One of the main adjustments I’ve had to make since finding out about Justin’s Asperger’s is upping my patience level significantly when dealing with him. I’m sure every five-year-old asks a million questions, but it’s so exhausting to have to answer hundreds of queries about things that to me are blindingly obvious. I know that they’re not obvious to him, that he doesn’t just “get” things, so fine. But even a basic factual question often turns into a conversation like this:

JUSTIN: What day is it?
ME: Friday.
JUSTIN: What?
ME (slightly louder): It’s Friday.
JUSTIN: It’s Friday?
ME: Yes.
JUSTIN: Why is it Friday?

Note that in the above example, he said “what?” not because he didn’t hear me, but because it takes him a little longer to process my words, and “what?” is just a knee-jerk reaction. Half the time when he does that, I just repeat his own question back to him, and he already knows the answer. Argh.

I didn’t need the psychologist to tell me this kid is hyperverbal and hyperlexic (meaning he talks way too much and reads way more than he can understand). Words words words…

Someone once compared parenting to walking a tight rope blindfolded — one misstep can mean disaster, but you just have to trust your instincts and hope things turn out okay. It’s always somewhat easier when you can just do what your own parents did, or what your best friends are doing. But with Justin’s diagnosis, we’re in a whole new world. The more I read about Asperger’s, the more I discover that many of the standard parenting techniques we’ve been using for years are just flat out wrong for kids with this disorder. In particular, these kids don’t learn from consequences, so giving timeouts, taking away favorite toys, promising them rewards for good behavior…none of that works. Even standard assumptions about human behavior don’t apply to them, since they see, feel, understand and act unlike the rest of the world.

Their meltdowns are not attempts at defiance or cries for attention. Justin is a child who doesn’t understand the world around him. He doesn’t learn from observation or social osmosis. If it’s not explicitly explained, he just doesn’t get it. Not knowing the unspoken rules of different situations causes anxiety, so he creates his own set of rules to keep things more predictable and understandable. For him, every day is an attempt to find order in chaos — and when that chaos gets too overwhelming, he loses control.

All Asperger kids need structure and routine, and all of them rely on rules, but Justin is part of a subset that needs to know the reasons behind the rules before he’ll be okay (hence the 600 questions he asks every day). He wants to know why something is done a certain way, and the explanation has to make sense to him. If it’s too arbitrary (”Because I said so!”), or if your logic doesn’t make sense to him, he won’t listen, because he has his own reasons and explanations for things, and he figures his opinion is at least as good as yours. I foresee lots of fun in the teenage years.

The point of all this is that it’s a very big task to come up with a brand new set of parenting techniques. It’s scary to think that we’re venturing out as pioneers. We don’t really know what we’re doing, but we’re doing it because we love him, and that has to count for something.

Recently I experienced two epiphanies, one that left me feeling relieved and the other that gave me a huge sense of dread. The relief came from my discovery that there is actually a strong link between autism and potty training problems (so it’s not just my child! so it’s not my incompetent parenting! so there might be an explanation for this mess!) That was followed closely by a sense of dread as I realized there’s no way to predict when he will ever get this under control. I’m reading stories of autistic kids who are seven, eight, even 10 years old and still untrained. Please please please don’t let that be my child.

It’s so very frustrating because all the gains we made last month seem to have evaporated, and we’re nearly back to square one. I read somewhere that autistic kids are the most difficult ones to train, and knowing that does make it a bit easier. But no one wants to do diaper duty forever. I get an ulcer just thinking about kindergarten starting in September.

I need a drink…

The verdict is in, and it’s not a surprise: Justin has Asperger’s. It’s a neurological disorder that will never go away (his brain is just wired differently) but it can be managed, especially if we start young. I didn’t expect to get the diagnosis as quickly as we did, and in fact the psychologist said they don’t usually diagnose Asperger’s until kids are a bit older, but in Justin’s case it was just manifestly obvious. That’s actually a good thing — it’s nice to have a label for it aside from “autism” (even though it is on the autism spectrum), cause people have preconceptions of what autism is, and Justin doesn’t really fit that mold.

Some of the good points that came out of the assessment process: his reading, spelling and number skills scored at a third grade level, he doesn’t have any motor skill or sensory challenges like some Asperger’s kids do, and his overall language skills are pretty close to normal for his age. He still has social language issues (he needs to learn how to start, maintain and end a conversation, and not interrupt people) as well as social interaction challenges, but he’s bright and keen to learn, so the outlook is good. One book I read says these kids tend to do phenomenally well once they get to university, since universities foster creative thinkers, but the journey through the mainstream school system can be tough. He’s entitled to a support aide in the classroom and there’s funding available for therapy, so at least there are resources out there. And hey: Einstein had Asperger’s, and he certainly left his mark on the world.

