On Medical Leave

I went to see my doctor as I'm still having trouble from the surgery last month and I've now been placed on medical leave.

On the one hand, I feel an undeserved sense of shame, like my body has let me down or as if there was something I could have done to avoid this.

On the other, I'm so exhausted that I know this is the right thing to do.  I need the time to recover and gather some semblance of energy again.

We Passed

It's official.  We passed our Public Access Test and are now officially licensed handlers for Icon.  

This is actually a bit of an unusual circumstance in the service dog community.  Service dogs are usually directly handled by the people they're helping.  But for children (and some adults) with autism, the dog must be handled by the parents which creates a big of a legal grey area.

It is not permissible to prevent someone from bringing their service dog with them into a public place.  It is the same as telling someone they can't bring their wheelchair.  However, technically, the dog isn't our service dog.  It's Alex's.  So they can't prevent Alex but they could, in theory, try to prevent us.  Which is how the Westjet incident happened.

It will happen to us at some point, just as we always have to be aware of Alex's behaviour and its impact on the rest of the world.  But the vast majority of people we've encountered so far have been respectful, pleasant and understanding.  As I'd hoped, Icon is serving as a visual heads-up to the public that Alex is a special boy and needs some extra tolerance.

Blue Roses

This is a little more overtly religious than I'm generally comfortable with, but I thought the sentiment was very sweet and a good way to round off the week:

Here is a little something to think about.

Having four visiting family members, my wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.  

I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, "Mommy, I'm over here."  

It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's your name?"  

"My name is Denny and I'm shopping with my mother," he responded proudly.  

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is Steve."  

"Steve, like Stevarino?" he asked.  

"Yes," I answered. "How old are you Denny?"  

"How old am I now, Mommy?" he asked his mother as she slowly came over from the next aisle.  

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."  

I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone's attention. He then abruptly turned and headed toward the toy section.  

Denny's mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn't even look at him, much less talk to him. I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God's Garden; however, “Blue Roses” are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn't stop and smell that rose with their heart and touch that rose with their kindness, then they've missed a blessing from God.  

She was silent for a second, then with a tear in her eye she asked, "Who are you?"  

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love living in God's garden."  

She reached out, squeezed my hand and said, "God bless you!" and then I had tears in my eyes.  

May I suggest, the next time you see a blue rose, don't turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of God, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.  

From an old dandelion... Live simply; Love generously; Care deeply; Speak kindly; and, Leave the rest to God.  

"People will forget what you said, people will forget what you did, but people will never forget how you made them feel."

Time for Testing

The representative from National Service Dogs is coming today to see how Icon is settling in and do our official Public Access Test.  (I'm not sure if the test will be today or Thursday or Friday as she'll be here for three days.)

Icon has been doing fairly well with the practice tests we've been doing but not so good on the spontaneous stuff.  This morning, Nathan had left a piece of cereal on the floor and Icon ate it.  I tried to take it out of his mouth, but no luck.

He does well with passing other dogs as long as we've moved him out of the way to a sit position (though I still haven't figured out what to do when people bring their dogs right to him).  He can pass the food drop, provided we have our complete attention on him.

It's going to be a busy three days.  But we'll make it all work, one way or the other.

Calling An Abort

On Sunday, I had to call an abort on Alex's Easter celebrations.  He'd been in a difficult and boundary-ignoring mood all day, probably due to a poor night's sleep.  Lots of verbal protests and screaming at us.  After we'd been at my parents' house for less than an hour, he bolted away three times while we took Icon out to a park.  After the second, he'd been warned that if he did it again, we would go home.  Less than five minutes later, he did it again.

I drove Dave, Icon and Alex home and then came back to finish dinner with Nathan and my parents.

It's been awhile since I had to take Alex home early from my parents.  Usually, even if he's having trouble, he pulls it together so he can stay.  This time, he was so blatantly escalating that I'm wondering if he wanted to go home and figured this was the best way to do it.  Dave said that he was considerably calmer and better behaved once they got back to the house.

