On this blog we’ve got Media Monday, Waaambulance Wednesday, and Freedom Friday. Feel free to jump off the waaambulance if the siren bugs.

So, us parents of autistic kids hear things all the time that are absolutely meant with the best of intentions, but are sometimes a little hard to hear. Let’s run through a few.

 

Nice person: Ohhh, he looks sleepy.

 

I say: Yeah, he’s a little tired.

I think: Yeah, he always looks like that.

 

I am reminded of a moment in one of The Simpsons’ greatest episodes, the “Cape Fear” spoof with Sideshow Bob: Lisa sees her drunken, unconscious father and says to her mother, “Dad’s been drugged!”; Marge replies, in an even-keeled voice, “No, he hasn’t.”

 

Nice person: Their childhood goes by so fast, amiright?

OR

Nice person: Next thing you know, he’ll be asking for the car keys!

 

I say: Yeah, I hear you, for sure.

I think: Uh, he hasn’t changed. Uh, he isn’t gonna change, or not much.

 

Nice person: Enjoy this age while you can!

 

I say: Yeah, exactly.

I think: You probably should enjoy your typical child. Try taking two years to teach your child to point, then get back to me.

 

Nice person: How old is he?…I love that age! That’s the perfect age.

 

I say: Sure.

I swear I only thought this once, but I did once think: “Oh you want a child that’s that age forever, do ya? Well here ya go.”

 

Nice person: It gets better. (Not just for gay teens anymore!)

 

I say: Fair enough.

I think: Better for whom? Also, have you ever heard that it can get worse before it gets better? A lot worse, sometimes.

 

Nice person: Well, it is what it is.

 

I say: Mmmmmmmm.

 

Nice person: You never know.

 

I say: That’s a good point.

I think: I know all about ‘it is what it is’ and ‘you never know.’ I live on a knife’s edge between those two, a knife’s edge between acceptance and hope.

 

Should I explain that? It’s funny, the inherent message in about half the autism literature can be boiled down to one word: accept. Accept who your child is, love him for who he is. The inherent message in the other half is: hope. You can’t work with your own offspring every day, try to get them to do certain exercises, see them very occasionally get things right, and – this is the hard part – not hope that they will break through.  (This tendency isn’t helped by therapists and websites, who tell you of all sorts of breakthroughs with other kids.) I guess the only way to stop hoping would be to just live apart from my child. That is not on the table. Thus every day, hope grows like a weed that I don’t even water into a nice flower…only to be crushed every day by a child who spaces out.

 

Hope and acceptance are a sort of double-sided coin that every parent lives with, to some degree. But the contradiction stares you right in the face when your child can’t and won’t do anything with you or say anything to you or show that he understands you. So the Oprah-esque bromides related to these – like “let it go” and “don’t give up” – they don’t feel suited to parents of kids with autism. Really, let it go? Stop trying with him? OR: Really, don’t give up? Bang my head against the wall again?

 

You can see why people might stop talking to me, eh?

 

Living with contradictions isn’t a thrill. Another one is deciding to explain his autism to random people – say at a park or store – or not. It was easier when he was younger…now that he’s four and looks five, there’s a lot more awkwardness when well-meaning adults say “what’s your name?” or “is that man your daddy?” and the child looks back without comprehension.

 

I would sometimes ask parents of, say, a three-year-old, does it feel like it’s been three years, three months, or three decades?  No one knows what the hell to say to an inane question like that, but I think most have said, after a pause, “I guess three years.” The thing for me is that the first four years with DarMar felt a lot closer to four decades. This thing has aged me. And I have to live as long as I can for his sake. So let it go, right Oprah? Riiiiiiiiiiiiiiight.

 

Certain realizations hit you like a winter ocean seen from the beach – you know it’s cold, but it still bites when you feel it.  You can read that the nightmare behind special-needs children is that they often don’t get better because parents get tired of having to make an extra effort. But then you see it, feel it, and it breaks your heart. Maybe around the 20th time I tried to get him to imitate “ah,” or the 50th time I tried to get him to eat part of a grape, I said to myself “oh what’s the use? He’s never gonna get this stuff, so why should I kill myself trying?” And it’s hard to pick yourself up and just do it again. No one is cheering for you. No one is emailing or texting Good Job, much less Can I Do It For an Hour? You kill yourself just so you can later present a half-normal kid to…people.

 

So what is having a special-needs toddler like? You’re not sick of me yet? You really want to know? I’ll tell you. You know that day in high school when you found out that your most exalted crush, the one you wanted to be the love of your life, just wasn’t that into you? Remember how that day felt? Right, well, every day without surprises – that’s about 30 out of 31 days of the month – is like that for me. Every day the tide of hope comes in, only to be dragged out by the undertow of acceptance.

 

You’ve seen Memento, because everyone has seen Memento.  Remember at the end, when Teddy (Joey Pants) explains the whole plot, and follows it up by shouting at Leonard (Guy Pearce) in frustration, “But you don’t remember!  Because nothing sticks!  Just like this won’t stick!” Teddy was right about Leonard. But his sentiment was wrong, applied to the shelflife of the film Memento. Maybe if I keep writing, this blog can have a similar shelflife.

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