Monday 31 October 2016

Happy Halloween (Photos)

Another Halloween of fun and whimsy (and lots of work).

Nathan, little Whovian that he is, wanted to be the 11th doctor from Doctor Who.  I made him his jacket, bow tie and fez.

Alex reprised his role as Super Grover 2.0.  I had to make new gloves, a new sash and a new belt.  Luckily the muppet costume, the cape and the hat still worked.

We turned our front door into a TARDIS.  Which ended up being quite the crowd pleaser.  We actually got a few walk-ups during the day from people asking to take pictures.

We added a Dalek pumpkin to the mix.  That was honestly the most challenging part.  I used a toy wand for the optic rod, a glowstick for the firing arm and made my own (sort of) to scale plunger for the sensor.  Then we put it on a stool and wrapped the stool in bristol board, with circles covered with tissue paper.  With a light inside, it glowed and looked rather cool.

We finished off with pepper lanterns done as Cybermen.

Dave added his own touch with rotating disco lights, another popular choice.

The boys didn't do a lot of trick or treating.  Alex gave up after 20 minutes and Nathan did another 5-10 minutes after that.  Alex refused most of the treats being offered, which led to confusion from those handing out, and in a few cases, offense.  I got into an argument with my mother about whether or not Alex should be encouraged to simply politely accept the candy.  Given that most people don't recognize that he has autism, his "No" sounds more like a personal rejection.  This is one of those grey areas for autism behaviour.  On the one hand, he is expressing his preference (he doesn't like candy or chips) but on the other, he's violating the social expectation of the evening.  Since no one was expecting him to eat the candy, I felt that encouraging him to participate was the path of least resistance and most social acceptance but I got quite a strong resistance and didn't have the energy to push back against it.

Nathan's big moment came when we stopped at a house where someone was waiting all in black.  They triggered glowing red eyes and walked toward him, scaring Nathan quite a bit.  But, he didn't get upset and want to call a halt.  Instead we encouraged him to pull out his sonic screwdriver.  The man in black pretended to be grievously driven back which gave Nathan a great big grin.  Good fun all around.  He was also tickled when someone immediately recognized his costume and said he was her favourite costume of the night.  She gave him an extra treat for that.  

We ran out of candy around 8:30 at night and closed up shop.  We took down the TARDIS right away since a few people were trying to open the door on their own.  (Granted, the sign on the TARDIS does say to open the door for assistance, so I can understand the confusion.)

I always go through a lot of work for holidays for the boys.  But it's worth it for them to have something special to remember.

Wednesday 26 October 2016

Picking and Choosing Opportunities

One wouldn't think that May would fill up too quickly before Halloween but we're looking at two competing activities for one of the weekends: Nathan's Cub camp and Alex's school trip. Alex's grade is going to spend a weekend at a camp and the autism class has been included in the invitation.  

We're waiting to hear if this is a parent-included event.  If it's not, then Alex won't be able to go since he needs a fairly high level of supervision.  But if it is, then we have a challenge in that neither Dave nor I are outdoors type people.  Nathan and Avi will be at Cub Camp, so the question is whether or not I can pull myself together enough to deal with Alex for two solid days of camping.

I'm glad the class is being included in these opportunities but I find myself wondering if they've really thought it through.  (Or if I'm not recognizing Alex's potential.)  I could see this being more stressful than fun for the kids.  And I could see it generating some resentment among their neurotypical peers, who are probably looking forward to getting away from parental supervision.

Lots of time to decide and figure things out.  But things like this are going to start coming up more and more as Alex gets older. 

Tuesday 25 October 2016

Pushing Buttons: Dealing with Compulsion

This weekend we saw a resurgence in an old nemesis: button pushing.  Not in a being specifically irritating kind of way but in a literally pushing actual buttons kind of way.  Alex would run from the other room to push the buttons on the microwave, tried to push buttons on the cash register when we were out and tried to jump into a random car in the parking lot to push the hazards.

