Time to change up Toileting (Again)

Alex has not been doing well with toileting recently.  We've had a lot of accidents and not a lot of successes in the toilet.  Considering that during the summer, he was racking up 10-12 successes within a 3 week period and it's now taken him over two months to achieve 6 successes, it's a pretty clear indicator that our rewards are no longer motivating.

So we're going to tie toileting to a reward which is consistently motivating: screen time.

If he is successful in the toilet, he can earn screen time. (He still needs to be cooperative.)

If he has an accident in his pants, he can't earn screen time.

Since he also tends to go 2-3 days between productions, we're not going to insist on a daily success.  Rather, his last success (or failure) will determine whether or not screen time is on the table.

It's a drastic step but I think we need to do it.

I Have A Dream

For a long time, I haven't been able to listen to "I Have A Dream" by ABBA.

Eleven years ago, I was helping a friend to paint her new house.  Alex was staying with his grandparents, but we took what we expected to be an hour break to take him to an appointment at CHEO, to meet with a doctor to discuss how to deal with his speech delay.

What I expected to be a fifteen minute initial consultation turned out to actually be a two and a half hour evaluation where the doctor told me that my child had autism and it was critical that I find treatment as soon as possible but they couldn't tell me which treatments might be helpful and couldn't recommend any providers and not to count on the publicly funded system because it would be years before Alex would be seen.

Lot of big shocks.  After the evaluation, I got back in my car to finish house-painting and as I was driving across the city, ABBA's "I Have A Dream" began to play.

I had always loved that song because I also believed that imagination and dreams could pull anyone through the worst life had to offer.  But that day, I couldn't listen to the lyrics without feeling like they were all big, ugly lies.  What good is a "fantasy to help me through reality" when being faced with such a horrible reality?  What fantasy could possibly help?  The fantasy that my son might not need significant help throughout his life?

It probably didn't help that we had discovered I was pregnant only a few days before, so I was probably also deal with a hormone surge.  But for the first time in my life, I wasn't ready to step up to deal with a crisis.  I felt as if the universe had yanked the bedrock out from under my feet and I was free-falling with no idea of where or when (or even if) I would land.

For a long time, every time I heard that song, I was transported back to those ugly feelings of despair.  So I took it off my playlist and tried to avoid the classic pop stations.

But in the last year, Alex has discovered a new love of ABBA, including "I Have A Dream."  Slowly, the song's memories have been replaced.

Nothing will ever change the shock and despair I felt that day.  I was completely unprepared and felt pushed aside by the professionals who should have helped me.  But I've reclaimed a little piece of my life before that day.  And for now, I'll take that and enjoy having a dream again.

Summer Camp planning

I don't think we've ever had our summer plans so in flux as we do for this year.

Adding the dog into the mix will make a big change but with National Service Dogs saying that we shouldn't plan any trips for the first 4-6 months, that puts a lot of plans into uncertain territory.

For example, every year my parents take Alex and Nathan to a cottage for a week or two.  Will this count as a trip?  If it does, would Alex go on his own without the dog or is it more important for Alex and the dog to stay together?  All questions we're looking forward to getting answers to at the information session.

The next big question is our planned trip to Calgary.  If Alex cannot come, then Nathan and I will be going alone.  But if Alex is home, then he should have some activity, like the summer camp that the school board offers.  But we have to apply for that before we know whether or not it will be okay for Alex and the dog to come along to Calgary.

It's a lot of uncertainty.  But I just have to remind myself that it will all work out in the end.

Financial Disappointment

In going over our various investments for last year in preparation of tax season, I noticed something odd.  The grant money which we should have received for Alex's RDSP for 2016 never arrived.

It took me two days of navigating various telephone menus until I finally reached someone who could tell me what was going on.  It turns out that Alex's grant application was rejected by the federal government because my SIN was still under my maiden name instead of my married one.

This rejection happened in 2015 and no one bothered to tell us about it.

A very simple clerical error, one fixable in seconds, and we've lost a year of grant money and all of the interest it would have accrued over Alex's lifetime.

Not impressed at all.

A Weekend Break

The boys' grandparents recently came back from a trip to Hawaii and the first thing they wanted was a weekend with their grandchildren.  So Dave and I got two nights on our own, as well as some Hawaiian shirts.  (Regular t-shirts purchased in Hawaii as opposed to the floral print things.)

