Posts Tagged 'disability'

Signal Boost: Telephone Support Group for People with Disabilities

I posted about this group once before. Apparently that garnered some interest, and the group proceeded. Now they are opening the group to more people again. Please share with anyone you think might be interested.

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

Join a support group by telephone

from anywhere in the country (or the world)!

Connect with others dealing with concerns similar to your own.

Boston Self Help Center, a small nonprofit run by and for people with disabilities and chronic illnesses, is offering a peer-counseling support group that is being held by telephone. The support group, which is made up of people with a range of disabilities and illnesses, has been meeting for several months and is now looking to add two or three new members.

Boston Self Help Center has been providing peer-counseling support groups in a cross-disability setting for over 30 Years. We charge on a sliding fee scale; you pay only what you can afford. Your fees help make possible the continuation of our support-group program.

If you are interested in learning more about the group, please leave a message for Linda or Cindy on Boston Self Help Center’s message line: (617) 277-0080 (voice/TTY).

Signal Boost: Phone Support Group for PWDs

This is a signal boost for a support group, held by phone, for people with disabilities or chronic illness. I know both facilitators, and they are warm, caring, experienced counselors. Please cross-post, forward, etc. Thanks!

- Sharon and Barnum, panting-hot-SDiT

Join a support group by telephone from anywhere in the world*!

Connect with others dealing with concerns similar to your own.

Boston Self Help Center is offering a peer-counseling support group for people with a disability or chronic illness that is being held by telephone.  The support group, which has been running since February, is now looking to add two or three new members.

Boston Self Help Center has been providing peer-counseling support groups in a cross-disability setting for over 30 Years. We charge on a sliding fee scale; you pay only what you can afford. Your fees help make possible the continuation of our support-group program.

If you’re interested in learning more about the group, please leave a message for Linda or Cindy on Boston Self Help Center’s message line: (617) 277-0080.

*While the conference call is free, group members are responsible for paying their long-distance phone charges. Since most group members are in the US, if you are outside the US, you might need to be flexible about time of day.

Love for My Service Dogs

The Patients for a Moment (PFAM) carnival is up right now at Chronic Babe. The theme, appropriate for Valentine’s Day, is Show Me the Love.

If you follow After Gadget, you know I deeply loved my last service dog, Gadget, and all the aspects of our relationship that made him so special and important to me. However, I have never written specifically about what was unique and lovable about each of my service dogs (SDs).

It may seem stunningly obvious that most service dog partners are passionate about their SDs. For not only do they provide us with the companionship, comfort, and fun that pet dog owners experience, they also contribute to our freedom, independence, and safety. Still, not all SDs are created equal, and not all partnerships click as well as others. Every dog, like every human, is an individual.

I think most SD partners probably try to keep it to ourselves, out of a sense of guilt, loyalty, or a fear of being judged and misunderstood, but in my experience, we don’t usually love all our SDs in quite the same way; each dog has their strengths and weaknesses, in harness and out. Many might say, “I love all my dogs equally, if differently,” which I’m sure is true. It feels true for some of my dogs, but not others. Quite simply, there are some I’ve loved more (or the most).

It’s not that they haven’t each been equally deserving, but that we all have our quirks, and what makes us happiest is so subjective. There is the heart, and there is the mind, and no matter how much the mind may argue, the heart knows what it knows.

If you’ve seen my new About Sharon’s Dogs page, you know my history with each dog. That page is filled with a lot of facts about my first pet dog, my two service dogs, and my current service-dog-in-training, Barnum.

For this post, I’ve decided just to focus on Jersey and Gadget — my service dogs whom I have loved and lost.

Barnum is not yet my service dog, although I feel confident that he will be, eventually. I love him so much, I can’t imagine life without him, but I also know we have so far to go. Knowing that, having been on similar journeys in the past, I cannot predict in what ways our love will grow and transform. I only know that it will.

Barnum and I are a work in progress. The curtain has already come down on Jersey’s and Gadget’s stories, yet there’s always more to tell.

Act I: Jersey

Scene I: Arrival

Jersey was my first service dog, my first dog that I owned and trained as an adult, and my first bouvier des Flandres. As such, she will always be special.

