Posts Tagged 'assistance dog'

3rd AD Blog Carnival Is Up!

Assistance Dog Blog Carnival graphic. A square graphic, with a lavender background. A leggy purple dog of unidentifiable breed, with floppy ears and a curly tail, in silhouette, is in the center. Words are in dark blue, a font that looks like it's dancing a bit.

The Third Carnival Is Up!

The new Assistance Dog Blog Carnival is up at The Trouble Is…!

Peruse over a dozen great posts, and comment on your “Reactions” is to them!

Here is the link! Check it out and have fun!

Thanks so much to The Trouble Is… for hosting this carnival during a difficult time.

The next ADBC will take place in July and be hosted by Kali at Brilliant Mind Broken Body. Keep your eye on her blog (or mine) about a month ahead for the announcement of the theme and deadlines.

I’m really looking forward to reading all the posts in our current carnival! Thanks so much to all the bloggers who contributed to make another outstanding carnival!

- Sharon, the muse of Gadget, and Barnum, SDiT?

Left, Left, Left! The Bittersweet Tweak of the SD Working Walk

I’ve been writing about Barnum and me practicing our service-dog walk, or as I call it, “working walk” (WW). (For example, here and here and here, among others.)

I have decided to try to focus on fixing our left turns. With Gadget and Jersey, they were most likely to maintain correct position in left turns, and going forward, and particularly right turns, needed the most work.

I’m not sure why the difference. I think in Jersey’s case, it was pretty straightforward: she did not grow up around chairs, and I had to introduce her to my four-wheeled mobility scooter very slowly. I only used it when I went out of the house. I didn’t need it indoors.

A scooter has a much longer base than a powerchair, so the dog has a natural barrier to line up with already. Then, with Gadget, he learned WW both with me walking and with me using the scooter, and then I switched to a powerchair, after he’d already learned the scooter. So, he had the advantage of that long base to learn on, too.

Barnum, however, has grown up around me using my pchair full-time, and he has had to learn how to stay out of its way to keep safe. Therefore, his natural tendency with a left-hand turn is that when I start turning into him (he’s on my left), he usually walks forward, out of my way, so that we are then facing each other, and then he “catches up” and gets back in line after I’ve turned.

If we are in a tight space, he will back up, instead.

So, he problem-solved this, himself, while he was growing up, and now I am trying to figure out how to tell him, “While what you’re doing was a good strategy for not getting your toes rolled over, if you want to get clicks and treats, you have to trust me that I am paying attention to your toes, and keep following next to me.”

I decided the reason I haven’t been getting this message across is that it’s very hard to do a high rate of reinforcement while also steering, moving, keeping track of his head and his feet, treating, and clicking!

Really, I need to be able to shape this by clicking every time a front or rear paw moves  with my chair when I am starting to turn, in the middle of the turn, and at the end of the turn. It’s impossible to click that often and turn, at the same time!

I’ve tried using my verbal marker (“Yes!”), but that’s not precise or fast enough, and it’s pretty exhausting, too.

I tried going super slow, but even super slow is too fast to be coordinated enough.

Tonight, I asked Betsy to click Barnum’s position, while I steered us verrrrrry slooooooowly around the living room, dispensing cheese, like a big, cheese-dispensing part-human, part-vehicle. My hands were very sticky, and I was dropping cheese on my footrest, my lap, the floor, and even into the dog’s mouth!

He started just trying to lick and chew all the cheese out of my hand as we moved, so I had to pull it back a bit.

Nonetheless, after fifteen minutes of this — which is quite long for such an intensive session — Betsy and I decided to see if I stayed put, if he would get himself back into position. A little free-shaping, in other words.

I sat there, and Barnum looked at me, waiting for me to move. I acted boring.

He sat. No click. He downed. No click. He stood up. At that point, I would have clicked, but Betsy was doing the clicking. I said I would have clicked that, and next time, she did.

Which was soon, because he did another sit, down, stand. Click!

I waited to see if he’d line up again. Eventually he did start to do that, but, Betsy pointed out, “He seems to think he should stare at you and sit, down, and stand when you stop.”

I agree. Here again, I have unwittingly taught an undesirable behavior chain! Barnum is such a master at learning the unintentional cue and the unintentional chain!

I take back what I ever said about him not being that smart. He’s smart, but in a different way than Gadget. Gadget and I had mind-meld. Barnum is a body-reader.  (Jersey, alas, was not all that smart, but she was very eager!)

Anyway, we made some progress, and now I’ll keep tweaking it. And, oh yeah, I’ll untrain that behavior chain. Argh.

The friend who made me the service-dog leash I wrote about yesterday has offered to make me new gear. I hadn’t thought of that, because that leash is actually in excellent shape. Part of the reason for that is that I have only now started using it with Barnum. It was kept safe from him during puppyhood and teenagerhood.

Here’s what happened to the leashes I used while Barnum was growing up. . . .

This is an organic hemp leash, dyed with nontoxic dyes, that I bought especially for widdle baby Barnum, to match his widdle organic hemp collar.  (Next time I’ll know better.)

Red hemp leash torn in two

Notice the teeth marks all along the leash (even where it's not completely severed).

[Image description: A dirt-stained, six-foot, brick-red soft leash, one inch wide, of a thin cotton-appearing material (which is actually hemp), with a heavy brass clasp at one end, arranged on a waffle-pattern beige blanket. One foot from the clasp, the leash is torn apart, frayed, with a couple of longer strands trailing from the torn part. There are small holes and rips in the rest of the leash as well, giving the impression other parts of the leash may not last long, either.]

Below is the service-dog leash I bought for Gadget, near the beginning of my partnership with him. I also had another, forest green, that I originally bought for Jersey, that I also used sometimes with Gadget, and then with Barnum. Both the green and the pink leashes survived all those years of use, and now they each look like this:

Broken clasp on pink service-dog leash

This is one of two service-dog leashes that used to have clasps at both ends, and now have functioning clasps at only one end.

[Image description: Two ends of a hot-pink nylon webbing leash each with a silver snap at the end, lying on a white background. The clasp on the right looks fine, the clasp on the left is broken, with only the stem and a half-crescent of the outside of what was formerly the clasp still attached.]

By the way, all three of these leashes met their doom in the same manner: Barnum was out for a walk. He lunged after something exciting (in all cases, I think, it was another dog he just had to play with, right that very instant!), and the leash went “Ping!” (in the cases where the clasps snapped in half) or “Pffft!” (in the case where the leash ripped in two), and away Barnum ran, to play.

So, yes, I could use some new leashes, especially for attaching to my outdoor powerchair. I got all excited at the possibilities, then confused by a mixture of feelings.

I feel quite bitter-sweet about Barnum starting to fill Gadget’s footsteps in a literal way. There he is, by my side, as we practice what it will be like when we are in crowded, close corners in grocery stores or doctor’s offices.

Sometimes, now, he’s even wearing Gadget’s old harness or pack or leash. It’s very exciting, and it also causes what was initially an unnameable twinge. When I paid attention to the twinge, it blossomed into recognizable heartache.

Maybe it’s good that it’s taking us so dang long to become a SD team. It gives me time to adjust to Barnum doing the job differently than Gadget.

I think I might want a different colored leash for Barnum, just to help me emotionally transition from Gadget. Whatever their color, they need to be very, very strong.

-Sharon, the muse of Gadget (and you thought I was strong!), and Barnum, SDiT and Reformed Leash Destroyer

A Year Ago: Re-Post, in Memorium

Gadget died shortly after noon on November 19, 2009. I am working on a post about his last night, which was actually quite beautiful, strange, and special. It was sad, but not depressing. Aspects of it were actually joyous, funny, and a little bizarre! I hope to post it by the 18th.

Today’s post is a reprint of the first After Gadget post, because it captures so much of what I was going through when I was mourning him afresh.

On the anniversary of his death, Betsy and I will plant daffodils on Gadget’s grave. The bulbs were given to us by a neighbor as a bereavement gift last year.

We will also partake in other rituals, including reading the notes and cards we received last year.

To add to those words, I request that those who knew Gadget, or were touched by him in some way in his life, via internet or youtube or in real life, please post your thoughts and memories about him in the comments section here during the coming week. Or how any particular blog postings about Gadget have affected you.

This community means a lot to me. Your words would mean a lot on our day of remembrance.

Thank you so much.

Peace,

Sharon and the muse of Gadget

BEGINNING AFTER THE END

(First published December 26, 2009)

Here are some numbers:

On November 19, 2009, Gadget, my Bouvier des Flandres service dog, died of cancer. That was five weeks and three days ago. He was nine-and-a-half. We waged war against the cancer for six months. Depending on who you quote, from one-in-four to one-in-eight dogs in the US will die of cancer this year. So, we are in good (or rather, bad) company.

But this blog is not about numbers. It’s about surviving a devastating loss that most people are very sympathetic to, yet few really understand – the loss of a service dog.

It’s about a dog who liked to chase squirrels, slam doors, and let himself out when he wasn’t supposed to. He loved stinky things like cheese and liver — and long-dead carrion! — and me. We shared a fierce, deep, quiet love.

It’s about celebrating him, mourning him, finding ways to live without his love and without his practical assistance. It’s about the emotional and physical journey of grieving a star of a service dog while beginning the raising of a new pup. It’s a place for others who have, or will, experience a similar loss to find comfort and joy.

We fell asleep together

We fell asleep together.

Why start this blog now?

Why not the day after Gadget died? From a practical standpoint, that probably would have made more sense, but nothing about death is practical or neat. Until now, I’ve been too much in shock to do much of anything. I still am in shock most of the time. In fact, right now, writing this blog is the only thing that does make sense.

Why This Blog?

First of all, it’s a way for me to grieve and make sense of this loss. I’m a writer, and so far I haven’t found a way to “cope” that feels like it works. Writing about Gadget, sharing his life and story with the world, seems like the natural path. I’ll share my feelings and my memories of Gadget as a joyful, loving spirit; as a working partner; as a teammate in training and creative problem solving; as a playmate and clown; as my means of survival. In words, in photos, in video. Fortunately for you, he was beautiful.

