Thursday 28 May 2015

My Own Letter to OC Transpo

Jaimeson Wolf posted a letter on his blog to OC Transpo after witnessing a bus driver order an autistic child and his caregiver off the bus.  By Wolf's own admission, the driver is frequently surly and rude to the majority of the riders, which made this unpleasant but not unpredictable.

Wolf was greatly offended that someone would choose to be rude and aggressive towards a child with an obvious disability.  I agree with that offence, but would add that this driver's reported rudeness towards the world in general is equally offensive.  Hopefully, someone at OC Transpo takes a look and considers whether or not this individual should still have a job where he interacts with the public.

But I wanted to write my own letter because I feel it is unfair to leave things as is.  Alex loves OC Transpo and we've had almost universally positive experiences with them.  (I'd say 98% by my mental polling of memories.)  The drivers on our local route all know him and we often get a wave when we're outside or on a walk.  One time I couldn't find his pass and the driver told me not to worry about it and took us home anyway.  (I found it later wedged underneath some toys in the backpack.)  Another, knowing of Alex's love for the double-decker buses, told us that the next bus would be a double decker and advised us to wait.

The drivers here have gone out of their way to be pleasant, friendly and helpful.  In bad weather, they've dropped us closer to our house rather than making us walk from the bus stop.  They've stopped and waited for us when we're running to the stop. 

None of this negates the experience which Wolf witnessed and none of it excuses such bad behaviour.  But surly and aggressive drivers are the exception, from my experience. 

Do I worry that Alex will encounter such a person?  Of course I do, it's inevitable that sooner or later, we will hit someone having a bad day or who is habitually rude.  That is just a part of life when your child doesn't have a visible disability but also doesn't conform to social expectations.  But I hope he will understand that they are not typical.  In fact, he'll probably be able to dismiss it faster than I will since he won't spend time worrying about the social implications.

We'll still be riding the bus though.  And we'll be enjoying it.

Tuesday 26 May 2015

Survived A Camping Weekend

I am not an outdoor person.  I consider a stay "rustic" if there's no attached restaurant and spa.  So I've been recovering from a weekend of camping with Nathan's Beaver colony.  To be fair, I did refuse to actually sleep overnight at the campsite, but it was still a long day which had us leaving the house at 6:50 in the morning and not home until almost 10 at night.

Nathan did very well.  He had 3 meltdowns throughout the day.  Two because someone accidentally bumped into him and one because he didn't get his turn before the game switched.  He cried and wanted to go home but didn't hit anyone, which is an improvement.

For both of them, I let him take a break from the activities.  I insisted that we stay on, reminding him that sad feelings can be "tricky" when they try to make you believe that there will be no more fun.

There was a lot of walking (a 2.5 km hike to and from where we parked the car plus walking around a major provincial camp site).  Since we weren't staying overnight, we had to carry all of our gear with us throughout the day.  Or rather, I had to carry it, since Nathan was busy with the Beavers most of the time.

I did do one thing which I think helped the day go smoothly (aside from frequent snacks and water breaks).  On our way to the campsite, I pointed out various landmarks on the trek (bridge, camp store, signs) and told Nathan to remember them for the walk back.  It helped when he was tired and grumpy on the way back.  I'd warned him that I wasn't going to carry him but that we could take breaks whenever he wanted.  Because I could point out where we were in the trail, he was able to accept it better.  (We're at the camp store, so we're near the bridge, which is near the car.)

The Scouts were exceptionally well organized, managing hundreds of kids at various levels and keeping them all fed, moving and interested.  Well done to them.

Thursday 21 May 2015

Accepting 'No' Graciously

Alex has a lot of trouble with the word "no".  Since he is emotionally much closer to a toddler than a teenager, the immediate crushing of his impulses tends to evoke a tantrum no matter what future delights have been promised.  (Like: no we can't go see the OLG sign right now because we're going to get ice cream.)

Yesterday, we had a big tantrum over what he wanted for dinner (A&W).  He'd been told that morning that we weren't having A&W.  He'd been told that afternoon.  He'd been told repeatedly during our trip to the grocery store to pick up hamburgers to make (my vain attempt at a compromise).  As we walked back to the car, the endless cycle of "A&W!" "No." finally reached a breaking point and I told him to stop asking.

His response was to turn around and shove Nathan into the pavement.

This is not an uncommon cycle with us.  Alex gets fixated on something he can't have (last time it was he wanted to go back to Disney that afternoon) and starts an endless "Now? Can I have it now?  What about now? Now? How about now?" that is substantially less funny than the comedy routine.  We've tried ignoring it but he will increase both volume and proximity until he is shouting less than an inch away from our faces.

When he finally grasps that our refusal is absolute and not just a matter of timing, then he reacts violently.

I've had well-meaning suggestions that I should just avoid saying no.  If Alex asks for something he can't have, I should offer him something else.  Ignore the request and focus on something he can have. 