Part of our love was forged by how hard it was for me to acquire her — how I had to convince the people involved in bouvier rescue that, despite my disabilities, I could handle the responsibility of a bouvier (or any dog). To say that she was therefore a sort of trophy does neither of us justice; it dehumanizes her, and it diminishes the very real relationship we had.

Nonetheless, the fact that we did so well together, that I did train her as a service dog, despite all the dire warnings I encountered and discouragement I received before I got her, was a vindication. Because this was my first time training a dog in a serious way, each little achievement was a joy. Therefore, a lot of my love for Jersey stemmed from my pride in both of us.

Scene II: Sit

I remember when Jersey “got” sit. We had been practicing sit, for a couple of weeks, a few training sessions a day, when one day, out of the blue, Jersey ran up to me and . . . sat! If she had been a human child, as her butt hit the floor, she would have thrown back her head and flung wide her arms, shouting, “Tada!”

I thought it was funny that she was offering the behavior before the command. This was before I started clicker training, and although I used food rewards, I was used to pairing the cue with the behavior as I taught it. I didn’t know yet that dogs learn behaviors first, and that attaching the cue comes later. I thought Jersey was a little silly for offering a sit without being prompted.

Nevertheless, I was thrilled. Fortunately, I knew enough to reward her for the sit, and to keep rewarding her for “throwing sits at me,” until I started discriminating and only rewarding those that were paired with, or preceded by, the cue for sit.

Jersey sitting outside, after finishing a walk

Jersey sits in the snow after a walk.

[Photo description: Jersey sits outside, her paws wet from a walk in the snow.]

This was the beginning of our working relationship, and the joy we both had in training — and succeeding — was a very strong bond.

Scene III: Nibbles

Bouviers are typically extremely devoted to their own and rather standoffish with strangers. However, even with their people, they are not terribly demonstrative. Typical bouviers are Velcro dogs who want to be with their person, no matter where their person is, following them around the house, just keeping an eye on them or being near them, but not needing a lot of physical affection, and even less often, soliciting it.

This description fit Jersey to a T. She was certainly friendly to everyone, dog or human, in a gentle, quiet way, but she didn’t really care about anyone but me and a few select people, such as her dog walkers. She was truly a “one-woman dog.” She followed me everywhere in our small apartment, and although she rarely sought out affection — she preferred to have her subjects come to her — when I did scratch behind her ears or under her chin, she would close her eyes and “purr.” Sort of a quiet moan of happiness.

The only time she showed outright affection was in the morning. Upon waking, I’d often find Jersey sticking her nose in my face to sniff me while I lay in bed, then “nibbling” my arm. Her other favorite nibbling location was the bathroom, when I first got up to pee in the morning.

Fortunately, I had read about nibbling on a bouvier list before Jersey did this the first time, or I might have thought she was trying to hurt me. It’s a show of affection where the dog, with their mouth almost closed, chatters their teeth against your skin, as if flea-biting.

Nibbling is quite a lovely behavior if you’ve got clothing or a blanket between the dog’s teeth and your skin. However, if she nibbled my arm in the summer, when I was in short sleeves, my skin got pinched between her front teeth, and it hurt! I tried not to exclaim with pain or surprise, because I could tell it startled her and hurt her feelings.

However, on one memorable occasion, the morning before I was to have a first date with someone I met through a personal’s ad, I was giving Jersey a hug as I sat on the toilet. Wagging her little stump of a tail, Jersey reached up and nibbled my neck — leaving a mark! I had told my date that I wasn’t seeing anyone else. What would she think if I showed up with a hickey? Somehow, saying, “It’s not what you think. My dog gave me this,” sounded worse! I wore a turtleneck.

Scene IV: The Stare

Jersey was a prototypical bouv in some ways, but in other ways, she completely defied the breed standard. For example, bouviers are supposed to be “fearless,” and were bred partly as guard dogs. Jersey didn’t have a protective bone in her body. She didn’t bark. She didn’t growl. If anything startled her — such as my falling down — her motto was, “Run away first. Investigate later.”

She was truly “the silent partner” in our relationship. That didn’t mean she didn’t know how to communicate with me.

Jersey eyes Sharon

Jersey keeps close to Sharon and keeps her eye on her

[Photo description: Jersey sits in profile, her head turned toward Sharon. Jerseys fall covers where her right eye would be.]