When this was an issue before, we used a two-pronged approach.  Certain buttons (cars, cash registers, fire alarms) were declared off-limits.  Others (microwave, elevators, etc) could be pushed but only after asking permission.  That let us be the guardians of "is this socially appropriate" and stopped the frenetic dashing to be the first to push.

If Alex failed to ask and pushed anyway, then he failed to earn a privilege such as going outside or getting a treat or having screentime.

It took about six months to extinguish the behaviour and we hadn't seen it for a couple of years.  We're going to try the same approach this time and hopefully it won't take as long.

I'm hoping this is a sort of behavioural aftershock from all the difficulties we've had this fall and not the start of a puberty-driven behavioural collapse. 

Friday 21 October 2016

Update on help for Nathan

Since school began, I've been taking Nathan to someone he can talk to.  Last night, we were told that he seems to be doing fine and they don't see a reason to continue with regular sessions.

Maybe I'm just used to marathon level intervention, but this seems awfully quick.  And yet, I can't deny that Nathan is happier and having fewer issues than he did through the summer.

My only concerns are that Nathan does have a tendency to people-please, doing what he thinks people want him to do.  And he doesn't like sharing when things are bothering him.  I'd be a lot more confident if he was coming to me with his problems.

However, I remind myself that we can always go back if there's a problem.  It's not the end of the world.

I hope I really did just over-react and Nathan is doing just fine, thank you very much.  It would be nice if something was going well in our lives.

Thursday 20 October 2016

Update on Service Dog (Sort of)

I know a lot of you have been wondering what's going on with Alex's service dog.  We had initially been told that we would likely receive the dog in the spring or fall of 2016.  Well, the fall training for 2016 is over and we were not called in for it.

National Service Dog's website shows that they are no longer accepting applications for autism service dogs and that families who have applied should expect to wait 2 to 3 years.  

I've gotten unofficial confirmation that Alex is still on the approved list and that it will likely be another year before his name comes up for a dog.  However, there are still no guarantees for anything.

I have mixed feelings about this.  On the one hand, it is reassuring to have some kind of response, even an unofficial one.  On the other, I really need to find some alternatives to help Alex.  I can't count on this latest estimate being accurate and lose another year or two in waiting.  I'm just not sure what alternatives to look at.

We were hoping the dog would be a tool to provide more independence for him.  There's not really a substitute for this, we'll just have to continue to supervise.

The dog would provide a visual signal that Alex is different, cutting down on confrontations.  Again, not a lot of good alternatives.

Alex is lonely and could use a friend, but isn't socially up to making them.  This is the real key for why we wanted the dog, and is still a difficult option.  We've done the arranged "playdate" thing and it doesn't work out.  I'll have to do some more thinking and see if I can come up with a new set of ideas.

Wednesday 19 October 2016

Review of "The Accountant" (Spoilers)

Last night Dave and I went to see The Accountant with Ben Affleck.  Affleck plays an autistic savant who works with criminal organizations to track down their money and also happens to be a highly-skilled martial artist/assassin.

Affleck did a good job of portraying someone with high functioning autism and the child actors did a great job at showing low functioning autism in the flashback scenes.  The film is a typical action movie set up, so those who enjoyed movies like John Wick and Taken will probably enjoy this one.

I didn't.  At least, not entirely.

What stopped me were two things:

1) Affleck's character's father turns down a place for his son at a facility dedicated to helping children with autism.  The facility is offering child-based behaviour therapy to teach the children to function within the neurotypical world.  The father insists that he won't have his son "coddled" and if he has sensory issues, then he should be exposed to bright lights and loud noises to build up his tolerance.  (This is a horrible, horrible idea and the equivalent of trying to build up someone's tolerance for torture.  It just does not work.)  The father also puts his children through martial arts training that would make Batman wince.  It's violent and abusive and made it hard for me to enjoy the rest.

