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Joined: Jan 2010
Posts: 72
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OP
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Joined: Jan 2010
Posts: 72 |
We have been busy getting ds9 tested after the persona that administered his WISCand WIAT suggested LD based on scatter. Never in a million years did I think there would be an issue with reading- he is a PROLIFIC- Obsessive reader BUT..... Now I have learned that he has reading ineffeciencies- low phonemic awareness( he was a spontaneous sight reader and that is not surprising) and he is a really bad speller- no consistency. She said in the report dyslexic but most school administrators would have a hard time identifying his as Dyslexic because he is so advanced in reading( maxed out the comprehension at 90%- at grade 12.9 but had to reread many times to get there). Dysgraphia and the big one- Severe CAPD. What do I do now? What has worked for your kids?
We have an appt to check hearing with and audiologist- to make sure hearing is ok. An appt set up with the Callier center to get more info on CAPD. I also found a therapeutic ophthalmologist to check the inefficiencies- also check hyperlexia.
Remember my son has PANDAS, SPD and for the past few years before we identified it- this and his health was the main concern. I feel like I have been hit in the stomach AGAIN!!! Why does this bright little boy have so much to overcome?????
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Joined: Jan 2010
Posts: 757
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Joined: Jan 2010
Posts: 757 |
Yes, definitely get an audiology exam for hearing. My hearing impaired son has done very, very well with piano lessons. Getting your child into music can be a great idea. If it really pans out, you can also look into an FM system- the teacher wears a microphone and it transmits their voice across the room to a speaker on your child's desk. It goes into my son's hearing aid, which is cool. That reduces the noise to signal ratio.
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Joined: Sep 2011
Posts: 3,363
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Joined: Sep 2011
Posts: 3,363 |
bgb, sorry you have yet another set of challenges to see your ds through, but you'll get there and he'll be a-ok. Even though it feels like you've been hit in the stomach right now, it's a *really* good thing you've had the evaluations and discovered the CAPD etc now while he's still young!
I'm sorry I don't have much practical advice right now, but getting a handle on how to move forward is a really important thing, as reading demands will ramp up significantly as your ds moves to middle school.
Hang in there!
polarbear
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Joined: Jan 2010
Posts: 72
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OP
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Joined: Jan 2010
Posts: 72 |
Thanks!!! I wish I could get all the appts sooner vs later! I wish I had a crystal ball to see how it all works out. He has Aspie traits but is not Aspie( according to the neurologist that said- your son is a genius- very few people in the world like him his main issue is going to be for him to learn how to deal with the rest of the world.) when I asked his PANDAS doc if he thought he was Aspie- and he said does it really matter since we are dealing with a lot of the issues- i do admit he does have Aspie traits. The neurologists response to the scatter was- so in one area he is normal- technically it's a learning disability but no one is going to acknowledge it because he is so advanced. I said I still want to know what it is and did the testing- now seeing the results I wonder what to think because the tester said it's severe. Arrrrgg!!
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Joined: Apr 2006
Posts: 5
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Junior Member
Joined: Apr 2006
Posts: 5 |
If you haven't already be sure and have a ADHD evaluation by an ADHD specialist..my dd was mis-diagnosed with severe CAPD (tested in the low 2%) , Dysgraphia,reading dyslexia,the OE's, etc. Turns out it was all ADHD but "she didn't look it" and on the proper meds all of it is gone.I ran across her neuropsych report and the all the ADHD flags were there --waving--and it was never mentioned.It never crossed my radar that CAPD and dysgraphia are almost hallmark for ADHD. How I wish we had know this 10 years ago because the burdens of CAPD and dysgraphia are huge especially in high school and college
Kristine G
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Joined: Apr 2010
Posts: 2,498
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Joined: Apr 2010
Posts: 2,498 |
He has Aspie traits but is not Aspie( according to the neurologist that said- your son is a genius- very few people in the world like him his main issue is going to be for him to learn how to deal with the rest of the world.) when I asked his PANDAS doc if he thought he was Aspie- and he said does it really matter since we are dealing with a lot of the issues- i do admit he does have Aspie traits. The neurologists response to the scatter was- so in one area he is normal- technically it's a learning disability but no one is going to acknowledge it because he is so advanced. I said I still want to know what it is and did the testing- now seeing the results I wonder what to think because the tester said it's severe. Arrrrgg!! BG, I hope you get good answers. I'm a little surprised that they say "what does it matter" if the dx is complete and accurate. The whole point of dx is to differentiate-- that is, to get to the point where you know quite precisely what you're dealing with, which contributes greatly to knowing what to do about it. Treating PANDAS is quite different from treating AS. I would insist on getting them to be complete and thorough in making a diagnosis, and being very clear what they're ruling out and why. DeeDee
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