Friday, 31 March 2017

Thinking Through Fog and Final Prep

As much as I would like to believe otherwise, it's clear that last week's surgery has taken a real toll on me.  I'm still easily exhausted and I still feel as if I'm thinking through fog.  I'm easily forgetting and overlooking things, which means I'm spending a lot of time double checking stuff.

This is making preparing for the training and dog's arrival into more of a challenge than I'd initially anticipated.  As much as I would like to have everything seamlessly set up, it's not going to happen.

But that's life and I just have to keep reminding myself that it's not like I'm slacking off because of an inherent selfishness or character flaw.  I'm doing the best I can and the world is just going to have to accept that it's not up to my usual standards.

I will be posting next week about the dog training.  Hopefully it all goes well.

Thursday, 30 March 2017

To Toy or Not To Toy

With only a few days left, we're putting together a list of things which we want to bring with us to parent training for the service dog.  The people at NSD have said not to buy or bring anything, that they will provide what we need, but we're also going to be responsible for the dog starting Sunday evening.  There are a few things that I want on hand because I don't want to be improvising:

- a towel which we've been using in Alex's bed, so that the dog will have something that smells of him
- a shallow container for water
- plastic bags for waste disposal

There are other things which I know I want the dog to have, but will wait.  For example: a dog bed.  By defining the place where the dog sleeps, that will make it easier to transition to Alex's room when it's appropriate, not to mention providing something consistent during travel.  I'd like to have it right away so that we can start consistently but I'm trusting NSD's process on this.

But the big one I'm having trouble resisting is getting the dog a toy.

In the documentary, Paws for Autism, the families getting the dogs have a toy ready to go on leash day.  It seems like a nice welcoming gesture, a way to show the dog that the family cares and an opportunity for some positive pairing.  But NSD has specifically asked us not to purchase a toy.  Each dog has a preferred reward-toy and getting the wrong one could cause problems.

So I am resisting the urge to get a Kong, or a tug of rope.  I have done some research about local parks near the hotel so that we can take the dog for a walk that first night and first morning.  (Unfortunately, it looks like we'll have to drive to get to them but maybe NSD will have more specific suggestions.)

It's hard to believe it's nearly here.  In four more days, we're going to be responsible for yet another member of the family.  

Wednesday, 29 March 2017

Truthiness and Autism (Theory of Mind)

We're in a bit of delicate situation with Alex right now, in regards to toileting.  In order for him to have a "success", we need to see the results.  Yesterday, he flushed before letting us know that he'd done a BM in the toilet, so unfortunately, it doesn't count.

The reasoning behind this is complicated.  Alex doesn't lie (or at least, not very well).  We're not sure if he's got the theory of mind to understand that we don't know everything that he knows (ie, that deception is possible).  

However, that does not mean that he can't be mistaken.  He's often announced "You did a poo" when there was nothing in the toilet or something which dropped out of his underwear.  The statement might be eagerness to claim the rewards and evidence that he doesn't quite understand the whole toileting concept either.  He might not understand the difference between a fart and actual production, for example.

In order for his toileting skills to progress, we need to make sure that every reward is given only to qualifying production.  One or two sketchy choices could undermine the painstaking progress up to this point.

This illustrates how differently Alex's mind works from the rest of ours.  If he is still in the universal knowledge stage of mental development, then he can't understand that myself, Dave and Nathan (or anyone else) is actually a separate person with limited perception.  He would get frustrated when we don't automatically understand what he wants (which we've seen some signs of) and the verbal dance we make him go through "I want please" would be a useless, empty step.

When a mind is in universal knowledge mode, teaching is difficult.  How can any information be coming in from outside?  There is no outside.  This may explain why the most successful method for teaching Alex is to break things down into very small steps and then give him opportunities to successfully do those steps.  Then those small successes can be put together into new skills.

I see a lot of assumptions that everyone with autism is effectively neurotypical, just with a blocking layer of perception and behaviour.  And for some children, this may be true.  But for others, we are dealing with a fundamentally different way of perceiving and understanding the world around them.  We can't assume they're desperately trying to communicate through the blockage or that if we could simply find a way around the blockage, everything would be fine.  Rather, we have to find a way to bridge the gap and understand that it could be a lifelong effort at connection, all from our end.