The movie's implication is that the father's harsh treatment worked.  Affleck's character goes from very low functioning to high functioning, while the other children at the center become low functioning adults.  That just makes me cringe, especially with the implication that if people with disabilities and mental health issues aren't "coddled" by accommodations, they achieve more.

2) Both adults with autism are portrayed as savants.  Savants are actually quite rare in autism.  While kids may show expert levels of knowledge or skills, it's obsessive practice, not a superhuman ability.  Affleck's character is able to do things that people simply wouldn't be able to do, even with practice, making him a savant.  Perhaps it's my own cynicism, but I get a little tired of the superhero in disguise approach to special needs kids (they're psychic, they're savants, they're trapped behind an inability to communicate).  Most kids with autism do not have special skills to offset their difficult lives.

No one would suggest making a movie where someone who is paralyzed is refused a wheelchair by a parent and then goes on to both walk and become Superman.  I don't think it should be done with autism either.

Monday 17 October 2016

A Great Day at the Museum

Nathan's class has been studying rocks and minerals and his teacher suggested we go and see the Earth exhibit at the Museum of Nature.  Seeing an opportunity to let Nathan show off his knowledge and reinforce what he'd learned, my dad and I took him to the museum on Sunday.

Nathan had a lot of fun, particularly with the over-the-top videos explaining the different ways rocks metamorphose.  (For those who remember the energy drink ads of the early 2010s, it's something like that but explaining how heat, pressure and impact can transform rock.)

There were a number of interactive displays.  Nathan got to build his own volcano and was quite excited when it created a pyroclastic flow and destroyed the little town at the base.  He then tried building another one and created his own chain of islands.  

There were a couple of touch and go moments.  Nathan wanted a box of water from the cafeteria, but (as I anticipated) only drank a little before saying he was done.  I made him carry it home, which he wasn't happy about but eventually complied with.

It was a fun day.  We stopped by the Water exhibit and the dinosaur one as well but spent most of the time in the Earth exhibit.  It's nice to be able to go through the museum and actually look at things rather than blasting through at Alex-speeds.  

Friday 14 October 2016

Tough Decision on Screentime

I've noticed a pattern lately.  If I give Nathan more screentime than about an hour a day, he is very agitated and easily upset for the next day or so.

Now he is "earning" unlimited screentime periodically for keeping his temper and otherwise doing good work.  But we're paying for it after.

This leaves me with a challenge.  It's a big motivator, so I'm reluctant to take it out of the rotation, but am I really doing Nathan any favours by setting him up for such spectacular failures?  Case in point: yesterday he earned unlimited screentime.  Today he threw a big tantrum about tidying his room and lost not only his screentime for today, but for the weekend.  And came close to having the contents of his room confiscated.

I remember that the first biography/case study I read of a child with autism had a similar problem.  The kid loved videos but they got him so agitated that the family decided to only allow him one video per year, at Christmas.  And they paid for that indulgence every year well into January.

Sometimes what our kids want is the equivalent of a brass ring.  And sometimes it's the equivalent of heroin.  And not even the most progressive person in the world has ever suggested that we ought to encourage drug users to do useful or helpful things in order to earn drugs.  Figuring out which is which is a challenge.

Thursday 13 October 2016

Driving Dilemma: Ray of Hope

I spoke to both Alex's teacher and the driver about what happened on Tuesday and got a rough timeline of events.

The transport company didn't notify the school that there would be a temporary driver until after 2 pm (after they'd spoken to me).

That temporary driver went to the wrong part of the school to pick Alex up.

The teachers and EAs, knowing that driver 2 would be the regular driver, thought that they must have had the start date wrong.  Driver 2 did not have our address and was trying to reach the transport company to find out what went wrong.

(This is the point when they should have called me as a parent to make the call as to having driver 2 take Alex home or have me come to pick him up.)

After twenty-thirty minutes, Driver 2 got the information she needed and set off to bring Alex home.  Alex was quite upset at this point and Driver 2 was in a rush as she had another run she needed to do.

