Posts Tagged 'wheelchair'

Video: Pivot Left with Wheelchair

Barnum and I have been making tremendous progress in his training. All of a sudden, his learning has accelerated, and several skills are coming together. It’s very exciting.

One of the challenges we’ve had all along is keeping him in position when I turn left.* He generally works/walks on my left, so when I turn left, I am turning into him. His (very natural) response has been to backup — to avoid getting hit — and wait until I am perpendicular to him, when he will then step forward until he is eventually parallel to me again.

The problem is that I don’t want him perpendicular to me at all, ever, unless I have specifically cued that behavior. I want my service dog parallel to me, at my side, for several reasons:

  1. When he’s wearing a pack with items I want to access, it will be easiest to do so if he is at my side.
  2. Service dogs should be as unobtrusive as possible. We already take up a lot of space because I am a large person in a large powerchair with an oxygen holder on the back, and he is a big dog. When we add the pack, we’ll take up even more space. If his butt is sticking out, we’ll take up unnecessary room.
  3. He is most likely to get bumped into by a person or shopping cart or other things, or to back up, himself, into store displays, people, or other objects if he is not lined up next to me, where I can better protect him and shield him with my body/chair.

I didn’t have a problem teaching Jersey or Gadget to turn left, because with both of them I started with a four-wheeled mobility scooter. It had a very long base — as long as they were. So, when turning left, they were forced to stay parallel to me; there was nowhere else to go. Turning right was trickier — that is when they usually swung wide. I taught them right turns by using natural barriers — walls — and making right turns with the dog between me and the wall.

When I switched from a scooter to a powerchair with Gadget, he already knew how to move correctly with me, and it was never a problem to apply what he knew of walking with a scooter to walking with a chair. I didn’t have to do any retraining.

I’ve tried using natural barriers with Barnum to teach left turns, but there really aren’t many available. There are no accessible outdoor structures (like the garage I used to teach Jersey and Gadget, when I lived elsewhere), and in my home, there are very few walls or pieces of furniture that provide enough room for making turns.

I came up with a new way. I used the method that many trainers use for teaching hind-end awareness or for heeling training — having the dog place their front paws on a thick book or low stool, and then clicking them for taking steps with their hind legs. Eventually, they learn to pivot.

Barnum and I have been doing this pivot training for a few months, though not very frequently. Since one of the first shaped skills I taught him was to scratch his nails on a filing board, it took a while to extinguish scratching the book. Another issue we had to contend with is my problem with spatial awareness and cognitive mapping.

I’ve never had a good sense of direction, and the multiple insults to my brain from chemical injury and neurological pathogens hasn’t helped matters any. There are several posts I want to write about how brain injury affects my life, especially my two most important and beloved activities — dog training and writing — and this is one example. Before Barnum and I did a session, I had to cue him to walk with me in his “service dog walk” to figure out which way his butt should swing. I’d find a landmark in the room and circle my finger again and again in the direction I wanted his butt to spin in relation to that landmark. I didn’t want to accidentally shape him to spin right! Sometimes I just wasn’t mentally with-it enough to train this behavior.

Even after I’d captured and reinforced hind-foot steps to the left, he was pivoting without any seeming awareness that he was, or that that was what he was being clicked for. I think he has just recently become aware that his hind-end movement is what earns the treats.

The video below (which has no sound, except clicking, so it is not captioned), shows how the skill is now coming together. First I give him a few practice clicks spinning on the book, and then I slowly join him in the exercise, trying to click for him moving his hind feet when I move my chair — or even just to catch up and put himself parallel to my chair.

We still have a ways to go. The pivoting is not a default yet, but he’s incorporating the movement more often when we do “working walk” than he used to.

For those who are wondering about a cue — I did not attach a cue to this behavior. The cue will simply be my chair turning left.

