across the land,
And spotting something, reach by habit for my hand,
And finding none, feel sorrow start to steal upon you,
Be still.
Close your eyes.
Breathe.
Listen for my footfall in your heart.
I am not gone but merely walk within you.

Laveau puts on a show, and other randomness

2011-05-19T17:02:00.000-05:00

Sometimes school children take field trips to my place of employment. They learn about assistive technology, modified ways of completing necessary activities of daily living, canes, and of course assistance dogs. We had one such tour today. I was right in the middle of my speech about what a guide dog does, (I've affectionately named this the dog and pony show), when the fire alarm went off... again!

And Laveau flew into action, got me out of there, down the hall, out of the building, down the sidewalk, and across the road. We were the first ones out of the building. I felt bad that I couldn't explain what was going on to the kids, but when she alerts, I go.

It was a perfect "Animal Planet" alert and response! I mean picture perfect. I was so proud of her.

They are adding on to the building where I work, so lately there have been many fire alarms as they install, and test the alarm system for the new part of the building. I'm glad Laveau is responding so well, but honestly I'm ready for these alarms to stop ringing because it is extremely disruptive.

laveau has also made progress on her working retrieve. She will now put her teeth on the dumbbell for about 1/2 a second. She is about 80% about putting her teeth on the dumbbell without nosing, but I don't want to start adding duration to the "hold" until I get teeth grabbing 100% of the time.

Yesterday I went shopping for a new bait-bag and for treats. It took me three hours to find everything I needed. Laveau has a soft trachea and can only eat soft treats when doing rapid-fire clicker training, or when working. She also takes too long to chew hard treats. I think she's the first Doberman on record who actually chews things before eating them. With the option of hard treats out of the picture, I needed to look only for soft treats. Only my dogs are raw fed, and do not eat cereal grains. Laveau won't eat treats unless they smell meaty. See why that took me so long?! I'm excitedly waiting for my package from
<"Clean Run">
to arrive via UPS.
Shopping at this store always makes me long to build Agility courses in my backyard. I first need a large enough backyard for obstacles!

What Dat Is?

2011-05-18T11:58:00.000-05:00

Yesterday I was reading a story with one of my clients about football, or baseball, I don't really remember which since I'm kind of a moron when it comes to sports. I mean, I cheer for the Saints for football, of course. During baseball season I cheer for the Boston Redsocks or the San Francisco Giants. But I don't actually, y'know, get all into it and I am still trying to figure out the whole point of football and what is a 1st down, anyway?

My client is reading this story about a water boy who brings the players water and towels and such when they have a break, or whatever. Anyway, my point of my senseless rambling is that my client came across the word "Gridiron."
I have never seen that word before. The client was reading to himself and he had a problem identifying one of the words after gridiron. I start reading the sentence aloud so he can tell me where he is having a problem. Only I mispronounce gridiron since I never heard the word when I was hearing. As a synesthete, the way I pronounce unfamiliar words largely depends on what color they are. Vowels are lighter, as is the letter D. Usually words tend to end with lighter colored letters, therefore, it seemed perfectly logical to pronounce it "Gridi ron."
Uh... that's not how you say it. My client laughed at me and he told me it was grid, like a graph, and iron, like iron your clothes. Ok ok, I get it.

That evening I'm telling the story to Mr. Pawpower and he tells me that I am mispronouncing the word "iron" which is the way I have always said it like "I Ron." So he had to explain to me that no it's not said like "I Ron" but like " I Earn." So I'm practicing how to say it correctly because now I'm paranoid. Also I have to teach the ironing lesson in a Daily Living Skills class very soon, and I don't want to look like an idiot because I can't say words correctly.
This entire experience makes me question why a sports field is called gridiron to begin with because it's made of grass, not iron and I don't think it's shaped like a grid, or maybe it is and I just don't know.

The Dish on the Dish

2011-05-15T10:09:00.000-05:00

One of Mill'E-Max's jobs is to bring me the dogs' water bowl when it is empty. I filled it up just last night so I was surprised when she came into the kitchen where I was sitting, and jabbed the rim of the bowl into my side.

I grabbed the bowl, and headed to the kitchen sink to fill it. I usually fill the dish in the tub and she was not letting me fill it anywhere but the tub. She was still holding the bowl, and gave a mighty yank! So with me holding one side of the dish and Mill'E-Max the other, she walked backward from the kitchen, into the bedroom, and down the hall. She looked like she was doing a canine version of the moonwalk. She was making these gur gur gur noises and I could feel their vibrations in the dish as I held on to it. I was laughing so hard at the moonwalking and the gurring; I dropped the dish. She came around behind me with the dish and commenced to poking me in the butt with her dish in an attempt to get me to walk faster. Poke, poke poke! I'm sure she was still gurring!

Finally we arrived in the bathroom and I started filling the dish. She hung her head over the side staring at the rising water level.
She is a very impatient dog is our orange Mill'E-Max. Now if Laveau will keep her feet out of the water dish, maybe I won't have to refill it before afternoon.

I wonder sometimes, what do people who don't have dogs do for entertainment?

The Energizer Brissy

2011-05-14T12:48:00.001-05:00

This morning I needed to make groceries. I walked out to the front room to grab the harness and Bristol pushed her way between Mill'E-Max and Laveau, to the front of the line, and shoved her head through the whole on the harness. Ok, I get it; the Queen has spoken. I finished harnessing her up and off we went. We hopped on the bus, got off at the grocery, and walked around the store getting what we needed. She had a blast and one little kid kept pointing her out and saying "Hi pretty doggie!" It was very cute.

I decided to buy Bristol a new tug toy since tug is her favorite game. I got her this cat on a rope. The cat is blue and has spikes all over it. It is wearing purple shoes and a purple stocking cap.

I got home and let all the dogs out in the yard while I put away the groceries. Then I got laundry together and let the dogs inside when I went out to the laundry shed to start the wash. I came back in and noticed the dogs playing with the new toy which I had left on the table. Unknown to me, I had also left a whole chicken next to the toy. They left the chicken and took the toy. I should say that Laveau took the toy because it was in the center of the table and neither Bristol, nor Mill'E-Max can get up there. Laveau knows that she can't take food from the table, but toys? That's open to interpretation, I guess.

Bristol played 4 games of tug with Mill'E-Max, and 3 games of tug with Laveau; winning them all. Then she wrestled on the floor with Laveau, playing a game which I have affectionately dubbed "Growly Spithead."
I think Bristol is tired at last. I'm sitting at the kitchen table typing on my Macbook and she is sleeping under the table.

That old gal sure has a lot of energy! I may need a nap after all that. Unfortunately for me, I need to go hang laundry on the line!

Oh and one last thing. I can use AIM on my iPhone to make IP relay calls. It's like the very modern version of those old TTYs. While I was in the frozen food section, picking out ice-cream, I called my taxi to take me home. I figured out that if I brace my braille note and iPhone on the cart just so, I can make relay calls while walking! The person helping me shop was very distracted by my phone and braille display, though and almost walked by the ice-cream. LOL!
It's laundry time for me, then I am going to bake peanut butter cookies, because my kitchen isn't already hot enough. :)
Oh well, cookies will make up for it!

Hide and Go Seek

2011-05-09T11:23:00.000-05:00

Today I was doing some obedience games with Bristol, Mill'E-Max and Laveau. We did some group obedience, and then played hide and seek. This involves me putting all of the dogs in a stay in a room of the house, and then go to hide somewhere and calling them to come find me.

I had them all on a sit/stay in my kitchen and went to hide behind the bathroom door. Once I was safely hidden, I called for them to come find me. Laveau arrived first, quickly followed by Mill'E-Max. I waited a few seconds, after all Bristol is thirteen and not as fast as the younger dogs. Bristol didn't come. I wondered if she had lost interest in the game and went to lay down.
I went through out the house looking for her. I'm deafblind and Bristol is deaf so she doesn't come to her name. I walked around the house stomping my feet which is the cue for her to come find me. I searched all of her usual favorite places, and nothing.
Finally I went back into the kitchen, and there she still sat, in a perfect sit/stay, waiting for me to call her to me.

What a good dog. I got in her line of sight and made the sign for "come and she trotted over proud as punch that she stayed even when the other dogs ran off.

Usually if we're doing group obedience, each dog has to wait until their name is called or signed to do the action. I might have all the dogs in a sit/stay and ask one dog for a heel. While the one dog is heeling to my side, the others need to remain sitting.
Bristol didn't think I had called her yet, so she waited until I had.
Man I love that dog! She is just fantastic.
I've once again begun training Laveau's working retrieve. We've gone about this in fits and starts for various reasons but I've decided to work on it again since I need it more in public now and Mill'E-Max is usually at home.

I think I may let the girls have a rest and then take them for a walk later.
On a random note, Bristol's eye drops fell out of a drawer a few days back and Mill'E-Max, for some reason known only to her, picked them up and stuck them in her crate. When she was helping me pick up around the house this morning, she got them out and gave them back. Sometimes, I wish she could talk.

Lets Do the Smoke Alarm Shuffle!

2011-05-05T19:06:00.000-05:00

Lately I've been experiencing quite a bit of vertigo due to my Meniere's Disease. This is an inner ear disorder which effects hearing, and vestibular function. In February of this year, I noticed a definite increase in vertigo symptoms, but being the big procrastinator I am, I took vestibular suppressants, and hoped for the best. The best didn't happen. I got tired of being stoned off my arse all of the time, and besides the meds weren't working anyway, so I took myself off of them. I'm scheduled to see my doctor on May 25th. She will hopefully prescribe more vestibular therapy.

It is a kind of physical therapy which aims to "retrain the brain" to accept the wacko vestibular system as "normal." I did it for about three months last summer and it helped quite a bit. Well, at first it made me sick as hell, but after about a month of drastically increased symptoms, things got a lot better. I'm hoping to go back for a second round. Until the therapy starts working, I'll be walking around, slamming into walls, and falling over quite a bit.
I use a wheeled walker in my home, but when I'm outside, Laveau does counterbalance work, and is able to keep me upright-- mostly.

Today was just another ordinary day at work. I was sitting across the table from my first student of the day when an announcement came over the PA system. They were working on the sprinkler system and the smoke alarm may go off. It was just a test, and we were to disregard it. In addition to being a hell of a walker dog, Laveau is also a great hearing dog. I taught her that when she hears the smoke alarm, she is immediately supposed to get my attention, take me out of the building, down the block, across the street, and then body block me from the building until the alarm stops.

With a hearing dog, there is no such thing as a "fire drill." Just like with a guide dog there is no such thing as "pretend traffic." It's a very serious thing, and even if the alarm goes off five times in a single day, Laveau is to follow her routine. I can't take the chance that she begins to ignore those alarms, because one day, it could save my life.