Jersey used “The Stare.” If she needed to go out, she stood near the door and stared at me. If it was time to eat (which was any time between when I woke up and she ate breakfast, and then again, any time after 3:00 PM or dusk, whichever came first), she sat and stared at me.

If I had friends visiting, and one of them moved between Jersey and me, Jersey got up and repositioned herself to make sure her Stare Beam was unimpeded.

Her stare was very intense and completely focused. She knew that if she just stared long enough, eventually I would feed her. Of course, I always did.

Having one eye — even when vision in that one was clouded by cataracts — did not make one bit of difference. If anything, it seemed as if Jersey’s stare was all the more concentrated, coming from that single orb.

Jersey peers over the futon

Jersey directs her stare beam at me.

[Photo description: Jersey peers over a green futon, her chin resting on it, one eye peeking out, her two black pointed ears in stark relief before the maroon wall.]

When I think back on my relationship with Jersey, my love for her is mostly that of gratitude for her forgiveness in all I didn’t know, her absolute devotion to me, and the smile that still comes to my lips when I see that one brown eye, staring at me.

Scene V: In My Dreams

After Jersey and I had been partners for a while — I don’t remember how long it took — I realized that she accompanied me not only in all my waking activities, but in my dreams, too.

When I try to explain what it’s like to be a service dog team, this is sometimes how I explain it. That the dog is truly an extension of me. This goes so deep that my subconscious knows it, too.

This is a kind of love that’s hard to convey, that of being two parts of one whole, physically and mentally.

Act II: Gadget

Scene I: Love at First Sight

I recently wrote at About Sharon’s Dogs how I fell in love with Gadget pretty much instantly.

Black and white of Sharon and Gadget looking into each other's eyes

Love at first sight.

[Photo description: Black and white photograph of Sharon and Gadget, ten years ago. Sharon sits on a wooden bench of a back patio, smiling down at Gadget, who stands looking up into her face. The sun highlights Sharon's long, dark hair and Gadget's curly, gray brindle coat. There are trees and shrubs in the background, beyond the wood railings.]

While Jersey was beautiful — she had, after all, been a show dog — Gadget was just too cute.

Despite the uneven color of his coat, due to digestive and allergy issues that had caused rusty-brown patches where he’d been licking and biting himself most of his life, and his chopped-off beard (which had been a straggly mess, apparently), Gadget was absolutely adorable.

He had that bright, inquisitive spark that animated every aspect of his facial expression: his brown eyes, his twitching nose, his ever-adjusting eyebrows, his long, expressive ears. His ears were soft and silky, and when he ran — which he did at any and every opportunity — they flew up and down, making him seem just that much more alive.

Black and white photo of a young Gadget, staring into the distance

A young Gadget stares into the distance from my porch.

[Photo description: Black and white photo of Gadget from the neck up. His ears perked, he looks alertly into the distance, birch trees blurred in the background.]

Jersey’s ears had been cropped, which always seemed cruel to me, not only for the pain she endured as a puppy for this pointless fashion statement, but also because every summer, the deer flies headed right into her exposed inner ears. Mostly, though, I just loved the feel of Gadget’s ears, how much he could communicate with them, and how much he enjoyed having them rubbed.

Gadget was very photogenic, and it was my good fortune that soon after I adopted him, I dated a photographer. I sent some photos of Gadget to a friend who lived across the country.

My friend’s emailed comment, upon receiving the pictures? “How can you get anything done with that face around the house?” (She’s so much more tactful than I am. When she emailed me a photo of her newborn baby boy, I said, “He looks like a baby!”)

Scene II: Energy

Yes, he was very cute. But even more than his appearance, it was Gadget’s energy that thrilled me.

For one thing, he had so much of it! One of the traits that made Jersey “easy” in so many ways was how gentle and laid-back she was. Gadget, super enthusiastic and uncontrolled, was therefore much more difficult — and much more fun!

Gadget jumping over a pole across two kitchen chairs

All four off the floor! Indoor agility, anyone?

[Photo description: Gadget in mid-air jumping over a thin, yellow plastic stick about three feet above the ground, held up by a kitchen chair and a step-ladder. In the background are a kitchen counter and a refrigerator.]