– Sharon, the muse of Gadget, and Barnum (left, left, left, right left) SDiT

* This discussion pertains to “working walk” or “service dog walk,” not just simple loose-leash walking. If we are going for a casual walk, for recreation, he doesn’t have to stay in position. What I call “working walk” requires Barnum to be at my side, parallel, and giving me brief eye contact at least every three seconds, but usually more like every other second at minimum while moving, and more sustained eye contact when we’re stationary. Most people would think of what we’re doing as “heel,” as I used to. However, “heel” is actually a precision drill-team-like movement, used for obedience competitions. There aren’t many real-world applications to “heel,” especially because it can’t be maintained for long periods; it’s too demanding.

New & Improved Bouvier!

Now, with significantly reduced levels of testosterone!

Oh. My. Dog.

I’m backlogged on posts I’d intended to write today, yesterday, the day before, etc. But I’m not writing them. Instead you’ll have to suffer through another gleeful post about the progress Barnum and I are making.

First of all, my outdoor powerchair has been fixed — again — I hope! It seems fixed. I used it today and it ran very well. I didn’t notice any problems. Please, please let it be fixed, once and for all!

Sharon in a woodsy setting in her large outdoor chair. It has very large black knobby tires, elevated black metal leg rests, a purple square base, and an oversized gray captain's chair with headrest.. Sharon is reaching into a treat pouch hanging from the joystick while baby Barnum (4 months old) trots toward her.  He is shorter than the wheels. The chair gives an impression of great size and power.

This is the kind of rugged terrain that chair needs to handle.

My chair underwent quite an overhaul. It was rewired. the battery boxes were replaced and terminals cleaned, loose wires more securely tucked away, and light switch more firmly reattached. I also got new chargers!

(Thank you, Mom and Dad, for taking my chair for repairs and returning it to me! And for putting up my dog-smelling van for two weeks!)

Anynoodle, Barnum and I went for our first real walk in a month or two. As usual, before we left, I asked him to pee, and he did. Hooray.

I didn’t know if he’d respond differently to this chair than the only one I’ve had to use lately, but he seemed more comfortable, actually, with moving next to the outdoor chair today. I assume this is because 90 percent of our walks have been with the outdoor chair, so it’s more familiar.

I kept the pace slow, and he was damn-near perfect for the first several minutes. If this had been a Level Three test for loose-leash walking, we would have passed! However, I couldn’t consider it a test because I was doing a lot of clicking and treating. He’ll have to be able to go 40 feet without clicks or treats to pass that.

To get to that level, I will raise my criteria and reduce my rate of reinforcement — clicking for eye contact and also for relaxedness — and then I can start phasing out the treats. He is showing some nerves and apprehension during some parts of the walk, and I don’t know why, so I tried to click him for “enjoying yourself,” as well as loose leash and eye contact and such.

But, I didn’t take this walk with the plan of testing anything. I just wanted to get more practice in and have a nice time and give him a bit of exercise. The bugs were not as bad as they’ve been lately, either.

All was going well until  we were partway up the very steep hill, and Barnum’s friend, Lucy, the Vizsla, came roaring down to us. She is typically off-lead, and likes to dive-bomb Barnum to get him to play with her, and to beg for treats from me.

Longtime readers know that nothing is more exciting and distracting to Barnum than other dogs. He also has a history of playing with Lucy. Needless to say, staying controlled and on a LL is difficult with Lucy roaring around.

Oh, and yeah, Barnum was not wearing his no-pull harness, just a regular buckle collar.

At first he started pulling to get to Lucy, and I backed up as fast as I could and tried to get between them. He looked at me, I c/t. He looked again, c/t!

He  repeatedly chose  to interact with me and earn treats rather than throwing himself at Lucy!

I couldn’t believe it! Not only did he generally keep a loose leash and repeatedly give me uncued eye contact, but then he started throwing sits, and I was able to CUE sit, down, and watch me, several times!

The most amazing thing was that I was able to use my Zen cue (“Leave it,”) to get him to turn from Lucy to me. There were several times when he really would have been well within doggy manners to tell her off. She sniffed his butt, his penis, his face, and tried to get between him and me, actually trying to grab cheese right out of his mouth, and he kept responding to my “Leave its,” by ignoring her. Sometimes I didn’t even need to cue him. He was just so focused on me doing c/t as fast as I could.

