Finality of a Diagnosis

Ry and I sat in yet another bright and cheery medical office at Children’s Hospital this morning.  This particular room was purple and blue.  While we’ve been confident over the past 3-4 years of Autism being an appropriate diagnosis, we haven’t gone through the rigmarole of haggling an official diagnosis.  But, you see, certain therapies aren’t covered without that medical diagnosis.  And we want to take advantage of those certain therapies.  So there we were, aiming to get that Autism word written down on a paper so we can move forward with the next thing.

For 2.25 hours we answered questions and filled out forms with lots and lots of words.  Familiar words I can almost recite in my sleep.  “Does your child use personal space appropriately?”  “Does he take note of the emotions of those around him?”  “Does he hate you for the countless hours you’ve forced him to answer questions about his hardest things in front of complete strangers he has no reason to trust or want to interact with?”  Those questions. We’ve filled out a giant Oak tree’s worth of these questionnaires over the years.  And will continue to I’m afraid.

As is most often the case, the docs were kind and appropriate and good at their jobs.  But Ry continued to say, “I know you’re talking about me and I don’t like it.  STOP talking about me.”  I wished I could respect his wishes because he deserves for us NOT to talk about him.  He deserves to have his blood pressure checked, his weight taken, to say “ah” with a tiny light shining in his throat and be excused.  That’s just not his story.  He’s sick and tired of it all and wants the yearly check up.  And I don’t blame him.  In fact, I’m proud of his ability to not scream at the doctors and me and lose his 10-year-old marbles during these appointments.  It’s remarkable he doesn’t.

We got the diagnosis.  It wasn’t even a conversation really.  Between the school diagnosis, the face to face observation, the questionnaires….of course it’s Autism.  I wasn’t phased by what happened in that room.  I expected it.  I know it.  I live it.  And yet, as we walked through the massive lobby at the hospital and I watched my son skipping and stemming and ticking ahead of me, I had to fight hard not to break down.  My eyes filled and my knees wanted to cave.  Maybe if I stayed in that lobby we wouldn’t have to live the diagnosis.  We could stay in the safety of people who get it and support us and warmly smile at who we are and where we come from.  I didn’t want to leave that building and the words we spoke.  I wanted the finality of the heavy paperwork in my purse to remain in their walls.

I’m sad and angry and so tired today.  My heart is physically hurting and I can’t fight off the water shed.  Not because anything those doctors said was new or surprising.  Not because my son is any different today than he was yesterday.  And not because my advocating or actions as his mom will look different moving forward.  Maybe it’s because without the words on the paper, I put Ry in a different camp.  Sure, he had Autism, but it was just ME who thought that.  Probably he was just developmentally delayed.  With enough therapy, we’d catch up and grasp more.  We’d find a rhythm at school without my constant interference.  The typicality would eventually outweigh the atypicality.  I thought of our situation as special”ish” needs.  Always the “ish.”

Today’s diagnosis put all those thoughts to rest with one giant stomp.  There’s no “ish” in our story.  Rhythm doesn’t exist really.  No therapy or school will ever encompass all our needs.  There’s a finality to what we’ve been fighting and warding off for years.  Finality is really hard to swallow – this I know from experience.  It might serve us well in the future, but for today it’s scary and sad and hard and unchangeable.  For him mainly.    And for me it just hurts like hell.

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1 Comment
  1. Not sure there’s much I can say to offer comfort, except thank you for your continued openness about your journey with your kiddos. Knowing your beautiful family and now being a peds therapist – your insight helps me help others better. Love you guys and I will say a prayer for you tonight!

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