Gadget with long hair in the winter, lying in the sun

Gadget last winter.

I also hope that for you, if you’ve gone through a similar loss, this will help you grieve, too. Grief in all its forms is welcome here: numbness, anger, denial, sadness, loss, relief, questioning, or whatever you feel.

There are very few resources that I’ve found for grieving the death of an assistance dog.

There are groups who understand the loss of a beloved pet dog. I belong to one such listserv, and it has been a lifeline. The people on it are loyal and open and funny and kind. I love them.

Still, some parts of my loss are unlike theirs. Tonight, for example, I had a lot of trouble getting out of my bedroom because I couldn’t open my door. And I couldn’t call for help because I’m often nonverbal. If Gadget was still alive, not only would he have opened the door, he would have been happy to open it. It would have been fun for him, a game. He would have wondered, “Will I get some liver for this?”

When people help me, even when they are doing it because they love me or they’re being paid to help me, or both, they are never thrilled to do it. Sometimes they are resentful, frustrated, irritated. Sometimes they’re not bothered at all, but I worry that they are, anyway.

When I cry over the loss of Gadget, it’s not just his soft fur, his wet nose, his deep brown eyes, his beating heart against mine, it’s also how much physically harder and more limited my life has become. How much more dependent and scary. His death has created so many layers of aloneness in my life. Some of these layers of aloneness are common for pet bereavement, but some are unique to assistance animal loss.

Sometimes it is even hard to get support from others who have lost service dogs. There are groups for assistance-dog partners who are grieving, but they may be small or inactive. My guess is that unless one is in the midst of grieving, it is too painful to be exposed to the topic. That emotional wound could reopen at any time, because — if we’re fortunate — we will outlive our assistance dogs, again and again. The choice to be a life-long service-dog partner is as Kafkaesque as it is fulfilling. Few who have escaped the black hole of that loss want to be reminded of staring into the abyss again.

This will be a refuge to cry, to remember, to distract yourself, to laugh, and to find little ways — or big ways — to move on. All forms of sincere emotion are welcome here. There is no wrong or right way to grieve. There is just emotion that moves through you, that rises and falls like waves, and the process of surviving loss.

The loss of an AD is not just that of the heart, but of love, companionship, independence, safety, and partnership.

The Coming Attraction

I will be getting a puppy in several weeks whom I will train to be my next service dog. The puppy is due to be born in a week, January 1, 2010.

Looking back necessitates looking forward, and vice-versa. Even as I mourn Gadget, I prepare for his successor. Training the new dog in a Gadgetless home will be part of my mourning process.

Here, you can join me on my journey as a severely and multiply disabled first-time puppy raiser!

It seems a ludicrous, risky undertaking. Even healthy people find puppies exhausting! Yet, I’d always planned for a puppy this time around, instead of adopting an adult or adolescent, as I’ve done in the past. I thought Gadget would be here to help train the pup, as his predecessor helped train him. Now it is just us humans to raise the pup, and me much more disabled than when I trained my previous SDs. Still, I am full of hope.

I am excited and nervous. I already anticipate the joy and frustration, the weariness and triumphs, and how it will take everything Gadget taught me to be very, very, very patient to get through two years of raising and training to get a working service dog again. A dog whom I am sure I will love and come to rely on, but who will never be Gadget.

There can only ever be one Gadget. He wasn’t my first service dog, but he was and for forever will be my best. (I think!)

I wish you’d gotten to know him as I did. But here at After Gadget, you will know him a little. Thank you for joining us in this journey.

Peace,

Sharon and the spirit of Gadget, forever my Muse

P.S. I welcome your thoughts and feelings on my journey or on your own journey — whether you are facing a current loss or have lived through it in the past. Leave comments below.

Gadget stands at water's edge in silhouette with natural blue background.

His last great adventure.

QuickPress: Barnum’s First Service Skill! (Well, sorta.)

This was not at all planned. Today I am having another “stuck day” like I wrote about a couple of weeks ago.

Today was not as bad, in that I have more range of motion (ROM) in my arms, but still cannot pull myself up into a sitting position to transfer or to prop myself up to use the computer. Problems with legs and torso (especially abdominal muscles).

Unfortunately, the PCA working today has injured her back and is currently unable to help with transfers. What to do?

Before she arrived, Barnum was hanging out with his front half on my bed, looking out the window, enjoying the fact I was awake. I tried to lure him toward me, but we were not communicating. Note to self: Teach Barnum how to come closer to me on the bed, put behavior on verbal and nonverbal cue.

Anyway, when the PCA got here, by writing notes, I was eventually able to ask her to give me one of Barnum’s tug toys, which we seldom use (to keep it special). It’s not one of his favorites (which is surprising, because usually there are few toys Barnum doesn’t love), but having kept it from him most of the time still makes it interesting enough for the occasional tug game. It never occurred to me I could use it as an assistive device, but I needed someone to help pull me forward, and Barnum loves to tug and is very strong!

So Gloria handed me the toy. It’s a yellow slightly-stuffed “tuff” toy, about two feet long, called “Ultimate Tug-o-War” made by mydogtoy.com. I got it as part of my quest for toys that Barnum could not destroy in five minutes of aggressive chewing. (I’ve been working on a post about Barnum the Destroyer for quite a while, with ratings and pictures of which toys I suggest for other large, aggressive chewers, and which toys I don’t recommend, and why.) This one’s rated nine-out-of-ten on the toughness scale of “soft toys,” with many, many layers of fabric and stitching to make it hard to shred. It has a ring on each end and a bar in the middle. Below are some pics of Barnum with the toy.

Barnum chews on the center bar of his yellow-and-black tug toy, decorated with black and white bones. He is sitting on a tan dog bed, with his head down.

Mm, chewy.

Barnum lies on tan dog bed, looking into the camera. The yellow tug toy is laying between his front legs. His right paw sits over the ring on one end of the toy, while the other end lies across his upper left leg. He has a "caught in the act" startled expression on his face.

What? You said I could have it.

Anyway, Gloria gave it to me. I showed it to Gadget, who got very interested. I held it out. He gripped on. I pulled. He pulled. He thought we were playing tug first thing in the day. How lovely! His favorite game! I used his counter weight of pulling to pull my upper body into sitting position.  Yay!

I wanted to hug him and praise him and give him treats, but I wasn’t able to. I put down the toy, too, and didn’t continue to play, which I realize was a mistake, in hindsight. However, at the time, I was in pain, and I really had to pee. I just wanted to get into my powerchair and get to the bathroom.

So, that was very exciting. Obviously, this is not a finished service skill in any way, shape, or form, but it gives me some ideas of what may work as a service skill in the future. Later, I tried to interest him in the toy again when I had clicker and treats and was functioning a little better. But he didn’t want to take it.

I think there were a few factors causing this unusual desire not to grab a tug. One is that it’s not a favorite. If I had held out his spider, I’m sure he would have pounced. Another thing is that earlier he got no reinforcement for tugging with me. He tugged, and then afterward, we didn’t keep playing, he got not praise (because I couldn’t make a sound), no clicks, no treats, etc. Also, now I did have the clicker and treats, so he went into training mode, meaning he kept targeting (nose touching) the toy.

He was also not getting the usual cues for tug. We don’t normally play in my bed. I’m not normally lying down. I wasn’t making any of the noises he associates with play. For example, I couldn’t say my usual cue for tug: “Git it!” Another note to self: Teach tug in bed and nonverbal cue for “Git it!”

Finally, our default for me holding anything out to him is for him to gently touch it with his nose. So, that’s what he did. I tried to shape it into a grab, but I wasn’t up to it, physically.

Nonetheless, there we have it. Barnum has helped me in a useful way for the first time! I still don’t know if we will make it as a service dog team, but I hope so! It felt really, really good to have faced that problem, figured out a way he could help, and then put it into action.

Planned upcoming posts (not necessarily in this order, and not necessarily on time!): Barnum videos of food versus games; memorial to Gadget on the anniversary of his death; and intersection of Lyme and my other diseases — which cause what?

Your comments are always warmly received.

Peace,

Sharon, Barnum (SDiT), the muse of Gadget, and the spirit of Jersey (who never played tug a day in her life)

My Sweet Jersey Girl

This post is for Assistance Dog Blog Carnival #1. The theme for this issue of the carnival is “The First.”

* * *

If you sometimes follow After Gadget, you might think that Gadget was my first service dog (SD), and that Barnum is my first successor. In fact, Gadget was once a successor, and Barnum is my third SDiT. What a disservice to the original predecessor, the one who started it all — my first SD, my sweet Jersey girl.

Before Barnum, before Gadget, there was Jersey. She was the first dog I acquired as an adult. She was my first bouvier des Flandres. She was the first dog I trained to be my assistant. This blog is dedicated to her legacy, especially what she taught me — and is still teaching me, even now, by reminding me of our training process — about patience. That goals have to be reached slowly, with the dog’s needs and timelines as the roadmap, not some arbitrary idea of what I “should” be accomplishing because someone else’s dog figured it much faster.

This blog is nothing if not a reminder to me about how, by starting with low expectations and repeatedly setting us both up to succeed, I was able to give Jersey what she needed to be my teammate. She taught me that.

Jersey in profile

My Sweet Jersey Girl

From 1999 through 2000, I wrote a series of articles about Jersey for Rescue Roundup, the newsletter of the American Bouvier Rescue League (ABRL). I decided that the words I wrote about Jersey when she was still with me, and when so much was fresh and new about SD training, would carry a much greater impact than what I’d write now, dimmed by hindsight.

There’s too much to cover in one post — it was a four-part series! — so this post will just cover the beginning of our relationship. Many seminal firsts — the first time I went grocery shopping without human assistance, the first time I realized Jersey was important to my safety, the first time she learned to fetch (which also led to her first retrieving service skills and her first realization that toys could be fun), and the first time we tried clicker training (which took place a year after the first article was written) — occurred later on and were described in later issues of Rescue Roundup. This post focuses on the firsts of Jersey’s arrival and beginning training, and an event that most dog owners probably take for granted, but that I had fantasized about for years: going for a walk.