Today felt like a HUGE breakthrough.  It was an almost spiritual experience, having those brown eyes staring at me so hard, I could practically see the gears going in his mind. He worked so hard to focus on me and not be swayed by the temptress, Lucy!

GO, TEAM BARNUM!

He wasn’t perfect, of course. He knew (or deeply hoped, and he was right) that once we got to her driveway, if he sat and gave me eye contact, I would  release him to play off-leash with her. As  a result, the closer we got to her driveway, the more he lost focus, until he was pulling every time we crossed the driveway threshold, and I had to keep backing up.

However, he did then sit and stare at me, and hold his stay, off-leash, until he was released. I also managed to repeatedly call him off marking off-leash (not every time, but even once was 100 percent more than in the past!) and multiple “Leave it”s from snorfling my neighbor’s adorable baby, who just started walking three days ago. She loves dogs and wasn’t afraid of him, but I didn’t want him to knock her over or get slime all over her face. (All that panting and cheese-eating, Barnum was good and slime-faced by then.)

His Zen definitely needs a lot of work — most of the time he didn’t actually stop cold and turn or back up and look at me — but he did at least not do the thing I didn’t want him to do, most of the time. He seemed to understand that this was a baby person, and that made her interesting (she’s shorter than him!), but he also seemed to be showing some care around her. He just really wanted to sniff her.

Anynoodle, he and Lucy played, and he ran around marking things, and rolling on his back in the grass, and exploring. We had some other breakthroughs here: He came when called twice (though not every time). We came running after me when I drove out of sight. And I was able to do several short sessions of training with him while Lucy was right there! He sat, hand-targeted, and gave eye contact, all on cue, despite Lucy being A) a dog, and B) all over him and me to try to get to the treats.

On the way home, he was so tired, he kept wanting to stop and rest, but even though I was going slow, I couldn’t carry him or anything! He HATES the heat. So, he was speeding up, partly to get to Lucy (who decided to escort us home) and partly because he wanted to get home. Ironically, I had to keep backing up every time he did this. I told him,”The slower  you go, the faster we’ll get there,” but he didn’t seem to respond.

Must. Sleep.

– Sharon, the muse of Gadget, and Barnum (80% more likely to be SDiT)

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

QuickPress: Little Miracles

(Shallow) Background

Friday, I took Barnum to the vet for some blood work. When we arrived, he ran around inside the van, whining with excitement. (Anytime we go anywhere, he’s thrilled.) I probably should have taken steps to attempt to calm him, but I was negotiating for the reasonable accommodation of having Barnum’s blood draw in the van, since I can’t go inside the clinic. (I have a cargo van, not a minivan, so there is a big, empty space inside. It’s not like I was asking them to do the blood draw in the parking lot or inside a regular little car.) I doubt I could have gotten him relaxed and focused enough to accept food treats, anyway.

Barnum was fine when the first vet tech came to the van. When the second one  joined us, he freaked out. Don’t know why. He allowed us to hold him only because I’ve taught him, “Hugs!” for restraint, and I was doing most of the holding. But he was really anxious (and thus, uncooperative)!

I thought, “Am I living in a dream world to think this dog will ever be a service dog? I can’t even get him to focus on me at all or take his favorite treats (chicken feet!) if we are outside our yard!”

I still haven’t managed to do much about getting my (outdoor) powerchair mobile again, but I thought since I was already bundled up for cold weather, Barnum already had his “Easy Walk” harness on, and I didn’t have a personal care assistant (PCA) physically capable of walking him, I would try to take him for a short walk in my “indoor” power wheelchair. It actually went pretty well, and I was thinking, “This wasn’t as hard on me as I expected. Why aren’t I doing this every day?”

