Facing the Future

It’s dangerous to try to see into the future. No one knows this better than parents of children with special needs. One day at a time. Whatever you do, don’t think too far ahead.

I tend to go along on the presumption that my child is just like any other child, that he blends, that his foibles are not that different from those of his peers. And for the most part, that’s true: his teachers tell me that while he still needs organizational support, he’s well on his way to becoming a mature and responsible student. To quote from one of my books on Asperger’s: “Quirky, yes–hopeless, no.”

So I often think he’s just like everyone else. I also like to pretend that the world is just like it was when I was growing up, when almost every kid mowed lawns and delivered newspapers, couldn’t wait to learn to drive, and had a part-time job by age 15.

Granted, my child is only 10. But my breath catches in my throat whenever I think about where he’ll be five years from now. Will this boy who can be so rigid in his thinking ever learn the ebb and flow of driving in traffic? Will a kid who can barely chop a carrot ever cook an entire meal? Will a guy who has trouble with eye contact and who takes language so literally ever make it through a job interview?

None of us has a crystal ball, but I have to believe he’ll be fine. Five years is an eternity in a child’s development. And five years ago, when he was first diagnosed, I would not have believed we would get to a place where he plays team sports, gets invited to play dates and sleepovers, and walks to school by himself.

So anything can happen. Deep breaths. We can do this.

Cooking Lessons With Mr. Literal

I have no culinary skills whatsoever, but I want my boys to be able to make more than just toast, so I’ve been getting them to help out a bit in the kitchen. This hasn’t been too difficult with Brayden, whose main goal in life is figuring out how things work (he theorized that the clumps of cornstarch disappeared into the water because the starch absorbed the water and thus became heavy and sank – I have no idea if he’s right).

Justin, however, hates taking on new tasks he’s not sure he can master. My first mistake was asking if he wanted to help me make brunch. (I really should have known better.) He politely refused, whereupon I politely informed him he would have to help if he wanted to eat said brunch. Even once I got him in the kitchen, he kept trying to sneak away – I had to promise he could have juice instead of the usual water to get him to stay put. Sigh.

I pride myself on my ability to give clear instructions. One of the tenets of my technical writing program was that you must write so that you cannot possibly be misunderstood. The ultimate test, however, is trying to give instructions to someone who does exactly what you said to do.

We were making hash browns. I got Justin to pre-heat the oven, get the cookie sheet, count out the hash brown patties, and put the patties on the cookie sheet. So far so good. Then I said, “Put them in the oven.”

Granted, I used the wrong pronoun. I should have said, “Put it in the oven,” since I was really talking about the cookie sheet. But his literal Asperger mind took me at my word, and the next thing I knew he was taking the individual hash brown patties off the cookie sheet so he could put them in the oven. Oops.

The devil is in the details…

Wanted: Personal Assistant For Absent-Minded Aspie

At our annual IEP meeting a couple weeks ago, Justin’s teacher began the conversation with, “He’s going to be very successful.”

She was nice enough not to add, “which is good, because then he can hire a personal assistant to collect his coat, pack his bag, update his day planner and tell him where he’s supposed to be.”

Justin has always been an organizational train wreck. One of the pitfalls of Asperger’s is the impairment in executive functioning skills – all those mental processes that let us plan our actions, remember instructions and juggle multiple tasks.His desk is such a disaster that his teacher got him a whole separate bin to store his duotangs so they wouldn’t disappear into the abyss. He has 200 pencils in his room because they get buried under his mountain of papers and so he gets a new one every time he wants to make a new list. He left his gloves in his classroom on Friday, and when we went to retrieve them he also found the water bottle, gym clothes and math homework he’d neglected to put in his backpack. ARGH.

When he was younger, we had a written list posted in the kitchen of all the steps he was supposed to follow when he finished breakfast (get dressed, brush teeth, make bed, etc.) We had another (laminated) one for how to take a shower, one for how to tie his shoes, and so on. Eventually we could take the lists away and he would remember the routines. The terminology stuck, though – even now, when I want him to get dressed, I tell him to do his steps.

