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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Michelle,
Where are you located? It appears that since you have been calling since May for an IEP meeting and no one returned your call, your school district could be out of time line (violation of law) in re-convening the IEP. There are only so many days (30,60?) that they can delay when a parent asks for an IEP. I don't know if this helps much, but maybe it gives you leverage???? Good luck!!!
If it helps, I just had to get a script for my 1st graders ADAPTIVE PE teacher that says basically just because he CAN run, doesn't mean he should!!!! UGH!!!!!!!!!!!!!!!!!!!
Lori,

I'm in Illinois, near Chicago. My IEP rep said what about adaptive PE, and I said no, I want to totally keep him away from gym class in it's entirety. I hear horror stories about gym teachers who think hey, he's still walking, there's nothing the matter with him... do 25 push ups, run around, etc. and that's even with an IEP in place. Can you explain adaptive PE to me? I'd just rather keep him away and maybe have him do speech therapy or stretches for physical therapy at the same time the other kids are running around.
I seriously never understood PE, even when I was a kid... what a silly thing to put in school.
I think in Elem school, PE is really to learn some skills and burn energy! It is also where schools through in alot of stuff like health, etc. As for adaptive PE, it is SUPPOSED to be where the PE teacher adapts to the physical capability of the student. I know some schools are REALLY good at this. I am not convinced mine is! She just wants to tone it down a notch and not really worry about having to adapt. I believe excercise is good for our guys, just not strenous or repititve at all. I have told mine that PE basically should be stretching...mild stretching at that! i dont' want someone stretching him who has no idea what they are doing either!

Good Luck!!!
Michelle Gonzales said:
Lori,

I'm in Illinois, near Chicago. My IEP rep said what about adaptive PE, and I said no, I want to totally keep him away from gym class in it's entirety. I hear horror stories about gym teachers who think hey, he's still walking, there's nothing the matter with him... do 25 push ups, run around, etc. and that's even with an IEP in place. Can you explain adaptive PE to me? I'd just rather keep him away and maybe have him do speech therapy or stretches for physical therapy at the same time the other kids are running around.
I seriously never understood PE, even when I was a kid... what a silly thing to put in school.
Michelle, I grew up in Illinois and I know how anti-parental rights the state can be, We had very similar problems here in Utah and elected to homeschool rather than fight a system that obviously didn't care about our son. I don't know what options there are for you as far as homeschooling or private schooling or home tutoring, but if there is any other option, I would take it. Some public schools are very supportive, but in my experience, they are few and far between. We have to do what we know is right for our children. If that means thinking out of the box and thumbing our nose at a system. that won't listen to us, then so be it.
I am so sorry to hear you are having to deal with this. School should be a safe and fun environment, not a stressful one!
Speaking as a teacher (not in IL, but in WA), I think you might have better luck going through the teacher- request a meeting asap with her and explain the situation in detail, and the reasons (like it will extend his time walking, etc.). Or, if he gets PT/OT services, they can speak with the teacher and the PE teacher.
Before my son was diagnosed, I had never even heard of DMD, and chances are, many people at the school have not either. Even saying that, it does not sound like you are dealing with very empathetic school staff, and I am so sorry. My son is only 4, and I know it could be a long road ahead with the school system. I just can not imagine, as a teacher, not being empathetic to parental requests like this, especially in this situation. Good luck- it should get better as they get to know your son and family more.
Michelle, I also live in Illinois. It is terrible you are having such trouble. It may help if you set up a meeting with the Director of Special Education for your school district. That person may be more familiar with the process of an IEP and help bring the building staff on board with your son's needs.
My son Tim, is in 5th grade this year and he participates in adaptive PE and the experience has been great. The PT works with the adaptive PE teacher to set realistic guidelines and my son gets to participate with his peers and enjoy the social part of PE without taxing his muscles. I don't know where in Illinois you are located but the next FACES meeting in Illinois will be Thursday Sept. 10 7-9 at Nordstrom (Woodfield) Schaumburg, Illinois. It will feature 2 guest speakers both P.T. one specializing in school issues and the other a rehab therapist who works for Rehab Institue of Chicago. If this meeting is close it may be helpful.
Good luck in your struggle. I had a piece of advice given to me last week from a gate agent with an airline and I will pass it along. He told me that all I had to do was tell him or any airline employee what is wrong with TIm and what accomodations he requires and he would take care of it. He suggested demanding such accomodations without giving the employee an opportunity to meet those needs will never provide as good a result as educating and then waiting for the employee to do their job. I think because we live in this crappy Duchenne world all of the time we just assume that others know or sholuld know what we know but sometimes we do need to educate the rest of the world.
Ellen
Thanks all! I live near Aurora Illinois and got the invite for the next FACES meeting. I haven't been able to attend in the past because of scheduling conflicts but would love to attend this meeting. Hopefully my problems will be solved as I have a meeting tomorrow with the Director of Special Education in our area (Kendall County), and with Nicolas' teacher and Vice Principal. I spoke with Nicolas' teacher on Friday and she was more receptive. I was told by Nicolas on Thursday that he had to lift his chair and put on his desk. this was difficult for him. I met with her and she seemed to understand a bit more. I also told her that I could provide pamphlets and booklets for her as a teacher to learn a bit more about DMD, and to understand the limitations, and what is expected. I am not totally impressed with her, really wanted another 1st grade teacher that I already knew and knew would be more receptive, but at least she's hearing me, and wanted to talk with me.