Little Miracles

1. By late that night, I had barely eaten that day, was exhausted, shaky, weak, and had a headache rolling in. I was two hours late in starting my infusion. I’d forgotten to ask my PCA to set up my electric menorah (which I love), on my window sill. Barnum, fortunately, seemed to be conked out.

I wobbled over to my menorah, plugged it in, and sat on the edge of my bed, singing the first blessing, which is the blessing over the candles. I turned on the candles for the third night. Despite feeling physically crappy, the warm glow of the lights and the familiar blessings washed over me, relaxing me, imparting a sense of well-being.

As I was singing the second blessing, thanking G-d for miracles, Barnum suddenly bounced up from his crate. He wiggled over to me, his stump of a tail wagging as fast as possible, and turned circles around me, bopping into my legs.

This is how I interpreted his body language: “I’m so happy! I love you! I like it when you sing! Pet me, and pay attention to me, and love me up! Aren’t I fabulous?”

Yes, fabulous — I had to agree with him. I still felt like crap, but I didn’t mind. I had that “everything will be okay” feeling. It takes a lot of work to be utterly miserable when there’s someone wagging his whole body at you, radiating joy and sheer pleasure in being in your presence. I slogged my way through infusing, heating up the food my PCA had prepped, and treated Barnum and myself to a round of nose-touching a variety of objects. This is a building block to the trained retrieve in Sue Ailsby’s Training Levels, and it’s a skill that Barnum enjoys and is good at.

Overall feeling for the night: Good dog! Good medicine.

2. Of course, healing for the soul only does so much towards healing for the body. In this case, not a hell of a lot, as it turned out.

I went to sleep at 5 AM, even though I’d been wishing since 8 PM that I was asleep. Three hours later, at 8:00 AM, I woke up because I had to pee. (I have to pee very frequently. This is true for everyone I know with CFIDS/ME.) I was in severe pain and very weak. Partway through peeing, I had to stop to vomit. Not a great start to the day.

The rest of the day wasn’t any better. Although it was not as bad as a stuck day, it was pretty close. I couldn’t speak, and I couldn’t move much beyond minor hand/arm movements, such as typing while laying down in bed. I was in a lot of pain. The best part was that I slept most of the day.

My evening PCA came to feed me and help me attend to basic personal care needs. I have a “doorbell button” that I use to call my PCAs from another room. As I’ve mentioned in previous posts, one of the worst functional losses for me due to Gadget’s death has been that I can’t send him to get someone for me, and this button is my main “replacement” for this help.

For example, last night, my PCA helped me transfer out of bed to my chair, and then from my chair to the toilet. I brought the doorbell button with me to call her when I was ready to do the process in reverse, which we did. When I was back in bed, she went to the kitchen to continue working. At some point thereafter, I realized I needed her. I looked for the button. I’d left it on the footrest of my powerchair, out of reach.

I tried using my reacher/grabber against my chair’s joystick to move it around enough that I could grab the button. No good. Too far, and the wrong angle. I tried beeping my chair’s horn, but it’s pathetically quiet, and not surprisingly, my PCA never heard it.

“Well,” I thought. “Barnum and I have been working on cues for barking and shushing, so maybe I can get her attention with some barks.”

I had my doubts because (a) Barnum barks for fun, still — at his toys, at his reflection in the glass doors, etc., so I figured she’d probably ignore him, and (b) Barnum and I had never practiced “Bark!” with only the hand signal (ASL for “speak”), nor with me in bed.

I got his attention and gave the cue for “bark,” and out came a very nice, distinct, sharp bark! I clicked and treated, and we did it several more times. Sometimes they were more like whines, as barking on cue is a different ball of wax than doing it as the urge strikes, but occasionally I’d hold off clicking, and he’d work his way into a loud, strong bark.

Did this bring my PCA running to check on me? No. I did eventually manage to get her attention another way (see below). The barking had not raised suspicion because she assumed he was just barking at his knuckle-bone or something. However, I was then able to tell her, “In the future, if you hear him barking repeatedly when I am alone with him, please come check on me.” I plan to tell all my PCAs this, and . . . voila! A service skill is born! (Or, is gestating. I still need to extinguish his other barking behavior, and we need more practice to get many strong, clear barks in a row as an “attention bark,” but it’s a very strong beginning! And he loves it!)

