He seems normal

posted by Jeff | Tuesday, May 20, 2014, 9:39 PM | comments: 1

This is a post I've had on my mind for a very long time. I've resisted writing it because right about the time I'm ready to, I'm pissed off and angry. I can probably explain this better when I'm not tweaked. Although, writing about it makes me a little tweaked.

Let me do a quick review. Simon has been diagnosed with Sensory Processing Disorder (SPD) and dyspraxia. Essentially that means that his brain doesn't always take input in the right order, creating a drag on the development of his motor skills. It also means he tends to seek more intense sensation, which contributes to the hitting and pinching he does, and why putting him in a beanbag or wrapping him in a sleeping bag chills him out. He's also been diagnosed with Autism Spectrum Disorder (ASD), though the people who have evaluated him generally don't observe cognitive delays, just the range of social, communication and repetitive behavior issues.

The genesis of all of this came out of concern from his pediatricians, that he exhibited certain markers for developmental delays. That's when we got the Help Me Grow people helping him out in Seattle, and subsequently the Birth-to-3 Intervention in Cleveland. It's why he's in preschool now.

Understand that we're the kind of parents frustrated with all of the helicopter parent, participation trophy bullshit that seems to dominate the world of children today. I can't stand all of this crap around making every kid special and shielded from adversity. That's not to say we haven't helped Simon where he should have flailed a bit. We shouldn't have helped him as much as a baby when it came to rolling over, for example, and helping him get shoes on just because we were in a hurry didn't do him any favors either. But for the most part, we're OK with him experiencing difficulty and learning from it.

But here's the thing, if professionals have diagnosed specific problems with his development, you better believe we're going to do everything we can afford to do in order to get him caught up. Who wouldn't?

So when someone spends a little time with him, and says something like, "He seems normal to me," it pisses me off. You're not qualified to make that assessment. Autism doesn't mean he's like Rainman. It means that his brain is simply wired differently, and we have to figure out what that means. Your perception is irrelevant compared to the opinions of professionals with degrees and clinical experience. You know that reflex test doctors do, when they tap your knee? His leg doesn't move. The kid can't draw a circle and just now is learning to catch a ball. He's not hitting people because he wants to be a dick, he's doing it because that intense sensation is what his brain needs. Don't tell me what "normal" is. That comment is offensive, because you're invalidating all of the information we have that led to us deciding to get him therapy. Don't imply we don't know what we're doing or that we're being over cautious. You don't know. Conventional wisdom doesn't work with a child who has no use for convention.

I love Simon, in a way that I don't think anyone really understands until they have a child. We constantly struggle with the balance of rolling with things and providing for him, always hoping we're preparing him for life and that he's learning at every turn. We're in a race to get him prepared for kindergarten on time. We see the seeds of extraordinary cognitive ability inside, but the differences in how he's wired definitely come with challenges. Diana in particular spends most of her waking moments working with these challenges.

So please, don't judge us, and don't judge my kid. His normal isn't your normal. We accept the differences, because pretending they don't exist doesn't do anyone any good. We embrace Simon for who he is, because knowing that truth is what allows us to serve him best.


Jennifer Emberg

May 20, 2014, 10:40 PM #

Perfectly put Jeff as only you would write.
People try to be nice and say what they think is the right thing to say. It'll continue for many years to come. I look forward to reading more about yours and Simon's adventures. He'll have such an advantage having parents that love and support him and his special learning needs. You can learn a lot from the parents who have been there/done that. Some parents can be extremely in your face about things but trying to take away helpful bits of information from them is still a good thing to do.
I know you'll totally get Simon up to where he needs to get to for his kindergarten screening!

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