If that's true, it's a little troubling because he effectively threw a tantrum and got what he wanted.  So we'll have to keep an eye out to see if there are more tantrums.  Which will be hard because his behaviour has been more difficult throughout this year.

It's exhausting dealing with the tantrums, though I was pleased that I didn't have to justify my decision to take him home to my parents.  I was braced for the usual analyze and protests that it's such a shame that he has to miss a special event, but it didn't happen.  It's nice to all be on the same side.

First week at home

Technically, it hasn't been a full first week as yet, since we came home on Saturday, but it's close enough for blogging purposes.

We've seen an upswing in verbal protests from Alex, all centered around the dog.  I haven't been getting protests about other touchy issues (like brushing hair or teeth).  It's all "No Icon."  But at the same time, Alex seems to really enjoy playing with Icon and petting him, so Dave and I are still betting on "No Icon" being a change protest rather than something specifically about the dog.

Alex has been walking the dog with me in the afternoon, finishing with a good play and romp in the park.  He likes holding the leash, so I usually give him the end while I hold the middle of it.  That lets me control Icon and actually sort of tethers Alex to us, so it's working well.  (We'll see if NSD agrees when they come out to see us next week.)

The school is seeing an increase in bolting.  It's probably a result of the changes and Alex having fewer bolting opportunities at home.

Dave and I have been taking turns sleeping in Alex's room so that we're on hand if anything goes wrong.  So far, no issues, but despite the crappy sleep we're getting on an air mattress on the floor as opposed to our comfy bed, we'll keep going until we're sure that we're past the honeymoon period.

It's an adjustment working everything into our routine.  Walks, doggie bathroom breaks, training time, it's all got to be stuffed into an already full schedule.  But (at the risk of jinxing myself), it's going well.

We have an appointment to introduce Icon to the vet next week and I've gotten him officially registered with the City of Ottawa as a service dog.  We still need to look into pet insurance and other issues, but it's all coming together.

Icon Comes Home

It's been an interesting few days since Icon came home late on Saturday night.

The initial meeting with Ceili went very well.  She was in the kitchen when Icon came in and sniffed around.  She ran away and he just looked at her, gave the dog equivalent of a shrug, and kept going.  A little later, he found her again and gave her a good sniff (from a respectful 12 to 18 inches away).  She had a puffy tail and splayed legs, but no hissing or swiping.  She has hissed at him once, when he surprised her on the stairs, but he didn't seem too bothered by it.

The initial meeting with Alex also went better than expected.  We had asked him to say hi to Icon and were prepared to have that be the extent of their encounter for the first day (which was Sunday).  Instead, he immediately wanted to sit next to Icon and pet him.  We got a measuring cup so that Alex could give Icon treats without having to touch them and Alex used it without protest.

He was very intrigued by Icon's leash.  The trainers had suggested keeping the leash on during the day to help with control, but Alex kept picking it up and giving Icon commands.  In the interest of maintaining the training, we've hung up the leash early, but it is making things more difficult as Icon adjusts to a new home.  We're having to give more corrections than we were needing to do in Cambridge.

It also surprised me that Icon follows me around the house all day, unless told to stay.  Even if I just run upstairs for a minute, by the time I get what I needed and turn around: there Icon is.  

Nathan is having a hard time not playing and interacting with Icon.  We've given him the job of Icon Police, to let us know if Icon gets up when we've told him to sit or down, or if Icon starts snuffling after something on the floor.  It gives Nathan a chance to be near the dog in a way that shouldn't affect the bond between Icon and Alex.

Service Dog Training: Day 6

Today was our last full day of instruction.  Tomorrow we have a review of the Public Access Test, a farewell luncheon and then that's it, we are on our own.  (Well, not really on our own.  The NSD staff is still only an email or phone call away.)

It's more than a little surreal.  As I write this, I'm packing up our things.  For a week, we've been living in this hotel.  As far as Icon knows, this is home.

Tomorrow he'll see our real home.  And Sunday, he'll get to meet Alex for the first time.