Here are excerpts of the piece I wrote for Rescue Roundup, Winter 1999:

. . . During these years of extreme isolation and illness, I formed a plan: I would move from the city to the country, buy a mobility scooter so that I would be able to get around more and to walk a dog, and then get the dog.

Eventually I found a little house in a rural town, moved, and acquired a scooter. I fantasized about walking my dog the three-quarters of a mile to my mailbox in my scooter, enjoying the scenery and the companionship. . . .

I began researching hypoallergenic breeds. I started also to learn about assistance dogs. . . . The more I thought about it, the more I felt that a service dog could help me to lead a fuller, safer, more independent life.

Bouviers seemed an ideal choice: they had been bred as working dogs, were strong and rugged, and tended to bond well with their human pack members.

I researched service dog programs and discovered that most were totally inaccessible to me. . . . One program that [otherwise] seemed a good match was very expensive ($20,000) and was reluctant to even consider a bouvier, telling me they were “snippy attack dogs,” but I applied anyway resigned to getting a different breed. The program rejected my application.

I had also been making connections in the bouvier world — applying to Bouvier Rescue, meeting bouvier owners, and searching the Internet for other people with disabilities who had bouviers as service dogs. I decided that I could train my own service bouv.

While almost everyone seemed to agree that a bouvier could make a fine service dog, very few of the people I spoke to seemed to think that I could train one. Bouvier trainers and breeders told me that bouviers were stubborn, strong, and hard to manage, and I would need professional assistance. Many questioned whether I ought to be considering getting a bouvier at all, even as a pet. Service dog handlers told me that training a service dog is difficult and requires expertise — I should apply to a program. I called trainers to see if they would help me private train; they said that they didn’t do service-dog training.

Sometimes it was hard to tell what these “dog people” were really thinking when they gave me confusing, conflicting, and often discouraging advice. I believe some simply saw a disabled young woman and dismissed me. I was not their image of a person who could train a strong-willed breed to perform complex tasks. And, I admit, I wondered frequently if they were right. . . . There were days when it was more than I could manage just to feed myself, many more when showering or dressing was beyond me. The prospect of being responsible for exercising, pottying, feeding, and grooming a dog was terrifying enough. Where would the energy and expertise to train come from?

I spoke frequently with Bouvier Rescue. I was encouraged to focus on finding the right bouvier as a companion to me. Later on, if it worked out, I could think about getting another bouv to train as a service dog. With a mixture of excitement and resignation, I gave up on my service dog dream and prepared to welcome my new companion.

In March of 1999, she arrived: Jersey, a five-and-a-half-year-old bouv girl who was being rehomed by her breeders. She was beautiful, 65 pounds, with cropped ears and a docked tail, and a black coat. Jersey had been shown in conformation and lived primarily in the kennel.

She was very mellow and sweet, a good “starter bouv” for a person like me who spent almost all her time at home and wanted an easygoing, good-natured companion to lie around by her side.

The first few days with Jersey were wonderful and horrible. She was sweet, friendly, adorable, and easy to handle, but she was also big, clumsy, and scared of everything. It hadn’t occurred to me that every chair, table, and oxygen tank would be targets for her to bump into and knock over, causing her to skitter, panic-stricken from the room. Any sudden movement or raised voice made her cringe or flee.

Meanwhile, I made a decision: I was going to start training Jersey right away in obedience. It would be a good way for us to bond and gain some much-needed confidence, aside from being useful, since the only command that she appeared to know when she arrived was “kennel.” If it went well, we would continue and try some service skills. If we failed, then we would not be any worse off.

I joined an email list for people with disabilities who had trained (or were training) their own assistance dogs (ADs). More than anything else, I feel that the support, encouragement, guidance, advice, and experience of other people training ADs has made it possible for Jersey and me to be where we are today. There was so much against us — Jersey’s age, my inexperience, my inability to hire a private trainer, Jersey’s low drive and skittish temperament — and yet these other disabled folks kept giving me reasons why we could succeed. And, they provided inspiration (examples of people who had done it themselves), which is more reassuring than any words.

The first command we approached was “attention.” I would make a clicking sound with my tongue, and when Jersey looked at me I would praise her and give her a treat. I also praised and rewarded her any time she looked at me on her own. Jersey is very motivated by food. It took only a few days before Jersey spent almost all her time staring at me.* I felt like a human gum-ball machine, dispensing kibble and praise all day long. It was exhausting! Sometimes I went in my room or put her in her crate, just so I could take a break without discouraging the behavior.

Jersey inside a futon

Jersey gives The Stare even from inside a folded futon.

*Something dawned on me in the writing of this post: Jersey was a silent dog. She never barked or growled, except in her sleep. Her main mode of communication was The Stare. If she wanted something — attention, to go outside, food (especially food!) — she would sit and stare at me. If something or someone got in the way of her “stare beam,” she would move around them so that she could level her gaze at me, unblocked. It was only when I was reading these old articles and remembering that the first thing I taught her was “attention” and how good she got at it, that it occurred to me that maybe she hadn’t always been a silent dog, but that The Stare was a result of our training. She learned early on how to train me to give her treats by staring at me, and if it worked then, why not continue it the rest of her life? After all, it was 100 percent reliable: Every night she stared at me to remind me to feed her dinner, and every night — no matter how long it took for me to get the hint — I fed her!

Positive-reinforcement training can have a wondrous impact on a dog, especially a “soft” dog or rescued dog. Jersey is a perfect example of a dog that would have been very slow and difficult to train with compulsion (command-correction-praise) training, not to mention the effect it would have had on her psychologically. In the beginning, even the gentlest chain correction or stern tone made her jump out of her skin. It was simply counterproductive to use them. Additionally, as astounding as this may seem, Jersey did not seem to understand praise. I had never been around a dog before that did not understand that a high-pitched, happy voice meant praise. Yet, for our first couple of months together, I could praise Jersey until I was blue in the face and get no  response — no wagging tail, no interested expression, nothing. It was only after weeks of her associating praise with receiving a treat that she began to understand the meaning of praise and respond with pleasure when I praised.

Further, using positive-reinforcement training made a remarkable change in her personality. She gained confidence. She began to take an interest in her surroundings. She learned that she could follow a command and be rewarded. I afforded her little opportunity for failure, so we both felt proud of ourselves and had fun. It was fascinating, and often comical, to come to understand her learning process, especially in the beginning, when she was still learning how to learn. After she was reliably looking at me on command, in any situation and with distractions, we started on “sit.” We’d been working on “sit” for a few days when I noticed that she would frequently run up to me — while I was going to the bathroom, making dinner, watching TV, or otherwise not training her — and proudly and excitedly sit down in front of me, awaiting her reward.

Our biggest priority, aside from getting to know each other and beginning the rudiments of training, was to get her to walk next to me in the scooter. Since Jersey arrived in March, when there was still snow on the ground, my roommate, Laurel (who would move out in the summer), had agreed to take Jersey for her walks until the snow melted and I could use the scooter. However, knowing how freaky Jersey got around things that moved or made noise, I was sure that the scooter, which moved and made noise, would take some hard work to get used to. Thus, we began to work on Jersey attaining three crucial goals: building a positive association with the scooter, learning “heel,” and leaning “back up.”

Teaching “heel” was relatively easy as Jersey was very nice on the leash, especially with me. According to Laurel, Jersey felt fine about yanking her around! At any rate, I was able to get Jersey heeling in the traditional way, with me walking, with daily short sessions.

At other times of the day, I took Jersey down to the basement and talked happily and excitedly to the scooter. I dropped treats on it. I sat in the scooter and praised Jersey and fed her treats. Once Jersey knew some commands (“attention” and “sit”), we would train there, with me sitting in the scooter to give Jersey the idea that she could feel confident and get rewards while I was in the scooter, plus that the scooter was a place where commands were given and obeyed. Finally, I felt confident enough to start the scooter’s control device — not moving the scooter, but just getting Jersey used to the sound of the machine. It all went off without a hitch.

Meanwhile, I had also been teaching “back up.” The reason this was important is that my scooter is very large and has a wide turning radius. There are times I need to back up, and I wanted jersey to know how to do that with me. Teaching back up was easy. I would stand with her in the narrow aisle between her crate and the wall and slowly move toward her, saying “back up” and moving my hands in a “shoo-shoo” way. As soon as she took a step backward, I praised and gave a treat. Over time she learned to back up farther and in other places.

Sharon, Jersey, and Gadget

My big-ass, four-wheel scooter, Jersey sitting next to me. (At the time of this photo, Gadget had entered the picture, too.)

By the time I was ready to move the scooter, Jersey was already learning heel and back up. I started first just by rocking back and forth in the scooter, with the engine off, praising and giving treats. I would jiggle the basket noisily so she could get used to the noises it made without the added element of movement. She was cool as a cucumber. Then, I had Laurel hold Jersey a distance away while I used the scooter so Jersey could see me using it, but not feel threatened. I was so excited and please the first time we did this and Jersey tried to run after me! A lump formed in my throat.

From there it was a matter of slowly and carefully building up Jersey’s positive association with the scooter and using the commands “heel” and “backup” in relation to the scooter. Everything went great, and I became overconfident. On the first warm day when the snow had melted enough to leave some bare patches of grass, I tried to take Jersey out with the scooter. The bumping and jangling of the scooter and its basket over the rough ground, so different from the gentle whirring as it glided over the smooth concrete in the basement, totally freaked her out. She would not heel! She wouldn’t even come near me! She pulled at the leash and panicked at the scooter’s movement and noise.

I felt devastated. I wondered if I had ruined my chances of ever taking Jersey for a walk. But, with some thought, and encouragement from my online friends, I realized that if I took a few steps back and built up very, very slowly, we might regain the lost ground and even move forward.