But he’s in fourth grade now, and his teacher puts a big emphasis on personal responsibility. The kids even get marked on their use of their personal agendas – they’re supposed to use the agendas to record their reading minutes, keep track of due dates and generally stay organized. You can guess how well that’s going.

He has learned something new, though. At swimming lessons the other day, Brayden complained that Justin walked out of the change room and left his stuff all over the floor instead of putting it in the locker. So Justin offered to pay Brayden in leftover Halloween candy if Brayden would clean up his stuff for him.

Delegating is an important skill, right? (Sigh…)

Ups and Downs at Disneyland

I’m sure I speak for many autism moms when I say: damn the balloons.

Obviously Disneyland is full of balloons. And for the most part, Justin’s been OK with that; he doesn’t seem bothered by kids holding giant Mickey balloons on a string. But he had a mini-meltdown in the middle of the Muppet Vision 3D show when a 3D fly puffed up like a balloon and then exploded (it was going so well up until then!) We didn’t actually have to leave the theatre, but he was clearly traumatized, and spent the next hour complaining that Muppets are evil (sigh).

Then later, as we were leaving the park, a girl walking next to Justin had a balloon animal and a stick, and she kept popping the pieces. To his credit, he didn’t flip out; but he did have to walk with his hands over his ears, and he was quite relieved when she finally put the thing in the garbage.

The balloon phobia reared its ugly head again at dinner time. A very talented balloon artist was making the rounds of the restaurant, creating extraordinary animals for the kids. The sound of the twisting balloons was clearly bothering Justin (who, like so many kids on the spectrum, has super sensitive hearing). Again, he didn’t melt down, but he covered his ears and looked quite uncomfortable. Then the guy arrived at our table and offered to make animals for the boys. I’m sure Brayden would’ve liked one, but he knew that was a no-go. We just explained that balloons make Justin quite anxious; the guy apologized and left, and Justin could finally relax. Whew.

Despite all that, we did have a good day. We walked on to our first three rides with no waiting, then had lunch at ESPN Zone and let the boys play in the arcade for a bit. Then came the unfortunate Muppet experience, but we recovered by riding Monsters Inc, having some ice cream and doing Splash Mountain (which was especially nice as the temperature was well above 30). Harmony was restored.

Chris and the kids are shopping right now (back to the Lego store!) and then I think they might hit the pool for a bit before bed. One more day…

My Amazing Aspie

Maybe Justin’s been right all along. He normally has a social skills group once a week and occupational therapy every other week, and he’s always asking when he can stop doing those things, and I never really have an answer. But due to various circumstances, he hasn’t done any of it since March…and he’s been fine. I even witnessed him compromising with a friend the other day without getting upset or needing any intervention. Amazing.

It really is amazing when you think about how far he’s come. I was re-reading his Asperger’s diagnosis report the other day, which was done when he was five, and which noted that his processing speed seemed to be way below average. Compare that to the academic testing he went through a couple months ago, in which he proved to be gifted in 9 out of 13 areas, including processing speed. Four years ago he was paralyzed by anxiety and in a near-constant state of meltdown; since then he’s had so much help and support that his true nature has been allowed to come through.

On the other hand, he did flip out the other day when I announced I’d booked a surprise trip to Disneyland (we leave in 12 days — yay!) He insisted he didn’t want to go, that he would stay here with his grandparents instead, and that he didn’t want to miss out on three days of school. After a couple days of listening to his whining, I sat him down and calmly asked him the obvious question: “Don’t you think that three days at Disneyland would be more fun than three days at school?” He thought about it for a second, and it was like it finally dawned on him that he was actually going to have a good time. The things you don’t think you need to explain (sigh).

Bringing Order to Chaos

Sometimes it hurts to be an obsessively organized type A personality. Particularly when you are the mother of boys who are organizational train wrecks. I just don’t get how they can be so clueless. A couple weeks ago Brayden came out after school wearing his toque and mitts — but no coat. Another time Justin wandered out without his backpack. Argh.

Justin’s lack of personal organization is the major issue in his IEP (individualized education plan) right now, which is actually good news, since it means he’s conquered the toileting and social skills challenges he had for so long. (And if they figure out how to get him to keep track of his stuff, maybe they can tell me how they did it so I can try it with Brayden. Argh.)