Tuesday, 28 March 2017

Back to Work - Prep, prep, prep

As much as I'd like to take some extended time off, duty calls and I need to get back to it.  Yesterday, I went back to work and although it wore me out, I managed to get a fair bit accomplished.

The biggest thing right now is preparing everything for while Dave and I are away doing the service dog training.  My parents will be taking care of Nathan and Alex but there's a lot of things that Dave and I do automatically, that we'll need to make sure to tell them about.

Yesterday was Alex's first Ausome Dance lesson.  It went reasonably well.  The timing isn't great, since between travel and the lesson itself, it stretches well over dinner hour.  And it also conflicts with Nathan's Cub meeting.  They each have one activity per week, and so of course there had to be a schedule conflict.

Last night I took Nathan to his Cub meeting, where he earned his knife permit and I managed not to topple over in exhaustion.  Dave took Alex to dance and tried to keep him from getting obsessed over the elevator.  Luckily the dance classes are only for a few weeks, so we should be able to make it work.

Before my surgery, I did some investigating into getting plane tickets for Calgary.  The service dog doesn't need a ticket, and will be able to come with us in the cabin.  The bad news?  There's no way to have the tickets refundable if it's determined that the dog isn't ready to travel.  

If we wait until we know we can proceed, we may not be able to get a flight.  If we buy in advance, Dave and Alex may end up having to stay home and we'll still be paying for the cost of the tickets.  We're going to talk to the dog trainers next week and see if we can get some idea of what the criteria are, which could give us some idea of whether or not we have a chance of meeting it.

Dave still wants to just cancel the trip entirely, which isn't a surprise, given that he doesn't like travel to begin with.  I'm exhausted and wondering if maybe we should.  We'd end up eating the cost of the hotel, which has already been booked and paid for, but maybe someone else would want to use it.  I'm holding off making a decision, since I know I'm not emotionally in the best place, but it's going to have to be decided soon.

Friday, 24 March 2017

Disappointment and Needing A Break

As many of you know, yesterday I had surgery to deal with an ongoing issue that has been a challenge for the last few years.  Much to our disappointment, it was not a success.

I'm resting reasonably comfortably (thanks to the post-surgery medication) but I'm having a hard time with realizing that nothing has been solved and there is a chance it could be worse now.

I need to take some time to process, so I'm probably not going to be posting for the next little while.  I'm also not up to talking about it.  I need some time to wrap my own head around it before sharing details with anyone else.

Thursday, 23 March 2017

More Dog-Related Learning Curves

I've been reading the training manual from National Service Dogs and it's fairly comprehensive.  I think it'll be a good reference for us.

Some of the information surprised me.  Like how only 40 % of service dogs end up going into the school with the child.  And how many families decide their child doesn't need a service dog when the first one is due to retire.  NSD also offers the option of providing a companion dog (a dog who has not passed the tests to qualify as a service dog, but who is well trained and will do well with an autistic child).  The companion dogs qualify as pets instead of service animals, meaning they can't go with the child everywhere, but still provide emotional support.

It makes me think that I'm right to believe that Dave and I were unusual in waiting to see whether or not a dog would be the right tool for Alex.  I can certainly understand other parents going on the list as a default.  It's a long wait time and it probably falls under the "couldn't hurt" point of view.

Another surprise was learning that the dogs are trained to ignore other people and animals while in jacket (aka working).  They're also trained to ignore any food that is not given to them by their handler.  I can see the latter being a necessity.  Like a child with autism, a dog can't understand the social difference between a treat from a kind stranger and a tasty tidbit being held by another person.  By keeping the boundaries clear, it reduces the chance of incidents.

There are all kinds of things to think about now and I'm still worried about being able to grasp it all enough to pass the final test.  But I keep reminding myself that this isn't a "weed out the unworthy" kind of test.  NSD wants us to pass and it's critical to make sure we've actually learned what we need to in order to have the kind of help that we want.  But I'm still pretty sure I'll have butterflies until we're on our way home from Cambridge, with a happy dog in the backseat.