After Driver 2 left, the temporary driver arrived at the correct pick up location and asked to pick up Alex.

So, the greater part of the problem lies in the transport company's terrible communication, an ongoing issue.  But the school should have contacted me rather than trying to solve it themselves.  I gather things got rather tense and the VP has instructed the teachers to contact me rather than deal with any driver issues themselves.

On the plus side, Driver 2 called me personally to talk about the situation, apologize and find out about Alex.  We had a good conversation and I'm confident in her ability to deal with him.  I'm still filing the letter with OSTA, the school board and the transport company, because what happened was absolutely inexcusable and needs to be on record.  But hopefully this is the last time I'll have to worry about it.

Wednesday 12 October 2016

Driving Dilemma: Hits Keep Coming

Yesterday at 1, I still had not heard anything from the transport company, so I called OSTA, who said that everything was arranged and that the company had confirmed that they'd spoken with me.  I said that they hadn't and the OSTA rep said he would have them contact me immediately.  The plan was to have a temporary driver yesterday with Alex starting with his new driver today.

Okay.  Not great, but at least it was a plan.  After that prompt, I got a call from the transport company confirming that Alex would have a new driver starting Wednesday.  I asked who would be driving him on Tuesday and was told that it would be his original driver.


Told the transport company that I would pick Alex up as that driver would not be transporting my son.  Immediately called OSTA, who said they would look into it.

Transport company called back and said they'd made a mistake, that a temporary driver was assigned for today.

Not great, but okay.  It's now 2 pm, and Alex finishes school within the hour.  Not a lot of notice, but at least everything is set up.  I call the school and confirm that the transport company has been in touch with them.  (That morning apparently.)

Okay, now I'm waiting for Alex to get home.  We quickly move past the time when he should have been back, and I'm worried but not too much.  Perhaps the driver is having trouble navigating or there was a delay.  

About 5 minutes after Alex should have been home, I get a call from the transport company asking if I picked Alex up.  I said no, that I've been waiting for him at home.  The woman then said that they didn't have Alex and would have to find out what happened.

I immediately called the school (and good thing I did because the transport company never called me back) and somehow, Alex was put onto the wrong van.  He was put into the van which will be his regular transport starting Wednesday.  The temporary driver went to the wrong side of the school.  The school reassured me that the driver had Alex and they were on their way.

Fifteen minutes later, the driver showed up.  Alex was in tears and banged his head as soon as he got out of the car.  

I don't know what happened or why they were almost half an hour late.  Did they wait to hear from me before leaving the school?  Was the driver wandering around at random?  Why the h*** didn't the school contact me immediately when there was a problem?

I'm not feeling good about this and I'm exhausted with trying to fight these people.  How much is one person expected to swallow?  And how much am I supposed to dismiss as coincidence?

On the very small bright side, the driver seemed nice and since she drives one of the other children, I've already spoken with his mom and she says that the driver is really good with her child.

Tuesday 11 October 2016

Nathan's Homework

Nathan has a large project due for school next Monday.  The teacher was good enough to give us two weekends to work on it, which was good, because we definitely needed the extra time.

Here is the challenge: Nathan gets easily frustrated, and when he does, he gets passive.  Since I'm trying not to do this project for him, that gets me frustrated and it means we take a really long time to get anything done.

We've been averaging 2-3 hours per day on this project, which is frankly exhausting.  He's got 9 questions which he has to answer.  We've done one question per day and we'll have to keep on doing that so that he can finish in time to put everything together on a bristol board poster next weekend.

I'm not sure how to boost his confidence except by making him practice doing it on his own and building up a history of success.  But it doesn't seem to be working terribly well.

Monday 10 October 2016

Driving Dilemma: Another Update

I spoke with our OSTA representative on Friday and he told me that he had spoken with the transportation company on Thursday and told them to arrange for an alternate driver by Tuesday afternoon.  Since this is the Thanksgiving long weekend, that effectively means by the next time Alex is at school.

