Yes, it is!

Friday, August 13, 2010

Ben's Progress

Ben has been making great progress with his speech in these last couple of weeks.  He is becoming more clear and is able to form new sounds.  His latest is "bo" for boat, "moo" for moon, "muh ma" for my mom, " a du" for all done.  That is in addition to what he has already been saying.  His speech therapist was able to get Ben to say "shoe".  Ben usually pronounces shoe as "oosh".  I haven't been able to solicit the initial "sh" sound since Ben's therapist visited last.  He is back to saying "oosh".
I got the final evaluation report a week ago and after reading it, I can understand now why there is a slight concern for the DiGeorge syndrome.  But again, if Ben does test positive, I'm confident that it will be just a partial deletion.  One of the things mentioned in the report was his almond shaped eyes.  That is considered a soft sign.  I always thought that was just a feature on my maternal side.  And the hypernasality could indicate a possible submucous cleft palate.  As I mentioned before, there has been suspicion that I may have a submucous cleft palate.  I've always had a fistula on my palate which indicates the submucous cleft possibility. 
Somebody once asked why I and Tim would need to be tested for the DiGeorge gene if we aren't having more children.  Well the answer is simple.  If Ben tests positive, then it is important for us, as his parents, to be tested to determine if the syndrome is hereditary or just a fluke.
Despite Ben's struggles with speech, he is a very smart little boy.  People often remark how intelligent Ben seems to be and that makes me feel so much better about Ben's prognosis.  Ben's receptive skills have always measured somewhat ahead.  He understand multiple commands, he has excellent problem solving skills, he catches on to things very quickly.  Ben has always blown me away with his knowledge.  Ben even knows how to get more of what he wants.  For example, for potty training, I used skittles and M&Ms for rewards.  I still give Ben one of those for going potty just because.  Well, he learned how to earn more reward for less output.  He's such a little stinker.  He would sit on the potty and squeeze a tiny bit of urine out and then extend his hand for his reward.  Less than a minute later, the process is repeated.  Of course, after a couple of episodes like this, I figured what he was doing.
Now that we have gotten an initial definitive diagnosis, I am feeling less stress and have even been more open about Ben's speech issues.  It is nothing to be ashamed of nor does it have anything to do with Ben's intelligence.  Now if only I could just shut up those who keep insisting that Ben would talk if others would quit talking for him. That is so not the case.  Apraxia is a legitimate diagnosis.

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