As soon as we walked back in the door after dropping them off, Dave turned to me and said: is it weird that I miss them already?

Nope, that's what parents are supposed to feel.  The real question is: does it make me a bad parent because I desperately need this break?

And the answer to that one is no, too.  

Raising kids is hard under the best of circumstances.  And as much as I love my boys, they do not constitute the best of circumstances.  It's been an incredibly difficult slog, pretty much since September.  We've been hit with multiple challenges above and beyond the usual.  We've had major regressions in behaviour and toileting.  And we've had fewer opportunities for respite because we've been desperately trying to maintain consistency.

We needed the break.  If it was possible to do so without triggering a crisis, I'd say we still need a much longer break.  Like a week or two without responsibilities.  But that's not going to happen.  So I'll take my weekend of respite and try to savour it as I plunge back into what has become my regular life again.

Nathan Ski Day

Today, Nathan had to leave early for school because his class is going for a ski day.

I've gotten used to him going on field trips without me, but this one has me worried.  It's going to be a long day with a big disruption in his schedule, which means a greater chance of him hitting a wall where he can't cope. 

I don't ski, so my usefulness on the trip would have been less than nothing.  But I'm hoping that if things aren't going well for him, that he'll be able to find someone to help him calm down and work it out.

Best case scenario, he has a great day outdoors on a not-terribly cold day enjoying the half a metre of fresh snow that we got over the last three days.

Worst case scenario, multiple meltdowns confronted by people who don't understand and make the problem worse, alienating his peers and causing him to retreat and sulk all day.

Reality will probably be somewhere in the middle, but that's not going to stop me from nervously chewing my nails through most of today.

Zamboni Dreams Realized (With Photos)

Last night, the family went to a Sens game and we got VIP treatment.  Our tickets were waiting at the Concierge desk, where the staff congratulated both boys on what would be a special night.

Alex and Nathan got to be in the high 5 corridor and give the Sens' players a high five as they went onto the ice for the pre-game warm-up.  Nathan looked a little uncertain but told me he had fun.  Alex was more interested in trying to high five the people on the other side of the aisle.

Then we went up to our seats in the 300 level, stopping for popcorn and cotton candy.

Note for next time: make sure we have wipes or a wet cloth when Alex gets cotton candy.  His hands and face were encased in blue sugar.

And finally, the big moment, Nathan got to ride the Zamboni for the first intermission.  He waved to the crowd, appeared on the Jumbotron and was very excited.  (A change from Alex's trip where he had his hands firmly clamped over his ears the entire time.)

We left after first intermission but did a quick stop at the Sens fan zone for another picture or two.  Go Sens Go!

Can't Move Forward

Alex's difficulties at school have been spilling over to home, which means that we're having to spend time dealing with things that we thought we'd extinguished (bolting and head-banging).  Button pushing and complaining are also way up.

I was hoping that we'd be able to start tackling new challenges, such as nose picking and tidying up after himself, but for now, it's taking everything we have to not slip back too far.

We have a meeting with the school in 2 weeks.  I'm hoping that we can start getting things settled.  There are a lot of big changes coming soon, and I'm frankly worried about Alex's ability to cope with them if he doesn't have a solid foundation.

Sooner or Later?

Timing tradeoffs play a big role in just about any decision for a family with autism.  When you first suspect something is wrong, do you go with whoever is first available for an assessment?  Do you wait for a preferred psychologist with acknowledged expertise?  Or do you wait for the publicly-funded assessment services?

There are trade offs with each decision.  The first psychologist available may not be as familiar with children with autism and thus may not be able to do an accurate diagnosis and recommendations.  Waiting for a preferred expert could delay things months and be more expensive.  Waiting for the publicly-funded option could take years.

Parents hear a lot about how waiting is bad and you need to rush, rush, rush to get on the different waitlists.  Any day you delay could critically impact your child's development. 

But going to the wrong person can waste time, money and further delay parents' efforts.

We've been deciding the timing of a school meeting.  Our behaviour consultant can't attend for the next two weeks.  But Alex has been having difficulty for a long time now.  Part of me is reluctant to wait but I also have to remember that the meeting will be more productive if our consultant can be present.

After nearly six months in the classroom, another two weeks is not a critical gap.  But it is true that each day adds its own inertia to the problem, adding recovery time once the right program is in place.  This is the part each parent has to decide for themselves: where is the line?  When does the accumulation of days become critical?