Wednesday, 22 March 2017

Asking For My Money

Last year, I signed Alex up for a free sports program aimed at children with autism.  It wasn't a great set up, with classes running only for 5 weeks and a limited selection of choices, but I thought it was a good idea to start getting him back into a regular activity.

As soon as I signed up, I began receiving regular emails asking for donations to support the program.

To a point, I can understand that.  Someone has to pay for the programs, and if the cost isn't done up front for the families, then it must be coming in through donations or government grants.  But it began feeling like harassment, especially since they only offer a few 5 week programs each year and they were sending out emails every week or two.

This year, they added a new selection to their program, one I thought would be well suited for Alex.  I signed him up and got a surprise.  In order to sign up for the program, I had to pay a $ 25 annual membership fee.

Okay, again, I frankly would prefer to pay a fee rather than get constantly harassed for donations.

But now I've just been hit with another email asking for a "suggested donation" of $ 15 for every child attending the program.

Now I'm more than a little irritated.  $ 40 for a program being advertised as free (and which the group is really pushing as the wonderful thing they're doing for autism families) and which will last only 5 weeks.  If it is the same as the last one, more of a "drop your kids off and we'll effectively babysit them for an hour" rather than an actual class, this will be our last venture into this program.

Don't bullshit the public about the service you're offering and then come back and charge the families.  Be up front about your costs and include them all at once rather than in dribbles.

Tuesday, 21 March 2017

New Teacher for Alex

Over the March Break, Alex's teacher had to go on early maternity leave.  So now he has a new teacher, which is frankly leaving Dave and I more than a little nervous.

Obviously it's not anything that anyone can control, but the timing is particularly bad.  We just managed to get the school on board about the head-banging and now we have someone new.  With less than two weeks of everyone agreeing that ignoring the head-banging is best, we now could be back at square one, having to explain what "ignore" actually means and deal with inadvertent reinforcement.

Add into that, Alex is going to be in recovery mode from the trip and now he has a new person whose boundaries he's going to test.  That means an increase in problem behaviours regardless of other factors.

And for even more stress, the dog will be arriving just as the initial bubbles of behaviour spikes will be starting to go down.  Adding a new complication.

Alex just can't seem to catch a break this year.  From the other family who held onto their spot and messed up the start of his year by forcing a switch in the first week, to the driver and her unjustified restraints, to the inconsistent expectations in the first few months, it's all been a lot for him to deal with so far.  And for us to deal with, too.

It's incredibly frustrating to continually get hit by these things which are out of our control.  We are doing our best to be pro-active, we're working with everyone and still, it's not enough.  Alex has had huge backslides in toileting and behaviour from this time last year.

I know that most of this hasn't been malicious (with the exception of the driver and possibly the family who insisted on holding two school spots for over 6 months), but it sure feels targeted.

Monday, 20 March 2017

Roadtrip Experiment: Day 7 (Conclusion)

The second day of driving home went reasonably well.  The kids actually did better than they did on the second day of driving down.  We went through the border with no fuss, there were no weather or traffic delays and we were home for dinner.

The point of this driving holiday was to decide whether or not a driving trip to Calgary this summer would be a feasible option.

As much as I would like to take the boys cross-country and give them a chance to really see Canada, I don't think a road-trip this summer is going to work.  Alex's behaviour is too fragile right now.  If we were doing this a year ago, when his toilet-training was doing well and his behaviour was under control, then it might have been an option.  Also, I have to consider adding in the service dog, which is still a big unknown.

Dave has been pushing to scrap the Calgary trip entirely.  We had already booked the hotel, which was non-refundable, so we'll likely have to eat that expense if we do.  I still want to go and take the whole family, but after seven days of fighting reluctant family members and their dislike of anything resembling change, I'm worn out and wondering if I'm really up to doing it again.  On the other hand, it is only by building up experience with such things that I can give my kids a chance at becoming something other than complete hermits.

