My son is is starting first grade in a week and I am a mess.  kindergarten was hard enough and they had bathrooms in the classroom and only a three hour day.  Now I am supposed to have the IEP meeting and I have no idea what my son needs this year.  What if he gets knocked over on his way to the bathroom?  what if he gets lost?  what if he's not ready?  I am newly pregnant with my third child and I am so freaked and stressed about my son that I worry about the baby.  Does anybody have previous experience and/or advice?

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First thing you need to do is relax. He will do great. My son is going into 4th grade this year and is still as mobile as when he was in 1st. Go to the IEP and take with you the education matters books for school personel that you can order free from this site. Ask for PT/OT. He may need extra help or time with some subjects, but remember that you can add or delete anything on the IEP at any time. Get to know the teacher and email often. Volunteer for class functions. Our school walks to alot of fieldtrips, so I just drive him. He just might fall or get lost, but so will all of the other kids.

Education Matters: A Teacher’s Guide to Duchenne Muscular Dystrophy, and Adaptive PE: A Teacher’s Guide to Duchenne Muscular Dystrophy
My son is 13 and in 8th grade this year. We have had an IEP since he was 4 years old. Usually there will be extra aides in the class to assist your son. If your school has OT/PT accept those services. We had the school bring in a rifton chair-wooden chair with foot support so he would have better support and his feet would not hang down. Let the teachers know about any concerns and educate everyone about muscular dystrophy. Everything is going to be ok-1st grade will be a lot of fun for your son.

christine good said:
First thing you need to do is relax. He will do great. My son is going into 4th grade this year and is still as mobile as when he was in 1st. Go to the IEP and take with you the education matters books for school personel that you can order free from this site. Ask for PT/OT. He may need extra help or time with some subjects, but remember that you can add or delete anything on the IEP at any time. Get to know the teacher and email often. Volunteer for class functions. Our school walks to alot of fieldtrips, so I just drive him. He just might fall or get lost, but so will all of the other kids.

Education Matters: A Teacher’s Guide to Duchenne Muscular Dystrophy, and Adaptive PE: A Teacher’s Guide to Duchenne Muscular Dystrophy
Hi Christina,

Our son has just started full-day kindergarten in a school that goes to 4th grade. Like you, we were worried about his safety in this bigger place with bigger kids who are just banging around as kids do. We insisted that he have a one-on-one on the playground and in PE, as well as someone to help him on and off the bus. It sounds like your son would benefit from the same. Additionally, Gus has PT and OT, and he is able to go to a therapy pool nearby for swimming each week.

Remember that it is federal law that the school meets the needs of your son in "the least restrictive environment" possible. That means he shouldn't be pulled into a special room unless it's absolutely justified. If the school can't meet his needs, then the district has to pay for an outplacement, which usually costs $75,000-$125,000 or more. Because of that, it is in the school's best interest to meet your son's needs.

Also, by law, your son has to have a signed IEP - take the unsigned copy to his doctor, to your local MDA chapter, read it against PPMD's document (http://www.parentprojectmd.org/site/DocServer/EdMatters-TeachersGui...)...the important thing is that you DON'T sign it until you feel comfortable.

All the best as you go through the IEP process!
First of all, thank you all for the advise. I met with the school yesterday and they are telling me that unless Isaiah has a learning disability along with the physical, he wont qualify for an IEP!! is this true?

Steve Dreher said:
Hi Christina,

Our son has just started full-day kindergarten in a school that goes to 4th grade. Like you, we were worried about his safety in this bigger place with bigger kids who are just banging around as kids do. We insisted that he have a one-on-one on the playground and in PE, as well as someone to help him on and off the bus. It sounds like your son would benefit from the same. Additionally, Gus has PT and OT, and he is able to go to a therapy pool nearby for swimming each week.

Remember that it is federal law that the school meets the needs of your son in "the least restrictive environment" possible. That means he shouldn't be pulled into a special room unless it's absolutely justified. If the school can't meet his needs, then the district has to pay for an outplacement, which usually costs $75,000-$125,000 or more. Because of that, it is in the school's best interest to meet your son's needs.

Also, by law, your son has to have a signed IEP - take the unsigned copy to his doctor, to your local MDA chapter, read it against PPMD's document (http://www.parentprojectmd.org/site/DocServer/EdMatters-TeachersGui...)...the important thing is that you DON'T sign it until you feel comfortable.

All the best as you go through the IEP process!
Hi Again Christina,

It sounds like the school may make you work a bit, but you absolutely have the law on your side.

To begin, the first question a school has to ask in establishing an IEP is not whether or not a child has a learning disability but rather if the disability will impact his ability to learn in the classroom environment. For our son, that was all we had to argue because, clearly, a kindergarten/first grade curriculum is often based on movement, exploration, etc. Additionally, it is more than likely that, without the proper supports, the psychological impacts of DMD will affect our boys ability to learn.

If the school is claiming your son has no disability, you have a right, based on the tendency of DMD boys to have speech/language issues as well obsessive/compulsive behaviors, to ask that your son have a full battery of tests. Just to be clear, any member of a student's 'team' can make a referral for tests, and you are a member of that team, so you can make a referral. I would be very surprised if your son's pediatrician would not also support the following tests:

A PT Eval
A SLP (Speech/Language) Eval
An OT Eval
The Wechsler Preschool and Primary Scale of Intelligence (WPPSI) or The Woodcock Johnson Test or some equivalent.
A Differential Ability Scales (DAS) Test

Definitely get this printed and take it to the school with you: http://www.parentprojectmd.org/site/DocServer/EdMatters-TeachersGui...

In the end, there's a very good chance that your son will demonstrate the need to be coded based on any or all of these these tests.

The school may push back, probably for financial reasons, but I've been teaching for 15 years and I know from experience that the squeaky wheel will get the grease, so be the squeaky wheel for your son's sake!

I would also be surprised if your local MDA chapter didn't have an advocate to help you with this.

If you want to talk about this, send me an e-mail and I'd be happy to give you a call. You are not alone in feeling overwhelmed by the Special Ed. laws and testing - MANY parents get an advocate to help them negotiate it all.

All the best,

Steve
One more thing, Christina, even if, after all those tests, the school continues to insist that your son does not qualify for an IEP, he is definitely eligible for a 504 plan, which comes under the Americans with Disabilities Act and is available to anyone who has "physical or mental impairment which substantially limits one or more major life activities." Under a 504, in a school setting, your son would be eligible for OT, PT, adaptive PE, and a large number of other modifications.

Typically, an IEP is preferable because it is more detailed and more closely monitored by the Special Education Staff, but they are both legal documents that must be followed by the school.
Christina,

This came up recently in another strand.

http://duchennecommunity.ning.com/forum/topics/no-iep
A couple of things that my son's teacher/PT put in his IEP that I didn't even think of that I thought were great:
his own supplies so that he doesn't have to share - cuts down on germ sharing to keep him healthy
making sure he's seated so that he doesn't have to twist to see the board
floor chair with support or regular chair for when they're seated at assemblies, etc. on the floor.

There are others, but I didn't think of these...

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