I was wondering if anyone could provide any advice or share their experiences talking with their sons about DMD issues….particularly at a younger age.
My son, Jake, is four, and I want to be more prepared in talking with him about it as he seems to becoming more aware of how he differs from others. The other night at bedtime, he was telling me how two of his friends at school wouldn’t listen when he told him he was strong. Evidently, they had been playing some game and the other two maybe said Jake wasn't strong. I think Jake thinks he is strong as most four-year-old boys do, and I don't want to "burst his bubble" by telling him he isn't as strong. In past conversations, we have shared with him that his muscles are tighter than other peoples and stressed how everyone is different, etc. I have never told him that his muscles aren’t as strong as others or that his muscles prevent him from jumping as high or running as fast as other kids. I so want to say the “right” thing to him and tell him the best way to respond to people who may make comments about him. He has also recently told me how tired he is at preschool. I’m glad he has told me this so we can make some changes. However, I also wondering if I should be telling him why he is so tired?
We are heading to Cincinnati next week for Jake’s next appointments with Dr. Wong, and I really feel like more questions are going to arise. I didn’t realize how uncomfortable I would be in these situations. I really fear making him feel different, inferior or limited in what he is capable of. I just want to shield him from it, but I know I need to more open and comfortable discussing it. I would really love to hear how other parents have approached these types of discussions if anyone is willing is share.