So there I sit, mid-class when the alarm goes off, and Laveau flies into action. before I knew what was happening, we were navigating the hallways swiftly and it was all I could do to stay upright. Vertigo, meet hearing dog with a mission. Down the hall, out the door, down the sidewalk, pausing a few times to brace me or to yank me upright. Cross the street, and stop. I wanted to throw up because all of the walking was making my world turn upside-down, literally. No time to puke because my dog just did a really awesome thing and I need it to be highly reinforced. So I gave her treats and scratches and let her jump up and give me a hug, meanwhile speaking to her in the high squeaky voice she so loves.

The alarm stops, and we go in. Thankfully I had explained the situation to my client, so she knew why I left her unexpectedly.

That client leaves, and a new client arrives. I give him the same song and dance about fire alarms and hearing dogs and bla, bla, bla. Which was a really good thing because someone in the Activities of Daily Living classroom burned the corn bread and once again! The fire alarm went off. and... Once again, Laveau and I were off, weaving down the hallway, out the door, down the sidewalk, and across the road. I was swearing through gritted teeth by this point because it took one hell of an effort for me to walk at all. We made it though, and we had more hugs and treats and snuggles.

Thankfully that was the last alarm for the day. My balance crapped out altogether on me this afternoon as I was walking home from the mini mart. I don't think I'm going anywhere tonight. Sometimes I feel like I'm at war with my ears, and right now-- I think they're winning. However it gives me great satisfaction to know that Laveau has ears enough for the both of us!

All about Mill'E-Max

2011-05-04T08:46:00.000-05:00

She is orange.
She is hyper as hell.
She is the smartest dog I've ever met.
She is stubborn.
She is devoted to me.
She is Mill'E-Max.

In 2003, I was up against a brick wall with Gracy, and her training. I decided to get another dog and perhaps let Gracy mature for a bit. I'd been tossing around the concept of having two dogs-- one who works inside, and the other who works outside. I decided that if Gracy and I got over our issues, then I would explore this thought, but if not, I'd keep her as a pet.
I met Mill'E at a Golden Retriever rescue. They didn't know what to do with her. She was, as stated above, hyper, yet brilliant. These can be troublesome traits to manage, when coupled together. Aside from my first dog, Rhoda, I had never met another dog and had an immediate attachment to her. It was that way with Mill'E, though. Her actual name-- given by the older couple who had surrendered her to rescue was "Miele" which is Italian for honey and is pronounced me-ay-lay. It had been shortened to "Millie" but I didn't like the way "Millie" looked because the "IE" letter combination at the ends of words is very displeasing.
See, this is what happens when you are a synesthete; normal things, like fingernails on chalk boards don't annoy you but certain combinations of graphemes will.

Therefore Millie became Mill'E because my name also has an apostrophe in it, and we matched. I soon learned that Mill'E did not do anything half-assed. She did it to the maximum. She then became "Mill'E-Max." I usually only call her "Mill'E" when she's guiding me.

Mill'E-Max was a lot of dog. I mean, she was hyper, flighty, had bad canine social skills, was bossy, demanding, clever, inquisitive, and even more characteristics which I could not list if I tried. She kept me on my toes, that dog.

She was attacked three times by loose dogs or dogs on flexy leads. She became very fearful and dog reactive. This was a problem. I loved this dog, and she loved me. She loved being a guide dog and I loved having her by my side. I began trying everything to "fix" the reactivity issues. From straight Koehler training, to Bridge and Target training, I tried anything I could. I read about reactivity, from both a training, and a veterinary behavioral viewpoint.

I noticed that clicker training, and the use of operant conditioning received the best results. Becoming a clicker trainer changed my life. It got passed all of the blame, and broke behavior down to its component parts for me. Many dog trainers, view a dog/person relationship in very adversarial terms. I frequently heard things like "Don't let your dog test you; they'll do what they can get away with." or "You've got to show her who is the dominant one, and be the leader or she will take advantage of you in an attempt to gain leadership." I learned that behavior is behavior. We, the humans are the ones who assign value to it. E.g. taking things from the trash, that is "bad behavior," where as walking nicely on a loose leash is "good behavior."

When I chose to become a clicker trainer, I had to take all of the adversarial, emotion-laden training that I had been indoctrinated to believe, and throw it out. Only then was I able to begin anew; establishing a training method built on impartial science and mutual respect.

I used clicker training to re-teach guide work. She learned retrieve, and tug based tasks to help with my other disabilities. Her favorite chore was the laundry, and she would empty the dryer all day long, if she could.

Mill'E-Max made great improvement. We worked fluidly as a team and things were going along in their normal routine way, when we needed to evacuate for hurricane Katrina. We ended up in Memphis, TN. and when the levees failed, that is where we stayed.

I didn't evacuate to Memphis because I had a support system in place; I evacuated to Memphis because it was the city closest to New Orleans which was not forecasted to sustain damage from the storm. I got on the last train leaving the city and my choices were limited.

So there we were, me, Mr. Pawpower, Bristol, Gracy, Mill'E-Max and Rudy in a strange city full of unknowns. There was not a day that passed that I did not thank the powers that be for Mill'E-Max. She was the rock to which I unashamedly clung. She remembered where places were even after going there just once. She navigated me through this strange city and was always there for me, no matter what. When you are in the middle of a protracted crisis situation, your brain doesn't work like normal; or at least mine does not. If you ask me now, to recall those first few weeks of exile, I won't be able to tell you much of anything. I was not myself, I was not able to be strong for my dog, so she was strong for me. She remembered where my hotel room was, where the grocery store was, later, where my new apartment was. She remembered all kinds of routs to all kinds of places. She sat through countless meetings for food stamps, unemployment, and FEMA benefits. We would frequently be in waiting rooms for hours, and the displaced children would flock to us. The stories of pets lost, or left behind fell from their lips, along with their tears. I was there to listen, and Mill'E-Max was there to lay a paw, or her head on a small knee and to look up with her brown eyes. She quietly lay close as their tears wet her fur. I will never be able to repay her for the gift of her steady patience during this time.

We eventually moved back to New Orleans and in March of 2008 she was diagnosed with advanced degenerative joint disease in her right knee and upper patella. It was devastating. We were both completely broken. She loved working and I loved walking along beside her at full speed. It was necessary for her to stop doing work outside the home on a daily basis. One of the hardest parts of choosing to work with an assistance dog, is putting their needs first. Even when it hurts them, and they would rather work, you put the needs of their physical body first. It was hard because as with Bristol, I couldn't explain to her why she was no longer taking long walks with me.

Thankfully, she was still able to do her indoor work-- retrieving, locating, and tugging. She loves to do these tasks and we've nicknamed her the "house elf."

One of Mill'E's jobs is to wake me up in the morning. One day, I decided to try and fake her out; what would she do if I wouldn't wake up? She tried everything she knew. She rolled around atop me, licking every exposed inch of skin. This didn't get a response. She then removed my pillow, and blanket. I continued to pretend to be sleeping, in the hopes she would leave me alone. Once she had removed all of the covers, she left, and I sighed, very satisfied at out smarting her. Or at least I did until she brought her water dish into the bedroom and dumped its remaining contents on my head. I do not try to fake her out any more!
Mill'E-Max loves emptying the dryer. I think she must have been a jock in her past life because nothing gives her quite as much pleasure as tugging a towel from the dryer, and then spinning to snap me with the end.
I miss walking with her. People would call out warnings when they would see us charging down the sidewalk. She would wait until the last minute to dart me around an obstacle in our path, but she never ran me into anything. She was very aware of traffic and I knew that I could trust her to stand between me and whatever was coming my way.

She will be 9 years old this October and she is still as full of zest and love for life as she always was.
When I first read the following poem, I thought of her. The author is unknown, but I think they must have had a dog like Mill'E-Max in mind when they wrote it.

I asked for strength that I might rear her perfectly;
I was given weakness that I might feed her more treats.
I asked for good health that I might rest easy;
I was given a "special needs" dog that I might know nurturing.

I asked for an obedient dog that I might feel proud;
I was given stubbornness that I might feel humble.

I asked for compliance that I might feel masterful;
I was given a clown that I might laugh.

I asked for a companion that I might not feel lonely;
I was given a best friend that I would feel loved.

I got nothing I asked for,
But everything that I needed.

Author unknown

no comment

2011-04-29T17:04:00.000-05:00

One frustrating thing about working an assistance dog, is that suddenly everyone you know, and everyone you meet seems to be a dog trainer. They watch "It's Me Or The Dog" and "The Dog Whisperer" and suddenly Victoria and Cesar have taught them everything about how to train, and interact with, a dog.

These people seem to feel perfectly justified in making comments about the way my dog does, or does not, do her job. Most of these same people either do not have a dog of their own, or they have small dogs who are spoiled, under-socialized, and out of control. The fact that these people cannot even train their own dogs to a reasonable degree does not seem to stop them from being "armchair dog trainers."

We have the "Pack Leaders." They believe that I need to "dominate my dog. Be the pack leader!" This usually involves a metal training collar of some variety or other, and corrections with a leash when the dog engages in undesirable behaviors.

Laveau does not wear a metal training collar because she has a very soft trachea and cannot physically handle collar corrections. I am a clicker trainer. I prefer to , train and maintain Laveau's behaviors using the principles of operand conditioning; mainly positive reinforcement, negative punishment, and extinction.
When one of these "pack leader" types sees my dog make an error, and then sees me stop, do some re-focusing work, and give her another chance to do the correct behavior, they come up to me, tell me I'm spoiling my dog and "rewarding her for misbehaving." They tell me that my dog won't "respect you unless you are the dominant one!"

There are people who use leash corrections with their assistance dogs. While this is not a training method that I, myself use, I respect the fact that others use it successfully and humanely. Clicker training works for me, and it works for my dogs. It doesn't make them "spoiled" and it doesn't make them "disrespect me."

Then there are the ones I've named the "Anthropomorphites." They attribute human emotion to my dog. They "feel so sorry that she has to work." They try to sneak her food under the table in restaurants because "she looks so hungry." They lecture me for "bringing that poor dog" to events such as outdoor concerts and Mardi Gras parades. They get angry when Laveau is panting heavily and I refuse to give her water. Laveau has a soft trachea and she cannot drink large amounts of water when she is panting or she will throw up. I have learned this from hard experience. I understand how it looks to people, but at the same time, my dog is obviously well cared for, people should trust my judgement. This also goes for bringing her to events such as outdoor concerts. I realize that most dogs can't handle events like this, but Laveau does just fine. If she couldn't handle these kinds of things, and even enjoy working in this environment, she would not be my assistance dog. As for people attributing emotion to her because of the way they interpret her facial expression.... I don't even have words. My dog eats, and is a healthy weight. While humans, (me included), may look at their job with a mix of irritation and exhaustion, dogs don't think that way. You can't "force" an assistance dog to work. They work because they love to do it. I wish I loved my job half as much as Laveau loves hers.

