i hate when people treat my child like he is handicapped. well, technically he is, but thats not the only trait he has. im tired of people always assuming that duchenne md is all there is to him, or even worse, that because he doesn't walk, his eyes, ears and mind is also in some way compromised. im sick of people asking me "what does he want to eat?" i dont know ASK HIM. or some people do decide to talk directly to him, they raise their voice a few octives and decibles and slow it down as if they are talking to a 2 year old. HE"S 10! the latest issue we are encountering is at his elementary school. the music teacher decided that a mandatory concert and play is not mandatory for him. she actually asked him " do you want me to make a part for you?" trust me, he was the only one she asked, everyone else had a part, the stage has stairs, she decided he could use his scooter to get to the stairs while all the kids march to the beat, and they continue up the stairs, he will move ( off to the side) of the stage and sing. as if that sound like fun! she knew he was in the class, why not create a play that he can FULLY participate in? (the gym teache managed to get him ice skating, skiing and playing all the sports all winter.) she assumed he wouldn't want to, he probably doesn't, what 4th grade boy wants to sing in front of people? but it's something our family deserves to be a part of. i deserve to be a proud mom clapping for my boys, just like every other mom (even if he is bright red and sulking) he needs to know that he is just like every other child in that class, and he needs to have the bar raised, not lowered. what will he amount to if all we do is expect less of him? a spoiled, and lazy and BORED child thats what. he has enough to deal with without staff at the school widening the gap between him and his peers, he has learning disabilities, and physical disabilities, but his mind is there, and he's smart. he has wit and humor, he regularly puts on performances ( he directs his 4 younger siblings, and acts in them) at home. he comprehends books that i have trouble with, and chooses to read about greek mythology before bed. it just pisses me of that he goes to school, and plays with dinosaurs and makes cookies in special ed, he is far more capeable that that. if we expect nothing, thats what he will provide us. i know the school is sick of hearing from me, but i wont stop expecting the best from them either.

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Comment by Michelle Scaglione on April 8, 2009 at 12:54am
Jenn
If you dont need to, dont home school. It would of been better for my son to have stayed in school. He just didnt want to and I felt I could take care of his health better if he was home. I feel he missed out on the social part. It took Johnny awhile to come into his own but he did and so will your son. I worked with Johnny alot and he reads and writes well. Then again he was the youngest so I could devote time to him. It sounds like you have alot,
Michelle
Comment by jenn on April 7, 2009 at 8:53pm
austin tests very high in cognative intelligence, however he is only at about a first grade level in reading, he functions like a dyslexic, also he struggles alot with numbers, so he is in a special room for math. he is in a regular classroom for other stuff. we also just moved to this school, and we are working the bugs out, i, just frustrated with people not expecting much from him. he also has a para, and we have also talked about homeschooling, i just cant handle it right now( we have 4 little kids..
Comment by Michelle Scaglione on April 7, 2009 at 6:10pm
Jenn
It sounds to mean that your son is intelligent, then why is he in special ed? My son is 16 and home instructed but when he was in school he was main streamed and had a para. I did leave him back in 1st grade. He was struggling with his learning and we didnt know why. Then when he was being diagnosed with Duchenne and learning was not my concern and since the whole world was ending we chose to deal we learning later since that can be fixed. He did very good in school. He chose to be home instructed since 6th grade. He lost the ability to walk at 12 1/2 and informed me that since he could no longer walk into the school he would not be returning. Get him retested and see if with a para he can be main streamed. I have 3 sons. My 16 year old is my youngest and the only one with Duchenne. He at times is smarter than my 19 year old.
michelle

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