I’d say I’m falling into sexist stereotyping in feeling that Jersey’s sweetness and manners were not as captivating as Gadget’s bad-boy charm, except that my first dog, Lady — as her total misnomer of a name makes clear — was female and also full of smarts and energy (and an aggressive attitude toward other dogs).

Gadget’s characteristics were due to his personality, not his body parts. Everything he did, he did with gusto: Training, thinking, eating, running. He was so hungry for life.

He wore me out, but I often laughed through my tears. I took him for walks that exhausted me, but they weren’t nearly enough for him. We went to my mailbox, three-quarters of a mile away, with me going at my scooter’s top speed (about seven or eight miles an hour) the whole time. Gadget ran back and forth all the way, so he really got more like three miles in than one-and-a-half. Yet, when we got home, and I was ready to hit the sofa and collapse, Gadget ran laps around the outside of the house!

Scene III: His Mind

Gadget was fleet of foot, yes, and he showed such joy in running I liked to say he must have been a greyhound or a thoroughbred horse in a former life.

Gadget runs with grocery bag from van/end of ramp

One of Gadgets favorite skills, carrying groceries to the house

[Photo description: Gadget runs down a black metal wheelchair ramp, his ears flying, with a white cloth grocery bag in his mouth. Sharon is behind him, at the end of the ramp, with her big green cargo van behind her. It's a bright, summer day, with lots of sun and a green lawn on either side of the ramp.]

His mind was just as quick. Training with him was thrilling. He took to it so easily, and our communication was so effortless, that it is only now — when I have worked my butt off for a year to completely relearn how to clicker train — that I realize how intuitive and brilliant Gadget really was.

There are two myths about service dogs that cause a lot of anxiety, misunderstanding, and broken hearts: 1. That any dog can be a service dog, and 2. That only one-in-a-million can be a service dog. I’ll leave discussion of these myths for a future post, but I can understand why a dog like Gadget could make people believe that any dog can be a service dog.

Clicker training is a step-by-step process. To have a fruitful session, I, as the trainer, have to know ahead of time what my goals are for the session — what criteria I am looking for and reinforcing, and if those criterion are met, what the next step — the next set of criteria — will be.

Gadget on ramp with bag in his mouth, lowering it onto ramp

Gadget prepares to drop the bag in the right spot.

[Photo description: Gadget holds a white cloth grocery bag in his mouth, which he is lowering, ready to drop it on the ramp on which he stands. The presence of the railings on the ramp show he is near the house now. Sharon is on the ramp about four yards back.]

Training Jersey had accustomed me to following this slow, orderly process. Gadget, however, quickly taught me that it wasn’t enough to know what my criteria were for the first step or two of the behavior before a session. I had better know how the entire skill would be built, from steps A through Z, because frequently, after one or two reinforcements for the first step, he would move right to the next step, and then often skip several steps altogether, seeming to intuit, on his own, what the entire purpose of the session was.

I frequently started sessions with the idea that I was introducing the foundation behaviors for what would eventually be a highly desirable service task, and within a few minutes, he would already be performing the finished skill, with nothing left to do but put a name on it (so I could cue the skill in future), and generalize it to other locations or objects.

Because we were training service skills, these sessions were immensely gratifying in several ways. One was that I knew he would be making my life easier with these tasks very soon; this offered tremendous relief and hope. Another was that it made us both feel so good about ourselves and each other; I thought I was a great trainer and he was a great learner, and he loved to problem-solve and earn treats and have my undivided attention.

It also forged a connection that would be critical to us for the rest of his life: communication.

Scene IV: Communication

The adage about communication is that it’s a two-way street, but this metaphor is too simple for the kind of communication that took place between Gadget and I. A lot of people think that communication between dog and handler is about commands, but that’s such a small part of it. And when the handler is also the trainer, the communication goes even deeper.

It started with training and living together, with all that we learned about each other and how to ask and answer each other:

  • “What next?”
  • “Is this what you wanted?”
  • “I’m waiting for you to do this thing before I do that thing.”

Then, in our working partnership, communication involved all of the above, plus how to move together in a huge variety of spaces (familiar and new) and with a great variety of assistive equipment. Not least of this was how much my functioning in a range of areas (voices, legs, arms, stability, coordination) changed drastically, and fluctuated even within new “levels.”

