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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My son was just diagnosed this summer and is starting grade 2 next week. We had a meeting today with his teacher, principal, and resource teacher. They couldn't have been more helpful. They had already done their homework on DMD and came to the table with great ideas. As luck would have it the resource teacher will be his class' phys ed teacher this year. We have no problem with him participating as long as the activities are appropriate and inclusive.
My son's school scheduled his PT time during PE, so that he just goes to get stretched instead of participating in PE. That seems to work out great.
I'd rather keep my son included as much as possible. and a little exercise is good for him. We stretch twice a day at home.
I was told by PT that physical therapy is for students to "catch up" to their peers and not for stretching. I was told that at this time Nicolas won't receive PT because of this. Isn't that stupid? So because he doesn't need strength training, they won't stretch him or do anything for him. I also have been told that if he doesn't participate in gym, he won't be able to go outside for recess.

Just today, 3 kids bullied Nicolas and called him names and pushed him down on cement on playground. I'm livid because i was told he would have a college kid supervise him as his aid on the playground... where was the freakin supervision. I've just about had it, and emailed a not so nice email to his teacher and principal letting them know that this won't be tolerated, and of course the reason why (leg breaks), and that if i have to talk to the bullies' parents, i will.

Why is this so hard? Why are kids so mean? Why are teachers and staff so ignorant?
And as a note about the meeting, it went okay. The IEP advocate was good. brought up some concerns, the OT was also helpful and so were the school psychologist and social worker. The others including the principal, PT and gym teacher were pretty useless. His teacher took notes and hopefully listened. The gym teacher was especially useless. she gave me list of what they work on through the year and asked what Nicolas could do... i looked through everything and said "absolutely nothing". You should have seen her face! As if it was an insult! the list is all sports, exercising, climbing, etc. but because he won't be able to go outside at recess and play for a bit, we agreed that he could attend gym, maybe get some stretching advice, and take score or something. I thought this was a good school i was sending him to, and had no problems last year. This year, I'm fighting and have little time to do this. we depend upon schools to give our children education and help them socially and all in a safe environment. If they can't provide a safe environment, then I'm going to have to think of some threat or action to take. I'm just so upset today because of the bully situation. Nicolas is so sweet, and just wants friends and to be able to play.... I can't believe that anyone would be mean to him.
Ok, I'm confused. I'm trying to figure out what to do for my son (recently diagnosed at 7) for PE and thought it was good for them to get exercise, do regular sports like soccer and t-ball and all that stuff? Is it that some PE teachers just don't let them rest, or are making them do other things that they just shouldn't be doing?

I spoke to the PE teacher last night and she obviously doesn't know much about DMD (asked me if push ups were ok-um, no) but said she would email me before each unit and then I could let her know what things Seth could and could not do. Do you think that's ok? I just wonder what would make him feel more left out-not able to do everything the other kids are doing, or not doing PE at all (if that's even an option).
Tracey, I say keep him in PE. Moderate exercise is important. Have regular open communication with all the teachers and administration. Don't rely on just having an IEP. Go see them and talk to them and discuss his abilities. I printed out some information including PPMD's Adaptive PE guide, and gave it to my son's teachers. Most teachers want to help in any way they can, but you'll get much better results working together to find solutions instead of just telling them what they have to do. Nobody likes being dictated to.

go brave :)
We kept Justin(now 13) in PE up until he was in 7th grade. He participated fully at the level of his abilities. he loved it. If they had races or relay races, Justin used his manual chair and the teacher pushed him. All other activites, he participated in as he was able. If he wasnt able, he had a clip board and whistle and helped "coach". When he went full time in the chair(age 9.5) we still kept him in pe. When they had races and things, the pe teacher had Justin put his chair in low gear and the kids would race to see if they could beat his chair. The other kids were getting their exercise and Justin was fully involved with the other kids. Justin was finally taken out of pe at his request. We agreed. Instead of pe, during that time, he gets stretched daily and gets extra tutoring in math.

--Samantha
Tracey,
I have to disagree with keeping him in PE or the thought that moderate exercise is good for your son. I've discussed with Physical Therapists and with Nicolas' doctor (Dr. Wong). while kids will be kids, they exercise enough with play. When they are in PE, depending on the school (and as we know some are way better than others), the children are graded on their abilities and pushed to do things like push ups, active sports, races, etc. These activities are stressful on our son's muscles and inevitably break down their muscles quicker. I'm not saying to keep our sons sitting and resting at all times. No matter what, their muscles will deplete. But to let them be kids and play, then rest, is enough exercise and PE is just not necessary or good for our boys at all. Talk with your doctor and make sure your son knows when he is feeling a bit fatigued so that he knows when to rest. Right now, they're doing some stretches with Nicolas in gym (not from physical therapist, but I'm ok with it right now), and allowing him to keep score in the future and time the other kids. I know that it separates them from the other kids, and we don't want our boys to feel as if they're so different, but the realization is that they are. They can do other things to participate, and especially in other classes such as art and music. PE is just not acceptable to me. I'm not allowing my son to deplete his muscles unnecessarily just to "fit in". Kids get all the exercise they need just by being kids and playing as usual.
Well, I've discussed this with two of the leader neuromuscular specialist in Canada (Dr.Tarnopolsky and Dr.Biggar) and both encourage moderate excercise as long as it's not resistive or fatiging.
Just to clarify...my discussion with Dr Biggar was regarding general activity and stair use, not PE specifically. :)
Jason,

I spoke with Dr. Biggar when Nicolas was first diagnosed too... great guy! He said same thing, and that kids will be kids and that's their basic exercise. We just allow Nicolas to play as usual, just with rests. Just am not happy with my school's PE teacher and their requirements, which of course are active sports, exercise, timed runs, etc.

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