I'm probably just posting this to vent. My son just started 1st grade, all day school yesterday. I have an IEP for speech in place and have called and left messages for IEP for everything else since May of this year, and just finally spoke with someone yesterday. He was very receptive and is going to put things in play, BUT my big problem already is the school.

I emailed his teacher and principal (because we only find out who teacher will be 2 days before school starts!!), and gave them my own version of the IEP. What Nicolas can and cannot do, what I will and won't allow, etc. All the usual stuff for us parents..... no stairs, no long walks, water at desk, needing assistance, have him leave school by nearest door (right next to classroom instead of exiting down a long hall to save energy).

So I get this call from his teacher yesterday about an hour before school lets out saying the principal doesn't want Nicolas to exit school at nearest exit and he has to exit at main exit (down the very long hall). I asked why should my child expend his energy and tire himself out when we had agreed on this last year. Well that excuse was because last year was half day, and at end of day it's "chaotic" and "hectic". So I told her, I'd go into the school and pick him up.

When I picked him up, he was outside of his classroom and no teacher or aid were near. I left at the closest exit, only to have his teacher run out after me that she needs to know when I'm there picking him up (I get it safety issue, but then don't leave my kid alone in a hall!!).

Anyway, I called my IEP guy and left a nasty message of "does my kid have to be in a wheelchair to get the benefits he deserves?" and "is it because he can still walk that his teacher and principal don't believe there's any concern". It went on and on... I was fuming. Then I found out they took his water away from him AND gave his class a tour around the school!! What the heck! Nicolas told me that the gym teacher gave his teacher a funny look when she was told that Nicolas couldn't participate in gym. Now my son is embarrassed and today is only his second day of school.

I know I'm not the only one battling the school system and dealing with idiots who can't understand what my son is going through. I've explained this last year and have to go through it again, which I'm okay with, but wish that the teacher and principal and teachers's aids and other class teachers (such as PE), were more understanding and accepting and empathetic, rather than being just plain oblivious and hard nosed about their policies.

I have policies too. They are to keep my son as safe and happy as possible in his learning environment. Who the freak cares what door he goes out of or that he has rest or drink water at his desk?

It's an uphill battle and I'm a hot head so I'm sure I'll make some enemies at his school. But I'm not going to give in because of their chaos. That's not my problem.

Thanks for letting me vent!
Michelle Gonzales

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There was a lot of discussion about PE and exercise in an older thread, linked here.

A good paper from the National Center on Physical Activity and Disability at the University of Illinois - Chicago.
on the subject of exercise and DMD can be found here.

Michelle - I feel for you with your bully situation and uncooperative staff. We're lucky, haven't had any issues with the other kids, and the staff has been terrific so far. Bullying is an extremely serious offense in our school district, it's a zero tolerance kind of environment for that.
Thanks Keith! I will be discussing with his teacher. Problem is, I'm not sure she really cares at this point. Maybe I've overstepped by being so involved, but isn't that what parents are supposed to do? I will have MDA out to his school again this year to discuss. I will also request the school counselor and psychologist to pay a visit to classroom and maybe sensitize the kids to Nicolas' needs and issues. It just gets tiring always having to advocate and defend.
Good luck Michelle :)
Thanks, Keith! Very helpful. But now I might be more confused. :)

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