My son is now is 2nd grade, and he struggles with stairs, so we are asking for the elevator key and he will use ramps instead of stairs when possible, sit in a chair rather than on the floor etc..What my teacher wants to know is what she should say to the class.  I heard that sometimes MDA will come and give a demonstration and use good visuals for the students, but I am in Belgium, so this is not possible.  I thought about having her say, some kids wear glasses (their eyes are bad), some wear hearing aids (their ears are not good), etc.....  Just want to hear from some others what they have done.

Thanks.  Carolyn

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Our approach is "his legs are a little different and sometimes he needs some help"
The teacher of course knows his diagnosis but we've asked it to be kept confidential.
My son was in kindergarten last year and got to sit in a special chair for circle time. A few students asked why he got to sit in the "special chair" and they all had to sit on the floor. The teacher's response: "Sally has to wear glasses because her doctor told her to; Johnny has to eat special food because his doctor told him to; and Bobby has to sit in the special chair at circle time because his doctor told him to." That was the end of the conversation at that point, and seemed to satisfy the needs of this particular age group. I say this as a parent who has chosen at this point not to share any details with the class because my son is not showing signs that radically separate him from his peer group at this point and there has not been any questioning of his abilities, or needs (other than above). I think some of what you choose to tell the class (and how you choose to do that) depends on the questions that are arising from the students (if any) vs. your (or your child's teachers') feeling to proactively address the situation if his fellow students are not yet asking questions. We just had a meeting with our child's first grade teacher regarding how to address his needs for the year and integrate them into the classroom. Overall we have settled on the approach that "because his doctor says so" without explaining the details until we have a good idea on how my son's fellow students react to the changes. Most of the things we have done are transparent and/or can apply to all students, so it should not appear as if it applies to only my son. When and if it becomes necessary to have the official explanation shared with the class, I am sure we will utilize the resources of PPMD and/or MDA to either come up with a program on our own or have them come to the class as a special event. I think there are also some good resources already here on PPMD community regarding how things were explained to the class and at what point parents felt the need to do so. Good luck, I would also be ready to hear even more details for when I need to do this myself.
Our son Jonathon is in the 3rd grade this year. We requested use of the elevator this year and of course all the kids want to know why he and his elevator buddy are the only ones to get to ride. His teacher asked what she could say to the class. Jonathon knows he has MD but he does not know about Duchenne. He knows his muscles are more special and that we have to take care of them. Thus, the limited running, stair use, no jumping, no hopping, etc. Since Jonathon knows he has MD, I told the teacher it was okay to use that term. He goes to a Catholic school so it is not at all bad that his classmates are praying for him! His teacher and I also talked about how other kids have special needs- glasses, hearing aids, food allergies etc. She did a whole activity on how God created us each special and unique.
my boys know the name of their disease, and what it is affecting right now. i find it helps them not be teased for weakness or differences if we are open to students and adults about dmd, plus the more people talking about it the more we raise awareness the more likely there will be a cure...my boys are 11 and 8., their class has been told from the start that max's muscles dont work as well, and how they can help (opening containers, holding the door, carrying his stuff, slowing down on the playground etc). austins peers are familiar with his wheelchair, and how to keep stuff out of its way and why he needs it. kids are usually great when it comes to this. be careful about being to secretive, it will just make the kids nervous if they dont understand whats going on, our boys are regular kiddos with special needs, the earlier you get peers comfortable around him the better his social life will be.
On the main page of this site, their is a section for teachers. You can order free, the Education matters materials for the teacher and also the videos. There is a 4 minute video for kids that explains DMD called BrainPop. This may be easier and you may be able to translate.
Thanks for all the suggestions. We have used the BrainPop video, but I was nervous about it since it says wheelchair, and we have not yet explained that in terms of John having to use a wheelchair. I like the ideas, and will use them! Thanks again.
Try to find some fireman's boots(borrow them from fire dept.) and have the kids walk around in them in order to get an idea what it feels like to have tired legs and mention the other things too..I did that for my two when they were that age and that way the kids can kind of understand by feeling how heavy the boots are and that's kind of like what tired legs feel like when trying to climb stairs etc.
Don't have much to add, but I'm (Chris, Tricia's husband) usually the one who goes in and explains things to each class for our two boys (8 & 10). I'll start by introducing myself and ask the kids who is the fastest runner in the class. (Each of my boys stay home during this time) Usually the class will identify one or two of the boys who is the fastest runner. I'll then ask if anyone plays any sports. Again, I'll usually get several if not most of them who do. Then I will ask, 'How would you feel if you couldn't run or play any of those sports?' They all get wide eyed and express the frustration that they would feel if that happened. I then tell them that my boys can't do either of those things and identify the DMD (both boys understand the term DMD) and give the explanation that their muscles don't work as well as other kids. I've found that by giving them the picture of not being able to do something that they (and most kids) enjoy, that really increases the empathy that they have for my boys. This also is a great segue into how they can help the boys in different situations (picking stuff up off the floor for them, holding the door open for their scooter, understanding any emotional outbursts due to frustration, etc.). I have also seen this understanding lead to some great friendships! Sorry so long, but that's my 2 (+50) cents.

Chris
Hi Carolyn

When Carson was in Gr 2 his teacher had Carson leave the room, then she told all the kids to
stand up and put their hands in the air and she wouldn't let them put them down until they couldn't
do it anymore, then she had them all stand with bent knees until they couldn't do that anymore.
Then she asked the Class, "how do your arms and legs feel?" That is how weak Carson's arms
and legs feel all the time. I thought it was a great demonstation.

Hope that helps with keeping it simple.

Cindy
Cindy, thanks! I like that idea. The teacher did show the video, but I do not think it sunk in, since when we went on a field trip last week all the kids wanted to know why John got to ride in a wagon...... Ugh! I hate this disease.


cindy curr said:
Hi Carolyn

When Carson was in Gr 2 his teacher had Carson leave the room, then she told all the kids to
stand up and put their hands in the air and she wouldn't let them put them down until they couldn't
do it anymore, then she had them all stand with bent knees until they couldn't do that anymore.
Then she asked the Class, "how do your arms and legs feel?" That is how weak Carson's arms
and legs feel all the time. I thought it was a great demonstation.

Hope that helps with keeping it simple.

Cindy

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