I've learned several important things in terms of planning the as-yet-unscheduled future roadtrip:

2-3 hours is the ideal driving shift

Giving the kids one half hour of screen time during each shift seems to work well (provided they have to earn it by behaving)

Dave is less cranky if forced to share the driving

BBC narrated audiobooks are annoying

Audiobooks in general are less likely to provoke tantrums from Alex, but aren't enough to keep me engaged while driving (though they work better than music when caught in a traffic jam)

Nathan is a good car karaoke partner

Having a "travel bag" containing what we need during transit worked really well, letting us leave the bulk of the luggage in the car

Getting a cot for Alex makes everyone sleep better

The kids need a defined, non-optional activity during each day (because they will refuse if given a choice, despite the fact that it makes them bored and cranky)

Saturday, 18 March 2017

Roadtrip Experiment: Day 6 (With More Photos)

Having spent 3 days in Atlanta, it was time to get back on the road.  Alex was exceptionally good, probably because this was the day he'd been asking about for over two years: a chance to see the Market Parking Garage in Roanoke, Virginia.

For those who don't know, there is a whole section of YouTube dedicated to elevator videos (by which I mean videos of people riding in elevators).  Alex's favourites are by DieselDucy, who has posted multiple videos of the Roanoke Market Parking Garage elevators.

Due to some traffic blockages (a brush fire and a truck accident), we didn't arrive in Roanoke until almost 4, despite having started our day at 6 am.  It was actually a fairly tense time for Dave and I.  We'd worried about the timing and had made sure that we had an extra day built in for travel just in case we got to Roanoke and the garage was closed for the day.

We also wondered if the elevator would live up to the hype in Alex's mind.  He's been nagging us non-stop for two years about this elevator.  Would he be let down by the experience?

Easy answer: no.  The only other time I have seen him this delighted and excited was when he got to meet Princess Ana and Queen Elsa at Disney.  We rode each of the two elevators twice, shooting our own video footage.  (Alex has his next elevator target in mind: the City DartRail Station elevators in Dallas, Texas.)

After the elevator, we got back on the road.  Again, the kids did better than they have for the rest of the week.  Nathan fell asleep between Roanoke and stopping for the night in Mitchburg, West Virginia.  We hit a snow squall, reminding us that we haven't quite finished with winter yet, but overall, we made excellent time, which should allow us to get back to Ottawa without having to do a late night.

The last day of driving will be the big test.  No more special stop to look forward to and six previous days of a lot of family-togetherness.  If any day is going to be full of cranky meltdowns, that will be the one.

Friday, 17 March 2017

Roadtrip Experiment Day 5 (With Photos)

Today went much better than yesterday.  We had breakfast and then headed out to the zoo.

 The kids were initially cranky but turned it around when we heard the lions roaring.  We headed over and one of the lions walked up to the glass to have a staring contest with Nathan.

A fair number of the animals weren't on display due to the unseasonable cold (you know, only 10 degrees, so frigid for Atlanta) but the ones who were out tended to be fairly active.

The highlight for Nathan was a two level climbing structure called Sky Trail.  He was very adamant about wanting to do it on his own.

There were a few times where his tether got stuck but he figured out how to get it loose without panicking or getting upset.  I was very proud of him.

Unfortunately, Alex could not go on it, which made him quite cranky.  I ended up taking him aside and getting him some cotton candy while Nathan did another round of the equipment.

 We finished the day with a ride on the Zoo train. 

After the zoo, we stopped by a grocery store to pick up road snacks and then had a quiet rest of the day.  Both boys are still having a lot of problems with complaining and sulking.  Maybe it's being together all day for five days in a row, or maybe not enough sleep or the number of new experiences.  But they are definitely crankier than normal.

I'm looking forward to heading home.

Thursday, 16 March 2017

Roadtrip Experiment Day 4

Today was rough.  It turns out that southern cuisine is a little heavy for me so that ended up throwing off our schedule.  Dave took the boys to breakfast and then out shopping, which apparently didn't go well.  The boys were in a bad mood and we decided to skip the movie, but that left us with an empty schedule.

Our attempts at lunch didn't go much better, with repeated delays meaning we didn't eat until almost 2:30.  Then Dave took the boys swimming, which again, didn't go well.

We pulled it together for the end of the day but it was a long and difficult one.

Hopefully tomorrow goes better at the zoo.

Wednesday, 15 March 2017

Roadtrip Experiment Day 3

Today was actually harder than either of the days in the car.  Alex was very oppositional.  Lots of verbal protests and complaining, which in turn means he doesn't earn privileges, which makes him more irritable.