Then we have the "commentators." People who love to give me a running commentary of my dog's perceived wrongs. "She's getting distracted." is a frequent one. My dog is a Doberman. This means that she is very cautious of my safety, and very aware of, and curious about, her environment. Sometimes she will take her time with me-- especially if she feels that I'm unsteady on my feet. She will frequently look around while walking slowly or while pausing on a step or curb. Apparently this looks as though she is distracted. Does she get distracted sometimes? Yes! Absolutely. We all do; dogs aren't perfect because nobody is perfect. I sometimes get distracted, so does most everyone else I know. However when my dog gets distracted, or makes an error, the "commentator" loves to make some remark along the lines of "is she still in training?" or "you should call the program who gave her to you and ask about retraining."
This is very frustrating. People watch too much animal planet and have a very unrealistic expectation of what assistance dogs are, and are not. If I wanted a robot who never made mistakes; I'd get a robot.

Like I said; Laveau makes mistakes sometimes. This does not mean that she isn't a "real guide dog," or that she "needs more training." When people make mistakes are they then "not real?" or do they need "more training?" From time to time I may focus on improving a skill or behavior with Laveau. This is my decision, and mine alone. For the most part, she's an awesome dog.

If you meet an assistance dog team who seems to be having a hard time, my best advice is to shut the hell up, and mind your own business. It is neither necessary, nor advisable to comment on someone's assistance dog. I don't care if the person is a friend, a family member, a coworker, or stranger. It is rude to offer unasked for advice. Like my mama said-- "If you can't say anything nice, don't say anything at all."

A Question of Manners

2011-04-27T18:34:00.002-05:00

I have a question for all of you in blog-land.

I have an iPhone. It is connected, via bluetooth, to my braille display. Apple has built a "screen curtain" into all their products. This feature blackens the screen so people can't read it. Usually I have this feature enabled, but sometimes not. I find that when I'm in public, either texting, or using my Mac, and the screen curtain is not enabled, people will stand near me, to watch, and read my screen. I find this rude, annoying and intrusive. This is why I usually have the screen curtain turned off on both my Mac and my iPhone when out in public. It doesn't keep the nosys from staring, but at least they can't read my screen.
I know people don't mean to be rude, and that most people don't think about it, that they are just so fascinated with my technology, bla bla bla. I really don't give a tinker's damn that their intentions are good; I want to be left alone.

So my question to you, is it normal for sighties to do this to one another. In other words, if you were to see a sighted person in a coffee shop who had a laptop or cell phone, would it be socially acceptable to stand there and visibly read their screen? Am I just too prickly and should just chill out? If sighted people do it to each other and it isn't considered "rude" I'm more than willing to look at this issue differently. Right now, however, it just feels like a huge invasion of my space, and like because people know I'm blind, they think it's perfectly ok to engage in behaviors which are not acceptable to do if I were sighted.

Only Words?

2011-04-25T22:18:00.002-05:00

I've been wanting to talk about language, and how its used, for quite some time now. Especially as it relates to how we describe ourselves as people with disabilities.

We each have our own identity, and my identity is just that-- mine. I don't believe that my identity or the terms by which I describe myself should be used by everyone. It is up to the individual to define their own identity. This blog entry is about my identity and the language I use to define it.

I'm Deafblind. There-- I said it; Deafblind. Two of the most dreaded words in any language compounded into one. Deafblindness is its own unique state of being. It is neither deafness, nor blindness, but both, together. This means that the technological, social, and practical alternative techniques used to live a full and happy life are not the same as those used for those whose only disability is deafness or blindness.

I am a Deafblind person who is learning American Sign Language, which is its own unique language. It is not English broken down into gestures. ASL has its own grammar, syntax and idioms. I am becoming more involved in the Deafblind community. Each day that passes I am becoming more and more culturally Deafblind.
I guess I should go back and explain the difference between Deafblind (large D), and deafblind (small d.). Deafblindness is cultural. People who are Deafblind use American Sign Language (or other local signed languages) to communicate. Deafblind people have their own history, set of values, and traditions. Now we get to deafblindness, which is the medical condition causing the hearing and sight loss. There are many people who can be deafblind but who still prefer to use spoken language to communicate. These people are usually not involved in the Deafblind community, and do not accept Deafblind cultural norms for their own.

When people speak of my lack of vision or hearing I want them to use the word "Deafblind." I eschew ridiculous terms such as hard of seeing or hearing challenged. The term sightless is annoying, archaic, and brings to mind the image of a man begging on the street. It is putting the focus upon what I do not have.

The term hearing impaired is offensive. Hearing people were the first to use it, in an attempt to be more politically correct. Again, the person who cannot hear is described as being lesser. Hearing is seen as "normal" and therefore better. A hearing person is not better than me. I have my own identity and I want to be described as Deafblind.

Think of it this way. We have many different religions world-wide. Imagine if we took one religion, lets say... Mormonism and made it the "norm." Everyone who wasn't a Mormon would then be called religion impaired. Would you like that? Would you like for your identity as a Catholic, or Muslim, or Wiccan to be dismissed as not the norm, lesser than, Mormons?
When people use the phrase (fill in the blank) impaired, the focus turns to what the person is lacking, not what they have. I do not want to be defined by what I am not. At first it may seem polite to use the word "impaired" lest the label deaf, blind, hard of hearing etc. be seen as offensive to the person. Some people don't mind being defined as impaired. Some people keenly feel the loss of a sense such as vision or hearing, and do feel as though they are lesser than a "normal" person. However, as I said, this is my blog and we're talking about me.

Our society is afraid of deafness and blindness. We are afraid of offending the deaf or blind person so we come up with all of these politically correct workarounds. I also think there is another element of fear involved; the fear of deafness and blindness itself. If you use words like "sight challenged" it sounds a great deal less final, and scary than "blind." Our society doesn't like saying the words because we don't like to think about deafness, or blindness, or even more so, deafblindness. I have noticed this particularly with blind people. I have met many blind people who do not like to use the word deaf. No matter how many times I remind them that I'm deafblind, some people continue to refer to me as a bit hard of hearing, or hearing challenged. Just like sight loss is one of the biggest fears of many sighted people; hearing loss is one of the biggest fears of many blind people.

I want to be referred to as deafblind. Deafblind is what I am. The label of deafblindness does not seek to put limits on me; or to make me seem lesser than, the norm.

Deafblindness is another characteristic of mine-- like my red hair, my freckles, or my ability to wiggle my ears.

Deafblindness itself doesn't limit me; society does. Every time a deafblind person doesn't get an interpreter for a doctor's appointment because someone in the office didn't think they needed it, or forgot to schedule it, we are being limited. Every time a deafblind person is denied access to a restaurant due to the presence of their assistance dog, that is another way society limits us. Every time a deafblind person is dismissed from a job interview before it has even started because the person doing the interview is ignorant about the capabilities of deafblind people, that is another challenge put in the deafblind person's path. The people doing these things make up our society. If I'm impaired in any way; I am societally impaired.

Words matter. My words matter; your words matter. We should all think before using them.

Reactions to Laveau's Brain

2011-04-24T11:13:00.000-05:00

This post is for
<"The Third Assistance Dog Blog Carnival">
This time around, the topic is "reactions."

To be honest, I didn't think I'd write for this carnival. The topic of the publics' "reactions" to the presence of assistance dogs in public places has been pretty well talked out, and I have nothing new to add. Then a conversation with a friend got me thinking.

My current assistance dog, Laveau, is a Doberman mix. People like to say she's mixed with lab, but personally, I don't see it and am leaning more toward hound of some kind. People frequently ask me, "What breed is she?" I reply, "Doberman mix." Then it starts...
"That is dangerous to have a Doberman out in public. Don't you know that Dobermans have a condition where their brains outgrow their skull? When this happens, they go crazy and start killing people."
If I had a dollar for every idiot who has spouted some form of this untruth, I could retire and live the high life with my crazy Doberman.

There is a disease where the brain can put pressure on the skull. It is called
<"syringomyelia">
This condition is most frequently found in Cavalier King Charles Spaniels, although rarely can be found in other breeds. It is not normally found in Dobermans, however. The disease does not "make the dog go mad and start biting people."

But it never fails. If I give a presentation, at an elementary school, inevitably, some six-year-old will start spouting the "brain outgrows its skull" nonsense, and I have to explain that no, my dog will not suddenly start biting the heads off of random children.
I have even heard a well-known guide dog trainer talk about this same issue. She was explaining why Dobermans aren't used much as guides any more and out came that old reliable "brain out growing its skull" song and dance. Apparently, one of the ways a Doberman guide dog owner can tell if the dreaded condition is upon them is that the dog will begin spinning its handler in circles, usually in the middle of the street.

You will be relieved to know that Laveau has not started doing this, or maybe I just have such chronic and terrible vertigo that I don't notice because life is one giant circle for me, anyway.

I have fallen in love with the breed; the watchfulness, work ethic, easy-care coat, size, and Velcro tendencies make the Doberman an ideal breed for my service dog. This means that I'm probably going to be hardily sick of the reactions of the uneducated masses who are worried that my dog will see them as a two-legged snack.

Laveau makes up for all of the misinformed folks out there by being a devoted and careful worker. Hopefully, when people see her work and her calm demeanor, their reactions will change.

A pocket-full of hardware, and other randomness

2011-04-23T16:57:00.000-05:00

I've been quiet on the blog of late because things have been somewhat hectic. On Monday Bristol went to the vets' for her checkup and lab work. The vet was very happy with her physical exam and said that everything looked great. He drew blood for labs and said they'd be in by Tuesday morning. The labs weren't in until Thursday afternoon. I was not a happy camper and kept calling the vets' office who was probably equally unhappy at being bothered by the crazy obsessive dog lady. Finally they came in on Thursday afternoon and everything was normal. My vet said that she has the blood of a six-year-old dog. For a thirteen-year-old dog, I'd say she's doing pretty darned good.

I had yesterday off because it was Good Friday and I live in predominately Catholic New Orleans. I went shopping and to lunch with a friend.

Today I helped Mister Pawpower assemble our new barbecue grill that I bought yesterday. I am assembly impaired, or something. I do not know the difference between a washer and a wing-nut. Mister Pawpower, however is the assembly master. I was the official holder of the hardware. Once he explained the differences between washers, wing-nuts, nuts, bolts and lock-washers, I was good to go. We got the barbecue grill put together and I screwed the handle onto the lid of the grill all by myself, and I didn't even break anything!