I had to go back to sitting on the inert scooter, giving out extra treats, conducting extra training. Additionally, I realized I had neglected to introduce Jersey to the makeshift ramp which I used to exit the basement, a sheet of plywood that banged when I went over it. We spent many sessions of her getting praise and treats for stepping on the ramp. I also gave her more opportunities to see me use the scooter away from her.

When we were ready to test out her scooter-worthiness again, I had learned my lesson. I had Laurel walk Jersey several paces behind me as I went across the lawn and rocky dirt driveway. When we got to the smooth pavement of my landlord’s driveway, Laurel went home and Jersey and I worked there for half an hour until Laurel came back to take Jersey home. I did this a few times, and each time as Laurel walked her ahead or behind me, Jersey would strain at the leash, trying to get to me. This was very encouraging. Following Jersey’s lead, I would let her walk with me part of the way, giving her lots of loose leash so she could keep her distance, but still be by my side.

I remember the first day I took Jersey for a real walk. I asked Laurel to come along because I wasn’t sure how it would go. Would Jersey suddenly freak out and not want to walk with me? Would the scooter make it all the way to the mailbox and back, or would it die halfway up my landlord’s devastatingly steep driveway?

None of the above! Jersey, Laurel, and I had a perfectly nice walk. (We even saw an otter!) True, Jersey was a bit skittish when I went over big bumps or when pebbles spat out of my back wheels. She kept a safe distance from the scooter and needed encouragement to keep a good pace. But I was elated! We did it! we walked all the way there and back. I held the leash. The scooter made it up the driveway with no problem. Jersey seemed happy, if a little cautious, but definitely glad to be out moving with me for the first time. And, I thought, this is it. This is the beginning. Now I can walk my dog!

I hope you enjoyed this trip down memory lane with me. And enjoy the other pieces in the Assistance Dog Blog Carnival!

As always, we welcome your comments!

-Sharon, Barnum, and the muses of Jersey AND Gadget

Announcing the Assistance Dog Blog Carnival!

**UPDATE**

The Assistance Dog Blog Carnival is now taking place! Read Assistance Dog Blog Carnival #1! Enjoy!

* * *

Woohoo! Thank you to everyone who commented on my idea to hold an AD Carnival! In response to your enthusiastic support, I’m announcing the first carnival topic and deadline, plus answering your questions about what a carnival is, how it works, and how you can participate!

What Is a Blog Carnival?

Wikipedia has a good general definition:

A blog carnival . . . is similar to a magazine, in that it is dedicated to a particular topic, and is published on a regular schedule. . . . Each edition of a blog carnival is in the form of a blog article that contains permalinks to other blog articles on the particular topic.

Carnival posts are generally collated by the author by soliciting relevant contributions. . . [S/he then] collects links to these submissions, edits and annotates them and publishes the resulting round-up. . . . Many carnivals have a . . . principal organizer, who lines up guest bloggers to host each edition. . . . The carnival travels, appearing on a different blog each time.

How Will the Assistance Dog Carnival Work?

Currently, the plan is to hold it quarterly, guest hosted by a different AD-related blog each time. (More details on this below.) I guess After Gadget will be the official home/principal organizer, until or unless someone else wants to take the job off my hands!

Who Can Submit Posts?

Anyone can submit a post. You need only have a blog, and your post must relate to the topic of guide, hearing, or service dogs (and fit that issue’s theme — see below about themes), even if your blog is not typically about assistance dogs.

Posts can be about puppy raising, SDiTs, programs/schools, retired SDs, perspectives on ADs from people with disabilities not partnered with ADs, or anything else relating to the topic of assistance dogs. You do not need to be an AD partner or trainer to submit. Posts from personal blogs as well as from AD organization blogs are welcome.

What Will the Assistance Dog Carnival Be About?

Topics will vary with each edition. The host for each edition will announce their theme at least a couple of weeks ahead of time (maybe more, if possible, to give us people with deadline issues a chance to get something in?), along with the deadline for submissions and expected publication date.

Examples of themes from the Disability Blog Carnival include identity, distance, and disability and work. In the Patients for a Moment (PFAM) blog carnival, there was “love or other four-letter-words” and “your most laugh-out-loud-illness-moment,” among others.

I tend to like themes that are broad and can be interpreted many different ways, because that gives bloggers creative freedom and makes for a diverse group of posts to read. On the other hand, sometimes it’s nice to know what you’ll be reading, thematically.

Who Is Hosting This Year’s Carnival?

The first host will be me, right here — theme and deadline announcement below! — and our delightful hosts for the next three carnivals are as follows:

Yay! Thank you for stepping up!

Future hosts and dates to be determined.

When Will the First Assistance Dog Blog Carnival Be Announced?

Right this very instant coffee.

The theme for the first carnival will be . . . “The First”!

The first . . . what? That’s up to the bloggers.

The first time you met your new guide, the first service dog you had, the first time your AD alerted to your medical condition, your first experience as a puppy raiser, how you dealt with your first access denial, the first thought that pops into your head when you see an AD team, the fear you had to get over first before you decided to partner with a canine assistant . . . the possibilities are endless!

The deadline for submission is Tuesday, October 19, by midnight of whatever time zone you’re in. The carnival will be published a few days later. (How fast I can put it together depends on  how many submissions I get and how functional and/or busy I am that week.)

Bloggers can submit posts any time between now and the 18th by commenting here, below, with the name of the blog, the name of the post, and the URL for that post. You can either write something new especially for the carnival (which is nice, but not required) or post a link to a blog you’ve already written that fulfills the theme. Just be sure the link is live and the post is already up when you submit it, so I can go read your submission when I’m putting together the carnival.

Making your blog as accessible as possible to people with as many different disabilities as possible is encouraged, although it is not required. Here is one resource for learning about some basic things you can do to make your blog more accessible.

I’ve tried to answer all possible questions, so that probably means I’ve forgotten something. Feel free to ask in the comments section.

I’m really excited that this is happening! Thanks to everyone who has commented, volunteered, and is otherwise contributing! And please, spread the word! Write about the carnival on your blog, post links, tweet, etc. Thank you!

Kisses from Barnum.

-Sharon and the muse of Gadget

 

Without Gadget, Who Am I? A SD-less Service Dog Partner’s Identity

Every month, there is a disability blog carnival. Every month I start a blog for it and don’t finish it by deadline. This month’s carnival topic, “Identity,” is particularly close to my heart, so I’m forcing myself to squeeze out this post on time.

My identity, for years, has been inextricably bound to being a service dog partner. In fact, my avatar is ServiceDogPartner for most sites that require them.

How does this identity play out in everyday life?

A telling, one-word answer is “We.” Any activity, especially if it involved leaving home, required, or was enriched by, the participation of my service dog; therefore, we were a we/us, not an I/me:

  • “We’re going to the doctor tomorrow.”
  • “We went for a walk.”
  • “We picked apples in the back yard.”
  • “The manager gave us a hard time about entering the shop.”

In fact, the first big “Aha moment” I had about what a difference a service dog could make in my life was when Jersey, my first SD, and I went to the grocery store without human help, for the first time in years.

Jersey in profile

Of course, I had trained Jersey, devoting all my energy to the endeavor for many months, in the hope that she would make me more independent, less restricted, but I don’t think I actually believed my own pep talks to myself until that day at the grocery store. What a revelation.

Jersey went everywhere with me. She reduced my isolation. She helped me participate in activities around my home that I otherwise couldn’t have done. For example, I was able to garden because she carted the tools and plants out to the yard and offered bracing and walking assistance when I became too exhausted. At the store, she carried my money, pills, water, and grocery list in her pack, as well as small groceries. When we got home from the store, she carried the bags from the van to the house, and from the door to the fridge. In little ways, every day, she helped me save energy that I could use on writing or talking to friends or just resting.

That was at a time when I was less disabled than I am now, and with a service dog who knew half the skills Gadget did. Jersey changed my life, but Gadget revolutionized it.

Sharon, Jersey, and Gadget

How can I even put into words what Gadget meant to me, how inextricably he was entwined in my life, how he was a part of my body, mind, and soul? It’s a struggle I have every day now, as the anniversary of his death descends on me, and my grief at his loss feels overwhelming. I grope for language that can convey who he was/we were. My unexpressed grief is like a magnet attracting hard, metallic shards of sorrow, anger, confusion, and fear; it grows larger and heavier, digging into my heart and weakening me.

Where do I begin?

This is the crux of the issue in so many ways: Where did I begin and Gadget leave off, or Gadget begin and I end? How do I continue without him, without this part of myself? Without him, who am I?

Maybe accepting my inadequacy to truly convey what Gadget was for me is the essential first step in beginning to define it, or at least hint at it:

  • Gadget was always with me, even in my dreams. This was true with Jersey, too, after we’d become a working team. Just as, after I became disabled, in my dreams I also had MCS and CFIDS, there came a point where Jersey was by my side in my dreams. When Jersey retired and Gadget took over, he entered my dream world even more quickly than Jersey had. Even in my subconscious, he was an extension of me. As I’ve written in previous posts, after he died, he haunted my sleep.
  • Gadget was my hands. He turned lights on and off. He opened and shut doors. He picked up things I dropped.

This video shows some of the skills above and belowRead the video transcript here.

  • Gadget was my legs. He brought me water. He brought me the phone. He helped me transfer.
  • Gadget was my voice. He carried messages to Betsy from me. He understood and followed signed requests. He let my PCAs know I was awake and needed their assistance.
  • Gadget was my memory. He alerted me (sometimes woke me) if the oven timer was going off or if someone was at the door and I’d otherwise sleep through the appointment.
  • Gadget was my safety. He knew how to run to my landlord’s house with a message if I was stranded. He helped keep me warm when I was without heat during the week-long ice storm power outage. He stood by me, barking and growling, if a strange person entered my home unannounced.
  • Gadget was my strength. He helped me stand up and walk when I was too weak or dizzy. He helped pull my manual wheelchair if I couldn’t use my powerchair. He carried or carted things that were too heavy for me.