I took the boys swimming this morning and he wouldn't leave Nathan alone.  So I gave him a time out and he would not settle.  Eventually I had to call swimming short and bring both boys back up to the hotel room.  Which ended up putting everyone in a rough mood.

We decided to have an interlude before trying to go to the aquarium so that we could regain a good mood.

We went to Target and picked up some new clothes for the boys (Nathan needed pants and Alex needed some under things).  We also got some toys and a plug in LED lamp for the hotel bathroom.  (The light and the fan are linked, so Alex can't tolerate having the light on.)

Then we had some lunch at Subway before heading to the aquarium.  The plan worked and the kids were in a good mood.  We saw the giant exhibit with the whale sharks and manta rays, and the arctic exhibit with otters and beluga whales.  We also saw a dolphin show.  It was a great experience.

After the aquarium, we went back to the hotel for some quiet time before supper at the Cheesecake Factory (apparently not just a fake restaurant for the Big Bang).  We're a little worried about Alex.  He didn't eat much lunch or dinner and he's usually got a big appetite.  But it's a new environment and new food.  We know he'll eat the breakfast at the hotel so we'll make sure it's a sustaining one.  It might also help that he had a successful toileting, which might make him more comfortable.

Then it was back to the hotel for some TV before bed.  Hopefully tomorrow starts out a little smoother. 

Tuesday, 14 March 2017

Roadtrip Experiment Day 2

Day two finished and we managed to make it to Atlanta.

The biggest challenge for today was roadside signage.  It turns out Roanoke is a major hub, which means it appears on every roadside sign for over a hundred miles, with a new one every 2-4 miles.  Every single one a trigger for Alex and his desire to ride the elevator of the Market Parking Garage.  No matter how much we have explained and prepared him that we will be stopping on the way back, he was very upset that we didn't stop.  He started demanding that we turn around.

It was a long day of driving and the kids were definitely crankier than yesterday.  Alex only earned his screentime for one driving period and Nathan failed to earn it for most of the morning.  Alex refused to eat dinner, but was happy to chow down on croissants and cheese in the car.

We arrived later than we'd initially planned, so the hotel pool was closed.  We also discovered the hotel we'd picked via the Internet didn't have the room we wanted, so we had to improvise sleeping arrangements.  Alex got the pull out bed, and we'd suggested that Nathan sleep with Dave and I in the king-sized bed for one night.  However, Nathan was not okay with that plan.  He wanted his own bed, a challenge since there was no rollaway cot.  Instead we took the cushions from the pull out couch and made him up a bed on the floor.

Now that we can browse on a computer instead of a phone, we're going to look into alternatives for the rest of the week, but for now, we've made it okay.

Monday, 13 March 2017

Roadtrip Experiment: Day 1

Many people have said we are crazy to even try this.  They may be right but we are attempting a family road trip.  This is an experiment so we have no reservations, no plans and no expectations.  If it goes horribly, we'll abort and acknowledge that the rest of the world was right: we were crazy to even try it.

Day one has gone reasonably well.  We got up before dawn, had a hearty breakfast and got on our way.  (Having to stop at the library to drop off the books I'd meant to drop off the previous week notwithstanding.)

We arranged for 2-3 hour driving shifts to allow for frequent bathroom breaks and so that neither Dave nor I would get too exhausted.  I planned ahead, loading up both kids' iPads with their favourite movies and shows but also letting them know there would only be one half hour per shift in the car.  And that they would have to earn that shift by being cooperative for the previous shift.

We had snacks.  We had audiobooks (since Alex sometimes gets upset with music).  We had books and toys for the boys. 

We drove through four states: New York, Pennsylvania, Maryland and West Virginia.

There was crankiness and whining, which was expected.  Alex failed to earn one of his screen times but accepted it reasonably well.  The worst part came at the end of the day as we were trying to figure out a suitable hotel and a suitable place to eat.  Note to self: tomorrow, confiscate snacks an hour before supper.  The boys were tired and cranky (and despite their protests to the contrary: hungry).

I took them swimming for an hour, giving Dave a bit of a respite.  And then I pulled out my computer to catch up on some work.