After we finished with the grill, we went to the store for beer, but alas, they don't have their liquor license as of yet. This is very sad because in my humble opinion, beer is an integral part of any proper barbecue. Hopefully we can solve this problem by tomorrow which is the big day.

We used to live in another house about three blocks away from our current one. Our neighbor was this elderly lady who was at least eighty-five years young.
Well one day, shortly after we moved in, Mister Pawpower and I decided to do a barbecue. We had some friends over and Mister Pawpower took the charcoal, the lighter fluid and the matches outside. He had just lit the coals and the flames were kind of high when our neighbor stepped outside. all of the color drained from her face when she saw the blind man with the matches and she yelled "OH SWEET LAUD!!" You could tell that her horror of the blind man playing with fire was doing battle with her proper civilized southern lady sensibilities. The sensibilities won out and in a very calm voice, she said "Ah, you're barbecuing... I see...."
I did not make any sarcastic remarks about her need to overstate the obvious, but instead offered her some food as any proper Southerner would do. She declined and went back into her house.

However she still didn't trust my husband not to burn down the entire block, and our sighted friends frequently saw her twitch the curtain aside to look out the window. Guess she wanted to make sure that our back yard didn't become an inferno while she was unaware.

We have not barbecued yet since we've been in this new house, so the reactions from the neighbors might be interesting.

It's that whole assumption that blind equals incapable. Educating by doing, I guess that's how I'll teach 'em.
I really want to learn to barbecue so Mister Pawpower is going to teach me how to set up the charcoal and set it alight and how to cook on the grill. I'm very excited about this, but I promise not to burn down our house!

Owner Training?

2011-04-20T17:28:00.002-05:00

Sometimes people ask me, "What are the qualities that make a person a good assistance dog owner trainer?"
I've been pondering this quite a bit, actually so thought I'd blog about it.

Disclaimer number one: This is my blog so these are my views. My ideas and observations may not align with another owner trainers views on the subject.
Disclaimer number two: I think the word "good" in the question stated above is too ambiguous. I prefer the term "effective." I am not in the business of deciding if anyone else besides myself is an "effective" trainer.

So what are the qualities, according to me, which make an effective owner trainer? I'll list the most important ones and then go into greater depth on each one.
• love of dog training
• willingness to learn
• patience
• a working knowledge of the applicable assistance dog laws in your country

• good orientation and mobility skills (this is guide dog specific)
• ability to keep accurate records
• ability to be honest with yourself
• a backbone

Love of Dog Training:
There is a very big difference between getting a dog from a program and starting from scratch with a dog who may not even know its name. A dog from a program will have learned obedience cues such as sit, down, stay, and loose-leash walking, or LLW. The program dog may have a few bad habits such as scrounging for food, or dog distraction, but your program dog should have most of its training completed.

People who have never handled a completely green dog have no idea what they're getting into. People who have worked only program dogs and who have had no other dog experience may be in for a very rude awakening if they attempt to owner train using the skill set taught by the programs. Programs don't really focus on teaching you to train dogs; they teach you how to communicate with your already trained dog. They may teach you how to train things like how to follow a person or how to target, but a green dog is just that, green.

If you are going to owner train, you have to want to be involved in the process. This could include everything from house-training to teaching the dog its name. You only get to do the public access stuff once the basic obedience, appropriate behaviors such as toilet training and food refusal are fluent.

Training a dog is hard, back-breaking work. It is hot, and sweaty in the summer, and cold and icy in the winter. Dogs don't care if you're tired or busy or that you "don't feel like it." If you want a dog to behave consistently, you need to train consistently.
Willingness to Learn:
Your dog will teach you things about yourself and the training process. Sometimes you aren't going to like the lessons. Owner training is very humbling. If your dog isn't responding or learning, then you need to look for a new way to teach what you want. You may need to go to obedience school with your dog. I have done this with all of my dogs. Sometimes I didn't even really like the trainer much, but I learned something about my dog or myself or about the training process every time I went. As an owner trainer, I'm wrong sometimes. Wrong about what my dog can handle, wrong in my approach, or wrong in my actions. You have to be able to learn from your mistakes and the first part of learning, is admitting that there is an issue.

PATIENCE:
Owner training is a long process. Be patient with your dog and yourself. Patience actually starts before you get a dog. I first learned about patience when looking for an assistance dog candidate. If you go with the first dog you like because you want a dog now! You may end up washing out that dog, and having to start again. Be patient, do research, slow is fast as my friend Karyn over at

<"Pawsitively-k9"> likes to say.

A Working Knowledge of the Applicable Assistance Dog Laws in Your Country:

When you owner train, you're on your own. When you run into access problems, there is no program to back you up, or to tell you what the laws are. Thanks to the wonders of the world wide web, this information is easily accessible, however. You will want to know these laws before you even make the final choice whether or not to owner train. In some contras your dog must come from a an official program, and people with disabilities do not have the right to brain owner trained dogs into places of business. Know your rights and responsibilities.

Good Orientation and Mobility Skills:
This is guide dog specific. If you don't know where the hell you are, or how to get to point B from point A, you are going to have a hard time training your own guide dog. All guide dog programs insist upon good orientation mobility skills before a person is accepted for training with a guide dog. They have good reasons for this. I think it is even more important as an owner trainer to be comfortable with your environment, and be able to navigate it without regular problems. This is not to say that you should be perfect. Heck, I get lost all the time. However I have good problem-solving skills and know how to get myself unlost, if that is even a word. I'm not talking about some "superblindy" who never makes an O&M mistake. I'm talking about a good set of travel skills, and the ability to stay calm and problem-solve. The ability to keep an accurate map in your head is a definite plus, but not a requirement.

Ability to Keep Accurate Records:
If you get into an access denial situation, you could appear in front of a judge who may want to know if your dog is really trained to do work, or perform tasks which mitigate your disability. If you have a program dog, then of course the program trainers will probably come down and testify on your behalf. They will also be able to show written records of your program dog's progress through the training.
If you are an owner trainer, you don't have anyone to do this for you. Keep a training log. Make videos of your dog working in various situations. Keep all documents such as certificates of completion from an obedience school. These certificates may not prove that your dog is an assistance dog, but it will show that you have been training your dog for X amount of time. Do not make the mistake of buying some kind of "certification" for your assistance dog from some schmuck on the internet. In the united States, there is no "certification" and any "certification" you may buy is only worth the paper its printed on. The company who sells you this "certification" won't come down and prove to the judge that your dog has been trained. So keep records!

Ability to be Honest With Yourself:
Sometimes a dog isn't suitable for assistance dog work and you may have to wash it out and start again. In the records you've kept, be honest. Lack of truthfulness with yourself will only come around to bite you in the butt in the end. It may take a while (see Patience, above) but be honest, and if a dog isn't fit for the work, do yourself and the entire service dog community a favor and don't take it into public. I'm not talking about a dog who has its off days, because no dog is perfect. I'm talking about a dog with a serious issue like reactivity or health problems.

A Backbone:
Owner training has become more widely accepted over these last five or so years. However, you are going to run into people who have issues with it. It could be anyone from your family, friends, other people with disabilities or assistance dog handlers. I've met some trainers from programs who have been pretty unpleasant. I've also dealt with all of the people stated above, who at one time or another had a problem with owner trainers and owner training, for a number of reasons. If this is something you want to do, if you've done your research and are determined to do it, you should be aware that you're probably going to encounter resistance, and sometimes outright hostility. If you can't handle that, then reconsider.

When you owner train your assistance dog you are the trainer, the advocate, the public relations, and the handler of your dog. You may have friends and fellow trainers who will advise and help you, but ultimately, you are responsible. If you can't handle that, reconsider.

I owner train because I love the process. I love dogs and dog training. I love the hours of work involved. When I stop loving it, then I will get a dog somewhere else.

All About Gracy

2011-04-13T10:04:00.000-05:00

Some of you may be asking yourselves "Gracy who?" Whereas many of you already know who Gracy is. However since I'm doing this "all about" feature, I have to include her even though she mostly lives at my friends house these days.

In 2002, I began doing volunteer work at a kill shelter in the city where I lived. I had just moved into a huge house and the landlords didn't care that I was "the crazy dog lady." I was then able to begin fostering dogs in my home who weren't doing well in the shelter environment. However I wanted to adopt a dog-- not just foster one. Bristol had some weird dog social issues which needed to be addressed sooner rather than later if she were to live with me and my new guide when she retired. Not to put too fine a point on it or anything, but out of harness, Bristol was a bossy bitch who had no idea how to have appropriate social interactions with other dogs. I decided that we needed a pet dog in our family who would help her learn these things.

I started my search and on the first day at the shelter, I fell in love with a beautiful yellow lab. She was awesome and so pretty and even though I couldn't take her out of her cage because she was still in quarantine because she had been found abandoned, I knew I wanted this dog. Yes, I was a shallow idiot back then. I waited the mandatory two week period for someone to claim her, and nobody did. Meanwhile, I visited her daily when making my rounds at the shelter. She shared her kennel with the saddest looking black dog I'd ever seen. She was filthy, covered with huge open sores and was not doing well in the shelter. I snuggled her too because she was just so pathetic. However she wasn't my dog, and I waited for my yellow lab to get the green light for release.

The day finally arrived. I went to the shelter, sprung the yellow dog from her kennel and instantly knew that this would never work. She was extremely dog reactive, and I couldn't have a dog like that around my guide dog. Back in the cage she went and because I felt bad for her, I took the dirty black dog out for a little love. She was sweet and instantly warmed up to Bristol. My fellow volunteers encouraged me to adopt her. However, see above, re: shallow! She was dirty and sad looking and not the image I had when I saw myself bringing home my new dog. I really felt bad for this dog though, so I decided to clean her up a bit in hopes she'd get adopted if she were a bit more presentable.
While readying her bath, I looked at her file. Her name was Jewel, she was a border collie mix who had been turned in by her owners for chasing the chickens and eating their eggs. I put Jewel in the tub and tried to clip all of the hair away from her open hot spots. I shampooed her, and when I was done, both my friend and I were covered with black fur. Once she was clean, I put her on the grooming table to brush out some of the undercoat. During this entire process, Jewel submitted quietly to the hands and warm water.

When I began brushing her, I started to sing. This was a ritual which had started with my first dog, that of music and grooming. I went through all of my old favorites and when I was done, I ended with the song "Amazing Grace."

"Amazing grace, how sweet the sound
which saved a wretch like me.
I once was lost, but now am found.
Was blind, but now I see."