That tells you what he was to me, but not who he was.

  • He reveled in his strength and speed. He liked to slam the doors shut. He loved to run, to wade in the water, to go on long walks off-leash, always checking in to make sure I was following, or doubling back to me before sprinting off again.
  • He kept me company. He was warm and soft and loving. He would plant the top of his head against my chest so I could scratch behind his ears. He put his head on my leg in the car.
  • He was calm, grounded, wise, and still. He let things roll off his back. He was patient and relaxed. Not much got to him. He was a dude.
  • He loved to train and to learn. He loved an intellectual challenge. He liked to figure things out. He made mental leaps that left me breathless and my lesson plans obsolete in moments.
  • He was trusting and knew how to relax. When invited onto the bed, he’d drape himself over me, or push me out of the way with extended legs. He let himself be poked, prodded, manipulated, squeezed by me, my PCAs, and countless veterinarians.

We fell asleep together After our nightly tick-check, we were both so relaxed we fell asleep just like this.

  • He was funny and sassy. He was his own dog. He wasn’t above sneaking around to get his way. He’d let himself outside when he wasn’t supposed to, or leave my room to visit with his favorite of my PCAs when he was supposed to be in my room with the door shut. This is what happens if you give a smart dog the tools to obtain his own freedom and independence.
  • He was my best friend and my comfort. I loved the way he felt, the way he smelled. My hands knew every inch of him, every bump on his skin. My eyes knew every spot or stripe of his coat.
  • He was my traveling companion. He was home.

I needed these parts of him just as much as the others, because his separateness, his unique personality and doghood, was part of our relationship and thus our partnership.

After Gadget died, I’d turn to look for him to help me in the ways I’d been accustomed — to open doors, to carry messages to Betsy, to bring me the phone. I felt as if a piece of my body had been severed, as if I was reaching out my hand to open the door and discovering I had no arm. I felt such deep pain, loss, and confusion when I realized again and again that he was not there that it felt like emotional phantom limb pain: the parts of my body and mind that lived in Gadget had died, and now I was no longer whole, but the pain of what had been there lived on.

Now, without a service dog — a non-partner — who am I? Where have those pieces of myself, and the pain of the shadow parts, gone?

In some ways, the pain has dulled. I don’t feel there has been much actual healing, more of a sense of physical and emotional numbness, the exposed nerves on ice. I have mostly adapted to not having the assistance I did before, mostly forgotten what it was like for life to be easier. I think this is a typical part of living with disability — we become habituated to our limitations and therefore don’t realize just how much pain, exhaustion, isolation, or limitation we are dealing with, until something (a medication, a piece of medical equipment, a personal assistant) eases the difficulty. Then we think, “My god, why didn’t I get this help years ago?”

Having Barnum in my life muddies the picture. He is my dog. He provides companionship. But he is not (yet?) a service dog.

He takes away energy, uses my strength, taxes my limbs. I am giving, giving, giving and getting nothing back, physically. Emotionally, it’s a cocktail: I am exhausted, frustrated, and mentally and emotionally overworked most of the time, yet he also makes me laugh, makes me feel loved, provides companionship, gives my life goals and direction.

Nonetheless, training a successor without a current SD in place keeps me in limbo. He is not yet a service dog. He cannot even be called a service-dog-in-training, because he does not yet have the obedience or public access skills or the beginnings of the service skills necessary to earn that title. Still, almost all my time and energy feed the hope and belief that some day he will be my service dog.

I hate existing in states of betweenness, living on hope or the promise of future gains. It was one of the promises I made to myself when I first became disabled by chronic illness: I would not devote my life to cure, not spend all my mental, physical, emotional, or financial resources on experimental treatments that might someday have the potential to reduce my illness somewhat — or not. I do get treatment. I do seek improved health and function. But, for fifteen years, I have refused to sacrifice my life now — which is real and true — for an ephemeral maybe of the future. I’ve seen too many people put their lives on hold until they get better, only to come to the crushing realization five, ten, fifteen years down the line that they are still sick or disabled, no better off for their grasping after a cure, just older, and without the skills or assistance they could have used their energy on to have a richer life with disability.

Yet, here I am, doing much the same. In my heart, I am and always will be a service dog partner. Even though I have no canine assistant now, my life revolves around cultivating one, even knowing that there is always the chance we might fail. Barnum could develop a physical injury or illness or a temperament issue, or suffer a training catastrophe, that would render him unfit to work as a service dog. We could become a great SD team and then have him get sick, traumatized, or die before his time. Even if he does turn into an excellent SD, living out a long, healthy, happy working life, the fact remains that I am sacrificing a great deal now, every day, for that future.

I have arrived at the answer to my question: Who am I without a service dog?

I am a person who is willing to lay almost everything on the line, including one of my fundamental beliefs about the best way for me to live with disability, in order to become an active service dog partner again.

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? “

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey in profile

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.

BADD: Q&A on Being an Assistance Dog Partner

Blogging Against Disablism Day“>The graphic for BADD, a multicolored square comprised of twenty other squares of stick figures, mostly standing, some wheelchair symbols or with canes

Today, May 1, is international Blogging Against Disableism Day. So, this blog will be a bit of a departure from the usual. Actually, since I’ve barely been blogging since Barnum arrived, any blog is a departure these days! But I’m very motivated to get this one out because I’ve been looking forward to participating in BADD.

(By the way, Barnum is doing really well! I love him to bits. I keep wanting to blog about this or that exciting or adorable or heartbreaking thing, so I have many partial posts. They won’t be in chronological order, but I’ll get them up eventually!)

In case you are wondering, “disableism” is the term used in most countries outside the US for what we, in the US, call “ableism.” [The preceding link has a nice, succinct definition of ableism, but you can find many others that go into more depth.] If you don’t know what either of these words mean, here is your chance to learn!

When I was writing up my FAQ, there were a lot of comments and questions I wasn’t sure if I should include or not, but they are perfect for BADD, so here they are. (Additional comments and questions, not as closely related to ableism can be found on the FAQCC page.) Some of the questions below are direct quotes, but most are either paraphrases or compilations of the same type of question or comment I’ve heard many times. Because Internet communication and face-to-face communication tend to be different, some are comments I read online (community forums, Facebook, here at After Gadget), others are questions I’m asked “in real life,” and many are a combination.

Warning: It’s pretty hard to address some of these issues without sounding a bit snarky. (Or way snarky.) But I’ve noticed that most blogs err on the side of snark, so hopefully you’re used to it. Nevertheless, this post is aimed at informing those who need informing, amusing and affirming my comrades, and yes, allowing me to blow off some steam on a few pet (pun! — see below) peeves. If  you’ve said some version of the things I don’t like, it doesn’t mean I don’t love and appreciate you. After all, Gadget wouldn’t have cared, and he was an excellent judge of character. It just means, we’re all learning.

Frequent Questions and Comments on Being an Assistance Dog (AD) Partner

General Questions and Comments

Q: Who trained your service dog (SD)?

A: I did. Yes, me, a disabled person! I train my own dogs!

Q: That was sarcastic and overly emphatic. How come?

A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”

These questions assume that because I’m disabled, I must be the recipient of charity. (And by the way, most AD programs charge for their dogs — many thousand dollars). I particularly find it irksome when someone asks who trained my dog after I have already said that I train my own service dogs. (Yes, it happens often.)

To sum up: The frequency of this question, the patronizing tone which sometimes accompanies it, the astonishment with which my answer is usually greeted, and the fact that people ask it after I have already told them I am my own dog trainer is insulting. It suggests that many nondisabled people have trouble wrapping their minds around the idea that a person with a disability (PWD), or maybe especially a person with multiple disabilities, is capable of training her own assistance dog.

The corollary is that sometimes, when I am interacting with someone online who therefore cannot see my disabilities, I will say I am a PWD raising a puppy to be my service dog, and they gush in response how noble and big-hearted I am to do this work. In this case, the nondisabled person has had to ignore the fact that I said I was disabled and that this will be my service dog in order to fit the idea of me being a nondisabled “puppy raiser” into their world view. When I correct their assumption, suddenly my dog-training efforts are no longer so laudatory.

Both these types of comments and questions are forms of dis/ableism. Again, I encourage you to please learn the definition of ableism. Reading blogs about disability rights issues can also help; there are some great ones on my blogroll.

Q: Isn’t there a non-offensive version of that question?

A: Yes, there is. Sometimes people ask in a neutral way, “May I ask who trained your dog?” or “Did you train him or get him from a program?” or something along those lines. If their response, on hearing that I trained him is not incredulous gushing, but treated as just another interesting piece of information, that is very nice. Sometimes people say something like, “You must be a good trainer, he’s great!” Of course, flattery will get you everywhere.

Actually, some people ask this because they have a disability (often a hidden one) or because someone in their lives has a disability, and they are wondering if an assistance dog might help them. I am very eager to give them information, including a leaflet with the contact information for an assistance-dog advocacy organization of which I’m a member. I often give them my own name and email address and encourage them to contact me.

Likewise, if the person is another dog-training fanatic, it can be fun to “talk shop.” I do like to meet up with other assistance dog partners when out and about because I’m pretty starved for “real-life” assistance-dog friends, but I understand that not everyone wants to get into an AD conversation every time they leave their house. (See below.)

Q: What kind of dog is that? Can I pet him? [Pet, pet, whistle, clap, shout, wave, offer treat.] Can I give him this biscuit? What’s his name? Where’d you get him? What does he do for you? Can I monopolize all your time and energy and breathing space to talk to you about your dog?

A:

Long answer: Do you see that I am using oxygen and a mask covering my nose and mouth? And that I am falling out of my chair with exhaustion? Did you know that once I get home, my PCA will have to help me bathe, change my clothes, wash my AD, and my powerchair because of all the chemical fumes that sink into hair and skin and fabric? Did you know that if you pet my AD, not only are you distracting him from his job, but you are also getting even more chemicals on him that we will have to shampoo off?