I've described it as the metaphor of a handful of sand on the floor.  Each day without identification and treatment is the equivalent of a handful of sand dumped on the floor.  Depending on the size of the floor, it might not be immediately noticeable, but it will accumulate.  Give it enough time, and those handfuls will create a sand dune which will defy any attempts at sweeping or vacuuming.  But each day is still only one handful.

Dog To-Do List

We've gotten an email from NSD about what we can do in this preparation period.

1) Plan ahead.  Service dogs have a lot of guidelines in place when they are out of jacket and families will have to adjust some things in their household in order to accommodate.

That, we expected.  For the dog to be effective, the training has to be maintained.  So we've got to step up and make sure that we're doing what's necessary and not reinforcing undesired behaviour.

2) Get your child used to wearing a belt.

I hadn't thought of this one, but it makes sense.  The anti-bolting training requires the dog to be attached to a belt around the child.  Since Alex is a bolter, this is something we'll need to work on.  I'll be picking up some belts ASAP.

3) Plan for when to walk your service dog (30 minutes, twice a day).

We'd done some thinking on when to incorporate walks into our routine.  First thing in the morning, before Alex leaves for school.  (Although this will mean getting up earlier.)  And after school, with Alex.  That way, we're having the minimal amount of walks in the cold and dark (for winter weather).  Not to mention, we're more likely to have plans after supper, so this way the walk is not likely to be disrupted.  And if necessary, we can always add an evening walk.  (I don't think there's such a thing as too much walking for a dog.)

4) Be aware the service dog is for the designated child, not siblings.

That message we have received loud and clear.  Nathan knows that the dog is working for Alex and is not a family pet.  We're working on a transition plan for him.

5) Do not buy toys for your service dog. NSD will provide what is necessary and there will be an opportunity to purchase appropriate toys during training.

Again, this makes sense.  If the trainers can give us our dog's favourite toy, that will help the transition.  And there are a lot of inappropriate toys on the market.  This keeps down enthusiastic errors.

6) Do not get other pets until you've had a chance to talk with the trainer.  If you have cats, doggy proof your home by getting them used to having their food bowls off the floor.

I guess even a service dog can't be expected to resist a ground level bowl of cat food.  We have been talking about getting another cat for Nathan to focus on, but always planned to speak with the trainers about the best way to integrate.  I'm assuming that one of the selection criteria for our dog is tolerance for cats (since we already have Ceili) so hopefully adding a second won't cause too many problems.  

7) Don't plan parties right after Team Training for several weeks.

The dog and the whole family will need time to get used to each other.  It's best if that happens during as regular a routine as possible.  I would like to do a bit of a Victory Tour and take Alex and the dog round to all the places who helped us with fundraisers, but it can wait until we've all settled.

8) Don't plan to take the service dog on long distance travel for the first 4-6 months.

This is a little trickier as we've been planning our summer trip to Calgary for over a year.  We'll talk it over with the trainers.  The trip would be 3 months after the dog arrives.  Would it be easier if we drove?  Flew?  All questions to ask and things to work on.

Working Together

I've said it many times before but consistency is important and so is understanding the principles of behaviour reinforcement, when working with kids with autism.

Alex has been having problems at school.  Nothing huge as yet, but head-banging and aggression have both made a reappearance.  His level of cooperation has dropped and there's been an increase in whining.  This has spilled over onto home as well.

Part of the problem (as we understand it), is that the expectations have not been consistent and there's been some inadvertent reinforcement of undesired behaviour.  This does happen, particularly if staff are not used to dealing with kids with autism.  (A lot of what is necessary is counter-intuitive, so I get that it takes awhile to retrain the brain to think in autism-mode.)  

But part of the challenge is that there are other things which can be pointed to as causes: disruptions of schedule, temporary staff due to illness, a rough night on Alex's part.  All the little stresses that make up everyday life because there's no way to have everything completely predictable.  There has been some disagreement about what the true cause of Alex's discomfort is.

My position is that if things were more consistent and the right things were being reinforced, then Alex would have more resiliency to deal with the slings and arrows of outrageous fortune.  But I have to be cautious and not assume that I know what's going on in the classroom day to day.  (I can suspect based on what I've been told by the teacher, but cannot know because I'm not there to observe it.)

