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Almost Invisible/’Fessing Up

My kid is on the spectrum. There. I said it. Those words don’t roll out of my mouth, because in the 18 months since he was diagnosed, I’ve barely said them out loud.

“I’m going to go ahead and give him a diagnosis: Atypical PDD-NOS,” said the neuropsychologist. In plain English: my four-year-old was at the high-functioning end of the autism spectrum, and he’s a more social guy than is typical for kids with this diagnosis.

“I don’t know if the diagnosis will stick,” the doctor explained. “For now it fits, and when he comes back for another evaluation in 2 years, we’ll see where things are.” It was honest, but probably the wrong thing to say to mom who was raised by a family that competed in the Denial Olympics. I latched on. I told myself he was borderline, that the diagnosis definitely wouldn’t stick and so it didn’t matter. He was the same wonderful kid he’d always been, right? It was just a new description

Most of the time I can get away with it. He doesn’t have an IEP. He has Sensory Processing Disorder, but occupational therapy has helped. He struggles with focus, but his genetic history has prepared us for the possibility of an ADD/ADHD diagnosis down the road. He’s a charming, loving, social guy who makes friends easily, even if he does sometimes struggle with reading social cues.

But sometimes the diagnosis catches up to me.

A few weeks ago our family headed north for our synagogue’s annual winter weekend. We ski, tube, play games, and (because we’re Jews) eat an unbelievable amount of food. The kids run in a herd and there’s a lot of communal parenting that goes on during these weekends.

My kids ran around like gleeful maniacs from sunup until well past sundown. Months of occupational therapy have taught us that E. needs breaks even when he doesn’t think he does. The breaks calm his system down so he doesn’t get so overloaded he can’t control himself. There were no breaks that day, but we justified it by talking about how much time he’d had outdoors, which always calms him.

Around 9 I finally blew the whistle and took the children upstairs for bed. I got my daughter into her pajamas, but when I turned to do the same for E., he went off like a bottle rocket.  Screaming. Kicking. Threatening. Hitting me. Hitting himself and his sister. Slamming the door. Flailing. Inconsolable. Repeating, over and over: “I don’t want my pajamas!,” even after I told him I didn’t care what he wore to bed.

I could have been singing the score from Tommy and he wouldn’t have noticed. His brain was stuck in a loop. After 90 minutes, my wife came upstairs and worked her magic.  I was beside myself. These tantrums send me into the depths of parental self-doubt. Seeing my depression, she dispatched a friend, the parent of a 17-year-old with Asperger’s Syndrome.

My friend got it  – really got it – because she’d been there over and over for 17 years. And she was probably the only person who could have talked me off that particular ledge that night. Because her kid is on the spectrum. Like mine. Even this Queen of Denial heard my own brain say it that night.

Her kid is on the spectrum, just like mine.

These tantrums don’t happen in front of other people. Ever. And it feels like they’re impossible to describe. And his special needs are invisible most of the time to the untrained eye. So I don’t even try to explain. But in not trying, I’ve isolated myself. And I feel lonely and I complain about how no one gets it, no one understands. See how this works?

So here I am. Trying to accept that the diagnosis is real, owning up to it by telling YOU about it, so we can all get a little help and feel a little less lonely with this.

If you’re reading this, you probably understand, or you love someone who understands. And maybe you feel a little less lonely now too. It’s the best any of us can do.

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