Hi everyone,
I would appreciate any pointers regarding speaking to 2nd/3rd grade students about sons MD.  We are bringing his chair - show and tell still works with this age range, but how do I introduce them to William, his chair and why he uses it?
Thanks in advance.

Anne H.

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Here is a link to an MDA publication written for kids that might give you some ideas.

http://www.mda.org/publications/nobody/

Susan
I just went to my son's 1st grade class and asked them if they had noticed that Seph does not run as fast as them most of the time and how maybe he is slower getting off the floor when playing games. They, of course, nodded yes and I told them that that was because he has MD. That MD makes his muscles a bit weaker than everyone elses and he gets tired more easily. I didn't bring his scooter, but did tell them about it. I also asked if they liked taking medicine and they all said no and I told them that Seph takes about 7-8 pills a day and has to get a shot a day (he is on HgH). They were all amazed! Then, as a final event, I had the firemen come with 2 pairs of firemen's boots. I had each student (who wanted to)get in the boots and had them either try to run, get off the floor, or just walk in the boots to demonstrate how heavy or tired Seph's muscles get.
I know they were interested as I ran into a parent the next week who told me that his son came home talking all about it. Overall it was a very good experience. Seph was out the day I talked, so he wasn't there, but next year he may be.
Hope this helps! good luck!
LOVE the firemen boots idea. Very creative.

Lori Ware said:
I just went to my son's 1st grade class and asked them if they had noticed that Seph does not run as fast as them most of the time and how maybe he is slower getting off the floor when playing games. They, of course, nodded yes and I told them that that was because he has MD. That MD makes his muscles a bit weaker than everyone elses and he gets tired more easily. I didn't bring his scooter, but did tell them about it. I also asked if they liked taking medicine and they all said no and I told them that Seph takes about 7-8 pills a day and has to get a shot a day (he is on HgH). They were all amazed! Then, as a final event, I had the firemen come with 2 pairs of firemen's boots. I had each student (who wanted to)get in the boots and had them either try to run, get off the floor, or just walk in the boots to demonstrate how heavy or tired Seph's muscles get.
I know they were interested as I ran into a parent the next week who told me that his son came home talking all about it. Overall it was a very good experience. Seph was out the day I talked, so he wasn't there, but next year he may be.
Hope this helps! good luck!
THanks Lisa...I stole it from someone! I am not that creative!! But that is why we post here...to share!

Liisa Underwood said:
LOVE the firemen boots idea. Very creative.

Lori Ware said:
I just went to my son's 1st grade class and asked them if they had noticed that Seph does not run as fast as them most of the time and how maybe he is slower getting off the floor when playing games. They, of course, nodded yes and I told them that that was because he has MD. That MD makes his muscles a bit weaker than everyone elses and he gets tired more easily. I didn't bring his scooter, but did tell them about it. I also asked if they liked taking medicine and they all said no and I told them that Seph takes about 7-8 pills a day and has to get a shot a day (he is on HgH). They were all amazed! Then, as a final event, I had the firemen come with 2 pairs of firemen's boots. I had each student (who wanted to)get in the boots and had them either try to run, get off the floor, or just walk in the boots to demonstrate how heavy or tired Seph's muscles get.
I know they were interested as I ran into a parent the next week who told me that his son came home talking all about it. Overall it was a very good experience. Seph was out the day I talked, so he wasn't there, but next year he may be.
Hope this helps! good luck!
I can't speak from experience just yet, but soon should be able to. Our oldest boy, Hayden, just started preschool. However, his cousin is a few years older. The physical and occupational therapists both came down from Regina (about an hour away) and spoke to the school about the condition.

We're also fortunate that John Davidson, founder of Jesse's Journey (http://jessesjourney.com) will be coming to visit us in March, and wants to do a presentation at the school as well. He's done a lot of these over the years and apparently does a wonderful job of explaining things to kids. I'll try and remember to report back here on how it went and what sort of things he talks about.
You can also contact your local MDA chapter, which is what we did, and had a representative come out and read one of their age appropriate booklets to the class. They also brought enough to hand out to all the students, and did a balloon experiment - something about blowing it up and that's your muscles, and then deflate it and it's supposed to be related to DMD somehow (forgot, but it was a good idea at the time!). The kids interacted and asked some intelligent questions. They related Nicolas' disease with having to help grandma up the stairs and when they broke a leg, etc. They also saw nicolas' wheelchair, and were told that when someone has a wheelchair, that is an extension of them so don't touch or push unless you ask... just like you wouldn't want someone pushing you or touching you if you don't want them to. It was very helpful, and we are going to have these classroom discussions for every year since the kids change around. Plus they'll get updated as to his condition and get more age appropriate booklets, etc.

It helps to be there with MDA or whoever you chose to have there to also answer any questions. Nicolas at first thought he'd be embarrassed by the attention, but he wasn't and liked the idea that the kids related to him with having someone they knew who needed help walking or with a wheelchair. School has been less traumatic for him since the kids have been educated about DMD. But the kids still treat him like just another kid - which is what we all want for our boys!!

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