But 'no' is a part of life.  We all have to deal with it.  Pretending it's an option or a gateway to better things is a disservice both to Alex and every single person he will ever have to deal with.

Wednesday 20 May 2015

My Little Shopper

Nathan got some duplicate toys for his birthday, so I took him to Walmart to return them.  He ended up with over $50 in credit as well as $50 that he had saved from birthday money and allowance.  (If I had guessed the toys would have been quite that much, I probably would have encouraged him to leave the cash at home.)

One of the things he has been wanting was a $200 Millennium Falcon LEGO set.  I told him that if we went home and saved his money, then he would be halfway to getting it.  He thought about it for awhile and then decided he wanted to go ahead.

We spent awhile looking at the toys and he picked out what he wanted.  I kept a running total in my head and warned him when he started to approach his limit.  Then it was quite interesting.  Every time he wanted to add a new toy to the cart, I told him we had to put another toy back (or sometimes two or three).

He saw a large Minecraft LEGO set which was $89.  I told him we'd have to put all the toys we had back to get that one and he thought about it for a few minutes and then decided to put the Minecraft set back on the shelf.  He wanted a Skylander set which was $30 and asked for my help to figure out which toys to put back (a DVD and an action figure).

I was really proud of him.  There wasn't any whining or demands to get more.  He didn't try to persuade me to buy some of the toys for him.  He asked for help with the math, but he was the one who figured out what he was going to get and what he wasn't. 

He was pretty proud of himself, too, walking out of the store with two bags of stuff he bought himself.  I know it's early on to be making him responsible for his own money, but I think it's important to give him practice.  Hopefully it'll help keep him from making some of the usual mistakes most of us go through when we start getting a regular paycheque.

Tuesday 19 May 2015

Progress on the Long Weekend

Dave and I put our heads together and then we sat down with Nathan to come up with a strategy to get things back on track.  We've identified one of the key issues is that he is embarrassed and worried when he has an accident, and thus his instinct is to hide it.  So we put together a plan to deal with that:

If he does a BM in the toilet: he gets the Xbox for the rest of the day

If he has an accident and tells us or tells us the truth when we ask: Xbox for 15 minutes

If he has an accident and lies: he loses the computer and iPad

Clean all day: $ 1

We're going to have to monitor this carefully.  After he has a week or two of success, we'll have to mix things up to avoid getting trapped in the same situation again.

Friday 15 May 2015

Some Difficult News For Toileting

We met with our behavioural specialist yesterday to talk about Alex's progress (or lack of) with toileting.  She told us that she's got some real concerns about the program, though she's not out of tricks yet.

Alex has picked up everything else in the behaviour program with relative ease.  The aggression is down and compliance is up.  He's learned to tie his shoes and is working on brushing his own hair.  As the specialist put it, he works very well within the program.  Figure out a reinforcer, apply it consistently and he learns quickly.

The fact that this is not happening within the toileting program tells her that either he does not understand what we are asking or he is not capable of it.  She's going to focus on ways to help him to understand what is required.

We've created a stop-motion movie showing a BM dropping out of the body and into the toilet.  She's also found a toy which "poops" candy.  She's going to think about some other techniques to work with as well.

We're not giving up but we are starting to think more seriously about Plan B, where we will teach Alex to clean up after himself.  We'll also have to do some thinking about what we want because he is almost completely toilet trained for peeing and if we go back to a diaper, that will disappear.  Maybe we can train him to go get a diaper if he needs to go poop and then clean himself up and go about his business.

She also had some insight into our challenges with Nathan.  He does quite well for awhile, a month or two, then starts to backslide.  The problem is that we're not varying the reinforcers.  After he's had two weeks of success, we need to start switching things up and making the reinforcers more random.  For some kids, it needs to be completely random and unpredictable.  For others, just varying the reward or timing is enough.

Thursday 14 May 2015

End of the Beaver Era

Tonight is Nathan's "swim-up" ceremony where he officially graduates from Beavers to Cubs. 

It's a little strange to realize he's put in 3 years already.  He's done a lot of fun and impressive things with his Beaver troupe.  They've helped out at the food bank, they've visited local theatres, fire stations, police stations, retirement homes.  They've learned about race cars, bottle rockets, cardboard construction techniques.  They've learned jokes and skits and Nathan has actually participated in all of it.

I hope he's learning that he doesn't need to shy away from new things or worry about making mistakes.  I hope he's learning that part of the fun is learning with other people. 

It's been a lot of work but, in the end, it's worth it.

Tuesday 12 May 2015

Happy Birthday Alex

Alex had a pretty good birthday today.
 Started with some presents, a collection of Disney Princesses and an articulated bus.