Short answer: I’m trying to buy something. Here’s a leaflet.

Non-Snarky addendum: I know that many AD partners like to interact with the public about their ADs. Sometimes I do, too. It depends on the situation (how sick I am, what the environment is, the tone of the interaction, etc.). It’s true that for many PWDs, partnering with an AD helps break down isolation, and that has been true for me, too.

I also think it makes a difference what questions you get asked and how often. For example, many AD partners find it particularly intrusive and offensive to be asked what their AD does, since this is often akin to asking details about their disability or daily living needs. If I’m already in a conversation with someone about my AD, and I think their question has a valid basis, and isn’t just nosiness, I might be okay with it. I also usually give examples of the most obvious and least personal tasks. However, bear in mind that asking, “What does your dog do for you?” could be like asking a stranger, “Do you have trouble getting up when you fall? Do you take medication that you need help to remember? Do you have a panic disorder that your dog assists you with?”

Another issue is since my SDs have been Bouviers des Flandres (usually with short haircuts I do myself), I am constantly asked, “What kind of dog is that?” When I answer, most people say they’ve never heard of them. I actually made a brochure called, “What Kind of Dog Is That?” after I partnered with my first Bouv, Jersey, just so I didn’t have to get stuck in long explanations about what a Bouvier is.

The moral of the story is that everyone is unique, and some people love to discuss their ADs, some people don’t, and everybody has good days and bad days, hurried days and mellow days. Also, bear in mind that almost all of us get asked questions or hear comments whenever we’re in public. So, if you want to approach a stranger about their working dog, try to limit your questions, and be prepared to gracefully take “no” for an answer. I recommend approaching with something like, “Do you have a moment to answer a question about your assistance dog?” That way, you acknowledge that the PWD has a life that is not devoted to being a spokesperson, and you’re giving them an “out” if they don’t want to talk. If you have a specific reason behind your question, I would open with that, which indicates that you don’t intend to take up all their time.

Questions and Comments Arising from Gadget’s Death and/or this Blog

Q: I am so sorry about the loss of your pet. I know just what you’re going through because I lost my pet dog, too, and I loved him so much.

A: Thank you for your sympathies. I’m sorry about the loss of your dog, as well. I have lost much-beloved pets, too, and it is very painful. The grief can last a long time and is sometimes devastating. In fact, it is often a worse loss than that of a human loved one because our relationship with our animals is usually entirely positive, without any of the anger, guilt, resentment, or other complications of human relationships.

However, Gadget was not a pet. He was my service dog.

I strongly disliked having Gadget referred to as my pet when he was alive, and because my loss has been so public, I find that since his death, I’ve heard him referred to as my pet (or my “companion” or “friend,” which are often other terms people use for pets) much more than I did when he was alive. It can be a little hard to take, hearing it so often.

While the “heart loss” of an assistance dog may share similarities with the loss of a super-bonded pet relationship, the working-assistant partnership and functionality loss are very different. The grief of pet loss is very real, but  it’s a different kind of loss in several respects. I can’t speak for all assistance-dog partners, but those I have talked to about this issue feel as I do: We hate having our partners called pets, and we hate it when non-AD partners say they know just how we feel.

Q: Why? How is the loss of an assistance dog different?

A: I haven’t come up with a short, simple answer to that yet, but I’m hoping that the accumulated posts here, over time, will be an answer to that question. Gadget’s death is the worst loss I’ve lived through, and that includes the death of one my best friends a year ago and multiple other forms of major loss.

To put this into perspective: The first three years I was disabled by chronic illness, I almost never left the house, and I often went many weeks at a time without seeing another human being. I lost my job and career, friends, much of my financial security, freedom, independence, social life, and on and on. And I also just felt physically very lousy all the time. I had two cats at that time, and they were my one source of physical contact, daily interaction, and love. When each of them died, it was very, very hard. I used to say, and I still believe, they kept me sane those first few years.

Yet, Gadget’s death feels 50 times worse. Sometimes people react to my disabilities as tragedies. I don’t feel they are tragedies; I feel Gadget’s death was a tragedy. I have never dreaded anything so much as I dreaded him dying. I honestly don’t know if I’ll ever completely get over it.

Q: I was trying to be supportive. What should I say instead?

A: I know you were, and I appreciate your kind intention. While I know you are trying to empathize by saying you have gone through the same thing, many of us feel more alone when we hear such comments, because we feel the person trying to comfort us not only doesn’t understand what we’re going through, but by saying that they do, we are cut off from saying how we really feel. I know I usually say, “Thank you,” to conform to social niceties and to spare a well-intentioned person’s feelings; then I try to avoid the topic with them after that. That feels lonely, too.

I hope you will make use of this information the next time you come into contact with someone who has lost an assistance dog. As to what words to use instead, more appropriate terms would be “partner,” “assistance dog,” or “service dog,” “guide dog,” or “hearing dog.” If you don’t want to use these terms, you can just say the animal’s name: “I’m so sorry you lost [dog's name]. You must miss him/her terribly. Let me know what you need. I’m here for you.” That’s usually what I want to hear, and I find it hard to imagine another grieving AD partner would be put off by any of the above. In fact, I think those are good things to say regarding any kind of bereavement.

I also am fine with people — in comments here at After Gadget or in “real life” — telling me about their own feelings of sadness and loss when their dogs died, whether or not they were pets or ADs. It’s always okay to talk about your own feelings, your own experiences, and I can often tell from people’s tone how heartfelt their sympathies are. I have been moved by many of the comments here from those who have lost companion animals saying that my blog has touched them and reminded them of their own dogs. It is only when people start making comparisons, insisting that they know how I feel, or using “the p-word,” that I feel alienated.

(Other assistance dog partners: If you agree, disagree, have other ideas, etc., please comment!)

Q: Is it okay to post this link on my blog/website/Facebook/email to friends? I would have to list it under “pet loss resources” and you just said not to refer to him as a “pet”!

A: That’s okay. Really and truly. Please do spread the word. The more people who learn about and love Gadget, the better. I feel that Gadget’s death left a hole in the world, and I want more people to know how wonderful he was, and how much he is missed.

While AD partners often try to seek each other out for comfort and support when dealing with a loss, sometimes we don’t know others, or we are not that connected to the AD community, or we face communication or other access barriers. In fact, I turned to a variety of “pet loss” groups and hotlines. Some worked out better for me than others, but these things are very individual. A listserv of people who lost their dogs to cancer has been very important to me, and I’m the only AD partner in the group; however, I relate very strongly to most of what happens on the list and care deeply about the other people and dogs. Having a relationship with these people before our dogs died makes a big difference.

In fact, my impression is that most readers of After Gadget were not AD partners, but many have lost pet dogs; there is a lot about grief and loss that is universal, no matter the species or relationship. I am hoping that After Gadget will, in time, be just one of many easily accessed resources for grieving assistance dog partners — blogs, chats, lists, hotlines, etc. Meanwhile, we have to find each other somewhere, and pet loss resources are often where we try. I would appreciate it, though, if you indicated that Gadget was a service dog along with your link.

Comments and Questions Arising from Seeking and Raising My New Puppy, Barnum

Q: Do you have a replacement lined up?

A: In the AD community, we do not use the term “replacement.” Gadget could never be replaced. He was one-of-a-kind. It would be like saying, after your spouse died, “Are you going to marry a replacement?” We prefer the term “successor.”

Most also prefer the term “partner,” not “owner,” because an assistance-dog partnership is a team effort. Both members of the team take care of and support each other and work together toward their goals.

Likewise, a previous AD is “retired” or the “predecessor,” and contrary to popular belief, not all retired ADs are rehomed (or euthanized!). Some ADs stay with their former partner as back-up SDs, pets, therapy dogs, etc.

Q:

1. Who will raise your puppy for you?

A: 1. I will be raising the puppy.

2. Would you like me, a complete stranger, to do it?

2. No, I wouldn’t. Assuming I need someone else — someone nondisabled or less disabled than me — to raise my future SD is ableist, especially if you have learned anything about me and know that I have trained two previous SDs and also have helped other people (mostly nondisabled people!) train their dogs. Please read more on learning about ableism.

3. Would you like me to give you a random puppy, probably of a breed you are allergic to, from my neighbor who has done no health testing on the parents and has no experience in selecting dogs with the right temperament to do the type of assistance work you’re seeking?

3. No, I really, really wouldn’t. I spent years, literally, researching which breeder I wanted to get my puppy from this time around. There are not many Bouvier breeders in the US, yet I still had to do my homework. The breeder I chose knows the complete lineage of Barnum’s parents (which includes their personalities, health histories, and temperaments) and provides information on every health test she has run on them and their forebears. She is also one of a minuscule number of Bouvier breeders that have bred and selected service dogs.

Q: If you start with a puppy, won’t it take an awfully long time before the dog can assist you?

A: Yes, it will, and that will be the hardest part: expending so much energy while getting no help in return for a long while at the beginning. My original plan had been to do something similar to what I did when training Gadget: I adopted Gadget when Jersey was still working, and she helped me train him, and then she retired as my pet when Gadget was ready to take over working. For Gadget’s successor, I’d decided to get a puppy when Gadget was about seven or eight year’s old; that way I would have had Gadget’s assistance with training the puppy, as well as not having a gap with no canine assistant. However, two major things went wrong. One was that I became severely ill with Lyme and two other tick-borne diseases and had to focus on survival; therefore, I was in no shape to raise and train a puppy. Second, right around the time my health was improving, Gadget got cancer, so my focus had to be on his needs, above all else.

However, the waiting and trade-off was hard when I was training adult dogs, too. It seems to be par-for-the-course whenever one adjusts to a new assistance dog or when one is working toward finishing training. (I have heard from those with program dogs that even in that case, when starting a new partnership, it takes both team members time to acclimate to new routines, environments, and styles.)