Actually, a lot of positive stuff came out of that IEP meeting. His teacher wants to send him for some academic testing so she can get him into some sort of gifted program, which sounds pretty cool. Anything that will keep him challenged is good. (He’ll certainly need better work skills, but that’s a whole other issue. The pitfalls of having everything come easily…sigh.)

As the control freak in the house, I do what I can to keep everybody on track. But will they ever learn to do all this for themselves?

Don’t answer that.

Give Some Special Kids a Very Special Summer

easter seals logoI’m gearing up once again for the Easter Seals 24 Hour Relay. Our team has a new name (The Full Spectrum) but the same mission: to run relay style for 24 hours in support of Easter Seals camps.

Every year, over 200 kids with physical or mental disabilities come to Easter Seals Camp Winfield to have the best week of their summer. Easter Seals aims to create a place that allows campers with special needs to celebrate their abilities, try new things, make friends and have a lot of fun.

Many campers look forward to going to camp all year long –- it’s an amazing place where they focus on each camper’s abilities rather than their disabilities; where independence, self-esteem, and self-confidence are encouraged and supported by camp staff throughout the week.

This cause is very personal for me, as my eight-year-old son has Asperger’s Syndrome and will be attending the camp again this summer. Please sponsor me and help give many more kids the chance to have a great summer camp experience!

Click here to make an online pledge. All online donations will automatically receive an electronic tax receipt.

It’s fast, it’s easy, and it makes a big difference.


Will the Real Justin Lee Please Stand Up?

I was hoping to be able to say that Easter Seals gave my son the best week of his life, but the jury’s still out on that one. He’s been Mr. Manic since he came home — huge giggling fits followed by some truly epic meltdowns. His counsellors tell me he was a model camper, always respectful of other people and always willing to take on a new challenge…so maybe the stress of holding it together for five days is just working itself out now. I dunno. He seemed much better this afternoon, so there is hope.

Tonight we hosted a BBQ for our Asperger group, which went amazingly well. After all of Justin’s craziness over the last couple days, we wondered how he would handle the whole thing, but he and everyone else did great.

This week Justin’s in a science camp at the college while Brayden does another preschool camp, then next weekend we’re off to the Great Wolf Lodge. Things are hopping…

Our Little Camper

It took over two hours to get Justin checked in and settled at camp, but it wasn’t so bad: we knew a lot of the other families and we were free to wander, chat, and play while we waited (the boys really just sat in the rec room watching a movie). Justin had a few anxious moments last night and this morning, but nothing big, and once I took him through the camp’s website and showed him all the cool stuff he would be doing he was pretty stoked. As luck would have it, three of the five other boys in his buddy group are kids he knows, so it worked out just about perfectly. He was headed for the pool when we left — awesome.

And having only Brayden to watch seems like a bit of a vacation. I feel bad admitting that a load has been lifted knowing that I don’t have to deal with Justin (or with the two of them fighting) for the next five days. We might even get a break in the mornings — Justin is almost always up at the crack of dawn, but Brayden can sleep longer. This could be good.

Travel Bug

OK, I know we got back from Europe less than three weeks ago, but we’re already looking ahead and planning some getaways. We’re taking the boys to the Great Wolf Lodge for the August long weekend, which will be their first trip to the States, so that’s cool. And naturally we’re going to Saskatoon just after Christmas (as in Boxing Day), so I booked those flights. My mom actually offered to give us a bunch of their Aeroplan points if it would help us out with flights — the points are useless at Christmas, but I did a little checking and discovered they do work for four round-trip tickets on a brand new non-stop Kelowna-to-Los Angeles service (I STILL can’t believe there’s going to be a direct flight from here to LA!), so we are off to Disneyland next spring. And thanks to the points, we got those four tickets for only $359 in taxes. You just can’t beat that.  (Thanks again Mom and Dad!)

Tomorrow we drop Justin off at the Easter Seals camp. He doesn’t seem to be anxious about it and his BI has done some prep work with him, so I think it’ll be OK. I kind of wish I could be a fly on the wall for part of it, just to see what really goes on, but I guess what happens at camp stays at camp. Apparently his counsellor will call me after the first night to let me know how he’s settling in, so that helps. Here goes nothing.