Need advice on explaining Duchenne to my son

Hello: I am new to this blog and need some advice and tips on how to discuss the disease with my son who was diagnosed at the age of 2 and is now 8. We have never sat down and had a heart to heart discussion about why his muscles are weak and he cannot do things like riding a bike or skateboard and why he gets hurt so easily. I am never prepared for the questions he is now asking me. Keep in mind that he is developmentally behind and probably won't understand a long explanation. We need to keep it simple. We do have a copy of the cartoon video that was put out by PPMD a few years ago and will let him watch that. I figured that many of you Moms with older boys might know a lot about this subject,things to say and not to say, etc. Any advice would be greatly appreciated.

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Comment by Bill Cain on March 9, 2010 at 11:24am
Hi Shana, there is a good video on Youtube, that we have use when giving presentations to my sons classmates. Calum is now 9. It has worked good for us. Look for Brain Pop Duchenne Muscular Dystrophy
Comment by Wyatt's Mommy, Melissa on March 7, 2010 at 1:33am
Shana,
This subject is not something that we are dealing with at this time. However, I think when that time does come I agree, simple is best, even if the child doesn't have a delay. I can't remember who it was that told me this, but one of the many doctors we have seem said, treat like you wiould be talking about the birds and the bees. Just answer the questions that they ask, that way you aren't giving them more information then they need at that time. Be as honest as you can. You and your son will figure it out together. Best Wishes.
Melissa
Comment by Karen on March 6, 2010 at 2:49pm
Hi
The Mobey video is great. I think I would watch that with my son and answer his questions directly. He will let you know what level he comprehended the video. I like to keep it simple, sort of like the levels of talk about sex. Like: your body doesn't have the tools it needs to make your muscles work right. We can't fix it yet. Yes, it is sad, let's make a list what your body can do. I love you just the way you are.
My son and I have had heart to hearts about every 3 years as his body changes and he gets greater cognitive skills. So far we are doing OK (my son is 17). I have to admit, that I am still squimish about shortened life span. I tend to be an optimist and live life the best we can at the moment.

Best wishes on tackling another challenge related to dmd.

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