Good dog!

3. When the barking failed to work, I once again tried to reach the doorbell button with the reacher. Barnum now was “in the game” for clicker training. When he saw me fiddling with the stick, trying to manipulate the button to lift it (and utterly failing), he naturally became interested in this thing. After all, it could be a toy that needed demolishing!

He reached for it, and I made encouraging, happy noises. I thought I might be able to get him to drop it closer to me (he does not yet know a formal retrieve, but he will play fetch sometimes), or he might chew on it and accidentally press the button.

What happened was, as I held my breath and watched, he reached down and touched the button with his nose! I heard the “ding-dong” of the bell in the kitchen. Good dog! I clicked and treated and made lots of happy sounds and invited him onto the bed for petting.

Do I think Barnum knew what I was trying to do, and jumped in, Lassie-like, to save me?

No, I don’t. We have been doing lots of nose-touch training lately as a step in teaching a trained retrieve, and that has meant me holding up every conceivable object for him to nose target. Therefore, it’s possible he was nose-touching the button to see if it would earn him a c/t.

However, I think that’s unlikely, too, as he has not yet learned to touch things on the ground. In fact, the cue for nose targeting at this stage is just my holding an object in front of him.

The most likely explanation is that he was curious. He is still on the mouthy side — liking to explore things with his snout and mouth — and he saw me messing with a strange new object and decided to see what he could learn about it. In doing so, he probably accidentally pressed the button.

But I don’t care! The result is that I needed to call my PCA, and Barnum did it! Curiosity is good, because it’s part of the desire to learn and test out new behaviors that is such a part of clicker training a service dog. In fact, his outgoing, curious nature was a major reason Barnum’s breeder chose him as the best SD candidate.

Another important aspect of the behavior is that once I c/t him for touching the button, he stopped nosing it, and I was able to get him to focus elsewhere so that he didn’t decide to chew, stomp, or otherwise maul it. We are learning to communicate, and it’s a beautiful thing.

Will he ever be an “all-around service dog” who has the manners, focus, and obedience required for public access? I have no idea. Nevertheless, I am gaining confidence in us as a working team. I feel more and more that he will be able to help me out at home, to be an assistance dog to me in the house. Since I spend over 98 percent of my time at home, that is a really big deal.

 

Barnum age 11 months

I'm the shit!

Good dog!

Happy Hanukkah!

-Sharon, the muse of Gadget, and Barnum (“The Nose”)

QuickPress: God Laughing. (Me? Not so much.)

You know that expression, “If you want to make God laugh, make plans?” Or “Life  is what happens while you’re making other plans?”

Well, I guess I’ve been having a lot of life, or delighted deities or whatnot, because my life is not going according to plan.

I posted before Thanksgiving that I was hoping to do lots of training with Barnum, especially recalls, during my week alone. I also wanted to go on a lot of nice walks with him.

However, the Saturday before Thanksgiving, on his run around the pond with Deb, he somehow took a chunk out of his inner toe pad on his left, front paw. I didn’t realize how bad it was until, after taking him the next day to play raucously with his favorite dog buddy, he was limping. I cleaned it up, but the next morning I could tell he was feeling pretty bad, and the wound did not look good.

