List of Obsessions

Lots of kids develop serious interests in a certain area, but kids with Asperger’s give new meaning to the term “obsession.” Justin gets so intensely interested in a subject that it colors every thought and conversation that he has. The fact that the people around him are all bored stiff by that same subject makes no difference.

His obsessions have ranged from his classmates’ names to Pokemon characters to sports figures. His latest one began when he was assigned a family tree project at school a few months ago (curse you Mrs. McAndrew!)

The kids were supposed to document at least 12 names on their chart. Justin is currently at 762 names and counting. He knows every detail of every marriage, birth and death in our family for the last 400 years, and he never hesitates to share that information. If I hear him talk about one more long-lost cousin, I will throw up.

I should also note that Justin writes lists. Endless lists. Piles and piles of lists. The kid is a serious threat to our nation’s forests. Early on we tried to redirect him by hiding the scrap paper, but he scribbled on his own arm, on his walls, even on my blank cheques. He used his finger to “write” on the carpet. He made letters out of PlayDoh. The guy needs to write.

So today I noticed a few lists of animal stats next to a book of facts about wildlife. A little while later Justin sat at the table with that book and read random facts out loud to me. I thought the tide might finally be turning. Could we really be over the whole family tree thing? Please God?

“A sperm whale can live up to 70 years,” Justin announced. Then he paused and looked up as if a thought had suddenly struck him. I held my breath.

Then he reached for a piece of paper and added, “Let’s put that on a family tree.”

So close.

Through Aspie Eyes

You would think that after years of living with Mr. Literal, I would have learned not to assume he instinctively understands what most people instinctively understand. That I would realize he takes me at my word, not my meaning. That I would know to explain all those truths that seem self-evident.

But sometimes even I get tripped up.

The other day I was talking to Justin about the cruise we’ll be taking next winter. I showed him the deck plan of the ship and pointed out where our cabin was on Deck 2. Then I showed him pictures of all the cool things on the ship: the mini golf course and basketball court on Dec 12, the waterslide on Deck 13 that goes off the side of the ship and through one of the funnels, the freely available ice cream bar on Deck 11.

I thought he’d be thrilled, since he loves all that stuff. But he just looked glum.

“So is there anything cool on our deck?” he asked.

Then it dawned on me: he thought we weren’t allowed to go to any other part of the ship. He thought we were stuck down on Deck 2 while all the fun stuff was way up on top. Fair enough — he’s never been on a cruise ship. He doesn’t know how it works.

“Dude, the ship is like a hotel. You can go anywhere you want,” I pointed out.

His face immediately brightened. Then he stood up, wagged his finger in my face and said with a smile, “You didn’t tell me that.”

The things you don’t think you have to explain.

Beyond the Special Needs Label: Boys Will Be Boys

We’ve always been up front with the kids about Justin having Asperger’s. Justin knows he’s wired differently. He has even accepted that Asperger’s is considered a disability.

Early on, when Justin was in a special program to help him learn social skills, Brayden wondered why he didn’t have to go to the same program. We explained that Justin needed extra help to learn some things that Brayden already knew how to do (talk to people, make friends), just like Brayden went to speech therapy to get extra help with some things that Justin already knew how to do.

Later, Justin would say something brutally honest, not out of spite, but because it simply didn’t occur to him that someone would take offence. (“Not every honest thought needs to be expressed” was a tough lesson to teach.) So we’d have to explain to Justin that the words we say actually do affect other people, and then we’d have to explain to Brayden that his brother’s brain just works differently.

Sometimes that means cutting him a little extra slack. Like the time we were in a restaurant in Disneyland and a guy was going around making amazing balloon animals for the kids. Brayden LOVES balloon animals, but balloons make Justin anxious, so Brayden knew he wasn’t getting one. Them’s the breaks.

But there’s more to a person than some label. Just because Justin has Asperger’s doesn’t mean he never behaves like a typical kid. He’s perfectly capable of pushing Brayden’s buttons and acting like the big brother he is.

Brayden explained his perspective to his teacher the other day:

BRAYDEN: Did you know my brother is really annoying?
TEACHER: (amused) No, I didn’t know that.
BRAYDEN: He has Asperger’s. That’s a form of autism.
TEACHER: So what does that mean?
BRAYDEN: It means he’s more annoying than most people.

Because he has Asperger’s? Or because he’s your brother?

As if it matters.

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…