What Parents Know that a Diagnosis Can’t Tell Us

“Your son has Asperger’s Syndrome,” our psychologist says.

The office feels like the air has been sucked out of it, like a tsunami pulling all the water out to sea to gather up into a gigantic cresting wave.  I feel like I am sitting on the beach just waiting for it to break.  Did he actually say Asperger’s?  An odd giddiness of relief begins bubbling up.  Now what?  My eyes fix on the grain in the oak conference table.  Paper clips are splayed on the dark wood and I am intrigued that they sparkle in the afternoon light in a way that the oak cannot, silver against wood.  My head hurts.

Ken, the psychologist, a colleague of mine, explains his reasons for his diagnosis.  I am used to being on the other side of this conversation in the work I do as an educational therapist.  This time, I am the parent.  I am full of memories:  the night we had different dinner plans and my son cried inconsolably for an hour for what he calls Kabuki shrimp, his favorite dish …the container of bright orange foam ear plugs we keep handy like other people keep breath mints…the time I changed plans when he was five and he sobbed for two hours, “You promised and didn’t do it.”… the kids in elementary school who called him “Mr. Encyclopedia” and how they stopped inviting him to their birthday parties…at barely three years old, his fascination with a lightning storm that he called “stranger light”…the way he wears his t-shirts backwards to keep the tag from itching, and only buys a particular brand of khaki shorts and slip-on shoes… when an idea gets hold of him, he becomes unstoppable (think: locomotive) as he goes into “mission mode”…his unquenchable curiosity about how things work… his intricate knowledge of computer graphics, mostly self-taught.  Don’t tell me, I know he is wired differently, and yet, this is how my son has come into this world, into my heart. There is no one else quite like him, and I’ve always loved that.

“Hmmm,” I say.  “I had a feeling it would be something like Asperger’s.”

I’m thinking to myself, LIAR!  My professional side zooms to the rescue while my inner parent wants to belly crawl under the table for a few days.  Of all the things my son’s difficulties could be, I am completely blindsided by this diagnosis.  Honest, I didn’t know.  Too embarrassed to admit it, I feign no surprise.  After all, I work in this field.  How could I not know this?  I know my son is quirky.  I know he doesn’t pick up on social stuff.  I know he’s “scary smart”.  I know he gets overwhelmed by too much sound.  I know he gets stuck in ideas and he can’t let go of them.  I know he can’t picture the other guy’s viewpoint.  I know all that.  I know so much and I know so little in this moment. The official branding of these behaviors as Asperger’s confirms this knowing, gives it a name.

“Ken, what should we do?”  I ask.

I expect Ken to talk about an action plan, finding professional support, and the right fit for school.  These things I know.  I know Ken will set us on the right path. I’m conscious of my hair that brushes against my lower back.  It feels heavy, as if its weight has increased.  I’m not sure what our future holds and I’m uneasy.  I know there is no quick fix.  The tsunami wave is right there, curling over me, frozen.

“You already do this.” Ken says, “Love your son, no matter what.”

I take a deep breath.  Yes.  In my soul, I know.

3 thoughts on “What Parents Know that a Diagnosis Can’t Tell Us

  1. I love your post, Debra! This really hits me close to home and I so appreciate you sharing your voice and story and wisdom. Can’t wait to read more from your blog! XOXO Debbie

    • I am so glad that you found this helpful. Please feel free to share your voice and wisdom here as well! I’d love to hear your story. Debra

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