Sam is entering 1st grade this year, and we are planning on talking with the class about his DMD. Kris' office assistant's husband is a fireman, so we're going to go that route with our talk. My question is, when do we do this? Should we do it as close to the start of school as possible, or give it a few weeks to a month? I'm also trying to decided if we should have his twin brother in room when we give the talk. They're in the same class this year. We're going to take Sam out for the talk. Just not sure if Jake should stay.

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I actually did the talk to my son's class myself. I had a friend bring in a fireman's coat and boots and each student was able to walk in the coat/boots. I told them that is what Derek felt like when he walked...heavy and hard to walk because his muscles did not work correctly. The kids were in 3rd grade when we did this and they all seemed to understand more after we were done. We didn't go into much detail about DMD, just told them what he had and did as I said above.

I wanted to give a little update. Hurricane Ike delayed our talk with the class, but we now finally have it scheduled for this Friday (17th). It's going to be with Sam's class and the other 1st grade class that goes to specials, lunch and recess with them. We have a fireman bringing us some boots and a coat for the kids to try on and walk with. I've also ordered the book Weakling Willie to read to the class as part of our talk. I've spoken with Sam and his twin, Jake, who is in the same class. They've both told me they don't want to be in class while we're there talking. Knowing both their personalities, I think this is best. I'll let y'all know how it all goes. Thanks so much for all the replies and advice.

Good luck, Laurie!! I think it's great to be up front with everyone (to the extent that is appropriate for their ages) so that Duchenne isn't a mysterious, scary thing to the other kids. I'll be thinking of you Friday!!
Hey, Laurie. How did the talk go? Hope it went smoothly!
Sorry I haven't updated. The talk went very well. I read the book Weakling Willie, and talked with them about how Sam's muscles are different from theirs. We also discussed other difference like some where glasses, etc. They were all very receptive, and had a blast when they got to try on the fireman boots and coat. Both Sam and Jake went to another room while we were there. It was their choice. I'm just glad it's over. I'm an so not a talk in front of people kind of person...even kids.


Veronica E. said:
Hey, Laurie. How did the talk go? Hope it went smoothly!
How is that book worth the purchase?

Laurie Paschal said:
...I read the book Weakling Willie...
I think it was worth it, but it was quite long.

Paul Johnson said:
How is that book worth the purchase?

Laurie Paschal said:
...I read the book Weakling Willie...
My wife is going into my son's kindergarten class today to have a talk. I think her plan was to start with a discussion of how kids can be different from one another, show part of the Brain POP Video (I think she was going to stop it short to avoid some content we think we don't need to discuss at this age) and have the kids walk with ankle weights to get a sense of how it is for Elliott. Our local MDA Health Coordinator is also going to be with her (he has never done this either)... and I think he has some coloring pages and some other stuff he's going to talk about.
Hopefully it all goes well. Elliott's been slightly bothered lately because a couple kids call him "Slowpoke" sometimes he says. But he's cute - I asked him - "Do you think you are a slow-poke?" and he said "No Daddy - I'm a fast-poke!" Those things make you smile and enjoy their innocence; which helps considering its breaking your heart at the same time...
Sorry I was having trouble with responding. I just wanted to say that my son is in 4th grade and we are now thinking of having a talk with the class. I wish I would of know of this website sooner. I never thought to do this. I showed my son the brainpop video and he thought it was cute except for the wheelchair part. He is still not sure if he wants us to tell the class yet. It is up to him but I think it will be helpful. He just gets embarassed I guess and may feel uncomfortable.
Well Good Luck today!
where would i find the brain pop video?
donna said:
where would i find the brain pop video? - I believe you can request a copy from PPMD, or you can also use the link here to watch the online YouTube version.

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