I'm fully expecting Alex's immediate reaction to be "no dog" and possibly refuse to enter the house.  I don't think he'll resist for long, but he'll probably want to keep his distance for awhile.

We've got a plan for encouraging Alex and Icon to become friends:

- Icon will be staying in Alex's room (Dave and I will take turns sleeping there as well until we know both Alex and Icon are comfortable).  We'll bring Icon in after Alex is asleep and then be waking up with Alex to take Icon out.

- Alex will have to participate in feeding and grooming Icon.  We may still have to do some grooming to keep Icon in good coat, but as much as possible, we'll have Alex do it.  Even if we have to bribe him with gummies to do it.

- Speaking of bribes, we're also going to bribe him with extra screen time (specifically 30 extra minutes of watching the Weather Network), if Alex is willing to sit on the couch with Icon beside him.

- Alex will be participating in Icon's daily playtime after school (again, expecting to need gummy bribes)

This whole experience hinges on Alex and Icon developing a close bond.  Fingers crossed that it goes well.  We'll take it slow to make sure it is solid before we try and build on it.  But starting Sunday, it's going to be the beginning of a whole new way of working in our household.

Service Dog Training: Day 5 (and a half): midnight fire drill

At 3 am, our smoke detector went off.  It rang for 5-10 seconds and then the power cut out.  We immediately got ourselves in gear, grabbing our coats and shoes, Icon's vest and leash, and wallet and purse, then walking the seven flights of stairs down to the lobby.

About half-way down, our sleep-mazed brains clued in that no one else seemed to be trying to evacuate.  Since we were fairly certain that not burning to death is a common goal, I'm going to guess the other alarms didn't go off.  Add in that there was no smoke and we were fairly certain it was a false alarm.  But we kept going.

We got down to the lobby and were the only ones there, aside from the night manager, who was trying to contact the general manager for instructions.

Icon behaved himself very well, although he was clearly nervous.

After forty minute of waiting downstairs, the night manager offered to check out our room to make sure that everything was okay.  We walked back up seven flights of stairs and then confirmed that nothing was obviously combusting or smoldering.

Dave and Icon both went back to sleep fairly quickly.  Which proves that I'm the alpha and they both trust me to figure out if anything went wrong.

The alarm went off again at 5 am, when the power came back on.  This time, it was harder to soothe Icon (probably because all the lights went on and we didn't go downstairs).  I sat with him by his bed for awhile and petted him.  After about fifteen minutes, he went back to sleep and I crawled back into bed to wait for an all too early wake-up.

Service Dog Training: Day 5

Yesterday, we had another day of practicing control in a distracting environment as we went to St. Jacob's market.  Lots of in and out of buildings (despite a torrential rain).

We also practiced having the dogs tolerate having someone play with them in jacket (they shouldn't roll onto their backs or open their mouths) and having someone lie on them.  Icon did pretty well.

And he tolerated wearing the hat, and getting his photo taken.  Which earned him a treat.

At lunch, we found out that the family who was having the challenge with WestJet got it resolved.  The family was offered an apology and an upgrade to first class.  The mom got the call during lunch, which brightened up her day considerably.

After lunch, we practiced the halt command and walking with a tether.  That's going to be an adjustment.  The trainer acted as Alex, dropping the handle and trying to bolt.  We walked behind Icon and gave him verbal direction.  Once the handle dropped, we told Icon to halt and he dropped, stopping "Alex" in her tracks.

Icon was pretty tired at the end of the day.  He had a good 3 hour nap and woke up ready for attention and play.  It was snowing, so we cheated a little and had an in-room game of (careful) Kong toss.

Service Dog Training: Day 4 (and a half)

I just want to share a challenge that one of the other families faced.  They are booked to go home on WestJet and the mother called to confirm the arrangements for bringing the dog with them.  The airline already knew that the dog was coming, but the woman confirming the information decided to take it on herself to tell the parent that she could not have the dog with her in the cabin because it's a service dog for her son, not for her.