Tomorrow is the big test.  We've done long days in the car but we've never done long back-to-back days.  Will the kids be able to tolerate it?  Who knows.  But even if we are crazy, I'm glad we tried.

Friday, 10 March 2017

More Tracking

For the next week, we're going to be tracking Alex's behaviours for National Service Dogs.  I'm guessing this is so that our trainer can have an opportunity to know what sort of things we and the dog need to be ready to deal with.

The training manual they sent us is actually quite interesting with a lot of detail.  The last time I had a dog in the house, I was only a kid, so I wasn't responsible for any of the maintenance and precautionary stuff.  I've been talking to friends who have dogs, so I had some general idea, but as NSD keeps reminding us, it's different with a service dog.  Like the fact that we'll have to brush the dog at least once and preferably twice a day to minimize any loose hair which could cause problems for people with allergies.

Luckily, we already have a great vet and I know of a very good dog groomer, so that's two professional assists off the checklist.  

It also looks like we're going to have a chance to meet the puppy raiser who took care of our dog for the first 18 months.  Hopefully he or she will be pleased with us.  I imagine it's a pretty hard emotional hit to take care of a dog for that long and then have to send it off to someone else's family.

Wednesday, 8 March 2017

School Improvements

Alex has been having trouble at school lately.  He's bolting to avoid demands and head-banging when frustrated.  This has especially been a problem when unfamiliar people are in the classroom.

Yesterday, the regular EAs both called in sick, so there were two substitute EAs to help the teacher.  And yet, Alex did his work and did not bolt or head-bang.

I think it helps that yesterday was a snow day, so it was just Alex and one other child in the class.  Fewer distractions and more one-on-one time.  But I also think it helps that they have a consistent set of expectations that can be quickly explained to new people coming into the classroom.

It's likely to be a rough time for Alex over the next month.  Going on our planned vacation and introducing the dog are both going to be big disruptions to our regular schedule and family equilibrium.  But we've gone through such disruptions before and we've managed to (eventually) come out the other side.

Tuesday, 7 March 2017

Working With the Dogs at NSD

As part of the information session last weekend, National Service Dogs had us practice working with some dogs in training.  I got a lovely golden retriever named Quantum.

They had us walk around several rooms, stopping in front of each doorway, telling the dog to sit and then go forward.  We had to keep several things in mind: don't lean down to talk to the dog (it's a submissive posture and not a good long-term requirement, since we want the dog to respond to our commands while standing), keep the leash loose (the dog should stay in place because of the training, not because it can't go any further), keep the dog on your right (I assume for consistency and so that it is not in the immediate path of foot or vehicle traffic which may not see the dog), and signal the dog verbally only (no hand gestures as the autism dogs are taught to ignore hand-flapping).

We had to get the dog's attention with its name, and give the command.  If the dog didn't obey on the first request, we gave it a gentle leash-pop and then repeat the command.

Quantum did very well going from sitting to moving forward.  I had his complete attention while we were sitting still.  Once we were moving, not so much, so I usually had to repeat the command to sit two or three times.  But we got it and the trainer said I was doing well for a beginner, so I'll take it.

It really brought home to me how different this is from training with a pet.  The standards are much more rigid and there's a lot more to keep in mind.  This is a working dog and it needs to held to a high standard or else places could start banning service dogs from their premises.  (One school in Waterloo is attempting to do that, although the dog is not from National Service Dogs.  The picture shows a red vest and all NSD dogs have purple vests.)

I've been going through the training manual and the first part is fairly familiar to us from working with Alex: single word instructions, commands not questions, follow up swiftly once you have his attention, be consistent, and start as you mean to go on.  Hopefully that will help. 

Monday, 6 March 2017

Service Dog Info Overload

Dave and I had the first round of training for the service dog (more of an information session) over the weekend and our brains are stuffed full.  I have eight pages of notes, a folder of documents and a 50 page training manual to read.

There were some surprises.  I spoke to the trainers about the timing of getting a kitten for Nathan and they strongly recommended not getting the kitten before the dog arrives.  If the kitten doesn't react well to the dog, that could strongly jeopardize the dog's ability to settle into our household.  Nathan is disappointed and I'm a little worried.  The crucial point for wanting the kitten is the first two to three months.  If we can't bring it in, I am worried about keeping Nathan away from the dog.  But making sure the dog adjusts well to our household is the priority.