It's a hard balance because I don't want to be difficult and sour the relationship, but from experience, I also know that this could be the beginning of a long slide and the longer I let it go, the harder it's going to be to get back to where we should be.  And it won't just be school behaviour, we'll have to suffer through it at home as well.

So I'll continue to offer support and help as possible.  I'll continue to delicately push for more knowledge and try to keep an open mind.

And... back to work

The excitement of getting the date for the dog has definitely made for a giddy weekend.  Dave had to stop me from going to the pet store and immediately picking up supplies.  He's suggested we wait until we go to the information session in March and find out what kind of supplies NSD recommends we get.  Logical, yet not the immediate gratification I was looking for.

It feels a little like preparing for a new baby.  There's a certain amount of "don't jinx it by doing too much in advance" going on.

In other news, we've finally been getting renewed toileting success with Alex.  He had not had a successful BM in the toilet for almost a month and we got two successes in the last week.  We adjusted his toileting routine so that now he only gets the iPad for the sit before bedtime.  The rest of the time, he gets a gummy for successful sitting.  But he can earn more screen time with a success.

We also took away the Senekot laxative.  It's a muscle stimulant that we began to try and encourage daily production but it didn't seem to be very effective.  Since he's actually producing more regularly now that we've removed it, it may have been counterproductive.

It's feeling like a pretty good start to February.  Hopefully we can keep it up.  

WE GOT THE DOG!!

Three years ago, we applied for Alex to get a service dog through National Service Dogs.  Three years of waiting and fundraising, of wondering and more waiting, and now we've gotten the call to participate in parent training this spring.

It's still not a guarantee.  The parent training is the final hurdle and if NSD decides that we're not suited to having a dog, then we will be done.  But as none of us are psychopaths and we've done some extensive preparation work, I'm fairly confident we'll be approved, which means that Alex will have his service dog before his next birthday.

It's a big game changer for the family.  We've talked about the preparations which need to be made.  We need a larger car to accommodate both kids and the dog in the backseat.  We need to buy the supplies for the dog (leash, food, carrier (not sure about this last one)).  We need to talk to the school and the transport company to make sure there are no problems with the transition.  I also need to find out how this would affect our planned trip to Calgary this summer (if we fly, would the dog fly with Alex in the cabin?  Or be crated?  Do we have to buy the dog a seat?).

Lots of questions, lots of things to find out.  But the waiting and uncertainty is over.  Now we can finally move ahead. 

Nathan's Continuing Conversational Obsession With Cats

Nathan likes cats.  He likes talking about cats.  He likes making cat noises.  He likes asking what the cat is thinking about various things, like world politics and the latest Marvel release.  

It can make for a rather monotonous conversational exchange.

I understand that making conversation can be difficult for those on the autism spectrum and many books recommend having two or three socially acceptable fall-back conversation starters.  But at the same time, there also needs to be a balance with not hijacking every conversation and turning it back to the cat.

We've been using a token system to encourage Nathan to broaden his conversational horizons.  3 tokens per day (usually done by dinner) with one mention of the cat per token.  And the dinner table is a cat-free discussion zone.  

I'm not sure if it's working or not.  Nathan thinks talking about the cat is funny and adding the cat into a conversation is funny (and it probably is to people who haven't been talking about it for the last four years).  He likes being funny and it's easier than actually following the conversation.  But it's not always socially appropriate and, long-term, it's hard to be consistently funny as a social prop.

Still, he is making an effort and I don't want to discourage him from that.  Even if I'm relatively tired of discussing why the cat thinks Hulk would beat Spider-man in a fight.  (Everyone knows Spider-man would win that one.)  

Timing Challenge

Tomorrow Alex has a dentist appointment.  I'll have to pick him up at lunch time.

Unfortunately, lunchtime is right in the middle of his weekly swimming that day.  If I pick him up before swimming, then he'll be at school for less than two hours.  The teacher has suggested that I meet them at the pool and get Alex before swimming starts, but I'm worried that will only set up a tantrum since he loves swimming and even the elevators at the dentist might not be enough to offset that.

The other challenge is that I've got my own appointment that morning, one that I can't bring Alex along to.  

I'm going to be calling our aides to see if one of them can babysit Alex for the morning at home but most of them work during the day, so I'm not optimistic.  Dave has his own meeting across town at work, one that can't be postponed, so he can't take care of Alex.

This is going to be more difficult that usual.  Fingers crossed on getting it right.