However, this time, for the first time, I have several people, including my partner, who are helping me raise Barnum. Without them, I definitely could not handle a baby. In the past, I did all of the care and training myself (except for Gadget’s wonderful dog walkers, Deb and Cameron, whom he loved with all his heart, as do I).

And yes, I know I said above that the assumption that I couldn’t raise a puppy on my own was ableist, and now I’ve gone and verified that I couldn’t raise a puppy on my own, so let me elucidate: It is the assumption that is the problem. Types and severities of disability range greatly. I’m much more severely disabled now than I was a few years ago. Also, there is often an assumption (that word keeps cropping up!) that disabled people lead solitary lives, without friends, lovers, spouses, etc. Barnum is being actively raised by my partner, me, and my four PCAs — under my instruction — with additional support that I have rallied from my small, rural community.

I know several people with disabilities who raised their ADs from puppyhood who considered it a delight and wouldn’t have had it any other way. I know others who absolutely feel their lifestyle could not accommodate a puppy and have adopted adolescent or adult dogs or who have obtained program dogs. There are also people who did raise a puppy into an AD but who have decided that next time around they will take a different route. You might notice that the same can be said for nondisabled people: some prefer pups, some older dogs, etc. In fact, if you learn nothing else from this post, I hope this one fact will come shining through: all people with disabilities are unique, just like all nondisabled people are unique! In this way, we are all exactly the same! (Ooh, a paradox.)

Q: Oh my goodness! How will you manage without a service dog until the puppy is full-grown and trained? Can’t I help you get a trained service dog right now? I barely know you, but I am so worried about you!

A: I very much appreciate that you understand that service dogs are not pets, and that my independence, safety, freedom, and quality of life are inextricably connected to my partnerships with my service dog. When people “get” that this loss is not the loss of a pet, that can feel very supportive.

However, treating my disability as a catastrophe and my life as a tragedy does not feel supportive. It suggests that you think I have had service dogs from the moment I became disabled, for example, which isn’t true for me or any assistance dog partner I know. It also indicates an assumption that I lack the resources to survive without a service dog, which is also not true of me or any other AD partner I know. (Hopefully you’ve already figured out that this type of response is yet another form of ableism.)

Those who choose to partner with ADs may experience better, richer, more independent, or safer lives with our canine assistants, but that doesn’t mean we will keel over and die without them. Often, to explain the role of our dogs, AD partners liken an AD to a piece of assistive equipment, such as a wheelchair, a cane, or an environmental control unit: we can survive without them, but life is much better with them. In fact, when an AD dies or retires, many of us turn to the assistive technologies we used to use before we were working with an AD. (I’ve discussed this in some of my previous posts, especially this one about the doorbell.) We might experience these technologies as inferior to a partnership with a versatile, thinking teammate, but they are extremely valuable.

Two other ways of coping with functional issues after the loss of an AD are increased human assistance, and — for lack of a better term — “making do.” I do need human assistants to get along, but my life is best with both a canine assistant and human assistants. For others I know, having an assistance dog allows them to live without PCAs or other human assistants (such as sighted guides). If they lose their AD, they may turn to human assistants until they have a reliable AD again. In my case, having more personal assistance for myself than I had when training my previous dogs will make me better able to raise Barnum. I’ve also enlisted the help of members of my household to pitch in with things like taking Barnum out to pee or playing with him, when I’m too tired or in too much pain. Betsy took him to puppy kindergarten because the class was not MCS-accessible. Having more people involved helps take the pressure off the pup and me, allowing us all to enjoy his puppyhood and training more fully.

Q: But why buy from a breeder? Why not adopt a rescue? Don’t you feel guilty that you’re contributing to dog overpopulation? Don’t assistance-dog programs contribute to the overpopulation and death of dogs?

A: This is a complicated situation, and I have wrestled with guilt over the decision to buy from a breeder. My previous dogs have all been older — two rescues and one “rehome.” However, my reasons for wanting a puppy this time around are solid, relating to my own health needs, my service dog goals, and what I think will be best for the dog. It’s just not the right time for me to have a rescue. I considered it, and I decided it wouldn’t be fair to the dog nor to me and my household. I’m hoping that eventually I’ll be doing well enough to foster and help train rescue dogs for others.

Another major issue in terms of adopting rescues is that I am allergic to most dogs, so I can’t adopt or foster a mixed breed (which eliminates 75 percent of shelter dogs) or any breed that is not hypoallergenic. This doesn’t mean it’s impossible for me to adopt a rescue — I’ve done it before, through Bouvier rescue — but it makes it more complicated.

If I didn’t have allergies, I would likely have adopted a mixed breed from the shelter for my first service dog, as they tend to be genetically hardier and healthier (because there is less inbreeding than with purebred dogs), and are usually very smart, to boot. But it’s very rare to find a hypoallergenic mixed breed. Plus, now I’m an incurable Bouvier fancier.

As to the issue of breeding programs at assistance-dog schools, this is complex. For one thing, many programs do adopt and train dogs from shelters, rescue, or donated from breeders. For another, the life of an assistance dog is not for everyone. If a program has a high success rate of graduating dogs with the physical, mental, and emotional traits that make assistance work rewarding, safe, and successful for them, and if they are humane and responsible in their breeding, training, and placement, that is probably the best way to go for them.

In my opinion, the crime of dog overpopulation (and thus, death) is caused primarily by puppy mills, which are too horrible for me to discuss here, and secondarily by people who breed their pet dogs without awareness of the larger consequences.

Q: Why don’t you get a service dog who is already trained? Wouldn’t it be easier?

A: Yes and no. It’s complicated. I’ve posted the long version of the story in my “About Sharon’s Dogs” page. For this BADD post, however, I do want to briefly make three points that do relate to ableism (and which I discuss more fully and less pedantically on the other page):

1. I tried to get a service dog through a program, and I couldn’t. This was for two reasons. The first is that no program could or would train a dog to fit my disability needs, because my disabilities were not “mainstream” enough. Fortunately, the AD world has changed a lot since 1998, and many more types of disabilities are now seen as appropriate for service dog work. The second is that no program would accommodate my disability needs, which is extremely problematic for organizations that are designed to meet the needs of PWDs! This is changing, too, though not as much as I’d like.

2. I discovered, in the process of searching for and applying for programs, that there was an air of paternalism among many programs that really turned me off. A big component of the disability rights movement is self-empowerment — that we (PWDs) know our lives, bodies, and needs best. Sometimes this means that the people who are in the “helping professions” (doctors, social workers, those who work for public or private charities or benefits programs, etc.), treat us with less respect, understanding, or autonomy than we think is appropriate or healthy. While many assistance-dog programs work terrifically well for many people, a lot depends on the organization, the PWD, and the fit between them. I did not find a good fit in this regard; however, as I mentioned above, a lot has changed. Many new AD programs have sprung up that have a more “client-driven” focus, including programs run by PWDs or that teach PWDs to train their own ADs. I also think some of the “old guard” has changed somewhat to keep up with the times.

3. Once I discovered that I was good at and enjoyed assistance-dog training, I got hooked. There are challenges, but for me, the benefits of partner-training outweigh the costs. If someone tried to train my dog for me, I would feel robbed of an essential part of our partnership and of my life experience, as well as of the flexibility I enjoy to train or retrain to fit exactly according to my (often changing) disability needs and my lifestyle.

Q: You mentioned a struggle you’re having with raising your puppy. The problem is that you’re doing [fill in the blank], while you really should [fill in the blank thing that is either inappropriate or impossible for you to do].

A.

1. [Silence.]

2. Everyone loves to give advice about raising puppies, training dogs, raising children, etc., to people who are newly in the thick of it, disability or not. I have been guilty of this, myself. Unfortunately, usually unsolicited advice is obnoxious (again, disability or no).

However, there are some broader issues to keep in mind. One is that PWDs have historically received — and continue to, as much or more than ever — unsolicited advice from nondisabled people about our disabilities. The underlying assumption is that since we’re disabled, and they’re not, we must be doing something wrong, so nondisabled folks, who must be doing something right, can fill us in.

This urge is so widespread and obnoxious that when I was cartooning about life with disability, my most popular cartoon, bar none, was one that was a “fill-in-the-blank” card to people offering “helpful suggestions” about how we could cure ourselves. PWDs from all over the world and with every type of disability related to that cartoon. Before you give any advice to a PWD on any topic, think long and hard about whether this is something we might already have more information and perspective on than you do because we live with the disability, ourselves. Also, think about whether they have indicated in any way that they want your advice.

I’ve received many suggestions and pieces of advice since I got Barnum, and a few of them were useful (such as book recommendations), and many were not. The ones that stuck in my craw tended to be from people without disabilities or with different disabilities than me who were judgmental or ignorant around my disabilities.

For example, I was very stressed about how to get Barnum from his crate and out the door in the first few weeks of toilet training without either (a) allowing him time to have an accident or (b) running him over in my powerchair. I had tremendous anxiety about hurting a puppy with my powerchair. I literally had nightmares about it before he arrived. I was so afraid I would accidentally murder him in a horrific way by running him over in my chair that it was a factor in my decision as to whether to get a puppy or not.

My friends reassured me that I would not accidentally kill the puppy. Then Barnum arrived, and it turned out to be quite tricky. The easiest way, for others in the household, was to pick him up and jog to the door and deposit him outside. This did not work easily for me.

For one thing, for the first two weeks, he reeked so bad of the fragranced shampoo the breeder had washed him with (despite our washing him, ourselves, several times), that I couldn’t touch him or pick him up without having a reaction. If I held him, any clothes that touched him had to go into the wash. This added an additional layer of work and exhaustion — not to mention misery at not being able to touch and bond with my puppy without becoming ill — to an already difficult situation. Since I had to take him out every hour, I couldn’t pick him up and then change my clothes every hour!

There were also the issues of fatigue, balance, dizziness, weakness, etc., that affected being able to pick him up and whisk him to the door in my lap. Hefting ten pounds (and growing every day!) of wriggling puppy was not nothing for me. There’s also the fact that opening and shutting of doors can be tricky from a chair, and with a squirming puppy whose bladder can only last 30 seconds or less, the situation isn’t any easier.

