“My Story…” Monday: A – Bye, Bye, Autism Diagnosis

(You can catch up on A’s story right here: The Pregnancy, The Birth, The Infancy, The Quiet Toddler, Advocating, What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra, The Triennial, The IQ Results)  
 

[Before I continue on with A’s story today (and I AM continuing, thanks to you!), I must first just offer a huge thank you to all of your for kindness and support as I questioned my decision to write this series.   I never expected such an outpouring of comments and I can’t convey on the screen how much that meant to me.  Just know that it is with humble gratitude that I continue writing this– I am so, so blessed to have you all to read along…]

 

I sat at the long conference table sobbing.  It all hit me at once.  The recommendations were all sinking in and, all of a sudden, I felt alone and lost.

 

You see, from before A. even turned two, I had sought out support and help for him.  We had been working as a team with doctors, teachers, and therapists for over four years by the time we got to that triennial meeting.  I had been to meeting after meeting after meeting where we discussed his progress and outlined the next plan.  I was so used to those meetings– the verbiage, the parental safeguards, the reports, the whole protocol.

 

But I had never, ever heard these words before:

 

“Based upon the reports, findings, and recommendations of this team, A. no longer qualifies for Special Education.”

The school psychologist went over all the surveys and tests that had been completed– by her, by us, by all the teachers and therapists.  She could find no supporting evidence for a diagnosis on the autism spectrum.  Was the jumping and flapping still evident?  Yep.  But that didn’t mean our son was “autistic”… there’s just so much more to it, and him, than that.  And, with that, the description fell off his paperwork.

 

His occupational therapist?  Was delighted by his progress.  He was fascinated with A. and enjoyed working with him, but did not have any goals that our son was not meeting.

 

His speech therapist?  The only “deficit” he showed in her testing was a slight weakness in “confrontational speech”.  This, she felt strongly, was something that could easily be worked on in a classroom and, quite frankly, was also just evidence of his sweet, easygoing nature.

 

These professionals– this team… OUR team.  They all smiled at me.  They were so proud of A. and they were happy for us.

 

And I cried.  I was so, SO delighted for my child.  So very, very thrilled that we were getting what, truly ,was very good news.

 

But I felt alone.  All of sudden, I started panicking.  So what now?  What happens now that A. is just “typical” and one of a crowd?  What happens now that no one is monitoring how he’s doing and how he’s progressing in these things?   Who’s going to help my son find his way through this minefield now, when I’m not around?

 

My tears confused them and the principal gently asked if I was okay.

 

Yes, I assured them, yes, I was happy.  Just overwhelmed.  And concerned…

 

And they all smiled.  They started to speak up.

 

“We’re still going to be watching out for A– don’t worry!”

 

“He’s going to have a wonderful, successful year!”

 

“He’s not off our radar– don’t think these papers will make us forget him.”

 

“I’ll still get to see him when I visit the classroom!”

 

And on and on.  I was comforted and reassured over and over again.  And, with still glistening eyes and streaky cheeks, I smiled a shaky smile.

 

And, finally, Dr. C. spoke up.

 

“I want to tell you some plans I’m thinking about for A…”

 

And, with that, the game changed.

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9 comments to “My Story…” Monday: A – Bye, Bye, Autism Diagnosis

  • Becki

    Thanks for continuing your story!! I don’t get to comment very often as I am usually on my phone, but I love reading your story. As a developmental therapist with my state’s EI, I only get to see MY kiddos until the age of three, and after that I don’t know how my kiddos and their families are doing – although facebook is helping with that aspect. Your story encourages me when I am frustrated about lack of progress with kids (or their family). Please continue, as you are an advocate for all kids with special needs, and those needs are on both ends of the spectrum. You are a strong woman! I love reading every week, but the cliffhangers drive me nuts!!!!

    • Oh, your comment made me MISS our early intervention therapists! I was doing a decent job staying in touch when we still lived in that state but, now that we’re in CT, I’m so far away. I’m pretty sure they read my blog, though, so I guess that’s a little connection. ;)

  • You sure do like to leave us dangling on the cliff, huh?!?!

    So happy you’re continuing A’s story. I think there are so many people out there who will benefit from you telling this story.

  • Lori

    I want to cry too. I can only imagine how that is, knowing now that he is doing better, yet still not “normal” and probably not ready to go it alone yet.

    • It was a really strange thing, Lori, to have spent YEARS wanting only to hear that our child was “normal”, but– when the words came– it was so scary. This parenting gig can be a real roller coaster ride!

  • That’s wonderful news! Although I can’t figure out of the rest of the story is good news or bad. Keeping my fingers crossed for ya!

  • [...] Another Evaluation, A New Kind of Special Need, Linear Algebra, The Triennial, The IQ Results, Bye, Bye Autism Diagnosis, Dr. C’s Plan, Second Grade Math, Is it too easy?, A Well-Rounded Child, Being a Team Player, [...]

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