Anyone that has been there, done that, I need your advise! My five year old son with DMD is starting kindergarten in August and I dont know what to do. What does he need of the school? Should I request a special aid for him? He is still walking, but he is slower and clumsier than the other kids. I dont want him to be trampled by other kids throughout the day. What is the best thing to do for my son?

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Christina, I hope this helps...


1. Contact the school and discuss the situation now. I highly recommend getting a conference with any teachers he'll be working with that year, especially PE. Please ensure you address the PE teacher about your son. PPMD provides so many DVDs to visualize for others what DMD means to us and our children's lives.

2. Look up Section 504, which is a law to help our children, and IEP - Individualized Education Plan. PPMD has some information on the site for this info and you could use 504 and IEP as keywords in searches to read about others who have discussed similar info.

3. Determine how he is getting back and forth to school, plus is it full day or part day kindergarten. Going by bus is going to be tricky for only 2 reasons - the stairs and how far a walk it is to his classroom. If this is the mode of transportation, you should really go over what your expectations are of the school. Will they carry him down the stairs? Will they carry him to his class? Do they have a wheelchair to help take him to his class and later back to the bus? Do you need to provide a wheelchair? I'm afraid that since both my husband and I work, we have to invest in wheelchair.

4. Have discussions with the school counselor and his teacher about social issues. I have read on the blogs that kids around 5/6 start to really see how they are different from their friends. This is the time to positively influence the other kids to be your son's special helper/buddy.

5. Take a deep breath. Starting kindergarten is going to be the biggest thing on his mind. As long as you stay strong and be his advocate, he'll be the happiest and luckiest boy in the class.
Also, go to the parentprojectmd.org website, there is a section for education. Read and print copies for teacher etc. You should get an IEP meeting scheduled son for adaptive PE etc. If your son is slower, have the teacher appoint him as leader to walk with teacher (if he can). They did this for my son in Kindergarten. The first day, he got lost because the class left him and the teacher did not realize he dropped something and fell behind.

If he has a hard time getting off an on floor quickly, have them designate a small chair for him. All of Alex's classes did this.

THe 504 and IEP are essential to get things documented to help him.

Good luck. I remember being so scared when Alex started school. He is going into 4th grade and luckily still mobile.
Hi

Typically the school has to do an assessment for services. Usually a diagnosis from you doc will get him in the door and then you figure out what he needs. Weekly PT is a must. Have him assessed by the OT. Have them check out seating for your son. My son is 17 and still doesn't need an aid, so don't expect one. If he needs one fight for it (it may be just at recess). You need to contact the school district before school starts. Best wishes for an emotional transition (all parents of K feel this way).

Karen
In addition to all the helpful information below - I have also planned a visit to Bobby's class where his entire grade comes and I explain why Bobby is how he is. In kindergarten, it was to explain why he has to use a special chair so he didn't have to sit all the way on the floor and why he would be using the elevator. I didn't go into explicit detail about DMD, but explained how it was important that they be careful around Bobby and not push him or trip him. Bobby will be in 3rd grade this year - and I am planning on doing this again. The kids all know Bobby and he has a lot of friends - I think it helps for them to understand and give them the opportunity to ask questions.
Hi Christina,
As a mom whose baby left for kindergarten last school year, first of all, breath - he'll be okay. Having said that, this "baby" of mine is also my DMD boy (dignosed April 2008 - so I'm right there with you). As awkward as it was, my husband and I met with the school principal, nurse, PT, OT, his teachers, PE, school counselor etc before school started last year. I plan on doing this again this year and thankfully we have no physical changes, but we're doing it. You may want to see if someone from your local MDA would attend the meeting with you. I thought that was offered to us. I say awkward, because at the time Kyle had no limitations (although I sat in the meeting in a pool of tears), other than for the teachers to "listen" to his cues (ie. in PE class if he is tired, let him sit, or "help" the teacher). I let them know that he will probably hold on to the railing to go up the stairs. Right now he does not require any OT or PT in school, nor does he have any learning disabilities so we didn't even do an IEP although it was brought up; we do any PT required at home. My husband and I feel very strongly about letting Kyle be a child as much as possible, so the less "special" attention that is drawn to him the better - again, that's our view. His kindergarten year went great. His teacher kept me informed of any issues whatsoever, even if he just fell once during the day; so if you can establish a good relationship with his teacher and even the school nurse - that would be a big plus. I'm also a strong believer in our local school district and I know they will be there for us. I think it helps being in a very small school district, people know each other, and I am also on the school board (and will now make every attempt to remain on the school board).
I wish you the best.
Thank you all for the wonderful advise! I am curious about the special chair a few of you mentioned. Why do they need it and how do i know if my son needs it. It takes him a while to get up and it seems to take alot, is that why?
The chair can be just a classroom chair. Kindergarten classes spend part of their time sitting on the floor for stories, etc., and if a chair is available for your son to use, then he doesn't have to pull himself up from the floor as often.

A couple of extra tips on this:

1. It's helpful if more than one chair can be open for other children to use, too, so that your son isn't the only one -- so that he's not set apart from the others.

2. Your son should be allowed to make his own decisions on whether he wants to use a chair instead of the floor. He knows how much work he has to do to get up. The teacher should make sure he knows it's an option, but shouldn't pressure him or make him feel like he *has* to use a chair (especially in front of the class).

My son just finished kindergarten so we went through the same thing just last year. Read the "Education Matters" booklets & give some to the school. Advise the teachers that he should be allowed to rest as needed during physical activity (such as PE & recess).

Click here for Education Matters booklets.
One thing my son's kindergarten teacher added to his IEP that I didn't even think of was separate crayons, scissors, etc, to minimize the risk that he would pick up germs from the other kids and get sick - especially during flu season.

I thought that was really smart of her to think of that one...
Are they more likely to get sick alot? what have you noticed with your son being sick? Has he gotten pnemonia?

Mindy said:
One thing my son's kindergarten teacher added to his IEP that I didn't even think of was separate crayons, scissors, etc, to minimize the risk that he would pick up germs from the other kids and get sick - especially during flu season.

I thought that was really smart of her to think of that one...
ooh good idea, i thought as a mom of two boys in grade 5 and 1 i had thought of everything, im going to get this one added! thanks


Mindy said:
One thing my son's kindergarten teacher added to his IEP that I didn't even think of was separate crayons, scissors, etc, to minimize the risk that he would pick up germs from the other kids and get sick - especially during flu season.

I thought that was really smart of her to think of that one...
They are more likely to get sick if they're on steroids. They also can get hit harder because of the respiratory weakness. Also, if they get stomach flu and can't keep the steroid down, that's a problem as well.

Aidan hasn't had pneumonia, but this year (6) was the first year he was actually able to blow out birthday candles without help, so I'm sure the weakness is there...
I believe what we did when my son was in K(5years ago) was to meet with all of his teachers for the year and go over the changes that had occured over the summer to make sure that any changes were known prior to actually starting school and ensure he had all the help he needed. My son also has autistic tendencies so he was able to get an aide at school. However she was not just his aide. Christian was in what is called an inclusionary calss which means it had both special needs kids and non special needs kids. He also had an IEP for school. It was also beneficial for the teacher and the class to be able to get an idea about DMD not detailed but general information so they would be able to understand aout his problems. I also have a book about a boy with DMD that I lend to the school every year that is geared to wards kids to help them understand what is happening to and with Christian although I don't think it would be appropriate for kindergarten age but for future is is called Precious Time by Thomas Bergman. It is a great book.

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