Monday, October 03, 2005

Learning to Say Autism

Today is day sixty seven. Sixty seven days since Oliver has had autism. He has had it longer than that, of course, but its been sixty seven days since we sat in that room full of strangers whose attention was mostly taken up with the sheaths of paper in front of them. Strangers who suddenly had information about our son. Important information. They told us what they thought and we left and drove home without many words between us.

So it has been sixty seven days of waking each morning to that thunderously heavy word: Autism. In the beginning I couldn't say it. It was a betrayal to even think it. My son was perfect. He was brilliant. His first word, even before ball, was squirrel. But it has been a long time since I've heard him say squirrel and sixty seven days since I learned to say Autism.

Autism is a scary word, really. It's one of those words that makes you thankful that your kid is healthy and that its someone else's child that you're talking about. We didn't even know what Autism was. Autistic kids sit in the corner and rock, right? The first time someone suggested that Oliver might be autistic I immediately ran to the computer to read up on the subject even though I was sure she was crazy. Obsessive-compulsive behaviors, frequent tantrums, language delays, inability to pay attention. Whew, well, that wasn't Oliver. Sure, he had some of those behaviors but what two and a half year old doesn't? But then several evaluations later and a room full of people reading aloud from reports and yes, even I have to see: Oliver has Autism.

Sixty seven days after Autism and we've learned some things about our son. No, he isn't just being stubborn. He isn't just ignoring us. No, he doesn't have a discipline problem. His lack of development isn't because we do everything for him. And No, he won't suddenly start talking at the age of four like Einstein supposedly did. But there are other things that sixty seven days won't yeild up. Sixty seven days of Autism isn't enough to tell us what his future holds. Sixty seven days won't even tell us the plot. And so we are filled with questions and fear but also with optimism and most of all with hope. That last is a conscious decision and a sustained effort.

We are lucky enough to have access to a lot of skilled professionals who are helping us find our way with Oliver. He has pre-school for socialization, and then there is the speech therapy, occupational therapy, sensory integration therapy, applied behavior analysis therapy with some floortime thrown in. He is learning to communicate using the Picture Exchange Communication System (PECS) and his days are tracked using a visual schedule so he knows what to expect. At one time Nik and I used to congratulate ourselves that we weren't tied up in a lifestyle of shuttling children between engagements like so many of our friends. So it is ironic that our life is so scheduled at the moment that I have to consult my calendar to schedule a coffee date.

But sixty seven days have passed. And sixty seven more will pass exponentially. And Oliver will still have autism. But the part that we still congratulate ourselves on before closing our eyes at night is that Oliver is the same wonderful, amazing, perfect, brilliant little boy that he was sixty eight days ago.

7 comments:

  1. Here's to you. All the best.

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  2. I remember my son's early diagnosis days, too. The pain I felt was searing. All I can say is that somehow things have gotten better, though maybe because it's been thirteen years. I have written a lot about Natty and his early days. You will get through this, trust me.

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  3. Keep writing it! Oliver deserves it & so do you... there is a world of women out there dealing with this as well - and I see that one has already found you. You will receive the support and guidance you may not be able to get elsewhere, plus the therapy of writing it all down!!!

    Just keep learning from the lessons - you will be fine & so will Oliver.

    kd

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  4. Thanks so much for the feedback. The process of organizing my thoughts and feelings into writing has so far been very good for me. And I've been reading the words that others have written and that, too, has been a great salve.

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  5. Christine,

    My admiration for you grows each day I know you. You are an incredible wordsmith as well. The emotion in your words gave me goosebumps more than once. Thanks for sharing what's in your heart.

    AMB

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  6. Wow. It sounds like you've come 670 miles in 67 days. Oliver is lucky to have you. I know how hard it is to resist thinking about, worrying about, obsessing about the future. But really, truly, this is a one-day-at-a-time journey. Then after a whole bunch of one-days you look back over the landscape you've travelled and say "Was I really there? It doesn't even look familiar..."

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