Happy New Year, and welcome to my coming-out party. Today I’m publicly declaring myself to be the father of a disabled child. Sounds easy; it isn’t.
My 4-year-old son, who will be known here as DarMar or just Dar, was diagnosed at the age of 12 months with cerebral palsy, and at 24 months with autism. The two years since the latter diagnosis have only confirmed its accuracy.
Before we continue, let’s get all the pity party jokes out of the way. I make them myself. If this is all whining to you, the off-ramp is just under your clicking finger. No one’s begging you to stay.
Still here? Awesome. You, I like. You, I want to show you WHAT it’s like.
There will be time, in future posts, to take you through the long tortured history of how we suspected, what we thought when we learned, what we did, what we read, et cetera. Oh yeah, you’ll get an earful of that with the requisite basket of fries.
But for now, I just want to give you a little snapshot of my family, and also try to explain why I decided to begin this blog.
DarMar doesn’t speak. He doesn’t seem to understand much of what we say. In the lingo of our universe, he has poor “expressive language” and “receptive language” skills. He also doesn’t “pretend play” – he doesn’t treat dolls or toy cars with affection or “appropriate” manipulation. Scarier than Wes Craven is the fact that this situation has barely improved in the two years since he was diagnosed.
Two years ago, at the age of two, he had never pointed to anything. Now he still doesn’t, but at least he has weird ways of indicating things, sometimes by stretching his hand and flipping it in the general direction of the desired object. A year ago he didn’t know how to grab what he wanted. If something was out of reach, he would just scream, and my wife and I would bring him things until something calmed him down. Now, if we’ve left it in reach, he can grab it; if not, he comes to get us and hold our hand to bring us to most things he wants. When he can be bothered to want something.
DarMar still doesn’t proactively say what a thing is, nor does he say “I want” or anything close to that, unless strongly, strongly prompted. This is true of just about all of his words, including “mama,” and “daddy”: they only come through detailed prompting, to the point where they’re really imitations. Not that we take imitations for granted; they’re rare. My point is that an imitation isn’t really the same as knowing a word. A slightly better indication is that when I say x, he says y, for example I say “ready set,” and he says “guh,” I say “a cow says?” and he says “muhh.” But even this is not using words.
What is? When he walks up to our kitchen gate and says “opah.” This basically means “open,” although it’s often hard to distinguish between “up” and “help.” This is pretty much the only word he says. After years of various therapies, including the 10 hours a week of “ABA” he gets at home, the 2 hours a week at Alta Bates, and the 20 hours a week of concentrated attention he gets in a Special Day Class (ratio of teachers to students is 3:4) at a pre-school in our local school district…he has all of one proactive word. Wouldn’t wish this situation on my worst enemy.
Trying to have any communication with Dar is like hitting your head against a wall, and not in the cool rock’n’roll way. And people DO give up on that, after a while. We’ve seen that.
Now, if we were having a physical, live, in-person conversation, this would be your cue for the “Have you tried…?”s and the “Have you read…?”s and the “Have you seen…?”s. I am well aware that these come with only the best of intentions. Please be equally aware that more than two years into this thing, we probably have tried, read, and/or seen them. We see Dr. S.N. at UCSF, the Andrew Weil prodigy who has helped so many people. We tried GFCF (i.e. gluten-free, casein-free, for the less hippie-fied) for 6 months (no change). We tried an iPad and a lot of other “assistive devices.” We read a LOT. But hey, there’s always more to learn. I still can’t get more than halfway through Proust’s Remembrance of Things Past, maybe there’s something in there that would help.
Oddly, one of the hardest things about this whole experience is how little a well-meaning person, such as yourself, can really do. If you offered me a million dollars to help Dar, well, sure, it would give us more hours of respite care, which wouldn’t be terrible, but how much would it help Dar? How many more words or abilities would he have at the age of five? Probably wouldn’t even bend the curve.
So ask not what you can do for Dar, ask what I can do for you. I write this blog for two reasons: to make myself a better Dad, and to give you a sense of what it’s like to be a parent of a severely disabled child. Many of the extant blogs/books/movies are about brave, great people on a Temple Grandin level of functionality. The integrate-able are awesome, but they’re not the whole story. This should remind you of that moment when your girlfriend said, “I don’t want you to fix me, I just want you to hear me.” That.
You see, I’m not Tom Cruise in Rain Man. I’m not Michelle Pfeiffer in I Am Sam. I’m not enough of a douche in the first place for me to have some major epiphany about life lessons from my severely disabled child. This whole thing doesn’t end with me singing “I Saw Her Standing There” and realizing what life really means. Yes, I may learn a few things along the way; as a thinking person, of course I don’t rule that out. And if we’re lucky, very lucky, maybe we will see Dar getting better – what a triumph that would be for you to share. But the point of this paragraph is that I was already going to be a fairly decent dad. Dar’s disability, and this blog, doesn’t change the “meaning” of that. They may not change the “meaning” of anything – other than growing your circle of empathy.
If that happens, then maybe this won’t all be a colossal waste of my time. And by “this,” I don’t just mean the blog. A close friend of mine, who is also a very successful Hollywood screenwriter and has long known about Dar’s condition, said to me, upon news of the blog, “I think you’re trying to give all this some meaning. And I think you should. It’s horrible to think that all our experiences may not add up to even that.”
It’s possible – possible – that I think of parents with “typical” kids the way that parents of typical kids think of non-parents. I mean, anecdotally, you see parents roll their eyes, sigh, and say to non-parents, “Ohhhhh, you don’t get it,” or “Just you wait,” or “Someday you’ll understand.” Well, pilgrim, welcome to someday. Because I want to build a bridge, in less than the 24 years it took the Bay Area to build the one it just opened. I want you to understand. As much as you can. Welcome to my life with a very special boy who I love – my son.