Special needs

Folks who've followed me on Twitter for awhile (and not sure how else one would find this blog, really) will know I spend every spare second I can hanging out with my son, who turned nine a few weeks ago.

I'd imagine all parents will say this, but he's quite something.  He's smart and funny and imaginative and writes constantly, reads well above his grade level, and has a better memory than anyone else I know.  He reminds me in turns of his mom, in his love of cats and taste in music, of my father, who forgot nothing ever and always seemed to have a smile on his face, and, sadly, of me, with a dreadful temper and no attention span to speak of.

He is also on the autism spectrum with an ADHD diagnosis.

It's amazing how awkward that discovery was--for quite a long time my wife and I made excuses.  He was a little young for his age; he was undersocialized; he was cooped up all day and had trouble concentrating on things.

But eventually it was inescapable--too many people we trusted told us we had to get him tested, and we plunged into a much busier world.

My father, from whom my Little Guy gets his memory, died when my son was a toddler.  He was a talented and respected psychiatrist, and one of the people who insisted that there was nothing whatsoever wrong with my son.  I listened to him, probably for too long.  But, days before his death, I'll never forget, he told me that he had thoughts on what we could do.  He just needed to get through his cancer treatment, and then we would make progress with my son, he promised.

Then the surgery went wrong, and weeks later I was standing in a room, listening to people say nice things about my father, and at a total loss as to how to find someone, anyone, to diagnose my son, let alone what treatment to pursue.

I'll write sometime--not today--about the grief and its recovery; I'm sure others have more eloquent things to say about it than I ever could.  But for today, let me stay on topic.  Once an autism diagnosis is suspected, you have a bunch of different roads.  In New York City, the education system theoretically sets up evaluations of children with special needs; but getting to the evaluations requires more time and effort than many working families can possibly put in.  We did it, somehow, running around a couple of different boroughs to different places.  Uber got a lot of business from us, since taking my son on the subway for hours was more than I could bear.  And even once we did get acknowledgement from the Department of Education that my son had special needs, getting the accommodations was impossible--we would have had to take time off work, not an option in our jobs, in order to get to the places they needed us to be.

Private routes and family connections proved more promising.  My brother, following in my father's footsteps, had become a psychiatrist as well, and my sister a psychologist, and through them we were able to track down some good people, but even with my siblings' trusted insights, the number of different recommendations--Does one medicate for ADHD?  Enroll him in soccer to burn off some energy?  Travel 90 minutes each way to a speech therapist someone recommended?  Sign up for weekend occupational therapy?  Find a sitter with experience with special needs and pay a premium or take your chances with one who doesn't have as much experience?  Move him to a special ed school, or keep him in the regular school?

Every step of the way, there are decisions to be made, pros and cons to be weighed, choices that might ultimately affect his life, for good or for ill.  All too often, I know, we've made the wrong decisions.  Hopefully some of them have been right; I don't really know.

And hopefully love, which my Little Guy always has in abundance, both to take and to give, helps.  Sometimes it's all we have to count on.

Special needs are hard, is I guess the point.

But the other point is that they're hard for me, with siblings who know more than I can imagine knowing about special needs, with decent health insurance that pays, so far, for whatever meds the psychiatrists have recommended, including insanely overpriced ones, and with a wife who is a lawyer who is happy to write threatening letters to anyone she thinks is not treating my son right.

If they're hard for us, what must they be like for people who don't have those resources?

When we talk about the healthcare crisis in this country, we should remember that it's a crisis. It eats families, wrecks lives, destroys what it can.

But not my Little Guy. Nothing destroys him.

Off to go make his lunch now...

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