Thus began a week of limited exercise, limited training (because so much of it requires movement, and that was painful for him), and lots and lots of foot first aid. The technique I developed was:

  • Wipe affected area with alcohol prep pads. (I had used a different antiseptic the first time, and he jumped and yelped and tried to get out of Dodge. The alcohol seemed to sting, but not hurt as much.)
  • Keep paw in the air so it stays clean before I . . .
  • Apply triple antibiotic ointment.
  • Continue to keep paw in the air so it stays clean before I . . .
  • Apply a sterile gauze pad.
  • Continue to keep paw in the air so it stays clean before I . . .
  • Tape the pad in place. I started out with paper tape,  but that didn’t hold as well as my waterproof first aid tape. Unfortunately, I need that type of tape for my PICC line care, and I used a ton of it on Barnum with twice-daily dressing changes for almost two weeks, because  I also needed it after I . . .
  • Put a clean cotton sock over it all, and tape it in place with tape wrapped above and below that protrusion where his dew claw would be if he still had it. That keeps the sock from sliding down. Then, of course, I applied the traditional medical . . .
  • Cayenne pepper, to the sock. Yes, this might seem mean, but it was the only thing initially that kept him from tearing off the sock. Eventually, he learned to leave the sock alone, and I didn’t need to use it anymore.
  • If he needed to go out, I had to put a plastic bag (or two or three), or a couple of nitrile or vinyl gloves over it all, and tape those into place, as well.
  • Eventually, when the wound was doing much better, I switched from the sock/bag procedure to a less bulky . . .
  • Sterile thin paper face mask around the paw (can you tell I have a lot of leftover infusion supplies? Thank goodness!).
  • This was held in place with gauze bandage (which only required two small pieces of waterproof, first-aid tape). Then the whole “look” was topped off with a . . .
  • Powder-blue dog “booty” over it.
Barnum big head in booty

Does this booty make my head look big?

  • “Booty” does not do this piece of canine footwear justice. It’s really more of a doggy high-tech sneaker. I call them “the Nike cross-trainers of dog booties.” They come in a set of four, but for the past week, he’s just been wearing one, which I rotated, based on which was muddy and which was clean and dry. It has a mesh top for breathability, elastic to keep it on comfortably, along with the velcro, and real treads on the black rubber sole.
Doggy Nikes

I am ready to be on Pawject Dogway.
  • The sneaker is not waterproof, but it keeps the bottom of the paw relatively dry, unless it’s really wet out, and it has the advantage of being much harder to shred, pull off, or destroy than the sock, bag, etc.

Therefore, not so much with the walks and recall training. On the plus side, a lot of handling training! He is now very good about letting me mush and maul his front, left paw!

Of course, eventually he and I were both physically doing well enough that I wanted to take him for a walk — which I did after my morning PCA had left and before my evening PCA came on shift. My big, bad-ass, outdoor chair that is made of recycled parts, which I bought specifically to be able to walk Barnum, was low on battery power. I knew that already. I also knew it wasn’t good to let it sit too long without using it or charging it, so I made sure to charge it mid-week.

What had been happening with my chair was that if we went for very long walks, especially really fast, and/or at night when I had the headlights on, and/or over really rough or hilly ground, it would lose power in a serious way on the way home. So, my plan, for the sake of my chair and Barnum’s paw, was to take us for a short walk on one of the less rugged roads (though, since I live on a dirt road in a hilly area, there is only so much that can be done to avoid that).

Pchair with headlights

This is how my bad-ass chair looked when it was under construction, a year ago (before it got all dinged up and the batteries died).

Here’s what occurred:

I got Barnum’s harness and hunter-orange “recreation/visibility” vest on him, and got my headrest and foot rests set and adjusted on the chair, and away we went, out of the yard, down the driveway, right out onto the road, about fifteen or twenty feet, and then the chair totally died. Totally. Dead. Could not turn around. Nothing. No lights on the control panel.

We sat there in the middle of the road. I waited for a car to come so I could ask for help. Barnum waited for me to get on with whatever the hell was holding me up so we could get going. After all, I had asked him if he wanted to go on a walk? Do ya? Do ya wanna go for a walk?? Wannagoforawalk?? Do ya???

Well, I lied. The poor dog got no walk. Eventually, a car came in our direction . . . and turned in at the first house on the road. (My house is the second, up the road.) I saw two people, whom I thought were women, but I couldn’t recognize them from the distance, and waved and said, “Hello! Hello? Is that Lynne?” (Lynne is my neighbor. I realized they were neither of them Lynne because they just looked at me and each other, and didn’t take a step in my direction, whereas Lynne would have greeted me warmly and probably realized something was wrong.)

