[tri-med] Re: Aus Alex's Hearing and CAPD




> [Original Message]
> From: Karen Schuler <karens@xxxxxxxxxxxxxxxx>
 
> Consequently they feel that some children DO learn to hear. Holly the
> overseeing doctor has seen children like Alex and Morgan before - she
> believes us!!!!!!!!! She doesn't think that the ABR's are
wrong............
> They also agree that the approach a lot of us are using - pairing sound
with
> visual information really DOES help them to learn to hear or at least
> understand what they are hearing and develop the cortical responses.

Karen,
This study has been so interesting to all of us, hasn't it?! With all the
hearing issues we dealt with over the years I always thought we were doing
the right things.  When Morgan was diagnosed with the severe hearing loss
and got aided I really thought that the hearing aids helped him.  I really
think the tests were fairly accurate (at the very least.)  Yet, when the
new results showed that he had no hearing loss to speak of the drs. and
others were all so quick to say that the original test was wrong, a
mistake.  I never felt angry toward the people who did the original testing
because I always thought they didn't really do anything wrong.  I felt
angry at myself because I should have been picking up on Morgan's cues
(constantly pulling the aids out of his hears, throwing them, crying when I
put them back in.)  

> So no real answers as yet and I am REALLY eager to get the full analysed
> results, but at least I can stop bashing my head on the CAPD wall and
start
> looking elsewhere. We have also been doing the neurospych battery of
testing
> (that was emotionally painful, for me, and I will do a separate update on
> that one) - and both the neuropsychologist and the research group are
going
> to share the info that they have gathered on Alex (the neuropsych also saw
> this "switch off" from Alex - so that is good!!

I hope they can find out what is going on with Alex.  But I'm happy that
you don't have to worry about CAPD any longer.  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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