As I finished the first verse I had what would probably be called "A lightbulb moment from Mother Universe." I knew this was my dog and that I would be leaving with her that day and that her name was Gracy because it was grace which brought us together.

Gracy couldn't come home with me that day because she needed to be neutered. Two days later I picked up an even more pathetic-looking black dog(although still clean) from the vet office at the shelter. She had been spayed, vaccinated for every canine disease known to man, and treated with antibiotics for kennel cough. I took her home in the Elizabethan collar (aka the cone of shame) and put her in my bed where she stayed for the next four days only leaving to take trips outside to relieve. I fed her ground turkey and probiotics and vitamin C. I took her off the meds they gave me and treated her with homeopathy. A week later I had an entirely different dog.

We began taking walks together, Bristol guiding and Gracy on the right. It wasn't long before Gracy started modeling her behavior after Bristol's. There are scientists and dog people who will tell you that dogs don't learn behavior by watching other dogs and I say that they have never worked with border collies. This is the way they seem to learn best.
I knew Bristol was retiring probably within the next year so began tossing around the idea of training Gracy as her successor. Even if she didn't work out as a full-time guide, it would still be a great experience for me to have as a trainer.

Back then, I still subscribed to the "yank and crank" school of training which involved chain collars and harsh leash corrections. It is how I was taught to train, and was the only way I thought guide dogs could be trained. These methods did not go over well with Gracy. The more she screwed up, the more I corrected and the more she shut down. Sometimes we'd do great together but sometimes our relationship turned into a modern day "War of the Roses."
I had moved to New Orleans by this point and made the choice to wash her out as a guide because I just didn't know what to do. She was a great pet but I couldn't handle the not knowing if she'd work for me or not, the inability to take correction and my own irritation with the entire process.

I began training Mill'E and some events in Mill'E's situation lead me to have a sort of Training renaissance. I realized that there was more than one way to skin a cat and began using exclusively clicker training.

One day, I decided to see how Gracy would react to this new method and it was like her inner light came on.

As my disabilities progressed, I decided that it would be beneficial for everyone if I had two working dogs at the same time. I don't mean that I take two dogs everywhere I go-- I mean that I have two dogs so that one dog can guide, and one dog can help out at home. Because I'm Deafblind I need a dog to do sound alerts, and because of my vertigo I needed a dog to do retrieve and carry-based tasks. It is really not fair to ask one dog to work both jobs for a person who is as active and busy a I am.

Gracy blossomed under the new method of training and I began using her as a guide more and more. We traveled for work and pleasure together, via train and plane and bus.
One of my favorite stories of Gracy happened while in an airport. Now Gracy was a farm dog who liked to chase small animals. We had some wild chickens in our neighborhood (don't ask me how we had wild chickens in the heart of the inner city because I had no idea). She had been known to escape from the yard and to chase said chickens which was no surprise seeing as that's what got her sent to the pound last time.
So we're in this airport and I'm relaxing between flights and talking to the lady next to me when suddenly she began describing the following events.
Apparently birds had gotten into the airport and would fly around. Well, one of these birds saw Gracy just laying there and decided to investigate. It landed about 18 inches away from her and walked a complete circle around her, with its little bird head cocked at an angle, just staring at her. I was very worried about what she'd do but I stayed calm and gave her the cue to stay. The bird inched closer and closer, and Gracy didn't so much as twitch a whisker. Eventually it flew away with all of its feathers intact.

Another time I had met my good friend Lisa in the Philadelphia airport. She and I, with our two guide dogs had planned to fly on to a conference together. We made it to our gate, got our dogs settled at our feet, when a lady with one of those little dogs in a carrier sat down across the row from us. The little dog saw our dogs and commenced to barking its little dog bark. "Yip! yip! yip!" Several minutes later, a person with a German Shepherd guide dog entered our gate area. The dog got settled on the floor. Then the GSD began barking back at the little dog in the carrier who was still yipping. So it sounded like this: "Yip! Woooof! yip yip! woooooooooof!! Woof! yip yap!" Gracy had, in the past, been a very vocal dog. She was whiney and tended to bark when startled. At home, she loved nothing more than a good bark fest. However she, and my friends dog lay quietly at our feet while the other dogs yipped and barked until they called our flight.

In 2008, Gracy began showing more and more signs that she wanted to retire. I wanted to let her do that if it was what she wanted, however I knew that she wouldn't be happy to live in the city in my house with its tiny yard. I had moved to New Orleans with my friend Barb and she had had known Gracy since day one. Barb lived in a less densely populated part of the city and owned a huge piece of land with ponds and gardens and trees with squirrels. Barb wanted to take her and I made the very hard choice to let her go.

Now Gracy has a happy retirement getting back to her farm dog roots. She guards the property, keeps tabs on the squirrel and rodent population-- reducing it when she gets the chance and shares her yard with a Bouvier and an Am Staff. Every couple of weeks she comes to stay with us for a few days and we get a chance to love up on her and for our other dogs to see her also.
Gracy has always had a special relationship with Bristol. For many years it was just Gracy, Bristol and me. They were the best of friends and as Bristol ages, I want her to be able to spend lots of time with her border collie buddy.

Gracy was one of the hardest dogs I've ever worked with, however she was one of the dogs who made me grow the most as a trainer. She will be ten in May, and she's starting to get gray around the muzzle now. Ever since I got her from the shelter, she has had the oddest nose; it is dry and pebbly like lizard skin. It's how I can tell her apart from Laveau, by the nose, since they're both black. One of Gracy's nicknames is "The Cheez." I don't even remember how she became known by this moniker, but she will answer to "cheez" or "cheez wizard."

This entry has made me miss her; I may have to call Barb and ask for a visit this weekend!

Live What's Given

2011-04-11T21:35:00.000-05:00

While looking at blogs today, I read a post from our friends over at
<"Ruled By Paws">

She wrote about some of the positive ways blindness has impacted her life. She had read another person's blog talking about these same things and this inspired her to write her own post. The original blogger ended their post with the words "Live What's Given." The posts I have read have encouraged me to write about my own disability.

I was born blind. I went to public school, and my family treated me like any of my other four sisters. Ever since I could remember, my goal was to be a musician. I played many instruments-- guitar, drums, and piano but my true love was singing. I took private voice lessons, sang in choirs, and when I graduated high-school, I packed my bags and went to music school. During the third year of music school I went to bed one night, and woke up the next morning profoundly deaf.

It would not at all a melodramatic statement for me to say that I felt like my world was over. I didn't read braille fluently, all of my books were on tape. I couldn't listen to music, I couldn't read, I was afraid to leave my house. The doctors didn't know what was wrong with me. They tried antibiotics, steroids, ear drops, nose drops, and nothing worked.
Eventually I was diagnosed with
<"Meniere's Disease">
This is a progressive inner ear disease which causes hearing loss, vertigo and tinnitus or ringing in the ear. Most people have it in one ear, but I number among the 5% who has it bilaterally.

This disease caused my hearing to fluctuate from day to day. I'd be profoundly deaf for a while, and then gradually my hearing would come back. However not to the level it was before. One doctor told me I'd have about ten to twenty years before I became profoundly deaf, while another doctor told me that I may not lose all of my hearing. Meniere's disease is the great unknown.

Obviously I couldn't be a music student any more. I was devastated by this because I had never wanted to be anything else. Life, however doesn't stop just because you think it should. I moved on and eventually went to school for a marketing degree (which I hated but I hated everything so...)
In 2003, I packed up my life and move to New Orleans. In 2005, our city was devastated by hurricane Katrina and the subsequent failure of the federal levees and we lost everything. I spent seven months in Memphis, aka Elvisland, and hated every moment of what I saw as forced exile. Eventually I was able to come back home to New Orleans.

On March 26, 2006, I arrived in my new (to us) home in the big stinky. By the middle of May of that same year I was irreversibly, profoundly deaf. Doctors were puzzled but eventually they decided that allergies to the great amount of mold in the city at this time, had triggered my Meniere's disease, and caused such severe damage that the hearing wasn't coming back.

I could no longer use the phone, have conversations with people, hear the fire alarm, read traffic on the street or teach large classes at work. I was too deaf in my right ear to benefit from a hearing aid, but could use one in my left, so I began the long process to try and persuade the government that they needed to buy me one, since my insurance would not.

People had all kinds of ideas about how I should live my new life. Stay home, they said. "You might get hit by a car, let us go to the store for you."
"Get a cochlear implant, then you can be normal again."
"Go home and let your family take care of you."

I was not having any of that. I made up my mind that I was going to learn American Sign Language (ASL) and that I was not going to live the rest of my life being afraid to leave my house, and that I was not going to get some surgery just so that I could be "normal."
Many people told me that I shouldn't bother learning ASL.
"You're blind, you can't see it! Deaf people won't like you, they won't talk to you because you are blind. You aren't going to find anyone who will teach you, or who will talk to you. Just get a cochlear implant!"
I refused to listen, and began work to advocate for ASL lessons from the Department of Vocational Rehabilitation.

In October of 2008, I met my ASL teacher and began learning. Earlier, in April of 2007, I met a deaf woman here in New Orleans and she began taking me to Deaf and Deafblind events all around the city and the state.

The people at these events didn't live their lives in fear, they didn't live them apologizing to the world for their deafness or their deafblindness. They signed, they had friends and families and had rich, active lives full of love and fun and personal growth. At first, when I went to these events I was terrified. I felt awkward and like a huge fumbling moron. I was just sure that everyone was staring at the weird deafblind lady with the dog who was trying to sign. But I never met with a word of unkindness or cruelty. People were patient, and they taught me by their example to be proud of who I am, to live what's given and to do it loud!

In September of last year I was accepted to the Seabeck Deafblind retreat in Seattle, Washington. Not only was I accepted but I was asked to teach a tea making class. I was so nervous. I'd been studying ASL for two years by then, but I was just so afraid of making a mistake. That week in Seattle was unforgettable. I met Deafblind people from all over the world. I participated in activities like tandem biking, boating and even dancing. People came to my tea making class, and I did not make an ass out of myself, and what is more, people said that they liked it! They liked me! When I made signing mistakes, people patiently corrected me, and I learned so much from their kindness.

In June of last year I got an SSP who helps me go shopping, takes me to the doctor and helps me fill out forms, and does many other things with me. The SSP makes my life so much easier.

I use interpreters now for large meetings at work and it is a huge reduction in my stress level.

My deafblindness has changed my life, it has brought me into contact with so many wonderful people who have given of themselves with no thought of what "they'd get out of it." What is more, I have found strength inside myself that I didn't even know I had.

I remember those first weeks after I came back to New Orleans. The distinctive post-levee-failure aroma, the sidewalks crowded with the sodden, moldy remnants of what had been, someone's life. The stories I heard day in and day out of waiting of roof tops for rescue, of floating in filth-infested waters on kitchen appliances, of the ones who didn't make it. Then I lost my hearing, after losing everything I owned, or nearly.