 Had his picture taken by the local paparazzi.
 Enjoyed a birthday morning croissant.
 Got another party and cupcakes during therapy.
 And a lovely ball with the Frozen princesses on it.
 Then came the highlight: Queen Elsa and Princess Ana dropped by for a visit.
 Lots of hugs.

 Sitting with each of them in turn.

 More cuddles.
 Learning a dance.
 Demonstrating his mad puzzle assembly skills.
I'm really glad we went ahead with an official princess party.  The girls were wonderful and stayed in character the entire time.  They adjusted what they were doing with what Alex wanted to do and let him lead.  I didn't get a picture (though I did record a video) of him enjoying them singing "Let It Go" and "Do You Want To Build A Snowman".   They even joined us for ice cream at the end.
Alex was delighted.  I think it will be the highlight of his week.

Monday 11 May 2015

As Promised, ComicCon Pictures

3 days, 19 hours on site, 40 000 people.  A great but exhausting weekend.  I was on the go non-stop, going to panels and workshops.  I actually didn't spend as much time as I would have liked wandering around the floor and seeing the different costumes and vendors, but it was still worth it.

This was my third year attending ComicCon, my second as a VIP, and I've learned to separate the actors from their roles.  Just because I'm not a fan of a particular series or franchise doesn't mean that seeing the actors involved won't be interesting.  Case in point:

 Brian O'Halloran
 And Jason Mewes from Clerks.

Billie Piper from Doctor Who.
Malcolm McDowell from Clockwork Orange.

The only Kevin Smith movie I've enjoyed is Dogma and I somehow never got into Doctor Who or managed to see Clockwork Orange but I enjoyed listening to them share their experiences.

Then there were the ones I've grown up with:

 Wil Wheaton
 Jonathan Frakes
 And Marina Sirtis, all from Star Trek: The Next Generation.
 Peter Mayhew, Chewbacca from Star Wars.
Nichelle Nichols from the original Star Trek.

As much as I'd like to pretend I'm better than this, there is a geeky thrill with being in the same room as them and listening to them in person.  Nichelle sang the vocals from the original Trek theme song, Mayhew talked about how hot the Wookie suit was, Frakes and Sirtis were having a grand old time together and Wheaton was hilarious.

Then there are the ones I enjoyed as an adult:

 Mira Furlan from Babylon 5, in my opinion, one of the best sci-fi shows ever.
Billy Boyd, from Lord of the Rings.  Who challenged us all to make potato scones.

I could go on for hours telling stories but instead, I'll share some of the amazing costumes I saw.

From Disney:

 Go-Go and Honey Lemon from Big Hero 6.
Must I subtitle?  Olaf and Elsa
The full body suits:


Random nostalgia:

And the 501st Legion and their Star Wars tribute:

And on the way home, I got passed by a DeLorean time machine.  I think that says it all.

Update on Garage Sale (ComicCon pictures tomorrow)

We raised almost $ 50 at the weekend's garage sale for Alex.  Thank you to everyone who donated so generously.

ComicCon was amazing but exhausting.  I will have pictures up tomorrow.

Friday 8 May 2015

Today's the Day!

Today marks the start of Comiccon and I definitely need the break.  Three days of geek indulgence, celebrity panels and amazing costumes.

It has been very difficult keeping up with everything for the last six months and this will be a welcome change of pace.  I'm trying not to think about how much stuff will have accumulated on my to-do list when I get home, but even so, I think this is a good idea.

This year will be busier than usual since I'm also helping out with the Emerging Minds garage sale on Sunday, May 10th at 1002 Byron Avenue (7am to 1pm).  The sale is to raise money for Autism Speaks but we'll also be collecting donations for Alex's service dog in exchange for donated Timbits.

Thursday 7 May 2015

More Toileting Work

James Bond had it easy.  Ditto Sherlock Holmes and every single comic book superhero since the dawn of time.

None of them had to deal with toilet-training a kid who is really not a fan of the process.

The latest challenge is that he is refusing to do a BM until later in the evening.  This means the therapists have no chance to work on it and things are left entirely on our shoulders.  And often we have no opportunity for success because he's waiting until after bedtime.

After some talks with our doctor as well as the behaviour specialist, we've decided to use a bowel stimulant to encourage him to go while the therapists are here.  It's not a great decision and it carries some risks (there are reasons this isn't the go-to plan for toilet training) but the risk of losing any opportunity to reward the behaviour we want is greater.

Tuesday 5 May 2015

Happy Birthday Nathan

It was 8 years ago today that Mr. Nathan came into this world.  Not kicking and screaming, but interested and laid back.

He had a very good birthday, beginning with our family's traditional morning birthday cake:

Quite a change from his first birthday morning:

He got calls from his aunties in Toronto and a special Cinco de Mayo-themed taco birthday dinner.

As well as an assortment of introductory Geek toys.  :)

And now I can't resist throwing in another picture from his very first birthday celebration. 

That's a kid who suddenly realized there was even MORE cake!  :)