Magazine article The Exceptional Parent

Ten Things I Wish I'd Known Then

Magazine article The Exceptional Parent

Ten Things I Wish I'd Known Then

Article excerpt

I've never been one for remembering certain types of anniversaries. I admit to forgetting the birth dates of beloved grandparents long passed, have only a passing acquaintance with the month and year they were buried. This doesn't mean I don't pay attention to certain milestone events--it's just that I don't feel constrained to remember them on one particular day.

I keep special people alive by talking about them with my sons, by remembering them when the scent of homemade chocolate chip cookies assails me. or when a certain smile on my eldest son's face reminds me of a loved one who's gone. Remembrance is random for me. usually elicited by a specific trigger.

And this morning I had that moment when I came upon some old papers from Kennedy Krieger. My eldest son Justin, who has severe autism, was officially diagnosed with moderate to severe autism 11 years ago in the fall of 2004. He'd graced this earth for almost a year and a half at that point, and quite frankly, the diagnosis was not a shock to me or to his father. I'd had questions about his development back to his sixth month of life, concerns which only deepened as we compared his milestones with those of our friends' babies who'd been born within a month on either side of him.

We weren't stunned that day in Baltimore. At the time, we were mostly saddened, and deeply scared. The words "pervasive developmental disorder," while not surprising, did put a finality on the situation, particularly the part about the disorder being lifelong. I can recall heading out to the parking lot with my spouse Jeff, holding Justin in one arm and my husband's hand in the other. We were both exhausted as our boy had been up several times the night before, plus we were simply overwhelmed. I remember feeling angry about the diagnosis, but mostly, I was just tired. Tired of sleepless nights, tantrums, and the sinking feeling I wasn't up to the task of getting my son what he'd need for the next eighty years. I should mention I'm a planner.

That moment in the parking lot was a pivotal one for me, and as I sat this morning clutching the very papers we walked out with that day, I had such a strong desire to go back in time and tell that terrified mom a few things about the future a decade later. …

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