Deciding to live what you are given is not a choice you make once and then move off into the "great happy ever after." When you decide to live what's given, it's a choice you make every morning. You can choose to stay in bed, to bury your head in the pillow and hope it goes away. Or you can decide to get up and get on with life. There are days I took the bed and pillow rout, I won't lie. But at the end of those days, I wasn't a better person for having done it.

People ask me, would I have still moved back to New Orleans if I had known that the mold in this city would leave me deaf in six weeks. My answer is yes. I would rather be deaf in New Orleans than hearing anywhere else in the world.
The novelist, and New Orleans native Poppy Z. Brite said:
"If you belong somewhere, if a place takes you in, and you take it into yourself, you don't desert it just because it can kill you. There are some things more valuable than life."
Hurricane Katrina and the failure of the levees was a dark and horrible time. We all lost so much. However, as I look at my life today, living in a place I love, surrounded by people I love, with services which allow me to live a free and independent life, I would say that I am luckier than I have any right to be.

Bitches in Brace

2011-04-09T15:02:00.000-05:00

Since I was a complete slug this morning, laying in bed with my book and a cold bottle of tea, the dogs were rampy as hell by around noon. My lazing about had abruptly come to an end; whether I willed it or no.

The sky was blue and the sun was shining so I decided to take all three of my bitches for a walk. Once my dogs figure out the concept of loose-leash walking, or LLW, I start taking them on walks with other dogs. All of my dogs are now very used to the way we do things and each knows her place.

Mill'E-Max is the designated guider. She wears the harness, halti and leash and walks on the left. She takes this very seriously and on these walks she does a fantastic job at staying focused and finding the best path which will accommodate all of us. Laveau and Bristol wear a brace. It is a V-shaped piece of equipment with an O-ring at the bottom of the V. Nylon straps make up the sides of the V and each end terminates in a bolt snap which attaches to the rings of Bristol's and Laveau's collars. I attach a leash to the bottom O-ring. Using a brace, I can walk two dogs with one leash.

We took a ten or so block walk around the streets in our neighborhood. Spring has truly arrived and here in the swamp, this means that things are growing rapidly and that vines, shrubs and trees are already crowding the sidewalk. Mill'E-Max did a great job of picking the best way for us all, and when I needed to go right, Laveau would pull slightly ahead of her LLW position, and exert a small amount of tension on the leash so I could feel which way to go. Bristol walked between Laveau and Me. The only issue I encountered was Laveau's need to sniff everything because she wasn't guiding. She seems to have two modes; working, no sniffing, and not working, sniff everything. This issue will need to be addressed, because it is neither safe nor necessary for her to sniff everything. It's not safe because she could easily eat something off the ground and since I can't hear; I can't tell the difference between nose down to sniff, or nose down to eat. I'll be doing a lot of clicking and treating for head up, llw, face forward.

Bristol was pretty tired when we finally made it home. She used to be able to go for miles and miles, but for a thirteen-year-old dog, I'd say ten blocks is pretty good. I think these walks are good for her; she's experiencing some muscle weakness in her hind end, and the more we can do to strengthen those muscles the better she'll be.
Once we got home, Laveau tried to take a swim in her water dish. This resulted in water all over my hall, all over Laveau and an almost-empty water dish. Once I cleaned up the floor, and cleaned the dish (because who really wants to drink out of a dish which has been used for a foot bath) it was cold water for the dogs and cold tea for me!

I have an insane jones for nachos so once I cool down and Laveau gets a chance to rest, we're off to the mini-mart for nacho fixings.

Happy Saturday!

Helen and Me

2011-04-05T20:51:00.000-05:00

Helen Keller is probably the most well-known deafblind person of our time. Born in a century when people with disabilities were institutionalized, kept at home with their families or forced to beg on the streets, Helen accomplished so very much in her lifetime.

The way the public views deafblind people and many of the opportunities we have now are a direct result of the work of Helen Keller and Anne sullivan.

Using the manual alphabet, Anne would spell words into Helen's palm. Helen's first comprehension of language was memorialized in the movie "The Miracle Worker."

Helen was the first deafblind person to graduate college. She spent her life educating others and bringing awareness to the issues of deafblindness.

There is a very rare film which shows Anne Sullivan explaining the process she used to teach Helen Keller to speak and to speech read using her hand. You can see the video
<"here">

At first it seems like a wonderful thing, encouraging her to speak, and to speech read. I would agree that having as many tools as one can in your "communication toolbox" is a smart idea. But honestly, something about this video bothers me; it bothers me very much.

I feel like Helen is treated like a circus performer in a show. Not there to be of real benefit to others but to "show" what she can do and to "inspire" people. Hearing people think of speech as the "normal" way of communicating. We all want to be "normal." But what is "normal" worth when it doesn't fully meet our needs?Speech reading is hard to do and is an impractical skill for most deafblind people to acquire. However the general (hearing) public feels inspired when they see it. But how much did the ability to speech read by touch really improve Helen's life? Was it more a benefit to the hearing/sighted people around her, to be used as some kind of spectacle?

I know how it feels to be treated like an object on display. When I'm in public, minding my own business people stare at me. They stare at the dog, at the braille PDA, at my hands as they sign and as they touch the hands of my friend or SSP. I deal with the staring, the intrusive questions and constant interruptions because it is the nature of my existence. If I want to be out in public at all, I have to accept the fact that people feel like it is their god-given right to ask me personal questions and invade my personal space. I don't have to answer their questions and I usually try to be polite, but firm when I make it very clear that I'm busy and don't have time to talk right now. However in professional and personal situations I've been asked by people to "put on a show" for others so they can see what "it is like to be deafblind." I understand Helen's need to educate, but at what cost?

Helen really never had a life of her own beyond that of "the famous deafblind woman." People never seemed to see her as an ordinary person. She was always amazing! inspirational! clever.

She is not amazing and inspirational because of her deafblindness, no more than I am. What made Helen special was her drive to learn, her ability to connect with all different types of people, her constant striving for knowledge and self-improvement.

I can't help but be sad when I think about Helen Keller. Would she have wanted to do something else with her life? Something that didn't involve her deafblindness? Was this need of hers, to be able to speak, and to speech read, born out of a desire to be able to better blend in with everyday folks?

I sometimes wish that I could talk to her-- to ask her questions and to tell her what a difference she has made for all of us. She will never benefit from the work that she did, but I will.

Helen Keller was a pioneer. She had no deafblind role-models because she *was* the deafblind role-model. Every day I thank the universe that I was born in a time of great technological advances. Because of the internet, I have met many of my Deafblind role-models both in person and online. Through their example I have learned to be proud of who I am. I have learned that it is OK to be different-- to sign in public, and that if people stare, so what. I have learned that I am not just a deafblind person. I am a deafblind person who is a teacher, a wife, a dog trainer, an herbalist, a pack leader, a friend and a role-model in return.

When people meet me, I want them to see the whole picture-- all of the things that I am and am not. Deafblindness is an important part of who I am, but it is not everything I am.

All about Bristol

2011-04-04T15:43:00.000-05:00

Thinking about my blog-- I realized that many readers don't have a very clear picture of each of our dogs, how they came to us, and their individual stories. I decided to remedy this because even if everyone else finds this dead boring; I can still come back and read it and remember them as they were. Since she's the oldest, I'll start with Bristol.

Bristol is a thirteen-year-young female golden retriever. She was my guide dog and worked from July of 1999 until August of 2003. I received her from a program after my first guide-- Rhoda-- died of cancer when she was three.

I really didn't want another dog. I needed another dog because I had just begun experiencing bouts of profound hearing loss and I wasn't safe with a cane. It was a struggle to love this dog who was so different from my first. Rhoda was aloof and frequently distractible. Bristol loved everyone, but was very focused when she worked. When she wasn't working, she wanted to be right next to me, and that hasn't changed at all.

When I got her from the guide dog program she was very ill and malnourished. She struggled with serious health concerns which were brought on by the diet she had eaten as a puppy, and which the program continued to recommend. Ear infections, skin infections, chronic vomiting or diarrhea. It was a living nightmare.

Once I got her home from the guide dog school, my vet took one look at her and told me to send her back. "She's got two, maybe three years before she will have to retire." He was very matter of fact about it, but I couldn't stand sending her back there.

In between vet visits, and the many medications we tried to fix her various problems, I did research. I read about diet, about vaccine reactions, about herbs and homeopathy. I made the choice to put her on a raw diet in summer of 2001.

The only problem with that? She wouldn't eat it. She was normally not a big eater anyway but she seemed especially opposed to the idea of eating raw meaty bones. I didn't give up and eventually got her to eat raw. Once she got all of the cereal grains and vaccines out of her system, I had a different dog. She was actually healthy! It was amazing.

We traveled all over the country together. She was very laid back about everything. She didn't care where we went, or what time we would leave or come back. The most important thing to her was that she was with me. Whether she was guiding in an airport or on a hiking trail, she did her work with so much care and style.
One of my favorite stories of Bristol is about the day we took a hike. I went with a friend and decided to let my friend take me sighted guide so that Bristol could run around off leash with my friend's dog. We were walking down a wooded trail, when suddenly I felt the world fall away from under my feet. I fell at least fifteen feet and landed in a patch of thorny bushes which were growing on the side of a cliff. If those bushes hadn't cushioned my fall; I would have died because the cliff was hundreds of feet high. I remember the feel of the thorns stabbing into my hands, knees and feet. I remember looking down and seeing the green tops of trees on the ground far below. I looked up and saw several feet of very steep cliff between me and the trail above. I called for my friend and she knelt down on the side of the trail, poked her head over and told me that due to her back problems she would be unable to get me out. Forget about the fact that she hadn't been paying attention in the first place and "sighted guided" me right over the cliff to begin with.

I sat there, feeling my ankle swelling and pondering my situation. I heard the rustle of bushes, and looked up to see Bristol, channeling her inner mountain-goat, climbing down to get me. Boy was I ever glad to see her. I put my hands on her shoulders, pushed with my feet, and with Bristol walking backward and me pushing along like a snake, we made up the cliff and onto the trail. We both were covered with thorns and I spent the next six weeks in an ankle brace.

Bristol's favorite activity was swimming. It was actually by accident that she learned to swim. One summer, I was at a pool party. One gentleman had partaken of the available alcoholic beverages to excess and this led him to think that it would be very funny to throw people into the pool. He scooped me up, and threw me in. Bristol came running in after me, and sank like a stone to the bottom. She did not know how to swim and I dove to the bottom and brought her back out. I determined that she needed to learn to swim so I took her to the river and taught her how. Once we moved to New Orleans and moved near the dog park on the levee, she spent many happy afternoons swimming in the river.

