Special Needs

So, do you watch Parenthood? If you have kids, you really should. I was totally brought to tears last week with the storyline involving Max (the character with Asperger’s) befriending his classmate in the wheelchair. To me, it was like once they gave him a break from having to try to fit in with the typical kids, he was able to find someone he really connected with. I cried. A lot.

We recently had Owen’s three-year IEP review with his school – you review and update an IEP every year, but the three-year is where they do testing and observations to make sure the kid still qualifies for special education services. We didn’t think much of it really since we knew he’d still qualify for services.

The outcome was a little surprising, though, in that they recommended that Owen move from receiving level 2 special ed services to level 3. (Think of typical kids as level 0s) It means that he needs more help than he’s been getting.

On the one hand, this seemed obvious, knowing the trouble he’s had since starting third grade. On the other hand, this isn’t what I wanted to hear. I don’t know whether this is common or not, but ever since Owen was diagnosed and it was clear that he was on the high-functioning end of the spectrum, the people (“the experts”) we've talked to have always given us a pep-talk of sorts along the line of “he’ll be fine.” More than one person has said things to the effect of, “He might even outgrow his symptoms.” And I guess this created an expectation within me that all of this special ed stuff was only temporary…that we didn’t really need to go too far down that road.

I now realize that I was placing that expectation on him and that it was unfair. Really, it’s wrong for people (experts, even) to use that as some sort of carrot. Like, that’s what we should be looking forward to…the day that he can fit in. The day his autism isn't so much damn trouble. And I worry that it was that mentality that finds us here now, at age 8, putting him into the center-based autism program with the autism specialist, when maybe he could have been benefiting from it all along. Maybe things didn't have to be so hard.

I worry, you know. I worry about everything. But in this case, I worry that we should have known to do this sooner. I worry that I've been resisting the special needs realm (getting by with only the bare minimum of help) because I equated it with lower expectations and I never want anyone to expect less of him than what he is capable of. I know that sounds really small-minded of me and I thought I’d gotten over the label thing years ago. Obviously I know that “special needs” does not equate “lower ability,” as I gave birth to the counter evidence, but I’ve still been afraid that many of the programs are geared toward the lowest common cognitive denominator – which, maybe in some cases, they should be – and so I’ve never really felt like we belonged there.

I had a glimmer that I had been thinking about this all wrong just a few months ago when, after a frustrating experience with the local ski school last year, we enrolled him in the adaptive recreation ski program offered through our city. I began to feel relief just filling out the registration paperwork. Questions like, “Describe your child’s conversation ability” and one the choices was “Limited, except for topics he chooses.” And “Describe your child’s ability to cope with stressful situations.” (Seriously, I think they should ask that about all kids.) And he ended up getting one-on-one ski lessons with a teacher who seemed to have unending patience and positive words for him.

This is all to say that trying to hold him accountable to expectations set for people with neurotypical brains isn't asking him to aim high – it’s asking him to develop coping mechanisms rather than helping him hone his innate abilities. So we're trying this new thing and we’re not going to let anyone have lower expectations of him; we’re just going to create realistic expectations and then actually give him the help he needs to meet them.

And hey, maybe along the way, he’ll make some friends who have similar ways of viewing the world...or at least a similar obsession with Pokemon. And maybe that will be exactly what he needs. And it might also be kind of special.