Let’s get physical

December 3, 2008 at 9:47 pm 4 comments

     I am reviewing “THE BOOK.” Parents of special needs kids know what I’m talking about. We all have some version of it. C’s is a huge binder that includes his medical history, therapy (occupational, physical, speech, and feeding) evals, specialists’ reports, lab results, and the like. I take the book to every doctor’s appointment and all our IEP meetings.

     The book doesn’t get much traffic anymore, I’m happy to say, but mostly because we’re fairly comfortable with the status quo at the moment. We’ve done the bloodwork with the geneticist, the poop studies with the DAN doctor, and all the allergy testing we can find. We’re comfortable with the supplements he’s taking, and curing his allergies would require a move to the polar ice cap. He’s doing well, his health is holding steady, and he’s happy. We’ll leave things as they are for now.

     Mostly these days I get the book off the shelf simply to add a progress report or an updated therapist evaluation. It’s like reading a somewhat disturbing report card about your kid that has nothing to do with who he really is or even how he’s really doing. C is one of those kids that presents in real life far differently than he appears on paper, and most people who read his history before actually meeting him are completely surprised by the child they actually meet.

     So when I look back at an old physical therapy evaluation from when he was just shy of four years old, I am taken aback when I read the scores. “Percentile rank, less than 1%,” “age equivalent in months, 1 month,” and “rating, very poor.” This is what my child was? This is what my child is?  How is he even walking around with a report like that just a few short years ago? C has learned to swing this year, and he’s proud of that, but he still comes home crying that he can’t run as fast as the other, bigger boys in his class. C thinks his shoes are the problem, and I’m looking at it from the other side being truly happy he runs less and less like Forrest Gump with each passing day.

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Entry filed under: autism. Tags: , , , , .

Nearly Wordless Wednesday Telling it like it is

4 Comments Add your own

  • 1. therocchronicles  |  December 4, 2008 at 5:34 am

    The Roc’s book is sitting open on the floor right now. I just got my copies of all the stuff we went over at the last IEP. I was so depressed after reading through the psychologist’s report that it took me three days to add that info to the Book.

    Your C gives me hope that the Roc will be a vastly different kid than his reports show and that he may learn to swing in about 4 years!

    Go C!

    Oh, I hear you on waiting to add stuff. I think it’s in proportion to how frustrating the report is.

    I do think there’s hope. And I think it’s useful at times to look back at some of those reports and realize how far our kiddos have come. They are amazing little people who do amazing things every single day. HUGS to you!

    Reply
  • 2. mama mara  |  December 4, 2008 at 9:17 pm

    Those reports can really hurt, can’t they? Just once, I’d love to be required to see a specialist whose job is to write a full assessment of all my kids’ strengths!

    Dang, I really like that idea a lot. I might have to do a post on that!

    Reply
  • 3. robinaltman  |  December 5, 2008 at 6:05 am

    Wow. How cool that he’s doing so well! Congratulations, Dudette!

    A lot of times people hand me those books the first time I meet them and say, “Here. You can read this and I’ll get it back next time.” I then contemplate the best way to kill myself that will be least messy.

    Oh, man, I would never just hand it over. That’s just cruel! That seems to be the quickest way to NOT get anything read by the specialist/therapist/doctor!!! Sheesh – I just take it along for reference or perhaps to give them a copy of one or two particular reports. Dang. I guess we parents need a manual or something – Part A. How to not completely alienate and irritate your child’s doctor. 😉

    Reply
  • 4. Holly's Mom  |  December 5, 2008 at 11:30 pm

    I gave you and your blog a bloggy award… “This Blog Measure’s Up” come pick it up here: http://hollyzzdavis.blogspot.com/2008/12/rock-star.html

    Thanks, friend! I’m honored!

    Reply

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