I could always count on her when I got lost. Once I attended a large conference with hundreds of other blind people and guide dog teams at a hotel in another state. We hadn't even been there an entire day, when I decided to look through the exhibit hall which was a gigantic room, packed with people, dogs, white canes, and assistive technology gizmos being sold by many venders. I strolled around for a few hours just taking it all in. Once I decided I had seen my fill, I wanted to leave. Only by that point I was so exhausted and confused-- I didn't know how to get out. Bristol took over, wove me through crowds, down halls, found elevators and I pressed the button for our floor. Once out of the elevator, she went straight to our room and nudged the door handle with her nose.
She retired in August of 2003 from degenerative joint disease. Retiring her was honestly one of the hardest things I have ever done. She didn't want to retire, I didn't want to have to work with another partner. I cried every day for a year when I would have to leave her and go off with Mill'E-Max or Gracy. I felt guilty and desolate and when I would come home to find her laying in the same spot on the floor where she was when I left her it nearly did me in.

We did a lot of massage, tried many herbs and dietary supplementation. Eventually she regained the use of her leg. She still guides from time to time-- little trips to the mini mart or the corner store. She still loves to work.

In 2006 she was diagnosed with uveitis as a result of Toxoplasmosis. She was on antibiotics and herbal concoctions for two months. She lost all of her night vision, but regained it after treatment, although she still sees a veterinary ophthalmologist every few months to keep tabs on her eyes.

She is deaf, has thyroid disease and high blood pressure, but other than those things which are typical of her age and breed, she is a pretty healthy old lady.

She is still willing to go anywhere with me and when I'm at home, she is always by my side. I wake up every day thankful for all the gifts she has brought to my life and glad she has stayed so long to share them with me.

Bristol's name, in one of the old English dialects means "A bridge, or a meeting place."
This is the song that will always remind me of her.

Bridge Over Troubled Waters
When you're weary
Feeling small
When tears are in your eyes
I will dry them all

I'm on your side
When times get rough
And friends just can't be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

When you're down and out
When you're on the street
When evening falls so hard
I will comfort you

I'll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down

Sail on Silver Girl,
Sail on by
Your time has come to shine
All your dreams are on their way

See how they shine
If you need a friend
I'm sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind

Ramblings of a synesthete

2011-04-01T16:10:00.000-05:00

Lately I've been thinking quite a bit about writing and cooking. Both of these favored activities of mine are inextricably linked. I think about writing when I cook, and I frequently write about cooking. The two things are the same in many ways for me. Both letters and words, as well as ingredients for cooking, can be used to make something which is enjoyed by myself and others. The process of creating, and the end product itself are very important. Rarely in life do I enjoy the journey as much as the destination. With writing, and cooking however, I can say that the journey is at least half of the pleasure.

I have
<"Synesthesia">
This condition is neurological in nature. Synesthesia is the stimulation of one sense evoking the involuntary stimulation of another. I can "taste" words, "smell" music, and "see" the colors of days, weeks, months and years. When I read, I enjoy the very act of reading for not only the story's sake, but because reading plunges me into a colorful land of lush scents and powerful tastes.

I have at least ten different types of synesthesia. The one I talk about the most is Grapheme/Color synesthesia. I also experience Grapheme/Gustatory synesthesia. words, letters, and numbers all have their own unique texture, scent, color, and taste.
The letter "B" is kind of peachy colored, and very soft like old warn velvet. It smells fresh-- like spring-- but doesn't have a taste. The letter "Y" is very bright red in color, is kind of slimy (but not bad slimy more like fun slimy) and it tastes very strongly sweet. My least favorite letter is "U" because it is gray, rusty in texture, smells like decay and tastes like old pennies.
A word will most often be a blend of its component letters. So the word "May" is dark blueberry purple-blue for "M", light green for "A" and red for "Y." However the first one or two letters in a word tend to have the strongest influence over the word's general appearance, texture and taste. Because I don't like the letter "U" I really avoid words like ugly, understand, or umber. Even words like just or cure are not very attractive because the "U" is so close to the start of the word that it muddies the rest of the word. I almost gave Laveau a different name because of its final letter. However because her "U" comes at the end it is bearable-- most of the time.

Words can also have their own associations independent of their component letters. Take the word "Tuesday," it tastes strongly of oatmeal cream pies and is squishy and I like it very much. Even though it has a "U" I still love tuesdays and every time I say or read, or see the word Tuesday in ASL, I taste oatmeal cream pies. I am rather fond of oatmeal cream pies so this is a positive association. The word "Didactic" has the taste, texture and scent of green apples. Like the kind of apples which are so tart they make you pucker and your teeth hurt when you bite into them. The component letters of this word in no way suggest this association, and the word's definition itself has nothing to do with the way I experience it. It is truly a pity that I don't have a reason to use the word didactic more often, because it is one of my favorite words.

Sometimes I want to insert a particular word into a phrase not because it would be appropriate to use for the topic at hand, but because that word evokes such a strong synesthetic response relating to the topic I'm discussing.

Being a synesthete has strongly influenced the way I view the world. All of my senses are bound together and engaging in a hobby which most people would find boring, such as reading the dictionary, is for me, a fun and exciting experience. Just like I love to go shopping for new and unusual herbs or ingredients, I very much enjoy reading the dictionary to learn new words. I do it because I like expanding my vocabulary, spicing up my writing but also because the words themselves, are for me, works of art and I love experiencing them.

I could go into my kitchen, take a head of letups, chop it up, add some tomatoes, baby carrots, some celery and an onion. I could pour some Kraft Ranch Dressing over the whole thing and would have, what most folks would consider, a perfectly respectable salad.
I would much rather work with red spinach, baby Romaine, Nappa Cabbage, sun-dried tomatoes, red peppers, Greek olives, snow peas, red onion, and some lovely lemon basil Feta cheese topped off with a hand made gorgonzola dressing.
This is what I think a salad should be, made with care and skill.

Writing and reading are the same way. It is a craft-- an art form-- and something which should give as much pleasure to the writer as to the reader.

I can't explain what it is like to have synesthesia to someone who doesn't have it. All synesthetes will not experience letters, numbers, music and other stimuli inn a universal way. Each synesthetic experience is unique-- just like we are all unique. (and there goes that "U" again!)
For me, my synesthesia brings the world into sharper focus-- I imagine synesthesia is almost the same thing as experiencing movies in 3d.

It can also be very distracting sometimes. Especially if I learn a new word or phrase-- I can get so focused on "experiencing" that word that I tune everything else out and pay little attention to the actual meaning of said word or phrase. This got me into quite a bit of trouble in school as a kid. I could never explain why I would not understand new material sometimes. I didn't have a word for synesthesia and just assumed that everyone had the same sensory input going on in their head as I did.
I think it would be fun to write a book and include all of my favorite words. It probably would not make logical sense at all, but it sure would be wonderful to read.

C'mon feel the noise!

2011-03-30T13:47:00.000-05:00

Lately I've been noticing that the world has become a much more quiet place. I'm not trying to be a smart ass either; things just seemed to be harder than usual to hear. I scheduled an appointment with my audiologist to get my hearing aid, otherwise known as "The Babelfish" turned up louder.

My SSP picked me up and we drove to the appointment in his car. Laveau usually rides on the floor between my feet in the foot-space of the passenger seat. However when I ride with friends or my SSPs who don't mind, she rides in the back seat so she can look out the window. Laveau loves to rest her chin on the shoulder of the driver and look out the front window as we're driving down the road. I swear she is either evaluating the skills of the drivers. or she is learning to drive by watching. Either way, she loves watching over my driver's shoulders.

We pull up at the Audi's office, go inside and wait to get called back. Eventually my audi comes to get me and she has an audiologist in training with her. They fiddle around for a while and crank up the volume on ye old Babelfish. It is almost maxed out. Once it is maxed out, I'll have to get a more powerful babelfish. This used to be the most powerful one on the market but they are making one even more powerful now. I'm amazed at technology. I also needed to get my streamer fixed. A streamer is a small box I wear around my neck which can use bluetooth to connect my hearing aid to my iPod or computer. I broke mine so got a loner while mine is getting repaired. When the audi handed me the loner, she said "This one is white." I just kind of looked at her because I didn't know that the color was important. Apparently mine is black and she wanted me to know that this one was a different color, or something. The audiologist in training went to change my hearing aid battery; only she didn't tell me what she was doing. She just came over, took my hearing aid out of my ear and started messing around. I got a little grouchy about this because it is rude, especially when dealing with a deafblind person, to just start manipulating a person's body or objects on their body without first explaining what you are planning to do. Apparently they don't teach them this in audiology school so I had to tell her. It is common sense to me, but I guess people are just used to being able to see that they don't think about it.

After the volume on my hearing aid was increased, I was reminded once again of how noisy the world is. Not loud-- just noisy. Everything makes a sound. I don't know how hearing people stand all of the racket without the ability to just turn off their ears!

As we were driving down the road to the pharmacy, I kept looking around trying to figure out what all the noise was. I can still only hear out of one ear so although sounds are louder now, I still can't tell where they are coming from and it is very annoying. Also, everything makes noise! Cars, air conditioners, lawn mowers, people walking, and just lots of other sounds that I have forgotten about. It always takes me several days to adjust to all of the noise when I get my hearing aid turned up.

My loss is progressive and eventually a hearing aid won't benefit me at all. I didn't get a hearing test today but I'm profoundly deaf (it is the only way in which I am profound lol) and profound hearing loss is the highest grade there is, so I'm just becoming profounder and profounder (ok ok more and more profound) as the years progress.

After we left the audis, I went to the pharmacy and then rewarded myself with a trip to
<"Angelo Brocato's">

My SSP and I sat down to enjoy a cannoli with a cup of cafe au lait. It was amazing, as always! Then I got a quart of their lemon ice gelato to take home and share with Mr. Pawpower.

I think I'll spend the rest of the day with my hearing aid off and reading the newest Jean M. Auel book "The Land of Painted Caves."

ahhh, silence, ice-cream and books! This is the life.

I'm Gonna Clear My Heaeaead! I'm Gonna Drink That Suuuun!

2011-03-24T19:58:00.000-05:00

It's a beautiful day here in the big moldy. I spent it at home-- unable to work because I can't wear my hearing aid for extended amounts of time due to a chronic and raging ear infection. Well, I had an ASL lesson, but that was just down the road at the coffee shop. We sat outside during the lesson and then I went home and did not want to go inside. I got out the little end table, my iPhone, braille display, iPod and huge amplified headphones. I set everything up on my porch and Laveau and I set to having an afternoon out of doors.

