I wrote this back in August 2012. It needed to sit a while to take the edge off. I couldn’t even read it to edit it.

-Rick

 

Recognizing it: 

I just watched the Seattle Children’s Hospital “Stronger” video. It took me a while to recover from the emotion of the first 41 seconds. I started crying at 35sec and then stopped the video a bit later. I just couldn’t take it at all.

It’s incredibly hard for me to watch that because some days I’m really worried about my son — what his day will be like, the next week, the summer, next year, maybe the first day after trying to transition to a mainstream class. I think about the things that no parent like me ever wants to say out loud, and I’m not sure I can even bring myself to write them down here, as if saying them gives them substance or makes them real, like a modern day version of “he who must not be named” from a Lovecraft novel or 18th century euphemisms for the devil.

But I’m going to try. The only thing that makes me think it’s okay to do this is that first, I’m writing this right now where it won’t even accidentally be seen (unless someone hacks the hell out of my dropbox) and second, even parents of kids on the spectrum don’t talk about these fears to each other, not in coffees, support groups, school meetings, or anywhere else. We’re all captured by the same fear. And part of this very quickly becomes recognizing that as much as I might feel one set of concerns for my child, there is a parent right next to me, of someone who goes to his school or that I’ve met elsewhere, who has the same fears or worse. It’s like a real-life version of Larry Sanders asking about the “good Hodgkins.” It all sucks. The bad just sucks worse.

So run down the list of fears:

I think about a friend’s neighbor, whose 30-something son wandered around the neighborhood all day, semi-literate, not capable of conversation or interaction beyond the most basic instructions. What was that guy aware of as he tromped around the block? Did he even know what state he was in, how perilous his life really was? What will happen to him when his mother dies? Will there be a kind aunt or uncle, or brother or sister to make a home for him? Or will he end up in the hellhole of some state institution, waiting everyday to see if he get punched, slapped, drugged into a stupor, or raped?

Yes, I’m writing about someone I barely have even seen. It’s way easier. I can’t put the names and faces of children I know into that scenario.

Will one of these kids be left on a bus to dehydrate and die? Will one be locked in a room, tied to a chair, left to piss his pants or shit her underwear? The same bastards who think keeping a terrorist awake all night is evil incarnate will be damned if they’ll see a teacher (only a teacher by technicality of course; those people aren’t deserving of the name) get fired for this abuse.

I wonder what goes on in Dylan’s head. Does he sense when things are hard for him? What does he think about that? Does he wonder why some answers are easy (spell kangaroo) and some are hard (why are you sad?)?

Dealing with it:

I’ve said for a long time that I’m okay with Dylan’s troubles for four reasons:

1. He’s not going to die.
   2. He’s not in pain.
   3. He knows I love him.
   4. I know he loves me.

Those came, selfishly, from thinking about someone I knew who had a little girl with CF. Even with advances in treatment, they expect that she might make it to 30. There’s a little girl with a whole lot of shit on the road ahead of her. I figured as bad as my son’s path might be, he wasn’t looking at that.

Economists tell us that you stay happy by looking down, not up. Don’t look at the $8m house on the hill, look at the $1500/month roach-infested walk-up in the East 140s and then evaluate your life. So I realized that if all I did was think about the kids who seemed to have no problems, I was destined to screw myself, and my son, out of that happiness. But at the same time, I feel guilty for looking at the kids in that video and thinking about how much better off my son is. I know, though, that there are plenty of parents with children who died, even as adults, and plenty of would-be parents out there who can’t have kids, and say to themselves that they would gladly have a sick child, or adopt one, if only given the chance. And then there are people who never quite get their life into the spot where they get the typical choices about kids. Maybe they regret those things; I don’t know.

But I do know that at least some portion of my tears comes from wishing that no child had to serve as the worse-off-than-my-son example. And I feel ashamed for even writing this down because I think of one little boy and his mother on the other side of the country who are fighting a much different fight than my son. 

We’re all afraid of things. Some real – heart attacks; some distant – terrorists; some vague – the lizard brain’s resistance to change; some too real and terrible to ever really be acknowledged. This post is about that kind of fear.

Another parent (and here, “parent” is a term of art meaning a parent of a child on the spectrum) pointed me to this woman’s story of her son’s journey from diagnosis and early intervention to a special education preschool to transition to a general education environment. 

I don’t know what your reaction will be. But I can bet. I will bet that if you just have kids, you’ll think it’s vaguely sad and worry instead about having to drive your kids to play dates and manage soccer games and basketball practice and where they learned those terrible words that you never say. And I will bet that if you’re a “parent,” you’ll cry at the end, especially if your child is younger than this 11-year old. I did.

 

Why write this? Because what parents of our kids think about seems so fundamentally unknowable to our friends and family. Because we seldom talk about it to each other, to their teachers, therapists, to their doctors and lawyers. Because this is the stuff that no one on Facebook wants to hear about (and those who mention a tough time — well, only the parents really understand that it’s never just a temper tantrum, that every little outburst or hiccup carries all this BAGGAGE – a bundle of fears stuffed inside.