Good Labels

I just read this and it really gets me going.

I have two sons who have, at different stages, been diagnosed with sensory integration dysfunction (SID). Some medical doctors (including the ones who first evaluated my eldest) don't even believe SID exists. Suffice to say, it's on the autism spectrum, which includes everything from autism as most of us understand it, to Asperger's syndrome, to Pervasive Developmental Disorder, and so on.

Is Jett Travolta autistic? I certainly have no clue. That he is a celebrity's child puts him under the crosshairs my kids won't ever have to endure. But the notion, whether true or embellished, that he is being denied intervention(s) that could help him, is really troubling to me. I worry more about that than whether it's because his parents are famous, or because they are Scientologists.

I attended a seminar recently where a clinical researcher stated that, in my state, the average age that a child with autism is diagnosed is four and a half years old. It boggled my mind. Knowing about the golden "birth to 3" window, how can it possibly be that we are missing the signs? Those are the kids being evaluated by private doctors. If you are relying on your public school to identify autism, add another year and a half. That's 6 years old, twice as old as the experts recommend in terms of early intervention.

This is a struggle I have had for some time now. I remember when my eldest began speech and occupational therapy, and several people warned me, "You don't want him labeled as a special ed kid." Huh? Deny my child what he needed to progress, because of vanity or some pretense that he didn't need anything? Fast forward to another conversation I had with a former Catholic school teacher, whose son has the same issues. She did not reveal any of her son's issues on his application to (parochial) school, because she said that she knew how those kids were treated, and she didn't want her son to fall into that category. Why would you put those teachers, much less the child, in a situation where everyone is pretending there are no learning issues?

I am lucky. Both my sons function in the "real world" relatively seamlessly. But even so, I'm not hesitant to acknowledge the issues they went through, even if it's been a blip on the longer term radar screen. And at a minimum, we have availed them to every possible avenue of help.

I am also lucky because, as fate would have it, I happened to collide with parents and therapists about the same time as I began to sense something was amiss with my child. So the whole notion of interventions was a lot less foreign and scary, though I've lost a lot of sleep over the years about where we'd end up.

Labels or not, I can't help but advocate that children be given every opportunity to rise above developmental hurdles. Sure, most of this was not on the radar of my own parents -- but neither was cessation of smoking and drinking during pregnancy, benefits of breastfeeding, and use of carseats. Would we really go back to a time where we simply called kids "quirky" and hoped they fit in at some point?