I cranked up my iPod as high as it would go, and listened to my favorite Indigo Girls album. I read email, and Twitter, and blog posts, and played hang man all while humming quietly along with the music.

One of the biggest truths about deafness is that quiet becomes subjective. I learned this noble truth when Mr. Pawpower texted me to say that he could hear me singing, from inside, over the air conditioning and the hammering of the neighbors; he could hear me. I could not hear myself singing, and what I thought was a bit of quiet humming had become a neighborhood serenade. Oh well, at least it was good music, and Mr. Pawpower said that I hit all the notes and that I sounded better than the other people on our block who sing loudly. The problem is, most of said neighborhood singers participate in this hobby when they are intoxicated. So to say that my singing is better than that of an inebriate is a rather back-handed complement if ever there was one.

Now that I've succeeded in humiliating myself, I have come inside, only to realize that I have sun burned the holy hell out of my face. Being a red head really sucks sometimes.

I put Noxzema on my face only to have Mill'E-Max decide that Noxzema is the new flavor Du Jour. Now I have to hide my face like a fugitive to avoid being turned into the canine version of an otter pop.
I just can't win!

I Want To Ride My Bicycle

2011-03-23T20:01:00.000-05:00

This morning, my husband, Mr. Pawpower and I some how got into a conversation about our first bicycle experiences as children, and this inspired me to write about mine here.

I was born with
<"Optic Nerve Hypoplasia/Septo Optic Dysplasia">

This is a congenital brain malformation which can cause, among other things, blindness, and short stature because the pituitary gland is damaged and does not produce growth hormone. I stopped growing when I was around three or four years old and did not begin growing again until I started receiving human growth hormone injections at the age of eleven.
My parents always encourage and expected me to be just like everyone else. I played with my sighted sisters, and our sighted friends. I was basically an ordinary kid, with the exception of not being able to ride a bike because there wasn't one small enough for me.

Once I began growth hormone treatment, I started growing rapidly. Before long, I was tall enough to reach the pedals on my sisters bike.

I have always had especially crappy balance, and learning to ride a bike-- even with training wheels-- was quite a challenge. I had to focus on the bike, focus on my environment with my hearing and my very limited sight, and coordinate my arms and legs to move around objects in my path. After a while I got pretty good at the whole training wheels thing.

It was time for the moment of truth... The training wheels were removed and I spent many hours in the summer between sixth and seventh grade getting on the bike, pedaling a few feet, losing my balance, falling off the bike, getting up and repeating the entire process.

I will always remember the first time I actually rode for a period if time longer than a minute. The sun was just setting and my mom had called us girls in to get baths and get ready for bed. I begged for "just one last try."

I got on the bike, determined as hell that I was going to do it this time. I started off-- heading west, toward the setting sun. I focused on pedaling, keeping the handlebars straight, looking ahead, and keeping my balance. I wove around like an inebriate, but eventually I did it, I was riding the bike. I rode round and round and round our street, laughing my head off and so proud of myself. Unfortunately, I got distracted by the thrill of it all, lost my concentration, and hence, control of the bike. I flew ass over teakettle and landed in a heap in the road, tangled up with my sister's red bike, still laughing like a maniac.

I practiced riding the level streets at my mom's house. When I got good enough so I wasn't falling on my face every other time, I decided to take my new bike-riding skillz to my father's house to try it out on the streets there.
My father lived in a subdivision, at the very top of a pretty steep hill. I was confident that I could handle it-- after-all, two weeks had passed since I had last fallen off my bike at my mom's house.
I started off at the top of the hill, clutching the handlebars for dear life, and focusing on the street ahead. I pushed off and began pedaling. Because of the grade of the slope, my bike began picking up speed, rapidly. I got about half way down this very long hill when I made the startling realization that I was no longer in control of the bike-- gravity had taken over. I went faster and faster, the handlebars began swiveling back and forth and it was all I could do to maintain control of this mad beast of a bike. Unfortunately, in my effort to slow the bike down, I neglected to watch where I was going. This led to my face, meeting a mailbox at the bottom of the hill with a great deal of force. The mailbox stopped me in my tracks and I flew off the back of the bike which continued on for a few more feet before falling over like a wounded pony. It hurt, it hurt a very great deal. I do recall a substantial amount of blood being shed.
The neighbors were horrified; the little blind girl riding a bike! What were her parents thinking! I cleaned off the blood, retrieved my bike, and lined up at the top of the hill once again.

This glimpse into my childhood tells a lot about my character. Call it determination, call it stupidity or stubbornness, or just plain force of will. Whatever it is; I possess it in spades.

In december of that year, I turned thirteen. I sang in the school choir and we had a concert on my birthday. I remember going home once the concert was finished, expecting to enjoy a bit of birth day cake and some presents. My father told me to go into my room and change into my pj's first. I was rather surprised when the rest of my family followed me up stairs. I opened the door to find my very own bicycle assembled at the foot of the bed. It was a Huffy. It was the palest pink. It was one of the best birth day presents I think I have ever received. It was a lesson to me that if you work hard, get up when you fall, clean up the blood and continue pressing onward that you can make your dreams happen.

A Consecutive Kind Of Life

2011-03-19T08:57:00.000-05:00

I just finished a book called "Of Such Small Differences" written by Joanne Greenberg. The story is told from the point of view of a Deafblind man in his mid-twenty's. It was written in the mid 1980's so it is not, from a technology standpoint, very relevant to now. All of the characters in the book appear to use
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with some ASL signs thrown in at times. I think the author of the book is hearing, so it isn't a "real life experience" of an actual Deafblind person; such as the books written by Helen Keller or Robert Smithdas. It's very obvious that the author did her research and for its time, the book is pretty accurate.

People ask me all the time, "What is it like to be deaf and blind?" and reading this book helped me to answer that question more fully, I think.

Hearing/seeing people have multi-tasking lives. Take one of my best friends for example. I've seen her in her kitchen, whipping up a marinade with one hand, while her other hand holds a phone. She is scrolling through her text messages while talking to her husband or kids. There is a TV on and in between stirring the marinade, reading texts, talking to her family, she manages to catch what is on the television and she laughs at a joke, or swears at yet another hopeless politician. This same friend gets into her car and drives. She is talking to a coworker on the hands-free phone, while taking notes and yet she manages to spot one of her kids squirting the other with a packet of ketchup she found on the floor. This is normal, this is everyday life for most people, all of this multitasking.

A deafblind life is a consecutive life. When I cook, I am cooking. I cannot take my phone into the kitchen because it is connected to my braille display which is very fragile, and if it breaks the repairs will take at least a month. It is vital to my independence for me to have a working braille display so I try very hard to keep it clean and that means keeping it out of the kitchen. If I need to write down a recipe, I write it in hardcopy braille on sheets made of thermoform which is a kind of plastic. This way if I spill on the page I can take a damp rag and clean it off with the braille being no worse for the experience.
When I am cooking, I am focused on cooking. I can't have a conversation with my hands because more than likely, my hands are buried to the wrist in ground meat or dough. Cooking, like everything for me, is a very tactile process. I can't hear tv, I can't hear music unless it is patched through the TCoil on my hearing aid, and through a neck loop to my iPod. I hate wearing my hearing aid at home so that means no music. Cooking time is for cooking.
When I'm done with cooking, I can then have a conversation with my husband, and then I might open up my computer and look at a website for the news, read my email, pay some bills.
When I'm done with my computer I put it down, move to the phone and braille display to check texts there. My friends who text find this very frustrating. When you are hearing/sighted, texting is instant. You get a text, and you pull your phone out of a pocket, quick tap out a message and put the phone back; moving back to the task you were just doing. My phone is an iPhone connected via bluetooth to a braille display. This setup is the size of a video cassette; remember those, back when dinosaurs roamed the earth? :) Its very size means that I can't just put it in my pocket. I can't briefly check messages and just move on to what I'm doing. If I'm in the other room, or even across the room from my phone I don't even know if I've gotten a text unless one of the dogs or my husband tells me. It takes longer for a deafblind person to have a text conversation unless I've decided to sit down and make texting my focus for that period of time.

When I walk places, I am paying attention to what is around me; the feel of the sidewalk, the positioning of the sun, the textures my arm encounters when I walk. These are all things which give me confirmation of my location. When I get to the street, I pick up my tactile mini-guide which has been hanging from a cord around my wrist. It is a small unit-- about the size of one of those containers of Airborne you buy at the drugstore. It vibrates when it detects obstacles in my path. The nearer the obstacle, the stronger and quicker the vibration. I use a tactile Mini-Guide to help me read traffic patterns so I know when it is safe to cross the road. When the cars are going in front of me, I will feel the slow-quick-slow, slow-quick-slow pattern of vibrations as the cars move by. When the cars to my side are going, I won't feel any change because my path is clear to cross.
When I'm walking, this is the time for me to listen to my iPod. I turn it off at street corners so I can focus on making a safe crossing, but otherwise, walking time is music time for me. It is very hard for me to have conversations either in ASL or spoken English while walking because if I'm going to sign while walking, it is best for me to go sighted guide with the person I'm chatting with. I don't like going sighted guide because I feel like I already give up too much control of my life to too many people. When I walk, I want to do it myself with my dog. Sometimes I will go sighted guide with people I trust a very great deal, usually at Jazzfest with my ASL interpreters, sometimes with my SSP if we need to talk and walk at the same time.

I can't really communicate in spoken English because I hate using my hearing aid on its regular setting when I'm on the street. I can only use amplification in one ear, as the other ear can't hear at all. This means that I don't hear in stereo. Hearing in stereo is what gives hearing people the ability to locate sounds, and use sounds to orient and navigate. Having the use of one ear means that I can hear sounds-- usually only the loud ones like noisy car engines or cars backfiring or police sirens. But because I have no ability to tell where the sound is located, all those loud sounds seem to be right on top of me. I feel like I'm about to be run over at any given moment. Because I am blind, I can't rely on my vision to tell me otherwise. The entire experience is terrifying and makes me cringe away involuntarily which just confuses the hell out of my dog who can't figure out what the problem is.

It is better for my nerves if I just set my hearing aid to TCoil, which blocks out all sounds except for what is coming through my neck loop from my iPod. I can walk and enjoy music while Laveau takes care of the hearing and the seeing. I still need to be oriented-- have an idea of where I am and where I'm going, but I don't need sight nor hearing to do those things.
I think my life would make most hearing/seeing people nuts. It would probably seem very methodical and slow, without enough stimulus. Then again maybe not. I find that living this way helps me to be present in the moment. I think that Buddhists call this mindfulness. For the most part-- deafblind people live very mindful lives.