We were so able to predict each other’s intent that I really took it for granted. I remember, after Gadget died, emailing with someone whose heart dog had also died of cancer. They were not a service dog team, but they were a working dog team — her corgi herded sheep. She was the first to point out to me how obvious it was from the videos of Gadget and me working together that we had had a long, deeply connected partnership: how we moved together, how we communicated, “the dance.”

Gadget Watches Sharon Read Poetry to Elementary School Kids

Gadget even paid attention to me when surrounded by a group of rowdy small children. (He seems to be paying closer attention to my poetry than they were...).

[Photo description: Sharon in an elementary school library, a folder of papers in her hand, wearing an oxygen cannula, leaning forward with her mouth open, as if reading or talking. Gadget lies on the ground next to her in a green pack, looking up at her. In the foreground are several first-graders, looking in many different directions, some of them obviously moving around.]

Scene V: Part of My Body, Part of My Dreams

The caretaking Gadget did for me when I got Lyme disease rose to a new level. When Gadget got sick, our bond became that much stronger. The caretaking I did for him when he got lymphoma rose to a new level, too.

We spent every waking moment together, and a lot of the non-waking ones, too. After he died, I continued to dream about him.

We fell asleep together

We fell asleep together.

[Photo description: Sharon lies sprawled, asleep on her bed, turquoise T-shirt and pink pajama pants. Her head lolls to the side off her pillow. Between her legs, with his head resting on her abdomen, lies Gadget, also asleep. One foreleg stretches across Sharon's knee, the other is bent against her thigh. They lie on a bright red comforter, with a large beige cushion propping Sharon's upper body against the wall. An overbed table on the left side of the frame shows paper, pens, water bottles, and a jumble of other indistinct items, making it clear Sharon spends her days and nights in that spot. Sharon and Gadget both look completely relaxed and unaware that they are having their picture taken.]

I still can’t believe he’s gone.

Just like Jersey, when Gadget and I were working together full-time as a service dog team, he entered my dreams. Wherever I was, and whatever I was doing, in my dreams, Gadget was there, too. There was never an “I,” there was only a “we.”

After he died, I talked about feeling like I’d suffered an amputation, and having a sort of psychic phantom-limb pain. It’s not as metaphorical as it sounds. Just as one might reach out a hand to open a door and realize the hand is no longer there, I often turned to Gadget to open the door, to carry a message, to pick up something I dropped, and then realized he wasn’t there. The action was as instinctive as lifting my own hand would have been. It was a shock, over and over, that simple things were now so much more complicated.

At a pet loss bereavement chat online, a met a woman who lost her pet dog to cancer around the same time as I lost Gadget. She knew she would never get another dog. She told me her father, a widower, understood. It was how he felt about her mother. She’d been his one true love, and he didn’t feel the need to ever have another. That’s how she felt about her dog who had died.

I knew I would get another dog. It’s hard for me to imagine anyone having a service dog and then choosing not to have another, although I suppose it must happen. Still, that’s why we use the term “successor,” and not replacement.

Barnum will be Gadget’s successor, but no matter how great our love or our teamwork, no dog will ever be Gadget’s successor.

My love for him always feels too big to fit into this little blog space, no matter how many posts I write.

-Sharon, the muse of Gadget, the spirit of Jersey, and my current clown and acrobat, Barnum, service-dog-in-training

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i'm doing a bit better now, so i've put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

  1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
  2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

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.

Level 2 Tests, Part 2

Here are more Training Levels tests videos! By now it’s been three weeks since we made these, and we are still practicing and refining the skills at these levels, as well as building the other skills not-yet-tested for Level Two.

A note on accessibility: The YouTube captioning program is, um, extremely limited, to put it nicely. Their software uses an algorithm to match captions to spoken English in the video. This does not work if, oh, say, you usually have a lot of background noise (such as wind or powerchair motor noises); or important noises that are not language (such as the sound of the clicker); and/or you’re not speaking clear English (which is true when my voice isn’t working well or at all, in which case I might also sign). Thus, it took hours of painstaking work to make some badly captioned videos, while other videos were totally impossible to caption at all.

However, the lovely and delightful Anna of Forward/FWD and Trouble Is Everywhere, pointed me toward dotSUB: Any Video, Any Language, which has software that is so much better. You can caption any ol’ damn video you like, regardless of language. Unfortunately, WordPress won’t let me embed the dotSUB video directly, like I can with YouTube.

