We had a good family day yesterday-- sleeping late, cleaning the garage, riding bikes, relaxing in front of the television, etc. So we attempted to go to a basketball game on campus yesterday afternoon.
Jonah can articulate how he's feeling now so after standing on the sidelines for about five minutes, he sloppily ran out the door and said he didn't want to go back to the game because his "ears hurt." We waited until the game was over and ventured back in the gym so he could play with the kids. We weren't there long. We left immediately when we saw him wrestling unsuspecting kids to the floor.
He never recovered last night. Our calm whispers, positive attitudes, and peaceful house didn't help at all. We were AMAZED at how 30 minutes in a gym environment could send him into such a downward spiral. He was asleep by 7 p.m.-- much earlier than usual.
There's been a little talk in the news recently about Sensory Processing Disorder. An article in Time Magazine in December sums it up:
"My doctor doesn't believe in SPD; teachers can't handle it; insurance won't pay for therapy. There's good reason for that. SPD is not listed in medical texts or in the Diagnostic Statistical Manual (DSM), the bible of psychiatric disorders. Doctors acknowledge sensory issues as a common feature of autism and a frequent feature of ADHD but not as a stand-alone disorder. Lucy Jane Miller, a former protégé of Ayres and head of the STAR Center, is spearheading a campaign to change that. She has organized a national effort to have SPD added to the next edition of the DSM, the fifth, due out in 2012. Earning a spot in the DSM V would make it easier for researchers to win grants, kids to get accommodations at school and families to be reimbursed for a course of treatment, which, at the STAR Center, often costs $4,000.
To receive recognition, advocates must provide persuasive evidence that 'this is not just part of autism or ADHD, that it's a better definition of what these kids are experiencing,' says Dr. Darrel Regier, director of research for the American Psychiatric Association and vice chair of the DSM V task force."
Our house yesterday evening would have given them some "persuasive evidence."
And to see my boy this afternoon at home-- calm, in control, sweetly singing to himself-- the difference is unbelievable.
2 comments:
The time has come to but this on the books. My cousin's little boy, I believe, has the same thing as Jonah, but he has never been diagnosed! The word needs to get out so help is available for children and families. Maybe litters to congress or state reps is in order? I don't know if they have influence over this or not?
you know that i empathize with you on all levels. please know, that you are an amazing woman and advocate for your son. this is a daunting journey that we've been asked to take...however...you are doing remarkable work with you boy. love you much.
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