We'll see how things go tomorrow. In a perfect world, first off there'd be no DMD, but in my world, I'd be able to stay home and home school Nicolas. Problem is we need 2 incomes for survival these days!!

I thank you all and will let you know outcome of meeting tomorrow. I'm hoping to get something in place! I already told Nicolas if he were to be asked to participate in gym, or long walks, or lifting chairs, etc. to just say NO, and if there's a problem, have the teacher call me. Trying to get him not to be embarrassed and take care of himself when I'm not there to protect him.
how did the meeting go? Good I hope!!!

Michelle Gonzales said:
Thanks all! I live near Aurora Illinois and got the invite for the next FACES meeting. I haven't been able to attend in the past because of scheduling conflicts but would love to attend this meeting. Hopefully my problems will be solved as I have a meeting tomorrow with the Director of Special Education in our area (Kendall County), and with Nicolas' teacher and Vice Principal. I spoke with Nicolas' teacher on Friday and she was more receptive. I was told by Nicolas on Thursday that he had to lift his chair and put on his desk. this was difficult for him. I met with her and she seemed to understand a bit more. I also told her that I could provide pamphlets and booklets for her as a teacher to learn a bit more about DMD, and to understand the limitations, and what is expected. I am not totally impressed with her, really wanted another 1st grade teacher that I already knew and knew would be more receptive, but at least she's hearing me, and wanted to talk with me.

We'll see how things go tomorrow. In a perfect world, first off there'd be no DMD, but in my world, I'd be able to stay home and home school Nicolas. Problem is we need 2 incomes for survival these days!!

I thank you all and will let you know outcome of meeting tomorrow. I'm hoping to get something in place! I already told Nicolas if he were to be asked to participate in gym, or long walks, or lifting chairs, etc. to just say NO, and if there's a problem, have the teacher call me. Trying to get him not to be embarrassed and take care of himself when I'm not there to protect him.
Michelle,
Just know that this is the perfect place for venting. I have had my share too. My son starts next week in NJ and I don't know what we are going to do with the whole drop off and pick up situation. I know what you mean though about not being in a wheelchair yet. People just don't get it. They still have trouble getting around. My son starts middle school and it is crowded before and after school. I hope I can figure something out so its easier for him. Well anyway, take care and I hope you have a better day!
Dina
My son started grade three this year...mobility continues to be a problem...seems like it would be easier if he was in a wheelchair, then at least i would know that he is not getting knocked over....Keep your head up Michelle!!!! Just be there for your little guy and try to stay postive!!! xo
p.s. this is the best place to vent...anywhere else and they simply wouldn't understand...:)
My son is not of age yet, but I heard a speaker awhile back on school issues. I'm going to mess up his name, but I think it's Brian Deneger on PPMD who can help answer questions about the schools. He became quite an expert suing the school system when they wouldn't allow his son to attend some years back. It's sad, there are so many great teachers out there, but it seems like the majority just don't care. Schools have become about employing adults instead of teaching children. Good luck! Good work being such a great advocate for you son!

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