Sooo, from now on I’m going to embed the non-captioned YouTube videos, and provide links to the captioned version and to the video description/transcript. I wish it weren’t so clunky, but there it is — if we make the internet accessible, then anyone can use it.

Also, here is the captioned version of the video from my previous post that I was not able to caption via YouTube:

On to the fun stuff!

We are still working on Level Two (L2), but I’ve moved us ahead on Zen (“Leave It”) to Level Three (L3), because, in general, we rock the Zen. (If you decide to watch only one of these videos, watch the L3 Zen test, to see Barnum clowning it up about thirty seconds in.)

Please note: Normally when we train, I make sure there are no distractions (unless they’re planned), and Barnum is really excited to train. We are both focused. This is probably the most important factor I’ve learned from Sue Ailsby’s method [scroll down to the bottom at this link] — Is the dog In The Game?

However, when we test, there’s someone else there filming — sometimes more than one person — and I have to try to remember what the criteria are for each test. I get nervous about the camera, too. Thus, I have a hard time focusing on the training/Barnum. All of these things affect Barnum’s focus, too. So, please don’t think we are normally this flaky and distracted when training! (My timing with the clicker is particularly abysmal.) Barnum has an excuse — he’s only seven month’s old — but cognitive issues or not, there is never an excuse for the trainer! Ah well.

This is the first part of our L2 Crate test — the crate in my bedroom. The criterion for Level Two crate is that the dog enters the crate with no more than two cues, allows the door to be opened and shut, with no pawing or vocalizing.  This is the crate we use the most. We had a false start, but I decided to consider it a fluke, because we use this behavior all the time. The non-captioned version is below. See the captioned version here. Read the description and transcript here.

This is part 2 — the crate in the living room. Ironically, though we use this crate a lot less, Barnum does better in this part of the test, pretty much because we had the two previous sessions in the bedroom (practice!). See the captioned version here. Read the description and transcript here.


This is our L2 Distance Test. I never taught this as a distinct skill before, but I’m loving it. I already use it sometimes when I’m sitting in bed and I want Barnum to come around my wheelchair from one side or the other. I can tell we can use this one a lot in the future. The criteria are that the dog must go around a pole or other object two feet away from the handler, with no more than two cues. See the captioned version here. Read the description and transcript here.
Finally, our L3 “Zen” Test. The dog must leave alone food in a stranger’s hand for 20 seconds, one cue only. (I wrote “40 seconds” in the description that accompanies the video, but that’s wrong.) He met my neighbor once before, but he was focused on her dog that day, so he doesn’t really know her. (Though we do still have some work to do with manners, as you’ll see when he starts to snorffle her pockets!) See the captioned version here. Read the description and transcript here.

Comments are always more than welcome!
-Sharon, Barnum, and the Muse of Gadget

The Puppy Ate My Keyboard

[Barnum arrived February 27. I started this post on March 2. I added to it and revised it many times throughout the month of March but never published it because, well, you'll find out when you read it that I was a mess and couldn't keep track of anything, which also included that I forgot I wrote it and just came across it. Thus, please keep in mind that these were my thoughts when Barnum was between nine and twelve weeks' old. He's now four-and-a-half months' old and a much different dog!]

I wasn’t going to write a blog today because I can hardly form a thought, let alone a sentence. Typing these fragments had barely occurred to me. In fact, I am moving my lips as I type this (I just realized) because apparently some part of my brain has regressed to a first-grade level.

I’d tell you how long it’s been since I’ve had anything remotely resembling a normal night’s sleep (which, given my multiple forms of insomnia and sleep disturbance, is not so normal to begin with), but I have no idea what day it is or when Barnum arrived and the toileting accidents and his heart-rending yelping of being crated without litter mates and dog mama has occurred and at what frequency and which days, except I have lost all sense of time. And I’m not even going to attempt to edit or proof this, and I know I’m creating appalling run-on sentences, but you’ll just have to put up with that for a while.  Maybe a year or two.

