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Saturday, October 31, 2009

Playing and Language for Autistic Youth (PLAY Project)-A "God" Thing

When I discovered the PLAY Project, it was a "God" thing.  Our youngest son had recently been diagnosed with a heart condition called "Wolf Parkinson White Syndrome".  Three years earlier, our oldest had died, at 16, from another, more severe heart condition called "Tetralogy of Fallot".  I couldn't believe God would do this to me, again, so I was definitely in denial about the seriousness of it.  Why, God, were we walking back into the Mott Childrens Hospital Cardiac Unit, again?  Once Bobby had died, I was sure I would never step foot in there, again, but here we were.   It was eerie. 

The first ablation did not work (too close to the AV node and they were cauterizing then), so they told us to wait and see.  My denial was evident when I  asked the doctor if this would keep Ethan out of the draft, if Bush instated one. (It would--this was my plan!)   Unfortunately my plan could not be used because, about a year later, Ethan's heart rate went up higher than the ER machines could measure it (over 300 bpm), They had to stop his heart and restart it with a drug. (This was the second time they had done this).  He thought that was cool.  Me?  Not so much.  Luckily, an old high school friend was his nurse in the ER and she, too, had a kid with a heart condition.  So she kept my spirits up and my angst hidden.

So--It was back to Mott and a new doc--the other had taken a job in Atlanta. :(  But they had started freezing instead of burning so if they got too close to the AV node, they could warm it back up.  (With cauterizing, if they hit the node, he'd have a pacemaker the rest of his life)   While Ethan was getting his wiring repaired (yes--he is FULLY recovered), his nurse noticed that I was reading a Temple Grandin book and asked me about my interest in autism.  Her husband was the Executive Director of the PLAY Project.  She told me all about what they did and I was hooked.  She gave me his phone number and name.  It took me 4 months to call.  The deciding factor was listening to "The Secret" on the way to an interview in Lansing.  The question was "When are you most happy and most yourself?  What brings you joy?" I realized, on that drive, that it is when I am working with kids on the Spectrum.  I went through the interview, but told them, at the end, it wasn't really for me.  I went home and called Jim at the PLAY Project and he invited me to a video review.  


Video reviews are only on Wednesday afternoons and you never know who is going to show up, besides Rick Solomon, M.D, the founder of the PLAY Project.  Every person in a video review has to sign a confidentiality agreement.  A video review is when the Home Consultant (HC) goes to a home visit and videotapes the parents playing with the child.  The HC brings the video to the review on Wednesdays and the team then discusses the video and what ideas might be helpful and what things were not working.  Then Dr. Rick tells the parents, via recorder, what he would like them to continue doing and what to do next.  It was EXCITING!  I learned WHY I was so successful with the kids with whom I worked.  It gave me a "structure" to what I'd been doing!  It gave me direction, when I was at a loss with a kid!  I never knew why I did so well with these kids, but being there and being a part of it taught me about ME!  


God got me to this place in a traumatic, roundabout way.  But I am here and I love it.  I just hope he gives me many more years to do it.
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1 comment:

  1. Karen!!! You are blogging!! I love what you wrote here. I had no idea that you went through that with Ethan. I am so glad he is fully recovered. I enjoyed reading how you came to do this wonderful work that you do! You are off to a perfect start. Congratulations on your blog and I look forward to reading it!! Let me know what blogging questions I can help you with.
    http://picklesandcheeseblog.blogspot.com/

    ReplyDelete

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