They spent over an hour on the phone, both her and the trainers, trying to get this woman to understand why it would be a problem for the dog to travel by cargo, how this was not her decision to make and all sorts of issues.  We had to leave before it was resolved, but it's yet another example of how these kind of unexpected challenges can pop up for families with autism, despite the best preparations.

This is the family's second service dog and the mother was kind enough to let us know that she's never had this problem when travelling with Air Canada, which they do fairly frequently.  But this is the first time they've travelled with WestJet and it will be the last.

The trainer let us know that we are never under an obligation to tell people who the dog is for or what it is for.  There is an identification card which says that the dog is trained and certified and that is all people are entitled to ask for.

Update:  After several hours on the phone, including over an hour of silence while "waiting" for a manager, the family had to hang up.  The following day, they tried calling only to be told there was no new information and that WestJet would call them back.  There was an implication that it might take days to sort out (even though the flight was in less than 48 hours.)

WestJet did call back before lunch.  With an apology and a free upgrade to first class for the trouble. 

Service Dog Training: Day 4

Good news first.  We talked to the trainers and I was worrying too much about whether or not Dave's doubts would affect their decision.  And they don't see any problem with us travelling to Calgary with Icon and Alex.

We started off the day with a game of Kong toss.  Icon did very well with responding to our voice commands.  We did some practice with sit and stay before tossing.  He's very good with "drop it" and doesn't growl even if we take the Kong right from his mouth.  He's just happy to play.  Although, we have discovered that he usually gets tired of the game before we do. 

 We're learning more about Icon's personality as the days go on.  He's very good at anticipating patterns and our actions, which is helpful in some situations and not helpful in others.  He's eager to please and attentive.  He's low-energy, and likes to take cat-naps whenever he can.

 Today was an outdoor activity day.  We went to a park and practiced going around the equipment.

 Icon had his first greet, where a child came up to him.  The kid was about 18 months old and started running at us determinedly.  I got Icon into a down position just as the kid reached us and the kid immediately lay down (face up) in front of Icon.  Icon gave a little sniff and the kid giggled and then the mom caught up to us and told her child that this was a working dog and we needed to leave him alone.

We also practiced going up and down stairs.  And we got a couple of opportunities to use our new collapsible bowl.  It worked better than I thought it might have. 

We finished off by practicing with the long lead.  Icon was the best in the class, staying patiently until we called him and then coming back to us.

We had a quiet evening while some of the other families met with their puppy raisers.  We'll meet ours in June.

Service Dog Training: Day 3 (and a half)

A lot happened yesterday, too much for just one post.

During the parent panel, Dave asked a question which really surprised me: did the parents have any advice for spouses like him who might not be 100% on board with the idea of the dog being helpful to the family?  He then went on to say that, in his view, we already were doing many of the things mentioned by the panel, such as eating dinner together, going to family events, family vacations.

It was hard for me to hear.  (Although I'm glad he asked rather than keeping it to himself, though I might have wished for a little warning in advance.)  I found myself panicking, wondering if the trainers (who were in the room), would count his statement against us: Dad's not on board, can't send Icon home with them.

It also showed me that we have very different pictures of our family life.  I see us as barely keeping above water, with frequent threat of drowning under the demands of Alex, work, and the requirements of life in general.  (Nathan does have his own challenges, but for the most part, we don't have to deal with major changes to our life because of him.)

Clearly, Dave sees us as basically doing okay.  Probably because I handle most of the work of dealing with Alex's therapy, behaviour work and searching out options.  I'm the one who handles all the prep work for those outings and vacations, and who spent a year getting our family all in the same room for dinner.

I'll be honest and admit there was some anger in there, too.  But it went quickly.  Dave has always been uncertain about adding new elements to the mix for Alex.  He didn't think it was necessary to seek out an assessment, or start any of the therapies we've tried, or try medication.  And yet, when he saw that these things were working and improving our lives, he gets behind them.

