my son is in cub scouts, and we want to do a little something to explain dmd for a disability awareness badge, and some how incorporate duchenne for all the kids to understand why jonathan needs a little extra help, why when we go to somethings i have to carry him, when he does go there with a wheelchair we wont have to deal with a million questions, some understandsing, like a short overview, but i dont know where to start to plan this, any ideas or suggestions would be a great help. 

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Hi there!

I can send you our brainpop DVD if you like. See Video

Send me an email at ryan@parentprojectmd.org I can also send wristbands for the kids
Sara - if you need help talking to the kids, let me know. I'll come out.
that would be awesome, i will figure out the exact date we are going to do it,
Hi Sara,

I came across another discussion on the site asking for advice on What the Teacher tells the class - 2nd grade. Maybe something in that discussion can help as well! I thought there was some interesting ideas, especially Cindy's post about the kids holding their arms in the air.
Hi Sara,

My son is in boy scouts and is working on his eagle scout project. We were able to get alternative merit badges to count as required eagle scout merits. Jon as 33 merit badges and just needs to complete his write up for his eagle rank. When we explained Duchenne we used simple visuals like hugging, raising your arms, standing on one foot. The brainpop video is also very good. However, you have Keith in your area to help you. If you need any help with navigating scouts, please let me know you can email me anytime at christinepia@aol.com

I'm sure whatever format you decide to use will be great.
Take care,
Christine Piacentino
Our son is in Cub Scouts too. I gave a presentation where I showed the BrainPoP video. We then had a discussion about how much harder it was for Matthew to do things. Before showing the video I gave each boy an ankle weight & had him put it on his wrist. After wearing it for about 15 minutes I had them perform some simple tasks such as reaching up above their heads & holding their arms out to the side for 30 seconds. They were able to see the difference between the arm with the ankle weight on it (signifying DMD) & the one without the weight on (signifying their "normal" muscles). We also talked about how they could help Matthew. We talked about how to help him up when he falls & how to give him their arm when walking so he could stabilize himself.

PS - Ryan gave us wristbands too to give out. The boys loved receiving them!
My son Ian is in 3rd grade and we are holding an assembly for the entire third grade...not sure what we are going to do, but we want it to be fun for the kids and let them know more about Ian and DMD...I don't really care for the brainpop dvd and was wondering if anyone has ever done something like this????
Thanks.
Donna Schneider
New Jersey
oh yeah he is in 3rd grade also, but the cub scout is broke down into dens but it would be for the whole group (1st-5th grade), trying to encorporate this into disability awareness will definatly have to get "guest speaker" i think i would cry, and not be able to speak, and brain pop would help, but its in a gym with no tv, but for the school i will probably use the video, the cub scouts is a group from a few different elementry schools, ok so keith i wil need your help,


Keith Van Houten said:
Sara - if you need help talking to the kids, let me know. I'll come out.

Send me a private message on here or Facebook - or regular email - in case I don't get back to this thread post.
Sara,

I also found this guideline. It's written for meeting with school, but you might find some of tips helpful
Attachments:
well i think i may need to do the school also, i was trying to maybe wait and see, but i am realizing that is may be more beneficial to do it sooner than later on wednesday we have an iep meeting, i am going to bring it up then, but i would like to have like an outline of what i want to do, and all of that, but... i do know they will work to set a date and get it done, should i have it be just his class room, or all the 3rd graders, or how should it work, any suggestions? i just have noticed that the other kids dont understand, and even as to why his brain doesnt work like theirs (something like that), i gave my education matters book to the school, because the school asked me to help them make a disability info cart for the school, and asked for good books they could get, and that was the best one i could find,
has anyone ever incorporated the children's books i fould like 5 years ago on mda site everybody's different nobody's the same? they had another one about siblings but i didn't print them, and can't remember where on the site i got them

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