They started to head into the house. I said, “I’m stuck!” That got their attention. “Can you help me?” I asked.

They came towards me. Barnum stood at attention next to my chair, looking at them with serious intent, and gave a couple of experimental “woof”s. These are quiet, hoarse, tentative woofs for situations where he thinks he should bark, but he hasn’t yet figured out how to do it.

“You’ve trained him really well,” one of the women said. “He’s very protective of you.”

“No,” I said. “That means I haven’t trained him well. He is not supposed to be protective of me. That’s a problem. We’ll need to work on that.”

This was the first time he’d ever barked at a stranger when we were out and about. I was not happy about it. Fortunately, when they got closer, he became his usual goofy, wiggly self and wanted to sniff their butts and kiss and play.

Meanwhile, I explained that I lived there (pointing), and my batteries appeared to be dead, and could they push me in my chair home? Fortunately, they could. I really hadn’t known if they’d be able to, because my chair weighs over 400 pounds, and I’m no feather, either. They were young, strong, and healthy, though, so it was okay. Except for the humiliation.

I decided I really must, must, must finally deal with figuring out which kind of wheelchair batteries to get to replace the dead ones, which I’d been putting off because I am not at all mechanically inclined, and the whole thing makes me anxious as hell. Only three things got in my way:

  1. I’d run out of the supplement that I use to help me sleep, so I’ve been even more chronically sleep-deprived than usual, which makes it hard for me to think about, read about, and take in new information about, a subject that is both cognitively taxing and emotionally loaded for me.
  2. I spent a lot of energy bandaging and unbandaging Barnum’s foot, and taking him out to eliminate, after making sure he really, really had to go, and was not just ringing his “out” bell because he was bored and wanted to go out and play. Why did I want to make sure? Because any time he needed to go out, I had to put a bag or glove or sneaker on his paw. The result was that one night I did not get him out in time. I discovered this the next day when my PCA informed he had peed on a bag of my infusion supplies. I don’t think that’s medically advised.
  3. I was wracked with horrible grief after realizing that I have a huge backlog of grief from the loss of numerous people (including Gadget) to death or abandonment, as well as never having mourned the many functional losses and other “life losses” (such as my former career as a writer and editor) related to getting multiple tick-bourne diseases three years ago. I’ve been numb for most of the last year because I couldn’t cope with how excruciating the grief over Gadget’s death was if I allowed myself to feel it. I started to feel it, due to the anniversary of his death, and it felt like someone was squeezing my heart while hitting it repeatedly with a brick. The grief also made the insomnia worse.

That’s where Barnum and I are at, currently. His paw is almost totally healed. My heart is broken. Win some, lose some.

We’ve been doing more training again, and I still haven’t managed to even follow the links my less-wimpy and more mechanically inclined pchair-using friend sent me about batteries. I’m afraid I’ll get the wrong kind or otherwise screw up and break my chair.

One thing I am not afraid of, though, is ordering products from dog catalogs. The next time I place an order, I’m stocking up on vet wrap, which is self-adhesive, waterproof, and coated with bitter apple and cayenne to prevent chewing. I think maybe a case of it should last us till the end of the year.

By the way, dear readers, Barnum and I have actually trained a bunch of stuff in the last couple of months that I am backlogged about posting about. I’ve gotten wrapped up in writing Gadget bereavement posts, including what will hopefully be some useful grief resource pages. So, if all goes well, the next many posts will be a mix of happy training updates on Barnum and more somber (but maybe in some way uplifting, affirming, or useful) posts about grieving a service dog.

Comments very welcome!

-Sharon, Barnum (“bootylicious” fashion icon), and the muse of Gadget (who looked good in anything)

P.S. Breaking news! My favorite online vet, Doc Truli, aka VirtuaVet, just posted a great solution for covering a dog’s legs.

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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