It seemed to me that the best solution was to get a leash on him and then have him run behind me out the door. That way, I would know where he was (because of where the leash was), and I wouldn’t have to deal with the lap-related issues. Despite my extreme watchfulness, however, I did twice run over his paw, which was a terrifying experience for both of us, but which caused neither of us any lasting harm.

However, when I sought advice on handling the leash situation with a puppy who was still not used to wearing a collar, several people told me that I should just carry him! What the heck was wrong with me that I was trying to get a puppy to heel on command at nine weeks? (Of course, I didn’t care about heeling; I cared about not squishing him.) Someone even told me that I should not move my chair, ever, at any time, without first always making sure that he was nowhere near me. Well then, how should I get him to the door? Telekinesis?

Several people were quite blaming that I had run over his paw at all. Honestly, I don’t know any wheelchair user who has never run over their dog’s paw! I have run over several people’s feet, including my own! Certainly there must exist many wheelchair users who are much more graceful than I, who have better coordination, better memory and spatial abilities, more accessible homes, and no balance issues. Not all of us are born athletes! In fact, Betsy accidentally stepped on Barnum’s paw on a walk and felt just as horrible as I had when I’d run over his paw. Then I found in one of my puppy books, under life stages, “Learns to avoid being stepped on”! That made us both feel better.

So, this is my final point: All the people who gave me a hard time and/or told me how I should have handled getting Barnum from the crate to the door knew that I have a disability and that I’m a wheelchair user. Some did not know about the MCS, and at any rate, in my experience, only people in the severe MCS community actually understand severe MCS, no matter how much others may think they do. Still, is it really such a stretch to imagine that someone who uses a powerchair to get around in her house might have disabilities that would make it challenging or impossible to lean over, pickup a wriggling, increasingly heavy puppy, carry it through at least two doorways and to the outdoors, in winter, all in under thirty seconds? Might it have occurred to the people to whom I said, “I need to have him on a leash so I know where he is so I don’t run over him,” that I had good reasons for choosing that method? Did they think that having a disability made me unaware that I also am the proud owner of a lap?

Of course not. I’m sure they didn’t think of these issues at all. That’s the point: assumptions, again. Assumptions about what a PWD can or can’t do, and assumptions that the way a PWD chooses are not based in rational awareness of her own body and/or abilities and/or limitations. I have to say that, unlike most assistance-dog partners I know, I have very rarely been denied access to public facilities. Having an assistance dog has not kept me from passing through most doors. Yet, I still find that I frequently must ask people, when it comes to me and my service dogs, to check your assumptions at the door.

P.S. It’s a year later, and I read this terrific post, Service Dog Etiquette for Dog Lovers, at The Manor of Mixed Blessings, and I thought it was terrific. Please read it; if you are not an assistance-dog partner, I guarantee you will learn something. She also wrote this follow-up piece for people who were bothered by her shoe analogy, which I actually loved and commented upon.

Interlude: My One Hour a Week

Once a week, for an hour, I can breathe. I am by myself, and I can do whatever I want. Wednesdays from 6:00 to 7:00, Betsy takes Barnum to puppy kindergarten.

I have started several blogs in the last three weeks during this one-hour window, but I’m never able to finish them. I’ve been falling back on my usual mode for coping (and thus, writing) in recent blogs — humor. Mostly sarcasm, irony, self-deprecation.

Now, my attempt at my fastest blog ever! How is it actually going? My scattered thoughts. . . .

I do love Barnum. I love him very much. I can’t imagine a world without him. Especially when he’s sleepy and cuddly, and I look into his eyes, I love him in a way I’ve never loved anyone, because he’s a baby, my baby.

Or sometimes, especially lately, when we’re training, and he — out of the blue — “gets it” about what we’re doing and gets excited and does The Thing I Want Him to Do. That’s the high of training your own SD — that’s the drug of clicker training. Right now, it’s only just beginning, and only occasional. But there are moments: I hung bells on the door so he can learn to jingle them to tell me he needs to go out. He’s now quite good at hand targeting, so we’ve done two or three sessions of him targeting my hand as I moved it closer and closer to he bells, and twice he suddenly grabbed the bells! Jackpot! Even better than that was after we finished a session, and I took him out, he came back in and grabbed the bells all of his own accord! We were delighted with ourselves. I took him back out, even though I knew he didn’t have to pee.

He stresses the heck out of me. I often ask my PCAs when they arrive, “Would you like a puppy? He’s really cute. And free.”

I barely get any sleep. My sleep schedule is all messed up because when he has to go out, he has to go out. I try to sleep when he does, nap when he does, but there’s the rest of my life I usually need to squeeze into those little windows.

Barnum is teething. This means he is chewing on everything all the time even more than he used to, which I didn’t think was possible. On the other hand, he is finally getting more gentle with mouthing, which is trainer language for “biting everyone whose flesh, clothing, and hair he can reach.” Sometimes it really hurts. Sometimes it upsets people, and I feel bad for inviting them (or requiring them) to visit or work in an environment where little needle-like teeth might come at them before I can intervene.

He started out a bit fearful, then became very confident, and now seems to be going through a timid phase again. I am trying not to stress about it. However, the uber-socialization we did with people has paid off: even when he’s afraid of everything else new around him, he wants to follow any people he sees, because he is convinced they will love him up and shower him with treats.

Most of the time I’m too busy and exhausted to consciously miss Gadget, but during the rare moments I let myself open — when all the Managing, Coping, Handling, etc., is not needed, and when I am not working to prove how Together and Witty I am — I just cry. I cry and cry and say, “I miss Gadget. I want him back. I want him back.”

Gadget’s grave is kind of a mess. We put stones on it to mark it, but they got moved, and the dirt got rearranged by a snow plow in winter. I know some of the people who loved Gadget are distressed that I haven’t done anything to fix it. To repack the dirt, move the stones, plant flowers. My very kind neighbor, who is a hospice worker, actually brought daffodil bulbs when Gadget died, and we planned to plant them on his grave, but I can’t deal with it. I can’t look at it when I go out. It’s still just easier to think that he’s “gone,” than that his body is decomposing in my yard.

I finally responded to an email from a reader of this blog who lost her service-dog-in-training. Just reading about her feelings and telling her how normal it all is made me cry. It’s impossible not to identify and put myself in her place and feel her pain.

I’m a coward. Someone I met online whose dog also had cancer lost the battle recently. Over many months, I felt like I really got to know her and her dog, and I haven’t been emailing her because I feel so awful about it, I don’t know what to say. He just seemed like a truly wonderful dog. I hated it when people went on and on to me about how horrible Gadget’s death was and catastrophized it, as if I truly could not live without him, and I don’t want to do that to anyone else. In her case, this was not her service dog, so she won’t get that kind of treatment from others. But still. How can I be writing a blog about service dog grief and not know what to say?

I also haven’t gone back to my angels list because not only am I too exhausted and busy to deal with email, I’m afraid my stress and grouchiness and all-consuming attention on Barnum is not appropriate to the group, but neither would be my gushing and happiness over him. And it’s so painful, as more people join, to know more people have lost their heart dogs, that it throws me back into my feelings about Gadget, and I can’t afford to use that energy.

Twice a week, Betsy takes Barnum for the night so I can catch up on sleep. I generally sleep twelve hours on those nights. I think it’s hard for people to understand just how much Barnum consumes my life, not just because he is a puppy, and all puppies are a lot of work. It’s because . . .

- He is an extra high-energy, drivey puppy. He was the most active in his litter — of a working breed.

- He is only moderately food motivated. He is much more interested in being with me without food than being in his crate with a marrow bone or a Kong. Honestly, I didn’t know such dogs existed before!

- I am laying the groundwork for him to be my service dog. That means major socialization to everything and everyone in the world, tons of training, and carefully avoiding not discouraging him from doing things that might later be useful, but that are usually trained out of puppies. (Grabbing clothes is an example. One day I will want him to pull on my sleeves, so I don’t want to scold him for that now. Likewise with sniffing things, as he will be doing scent work.)

- I live with multiple illnesses and disabilities, which means that things like getting my teeth brushed, going to the bathroom, eating and getting meals, all take planning and assistance from other people. It also means that a good portion of my days are spent with “maintenance” that healthy people don’t have to deal with. This includes doing infusions of IV medication twice a day, taking huge quantities of oral supplements and drugs many times a day, getting intramuscular shots, etc., etc.

When you combine these things, it’s complicated. For example, puppies love to play with strings, cords, ropes, dangling things. Guess what that describes? The tubing on my oxygen tank. The cord on my infusion pump. The line from my PICC line in my arm to my pump. Who wants to explain to the ER doc that a puppy chewed into the tubing that leads into the line into my heart? Not me!

This means that when I do my infusions either someone else needs to be with him, OR he needs to be asleep, OR he needs to be in his crate. It’s not always so easy to synch up his sleeping schedules with my medication schedules and my PCAs’ working schedules!

Okay, I had to interrupt this a couple paragraphs above because Betsy got home, and I had to get Barnum into the crate in the living room with enough Really Really Tasty chew toys to keep him occupied until Betsy gets back from her errand so I can don mask, gloves, air filter, and oxygen, and change clothes, so we can bathe Barnum, because he smells from chemical fumes he picked up at class. Then I’ll have to wipe myself down. All of which will be exhausting and cause me to have more pain and exhaustion tomorrow. See how my mood has already gotten worse?

On the other hand, he is absolutely adorable, AND he rang the bell after just two practice clicks with me. I just need a break. I just need time to mourn, which maybe I will get the next time Barnum is asleep, if I’m not also trying to sleep at that time.

Thanks so much for your comments. Keep them coming.

-Sharon and the muse of Gadget

P.S. I wanted to post some adorable photos of Barnum, but I don’t have the time to upload and caption them, so that will have to wait.


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