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

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