The second surprise/disappointment was that the dog will not be able to accompany Alex to school for the first year.  They want to make sure that only the parents are handling the dog for the first year, to maintain the training and keep consistent expectations.  They also stressed that the dog and Alex need to be visibly bonded and working together (which reduces the opportunity for the school to claim that Alex doesn't "need" the dog).  And that it's critical that the school introduction go smoothly (again, to reduce the possibility of the school objecting).

At the same time, the dog needs to be with Alex as much as humanly possible.  Which means that I'm going to have to go with him on outings with his grandfather and to the cottage this summer, times that have normally been respite opportunities for me.  That is going to make this a difficult year.

And final surprise, only trained handlers are allowed to have the dog out "working" and in jacket.  Which means Dave and I, unless we can find a way for my father to be trained so that he can continue to take Alex out.  But it's not something that we can look into for the first year, so I'm trying not to worry about it too much.

The rest of the information was very helpful and encouraging.  (And even the disappointing stuff is helpful, since it helps us to adjust our expectations and plans.)  We got to work with some dogs in training, and discovered there are a lot of little things to keep in mind (I'll go  into that in more detail tomorrow).  

I still think this is the right thing to do and it's going to make a huge difference in our lives.  

Thursday, 2 March 2017

Success, followed closely by failure

Alex had his first toileting success yesterday under the new system (screentime for toilet).  Unfortunately, it was followed swiftly by an accident.  (Then two more through the rest of the evening.)

Now, this is where the balancing programs part comes in.  For a toileting success, Alex earns a half hour of screentime and he would have also been able to access his regular after school 30 minutes of screentime.  However, I could tell that he'd done an accident after about 20 minutes.

Here's the dilemma: do I interrupt his 30 minutes of earned screentime to check for an accident?  (Once I check and find one, screentime is immediately over.)  Do I allow him to have his full hour?  Do I stop him after half an hour?

I decided to give him the half hour, then check.  So we dutifully went back to the toilet and had another try at sitting.  No success, although clearly he still needed to go since we had more accidents through the evening.

For the reward to be successful, it has to be desired and applied consistently.  Giving him his half hour gave him a taste of screentime and will hopefully encourage him to try again.  (The concern is that taking it away could discourage him, but that's not how it's worked in the past.)

Wednesday, 1 March 2017

Meeting with the School

We met with Alex's school to discuss head-banging, bolting and the dog.

I brought along the big guns, our behaviour consultant and Alex's head therapist.  And I'm glad I did.  As much as I've been telling them that the safest thing for Alex is to ignore the headbanging, the school is always going to be skeptical of my opinion.  I'm a parent and can't be trusted to be objective or accurate.

I understand their concerns.  It's disturbing to watch Alex bang his head and visions of lawsuits immediately start floating through people's heads.  But we pointed out a few things to them:

- The way Alex bangs his head is actually quite controlled and unlikely to cause concussive harm.  Some bruises, maybe some cuts, but not a concussion since he is tightly controlling his neck and movement.  It's not a whole body bang.

- We have demonstrated success across multiple setting and with multiple people for the ignoring it protocol.

- If Alex is prevented from banging his head (with a helmet or other interventions), we have historical records that show that the interventions increase the frequency and strength of the hit.

- Given that the head-banging gives him a sensory boost, it will never be completely eliminated.  The goal is to keep it from increasing and becoming habitual.

They listened to us and agreed to continue with ignoring the head-banging rather than forcing Alex to wear a helmet full time.

For bolting, we suggested more frequent and consistent rewards during non-preferred activities.  The rewards can be scaled down as necessary once the behaviour is under control.

Then we came to the dog, which may be more of a sticking point than I'd hoped.  The school board is drafting new policies when it comes to service animals.  I'm really hoping that they understand this is not a pet but rather a therapeutic tool to help Alex cope.  They've asked for several documents from National Service Dogs, who have replied that they cannot provide said documents until after a dog is assigned.  It's going to be a difficult process.

But one fight at a time.  It looks like we've won the helmet battle (at least for now).  So I'll take that.