My feelings are hurt because of a missed social implication (something I've had to get used to with Dave).  Although he was strictly speaking about his own experience, the implication is that my experience wasn't important.  Since he knows (intellectually at least) that I put in a huge amount of effort, and that I find it difficult to sustain, to say that things are okay is to imply that he is okay with me being under stress and he sees no reason to alleviate it.  I know that is not what was meant but it's not quite enough to take away the sting.

We talked about it some more at dinner and I went through my reasons for wanting the dog and how I think it will benefit Alex (more independence, an increase in safety, companionship and a visual signal to others which should prevent Alex from being physically attacked).  He raised his concerns: he already has difficulty dealing with attention from others (since he can't read their intentions, every interaction is very stressful), and adding the dog into the mix will garner more attention.  We've already seen how there are some people who simply won't understand that they have to keep their hands and comments to themselves.  And that's been only over 3 days and in a town where service dogs are relatively common place, due to the fact that this is where they get trained.

I hope that if the trainers have doubts, that they will come and talk to us.  I hope that Dave's presence here and willingness to work offsets any concerns.  After all, it's the willingness to do the work which counts and he is doing it.

I'm also spending a lot of time worrying about what comes after this week.  How will Nathan deal with having Icon in the house and not being able to play with him?  How will we work out sleeping arrangements with Icon and Alex?  It's a lot to think about and, to be honest, it's keeping me up at night, brain whirling.  But that's how it has always worked in our family.  I spend a lot of time thinking, worrying and whittling down the options.  Then, when I'm down to two or three, I can share them with Dave, who will usually not have a particularly strong opinion (since he hasn't spent weeks thinking about it).  Then I usually end up choosing what I think is best and begin implementing it.

 

Service Dog Training: Day 3

Today was a rainy day so we had more inside work and lectures than outside.  Tomorrow we'll get to spend the day outside.

We met Icon's brother, Iggy, who is in training as a post-traumatic stress service dog.  Most of Icon's litter mates are in that program.

After a brief talk about the various challenges that can arise with taking a service dog to school, we practiced the food refusal part of the handler test.  This time, Icon did much better (or rather we did much better).

He was able to ignore his kibble on his paws and on the floor, when it was dropped on him and in front of him.  He kept his attention on Dave, even though he clearly really, really would rather be eating the food.

We also worked on the "visit" and "over" commands.  Visit is the command to have Icon come and put his head on your knee or lap.  Over is the command to have him lie down on top of you (or your child).

After practice, we had a parent panel with parents who have received service dogs.  They couldn't say enough good things about how the dogs have helped their children, but acknowledge there are still challenges.  One of the biggest issues is that the dog makes your family the center of attention, and people assume they have the right to question you about your child's diagnosis, abilities and anything else.

I asked them what advice did they wish they'd gotten before bringing their dogs home and these were some of their answers:

- It's a lot of work to have a dog and you won't be perfect at it.  But you're still good parents and the fact that the dog is helping doesn't mean that you've missed something.

- With the dog, your child will get experiences you would have never imagined were possible.

- It's important to be the alpha dog when dealing with rambunctious children or poorly behaved other dogs.

- You will be getting extra security checks at the airport.  (Apparently some people have been using people with disabilities as drug mules.)

- You have to keep practicing the skills the dog has learned at home.

We finished off the day with an independent excursion, a trip to Walmart and dinner at Applebee's.  We were worried about whether or not the dog would be accepted but there were no issues.  Icon curled up under the table and behaved like a perfect gentleman.

Service Dog Training: Day 2

We started off day 2 with some free play in the dog run at National Service Dogs.  Icon and the others (Halo, Kaiser, Koda, GeeGee and Kane) enjoyed getting some off-leash time being dogs.  It was really nice watching them run and play together.  It made me wish I knew more people who had dogs, so that we could make sure Icon can still have this experience when we get home.

Today we concentrated on leash work for the morning.  We kept working on sit, down and stay.  But we also learned how to deal with "forging" and "lagging", when a dog isn't in the heel position, but instead tries to go ahead or hold back.

