I've just sent in a request for an ARD meeting for Sam. He's had an IEP for several years, but I think he needs some extra help. His grade in language arts is consistantly a C. Right now, he's got a D. It's just getting worse. He's already being pulled into a small group a few times a week for extra help, but I don't think it's enough. He can read, but he's slower. His real problem seems to be tests. I don't know if they're going too fast for him or what. I've got to find out. I personally feel he may need to be separated for tests so he can focus. He's very easily distracted and also likes to be the class clown. Not a good combo. Do you think it would be appropriate to ask for an aide for him at this point? Getting around isn't an issue right now, but I really think he'd benefit from a little more one on one.

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No, asking for a aide right now may be exactly what your son needs!

Good luck,
Cheryl
Hi Laurie,
I think that DMD boys lack skeletal muscle but they also lack the smaller dystrophin iso form in the brain. I am not saying that Sam is not smart - I think he is. But, perhaps b/c of the lack of dystophin, he learns differently and responds differently - at least that is what I have learned. I read that DMD boys can be easily distracted, respond more slowly and have certain areas that they have trouble with - i.e. phoenetic packages, short term memory, following multi step directions. I think you need to talk to his teacher and perhaps you could to go and see Dr. Poysky at Baylor University. He could do some acessments on Sam and see where he needs help and most likely make recommendations that would help him. Not sure if that would be a one on one aid but he is good b/c besides being a neuropsychologist, he has a DMD son. Please note that this is regardless of IQ...it's more of a learning issue and I think could be addressed with help and hard work.
Good luck Laurie and know that I am pulling for you and Sam!
Char Burke
Laurie,
I agree with Char and whether you go to Baylor or to another neuropsychologist, it is definitely a good idea to get some baselines. I would first ask the school to do a comprehensive neuro eval on him. Since he has had an IEP for awhile now, have you already had that done? They should do them every 3 years for his IEP. If when he first received his IEP/services they did not do a comprehensive eval, meaning by the OT/PT, and also ones for IQ, achievement, and focus/attention, they need to do that. If they have and you think it didn't provide enough/valid information, you can ask them to pay for you to go to a private neuropysch. or...you can just forget all that and just take him to one privately anyway. That's what I did, because I feel that when the school psych does it, the results may somehow end up a little "skewed". Anyway the eval ranges from $1500 to $2000. I got my insurance to pay for it but you can't say it is specifically for school, but for possible counseling/therapy (medically based). This information is what you need at this point to find out what your next steps are. As a sidenote, I believe that if your son is one of the many who do have attentional issues, the one-on-one aide/paraprofessional is vital...this is my opinion, I know there are some who don't feel the same as I do...it's just been a God-send for my son (he's had one for 4 years). Good luck!
Kelli
kmajmiller@hotmail.com

Char Burke said:
Hi Laurie,
I think that DMD boys lack skeletal muscle but they also lack the smaller dystrophin iso form in the brain. I am not saying that Sam is not smart - I think he is. But, perhaps b/c of the lack of dystophin, he learns differently and responds differently - at least that is what I have learned. I read that DMD boys can be easily distracted, respond more slowly and have certain areas that they have trouble with - i.e. phoenetic packages, short term memory, following multi step directions. I think you need to talk to his teacher and perhaps you could to go and see Dr. Poysky at Baylor University. He could do some acessments on Sam and see where he needs help and most likely make recommendations that would help him. Not sure if that would be a one on one aid but he is good b/c besides being a neuropsychologist, he has a DMD son. Please note that this is regardless of IQ...it's more of a learning issue and I think could be addressed with help and hard work.
Good luck Laurie and know that I am pulling for you and Sam!
Char Burke

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