Dar has been reminding me of one of the worst days of my life with him. It’s not his fault, but his behavior has brought me back to one of the first places we brought him post-diagnosis, pre-blog. Keep reading only if you can handle the darkness as well as the sunshine.
Let’s back up a scootch. You know how, when an autistic kid goes missing, and the press reports on it, there’s inevitably a sentence that says that the child “has the mental capacity of a __-year-old”? Yeah, I often wonder how such measurements are made.
Dar sees therapists, that’s plural, every day, but no one weighs in on his “mental age.” Nor does his pediatrician. I suppose some parents need to bring their kid to an autism-specializing doctor to continue to qualify for services, but we certainly don’t. And so Dar hasn’t seen such a person in at least two years. Right now, does Dar have the mental capacity of a 1-year-old? A 2-year-old? A 3-year-old? I have no idea. Maybe we should learn my mental capacity.
In the last few months, here in 2015 and 2016, Dar has been trying on hats. A year ago, we couldn’t get him to wear a hat to save our lives. He would throw it off like it contained a hive of stinging bees. Now he asks me to pick him up (he says: uh-puh) to choose from the hats on the top shelf of the closet. Now he closes his own bedroom’s door, which is hard for him to re-open, just so that he can admire himself in his bedroom’s full-length mirror.
He realizes that hats are something people wear on their heads. As with many things, he may have sensed this because of his brother. However, his brother will always wear a hat outside; Dar certainly rejects all hoodies (which isn’t great, in the current rain), and tends to discard hats outdoors as well. I think the main draw for him is seeing himself wear a hat in a mirror. He never seemed to notice mirrors before.
This brings me to one of the worst days of my life, about four years ago, although it feels like forty. It was just after Dar’s 2nd birthday; we had just received Dar’s formal diagnosis of autism, though all our friends were like “He’s probably just late, my friend’s kid didn’t talk until she was three,” “I feel like he’s very aware, maybe you’re worrying too much,” and all that. Wifey and I were, and are, big believers in early intervention, and we’d barged into a program for 18-month-to-36-month-olds with special needs that included a group therapy component for parents.
I will never forget that place. (I don’t want to name it, because the rest of this is going to sound insulting, even though I don’t mean it to be. Good people working there, all far stronger than I ever will be.) Group therapy was a tenth circle of hell. One woman, no older than 30, cried as she talked about how she wanted to have a second kid, but that her husband would divorce her if #2 was special needs. Another woman, around the same age, was Mormon and very practical but also very scared; as it turned out, her daughter would go on to be Dar’s preschoolmate until the family moved back to Utah. Another woman welcomed newbies by saying “welcome to the club that no one wants to be in.” It was meant to break the ice, but it made me feel more frigid.
I remember a very beardy guy whose kid was born the same week as Dar. He was gregarious, but also freaking out about his son. Then we never saw him at that center again. A few months later, I ran into him at the park near our house, and he said that his kid dramatically improved. He seemed sheepish, like I was going to say “Oh, you yuppies always overreact to one little missed milestone.” And he skedaddled out of the play area before we might have exchanged numbers; probably I reminded him of how horrible the place was.
You’re picturing an antiseptic hospital room with clammy walls, right? Don’t. The center had 20-foot-high ceilings and chocolate-wood beams holding up every nook and cranny, the kind of place that gets converted to lofts in SoMa and rents for $3k per 1k sq.ft. No, the environment was fine. It’s just…
To see a roomful of parents accompanying their 2-year-olds with special needs – and by the way, there were Down’s kids, Fragile X kids, cerebral palsy kids, muscular dystrophy kids, you name it – is to watch as dreams go to die. You can almost hear the air fizzling out of people’s personal balloons. Everyone is trying to put a good face on things, “oh she does that too?” “oh he loves that!” while deep down, the parents are all in a shell shock that they couldn’t have imagined such a short time before, when the hospital handed them that beautiful newborn.
Every adult at such a center is walking on eggshells between hope and acceptance, and they’re fools if they’re not wondering what the hell is going to happen to their angels when they’re older, with the bullying, the assaults, the inability to draw a salary, the constant dependence, and all the rest of it. Their baby blocks have become cement blocks on their shoes, and they’re drowning, whether or not they say so.
Some people know the scene from One Flew Over the Cuckoo’s Nest where R.P. McMurphy (Jack Nicholson) has to get one more vote to watch the ward’s TV playing the World Series, and he must solicit not the quirky card-players we’ve come to know, but the “chronics” and the “vegetables” (using Ken Kesey’s book’s language). Imagine that scene, only every patient is two, and has baby fat.
This was driven home most painfully to me during a session of “let’s try on hats.” Sometimes the kids got free/managed play, other times they would gather for circle time and a therapist would say in an achingly slow, clearly enunciated voice, “let’s try on hats.” Dar sat with 6 other kids in a circle as the therapist held out the basket of hats; 1 or 2 kids couldn’t wait, and would grab hats; other kids refused them, or didn’t notice them, while the rest of us waited a minute. Dar was somewhere in between; he certainly wouldn’t wear any hat. But as I watched the therapist say, like a Berlitz instructor, “now let’s put the hats back in the basket,” I somehow felt my heart sink to the bottom of my shoes. THIS is Dar’s life? WHAT THE FROCK.
It all hit me like a car crash at that moment, and reminded me of another of my favorite pre-Dar movies, which is also about spending your life institutionalized. The voice-over comes from the greatest voice in the history of movies:
The first night’s the toughest, no doubt about it…and when they put you in that cell, and those bars slam home, that’s when you know it’s for real. A whole life blown away in the blink of an eye. Nothing left but all the time in the world to think about it.
I mean, sometimes I have to tell you that the struggle is real, right?
Okay, so let’s try not to end this despondently! Things have changed in four years. Now, unlike then, Dar puts on hats with glee, and stares at himself adoringly in the mirror. So maybe Dar is in the mirror stage. If Jacques Lacan is right, he’s on his way. Symbolic stage here we come!