As an example, while I was typing the above sentence, I reached for my “lunch-time pills,” and it is now 6:54PM, although I did — thank you so much, my PCA Gloria! — actually eat lunch around half an hour ago. But of course I forgot to take the pills with the food, as I’m supposed to. So, I had the cup with the dog kibble, and my fingers digging into it, halfway up to my mouth before I thought, “Wait a minute. Why . . . am . . . I . . . eating . . . kibble?” I waited for that thought to gently float to the part of my brain that could handle it, and realized that I was trying to swallow a handful of other small, round objects. “Pills! Yes! . . . Wait a minute, these are not my pills.”

I have a nice, swollen purple bruise on my right hand where some puppy chewing got a little out of hand, next to a scratch that I’m assuming must also be puppy-play related, but I have no idea when I acquired it.

I am fighting off an incipient migraine and have over-exerted at every level far beyond anything I’ve done in at least a year. The floors are covered in mud (because, of course, I would get a new puppy whom I have to take out practically every ten minutes during mud season), because that my p-chair tires are completely caked with mud, which eventually dries and falls off all over the house.

I’m exhausted and grouchy and babbling. I’m ridiculously happy. I sing goofy made up songs — using real songs but with made-up lyrics. Example (to the tune of the Human League’s “Don’t You Want Me?“):

“Don’t you want it Barnum?
Don’t you want the squirrel?
Don’t you want the hedgehog?
Let’s give them a whirl.

I was looking for a puppy out in Iowa
when I found you.
We picked you up and flew you here and gave you a bath,
cuz of your smelly shampoo.

Don’t, don’t you want it?
You know I can’t believe it when you don’t want your chew toys!
Don’t? Don’t you want it?
You know I can’t believe it when you push aside your Kong toys!”

Our main focus has been on house breaking. That is such an understatement. We keep a log of dates, times and locations of output (and which type), indicators that he needs to go, and results once he’s gone. Someone in the house is always announcing, when they bring him in from outside, “He peed! But he didn’t poop,” or “He pooped! He pooped!” We are obsessed with it.

It’s been a very humbling experience! Foolish, foolish, egotistical me — I thought because I’d trained long behavior chains like, “Take note; run 1/4 mile to landlord; bark; down when landlord opens door; stay till landlord takes note; run straight home,” that I would be able to teach a puppy to poop and pee outside and not just randomly on the floor the split second I look away for one moment when he is out of the crate even though he just pooped and peed five minutes before.

I actually wrote the first part of this blog a few days ago. And now several more days have passed since I wrote a few more sentences, then a few more days, a few more sentences. Don’t ask me which days — that’s just cruel. I had Barnum up on my bed for a brief spell because he was an empty puppy — oh yes, the holy grail of house breaking — a puppy who has just peed and pooped and is therefore (theoretically) safe to be out of his crate and playing, snuggling, training, etc. He immediately started chewing my keyboard buttons. When I moved that out of reach, he attacked the telephone headset, then chewed on the mouse wire. Then it was time for puppy to go back in his crate for a nice stuffed chew toy he might or might not figure out how to chew.

Random thoughts that flit in and out of my mind:

- How can this tiny puppy ever be a service dog? I’m still teaching him that if he nudges a Kong or Biscuit Ball, kibble falls out. I didn’t think this would require actual clicker training to teach, but it has: look at ball, click/treat; move toward ball, c/t; nose ball, c/t; eat kibble that pours out of ball, c/t…. I had thought that the mere fact that kibble falls right out of the ball if you even breathe on it would be a good hint, but no.

- What was Gadget like as a puppy? Was he like this? He couldn’t possibly have been. I bet he figured out toilet training in one day. (I’m sure he didn’t, but still, I miss him. I want Gadget back. I want him here to show Barnum how it’s done.)

- Does anyone want a really cute, snuggly, adorable, pee- and poop-filled puppy?

- It’s weird to go to a door and have a dog next to me who has no earthly idea that he could learn to open it or even gets confused about how to get out of the way when it opens. In fact, one of the hardest parts of the toilet training has been getting Barnum and myself in or out the door — involving opening and shutting it, each time — before Barnum has an accident. If we pause for any reason that’s when disaster (in the form of a small, easy-to-clean-up, but oh-so-frustrating puddle) strikes.

