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| Wed, 03-28-2007 - 3:35pm |
Hello,
My name is Carmen and I am the mother of two children. My daughter, Jenna is 8 yrs old and my son, Trey is 3 1/2 yrs old. I am writing because Trey was recently diagnosed with PDD-NOS at the Child Study Center in Oklahoma City. I'm not sure where to begin, so I hope y'all can bear with me.
Anyway...since maybe around last year I started becoming a little concerned about Trey. Nothing major, just kinda bothering. He is extremely fixated on letters, numbers and puzzles but I just attributed it to all the Leap Frog crap we have around here. He can count to >100, can read 3-digit numbers, knows the alphabet forwards and backwards, and can read many two and three letter words. Now, those are great things but it also became apparent to me that he preferred to play alone with those things than with other kids and I started reading up about what might be wrong.
I brought it up to my doctor at his two year check up but he didn't see any cause for concern. At Trey's three year check up I brought it up again and he (reluctantly) agreed to send a referral for a developmental assessment at the Child Study Center that had a ridiculously long wait list for 3 year olds.
Long story short (too late), we have recently taken him to the Child Study Center this March for an intensive developmental evaluation and finally have a diagnosis of PDD-NOS. The panel of doctors confirmed that although Trey has very high intelligence and a large vocabulary, he is delayed in social skills and needs speech, occupational and behavioral therapy.
They said he is not classically autistic but believe he may be on the high end of the spectrum (maybe Asperger's) but it's too early to accurately diagnose because he is so young (3 1/2) and many of these verbal skills are still developing but they say his speech is very "contrived" and doesn't have a natural flow.
However, because Trey is intelligent, possesses many social skills and has great eye contact, he has an excellent prognosis that will help him to overcome any challenges he will face. As one of the doctor's said, let's get him the diagnosis so you can get therapies and then three years from now, you'll either be saying "those doctor's didn't know what they were talking about" or "boy, that therapy really worked"!
Anyway, we are beginning the process of getting these therapies for him, both through the school district and privately - but I'm having a lot of trouble finding additional places to get him speech and OT. I have found a lady that will come by to talk to me next week about behavior therapy I can do at home but I'm not sure what to ask, etc... I think I trust her because she came referred from a doctor that the family partner (at the Child Study Center) recommended.
I don't really know what I'm asking for, I guess just to introduce myself and join the community for support, ideas and resources. We are still numb but okay as we know that we are starting early and know that Trey has a lot of things going for him.
Thank you again, Carmen

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I also agree with Amy and Sara. I love that doc, he was making sure a child was covered, because he felt a child needed services.
My child needs services. If only the first doc saw that. He turned 11 today and I have nothing except hope.
We see Stanford on Tues for a second opinion.
Lainie
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