At least that’s usually our motto. We finally joined the 21st century and bought an iPod Touch about six months ago; it’s been such a hit with the boys that we ended up buying two more to meet our household demand. In some ways it’s great: it’s very portable, it stores all kinds of songs, games and videos, and (best of all) Brayden is more than happy to stay in his room with it for an hour or so for some “quiet time” after lunch. The downside is that Justin is addicted to one particular game that gets him upset every time he plays it — but he gets equally upset if you don’t let him play it, so it’s a no-win situation. We were in Saskatoon for a few days last week and the iPods were a great thing to have on the plane and in the airports, but by the time we made it home I was ready to smash Justin’s into the wall. Sigh.

Frustration levels are high when it comes to Justin these days. His meltdowns are getting more frequent and more unmanageable, and it’s taking more patience than I possess to deal with him. We now know a lot of his frustration stems from his perfectionism — he gets very upset if he’s playing a game (mostly on the Wii or the iPod) and he doesn’t win. He’s also more likely to lose it if he’s hungry or tired, naturally, so we have to be vigilant about giving him snacks even when he says he isn’t hungry, and giving him time to rest even if he says he doesn’t want a nap. He goes for his Asberger’s assessment in about three weeks and I’m really hoping to get an official diagnosis soon so we can start getting him the appropriate help. The kicker is that he behaves just fine for preschool, for babysitters, for Grandma and Grandpa…but he goes squirrelly at home. I know that’s probably a good thing — at least he can control it when he needs to — but it’s very, very, very frustrating.

On the up side, potty training is going better for both boys, so that’s a major step forward. On the Saskatoon trip, Justin actually started telling us he had to go (which I thought would never happen). On a visit to Uncle Rob’s house I heard him go down the hallway asking “Is there a potty around here someplace?” and I just about fell over; he also asked to use the potty on the plane. Hooray! For his part, Brayden has given up the special potty seat and now uses the regular toilet like everyone else. I’m starting to believe my life won’t always involve diapers, but we still have a ways to go, so I won’t get too excited yet.

Both boys are at Grandpa’s house this morning…ahhh…

We’re back into the swing of things around here after our trip, although I’m still having sinus problems and I’m starting to think it’s an infection (sigh). The boys are feeling better and everyone is at least getting enough sleep, so that’s positive.

We’ve suspected for a while now that something was different about Justin, but we had to wait six months to get in to see a pediatrician — we finally had the appointment the day after we got back from Europe. Anyway, he thinks Justin has Asberger’s (a sort of high-functioning autism), which we had kind of concluded anyway, but now we have to start the long process of getting him officially diagnosed, which requires a psychologist and a speech pathologist and God knows what else. If he does get the diagnosis, then a world of resources opens up for him, so I’m anxious to get this done, especially since he starts kindergarten this fall. We’ve always said Justin’s a lot like my brother Rob, and once we started digging into Asberger’s we realized Rob very likely has it too. Huh.

Brayden is doing great and continues to move like a flea on speed (that’s my new favorite phrase for him, since it describes him so perfectly). He’s talking a lot more now and amazes us with his whole word recognition — it’s not exactly reading, but he recognizes words he’s seen before. He knows his alphabet and can count to 10, which is good, but since Justin was counting to 40 at this age our standards have been set a little high. He begs to go to preschool whenever Justin goes, and fortunately I have them both signed up for some preschool summer camps, so we’ll see how that goes. Brayden will start preschool twice a week this fall, and Justin will be in kindergarten every morning — I’m going to have so much time on my hands that I won’t know what to do with myself. I’m not looking to get a job, but I suppose I’ll have to do something to stay occupied.

We’re off on our annual Saskatoon trip in a few weeks. Rob and Janettte’s baby is due shortly after we get back to Kelowna, but I’m sort of hoping she has it early. Otherwise we won’t see our niece/nephew until at least Christmas. But the important thing is for everyone to be healthy, of course, so we’ll see how it works out.

A mom I met recently mentioned that her almost-four-year-old son is obsessed with the alphabet, so naturally we got to talking, and after hearing me describe Justin she recommended I read a book called The Einstein Syndrome: Bright Kids Who Talk Late. I couldn’t believe how bang-on it was. Everything matched: the late talking, the late potty training, the early reading, the incredible memory, the affinity for music, the computer aptitude, the late social skill development…I could go on. After reading the book I felt better just knowing that there ARE other kids like my son, although I still don’t know how to get him to master the potty. But at least he’s not alone, and that’s a good feeling.