- If I drop something, not only does Barnum not retrieve it for me, he will — if I’m lucky — not be able to find it (because, apparently, even if you drop something directly in front of their noses, puppies often can’t see it it). If he does find it, he will chew it, especially if it’s something fragile or expensive or dangerous to him, or all of the above. [Note: Eventually, I learned from reading a website what none of the many puppy-rearing books I'd read had bothered to mention -- new puppies can't see! At eight or nine weeks, their eyes are still maturing. In fact, Barnum's were still blueish at the beginning. His eyes are now brown, and he is perfectly capable of seeing or sniffing out treats on the floor. The amount that I didn't know about puppies was astounding. I know so much more now, and I still feel completely ignorant!]

- God, he’s so adorable, it’s practically indecent.

Baby Barnum first week home

See what I mean? Beyond, beyond cute.

- It was weird to go for my annual physical and leave a dog behind and be there without a dog and then come home to a dog who is not Gadget (and who then pooped on the floor).

- It also felt like a blissful relief to get away from him for a couple of hours and leave someone else in charge of him. Gloria, who was driving me to the doctor, said that’s how she felt when her son was really little — that going to work felt like a vacation. That’s how I felt: getting a pap smear was a vacation!

- All the women in my life who have kids keep saying everything I’m going through is typical of being a new mom: the anxiety that I’m ruining him for life with every mistake, the guilt that I sometimes just want someone to take him away for 12 hours (or perhaps forever) so I can sleep, the complete inability to think, the zombie-like facial expression, the relentless pursuit of following all the instructions in all the puppy raising books that tell you your puppy will become a horrible, out-of-control, dangerous, miserable wreck if you don’t accomplish all eight million absolutely necessary training, bonding, and socialization efforts in the first four weeks you have him; examining every single behavior or nuance as a predictor of the glorious/tragic path that lies ahead; my overwhelming feelings of inadequacy. Gloria keeps telling me I have “milk brain” because I can’t think worth a damn. Maybe this is the oxytocin connection??

- I think I’ve smiled and laughed more in the last two weeks than I have in the previous five years, combined. I also think I have cried — or been too exhausted to cry, and just laid there, crying in my mind — than I have in the past year, too.

- Will all this overexerting build up my strength or tear it down in a huge crash?

- I am so not up to this task. I was a fool. I had taken leave of my senses (which I no longer possess, at all) when I decided to get a puppy.

- I love when he sticks his whole head into the snow, so all you can see is fuzzy puppy butt, back and legs.

Barnum with head in snow.

Barnum loses his head.

- I love when he pounces and leaps.

Baby Barnum leaps in snow

A bouncing baby Bouvier.

- I love when he kisses me and curls up in my lap.

Baby Barnum Kisses Sharon in the Garden

Kisses!

- I love when he is sleeping, lying on his back with his paws in the air and his little white chin poking up.

Barnum at 14 weeks, sleeping on back

One very relaxed puppy!

- I love when he is tired and lies down with his back legs sprawled out behind him. We call this “Superman,” because he looks like he is flying — front and rear legs extended, very streamlined. (Don’t yet have a picture of it, or I’d show you.) He also does “frog leg,” where one leg is extended behind and the other is pulled up.

- I love that I am having to force myself to invite over every single person and dog who might remotely be willing (and even those who are not) to meet, treat, or play with him. I have socialized more in the past two weeks than in the previous few years combined.

- I hate having to deal with all these people — the exhaustion, the noise, the sensory overload, the exposures, exposures, exposures.

- I will never again take for granted a dog who is able to pee and poo outside and not inside, and to indicate when they have to go before relieving themselves on the floor, or who can “hold it” for more than two hours — or five to ten minutes or 30 seconds, depending on the circumstance.

* * * *

Guess what? I now have such a dog! (His name is Barnum.) We still have the occasional accident, but it is the exception, not the rule. He will even eliminate on cue — in our yard, that is. Elsewhere in the world he gets too distracted to pee or poo, so he holds it till we get home. Seriously

Barnum is also able to sleep through the night and is adjusting to my Vampire Girl schedule. (It’s a CFIDS/MCS/Lyme thing.)

I have only almost eaten kibble — thinking it was my pills — once or twice in the last couple of weeks.

He still attacks the headset, mouse, and keyboard when he gets on the bed. In fact, here is Barnum’s first After Gadget contribution:0000-                                                           32.

Now I just have to put his typing on cue.

As always, we welcome your comments.

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

P.S. Commenters of the previous post, I have not forgotten you! Responses forthcoming.

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.


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