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“A” Day Anniversary January 27, 2009

Posted by hopeauthority in Uncategorized.
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Five years ago today, Fabio was diagnosed with autism.

Can’t really say “Happy” before this anniversary, now can we?

I can’t believe it was five years ago that time stood still, that my ears actually stopped hearing momentarily, and that my whole world fell apart. And… whether right or wrong… my dreams died.

When I replay that home visit from the county’s experts in my mind, I am pretty unforgiving towards the naive mother that I was back then. I totally missed the knowing exchange of glances between the experts after they ran their tests. I felt confused by the slow delivery of the news from faces that looked like they were imposing a death sentence.

I don’t know if it was better or worse that they first called it PDD. What the hell was Pervasive Developmental Disorder? I’d never heard of it. But by the time they’d left the driveway, the internet had taken my breath away. How thankful I am now for those few extra moments of ignorance.  If they’d said “Autism” from the outset, my visions of Rainman would have induced an immediate breakdown. That came 4 months later with the MD diagnosis.

I was one of those moms who spotted something wrong relatively early. He was diagnosed at 22 months (and in therapy even before the second opinion arrived).  I acted on my suspicions quickly. But I was still not prepared for anything other than someone saying Fabio had a speech delay. And I was burying my beloved sister-in-law the next day. Surely, this was the lowest moment of a life filled with many awful, low moments.

I am amazed at how this epidemic has raged and that now….only five years later…everyone not only knows what autism is, but they probably know someone who has it.

He didn’t look when you called his name. He didn’t point. He didn’t even flinch when a loud bell was rung behind him. The handful of words he’d previously spoken disappeared in the night. After his MMR.

And so we began the longest journey ever undertaken. The one where there is no rest for any of us at any time. The days are full of therapy sessions and opportunities to teach which must not be squandered. The nights are merely a series of snippets of sleep, interrupted by our children’s night terrors or our own nightmares.

There is a sense of urgency everywhere…the idea that the window of opportunity for recovery or mainstreaming is closing with every chime of the clock.

There is the never-ending frustration of watching the passing of deadlines we never should have set for Fabio’s recovery. I remember thinking when he was still three and in intense therapy, that we had 2 more years…2 whole years…before kindergarten. Surely this whole “autism thing” will be behind us by then. But had we not set those deadlines, we would surely have gone insane. Our minds were just trying to protect us.  We were not ready to consider back then that this wasn’t going to go away. And we still aren’t.

Fabio has made the most incredible progress and I am so proud of how hard he has worked every moment of every day of the last five years. I am thankful for all the therapists and teachers and doctors who brought him back to us. And he is back. There is no sound sweeter than the little voice you’ve waited so long to hear and the infectious belly laugh of a happy boy.

When you look at it that way, maybe it is a happy anniversary after all.

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Comments»

1. pixiemama - January 27, 2009

It’s a bittersweet thing.
It’s OK to admit that some days it just kills you and other days you trump it…
It’s OK.


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