The transport company tried to bluff and say it wasn't possible.  They also tried to convince the OSTA representative that the driver should be given another chance.  These attempts are not leaving me with a great deal of confidence in the transport company, especially given that OSTA is the one who assigns the contracts to the different companies.  I would think a little more cooperation would be a prudent effort.

However, the ultimatum is there.  We will see if the company actually abides by it.

There's another troubling issue.  The transportation company also told the OSTA representative that they had grave concerns about Alex's safety without the seatbelt restraint.  They want to hold a meeting with me about using it.  I've said I have no problem with the meeting but that my position continues to be that the restraint is not necessary.

The timing of this leaves me worried.  Today is a stat holiday, which means that if the transport company wants to hold this meeting before a driver picks Alex up on Tuesday, it will have to be done on Tuesday as a last minute rushed thing.

I believe this sudden change of position is an attempt to save both the driver's job and their contract.  If the driver's actions were justified but her methods of doing so weren't, then they can argue it was a protocol issue and not a serious ethical violation.  If the driver is guilty of having put a child in restraints when that child should not have been restrained, then the company would lose their transportation contract.

I am wondering whether or not this meeting will happen at all.  The request for the meeting might be an attempt to get their "position" on record, without the trouble of actually having to argue it. (Which would be indefensible.)  I'm thinking that I will be putting two letters on record, regardless of whether or not there is a meeting.  First, a record of the driver's actions, sent to OSTA, the transport company and the school.  And second, a letter to point out the inconsistencies in the transport company's position and why Alex should not have been put in a restraint.  I want both of those things on record, just in case we ever have to deal with this nonsense again.

This will be the transport company's last chance to handle things in a friendly manner with me.  If they choose to be aggressive about the restraint or laggard about assigning a new driver, then I will no longer be able to work with them.  I hope it doesn't come to that, as the next level will be very time-consuming and expensive, since I will have to argue that the entire company is unfit for transporting vulnerable children.  As it is, I am already uneasy about the idea of letting this go, since I suspect I am not the only parent to have been faced with this difficulty.  I'm lucky enough to have the energy and stubbornness not to have been overwhelmed in the face of their indifference.  Not every parent has that luxury.

Friday 7 October 2016

Driving Dilemma: I've Lost Count of the Installments

Yesterday, I involved the school and OSTA, the company that oversees the transit contracts, in this mess with Alex's former driver.

Both have promised to look into this.

One thing has been bothering me though.  The last time the transit company supervisor talked to me, he tried to pass off the driver's actions as concern for my child's safety.

First of all: garbage.  A driver who is concerned about safety does not drive backwards down a residential street for 150 metres.  Drivers who are concerned about a child's welfare are willing to communicate and do not attempt to hide their actions.

Then it occurred to me: why am I even trusting this woman's account of what happened at all?

Alex has never tried to leave a vehicle in the way she described.  He's got his share of issues but that particular one has never happened.

The only thing I have to go on is that this driver has been irritated and impatient with my son since the first moment I saw her.  She has communication issues and by the most generous interpretation, can't understand the simple concept of "no restraint".  Which would suggest that she would also have difficulty accurately describing what happened.

Worst possible interpretation: she decided to take punitive action against a child who annoyed her for some reason.

I think this may be a valid point to bring up when I speak to OSTA again today.

Thursday 6 October 2016

Driving Dilemma: Time to Step It Up

I was expecting a call from the supervisor of the transit company after Tuesday's call.  What I was not expecting was for the supervisor to ask me yet again to give the driver another chance.  Nor was I expecting to be told that getting a new driver could take "months and months".

Frankly, I'm calling bulls**t on both those points.

First of all, the request to give the driver another chance tells me that this supervisor's approach to "fixing" the problem is to wait and hope I'll get tired of driving Alex myself.  It also tells me that they don't take her violations seriously.