I had a lot of trouble with it.  Which shook my confidence, which made it harder.  I had to take a moment and clear my head before I could get Icon's attention back and start getting him to follow my instructions.  We also tried the two different types of collars, a chain correction collar and what's called an EZ collar, which goes over the muzzle.  I discovered Icon was a lot better behaved with the EZ collar, so I suspect that's what we'll be using more.

After lunch we went back to the mall and practiced parts of the handler test.  Like having the dog stay despite not having the handler nearby and having a lot of distractions.  Or having the dog follow commands despite no one holding the leash.  Or successfully ignoring food right in front of the dog.  Icon had a lot of trouble with that last one.  The trainer had to take the food away because Icon was going for it.  But we'll practice and keep going.

One key thing to remember is that the dogs have all passed these tests before.  This is a test of our ability to handle the dog, not the dog's ability to do the work.

We finished up by picking up a new dog bed at Costco, which Icon quite seems to like.  We were planning to go out to play fetch with his Kong, but he came into the hotel and crashed.  This is a long and tiring week for all of us.

All day, I've found myself being overwhelmed by the reality that Icon will be coming home with us.  This is no longer an abstract dog, but a real one.  One with his own personality and abilities.  I'm hoping we can make this all work where Alex is happy, Icon is happy and the two of them can be friends and partners.  I'm hoping that I'll be able to cope with the extra responsibility.  I'm hoping that I don't mess this all up.

Dave and I have been dividing the responsibilities.  He does the morning feeding and relief, I do the evening feed and relief.  This will match how the routine usually goes, since I'm the one who gets the boys ready in the morning (leaving Dave free to concentrate on the dog) and Dave deals with his chores in the evening. 

The trainers have been emphasizing how important it is to have Alex be involved with the dog as much as possible and Nathan as little as possible.  We're going to have to do some serious thinking.  And see about getting Neelix as soon as possible for Nathan.

Service Dog Training: Day 1 (and a half): Welcome

Welcome to the newest member of our family: Icon!

Icon is a black Lab-Bernese Mountain Dog mix who is two years old.  He's relatively laid back and calm, which should work very well for Alex. 

The families all went to dinner tonight to practice dealing with our dogs in public.  Icon and his litter mate, Halo, had a nice cuddle and curl up session under the table while we all ate.

It's a learning adjustment, but we're ready for it (mostly).  We'll figure it all out together.

Service Dog Training: Day 1

Today was the first day of training, where we worked with all six dogs in the graduating class.  All looked to be labs of some variety (easing one of my worries about grooming issues with a long haired retriever).

I was really nervous as we waited for training to start.  I couldn't concentrate to read, so I ended up flipping madly through TV (irritating Dave to no end).  I was certain that I was going to mess everything up to the point where the trainers would decide they could never trust us with a dog.

But then we actually got started and it (of course) went much better than I feared.  They had us practice the sit, stay, down, come and forward commands with all the dogs.

At first we practiced in a small room, with the trainers providing distractions.  Dave and I both did pretty well, if I dare say so myself.  We got a few minor corrections from the trainers but overall seemed to be able to get our dogs to do what was needed.

The trainers reminded us that the dogs know the commands which we are giving them.  The dogs have proved they can do it.  Now it's the parents' turn.  And, in a pattern familiar to those dealing with autism, the dogs will test the boundaries with new handlers to see how strict the rules will be.

After we graduated from the room, we took the dogs outside and then through a mall.  We learned how to correct a persistently lagging or forward-surging dog: by doing unexpected course changes, forcing the dog to pay attention.  We practiced the command structure: dog's name, command, praise (if followed), correction (if not). 

As I write this, we're waiting for the trainers to come and let us know which specific dog we've been assigned.  It's nerve-wracking, but less anxious-upsetting than this morning.  More like waiting for Christmas.

They provided a bag of supplies, including grooming tools, food and water bowls and leash extensions.  They really have thought of everything.

Tomorrow, I'll let you know who's the newest member of the family.