Second of all, I know for a fact that there are 4 other students going to Alex's school via special transit, all within a few blocks of our house.  There are empty spaces in the two other vans, so there is no immediately obvious barrier to transitioning Alex to one of those vans. 

When I pointed that out to the supervisor, he was surprised and backpedaled, saying someone else was in charge of the schedules and routes.  Which told me that he had not even bothered to check on availability.

The phone call yesterday represents their last opportunity to handle this quietly within the system.  At this point, I am no longer inclined to be understanding and cooperative.  My son is entitled to transit and he is entitled to have a driver who is both competent and trustworthy.

I've had people suggest that I should threaten a lawsuit or media attention to get the company to give me what I want.  Here's the thing: I don't like threatening people into doing the right thing.  If I feel I need the reinforcement of a lawsuit or media, then there is a greater endemic problem which needs to be addressed.  Those are things which should not be used as a threat but as a way to bring attention to those endemic problems.  

Wednesday 5 October 2016

Driving Dilemma: Yet Another (Censored) Round

Yesterday I got a call from the transportation company and I thought, oh good, they must have a new driver arranged for Alex.

Instead I had a woman asking me why I was refusing services in the afternoon.  After a few minutes, I realized what has happened.

The afternoon driver still thinks she's supposed to pick up Alex and is pissed off that I've been picking him up.

Once I realized that, I was very direct with the woman and explained that I was not refusing services and that I expected to be assigned a new driver.  When she (somewhat snottily) asked why I would need a new driver, I said: Because the old one lied to me and lied to the school and put my son in a restraint without my permission.


Then a stuttered promise to look into the situation.

I'm not particularly concerned with protecting the driver's reputation among her coworkers and I'm not sympathetic to any attempt to keep this quiet.  If the company chooses to believe the driver's implausible story, that's their choice.  The only choice I care about is that she does not come near Alex again.

I will continue to give the transport company until the end of the week to get back to me about assigning a new driver, but I'm getting less hopeful about their ability to handle it.

Tuesday 4 October 2016

Nathan's Turn

Yesterday, I got a call from Nathan's principal that Nathan had punched another student.  Every time this happens, I get a sick feeling in my stomach, wondering if this is going to be the game changer.

These incidents happen rarely, which means we can't really get any behavioural purchase on them.  By the time they've happened and been dealt with, it could be months before the next one happens.  That's a good thing, but it means there's no opportunity to build up momentum and repetition for Nathan to learn.  

Nathan initially said the other child was bullying him, but when pressed for details, admitted that all they did was ask him to stop making a noise with his fingers.  I asked if they asked him in a mean way, and he said no.  

I know that emotional regulation is difficult for children with autism, so it may be a long time before Nathan can deal with these kind of explosive impulses in a constructive way.  But I think it's horrible that my child has hurt another child and I worry about what it does for Nathan's chances for social learning and simply, for him to have friends.

He's said in the past that sometimes he doesn't play with the other kids because he doesn't trust his temper.  Which is an option, but not a good one.

Yesterday worries me in particular because he was still angry when he got home, rather than bouncing back.  That kind of sustained anger is new and I wonder if it points to a new phase or to something underlying.  Either way, I'll just have to do the best I can and hope that we can make it all right.

Monday 3 October 2016

IKEA: 3, Me: 1

This weekend, I thought: I'll put together Nathan's new bedroom set.  A bed, a desk and a bookcase.  Shouldn't be too hard.  I checked IKEA's site and they said 30 minutes for the bookshelf, 90 minutes for the desk and the same for the bed.  (These times are always lies since they depend on having someone who is familiar with the products.)

So I thought to myself: probably an hour for the bookcase (I've done a lot of those) and 2-4 hours each for the desk and the bed.  

Actual assembly time: 1 hour for the bookcase, 8 hours for the desk and almost 10 for the bed.

I'm wiped and I have blisters on my thumbs from Allen Key overuse.  But Nathan loves his new bedroom set, so that's a win.