Does your son know he has DMD? My son has just kind of grown up with it. He is 8 now and when he was 5 he played T-ball on a team with an AWESOME coach. It was GREAT for him, but very tiring. We watched him very close to make sure he didn't over do it (too much). My son at age 5 would often ask if I thought he was strong. I told him yes (he was and is for a DMD boy!) and besides, strength comes in many forms, right? Today, he still wants to play football and just tonight was talking about when they find a cure for Duchenne he will play football and be the strongest on the team! I let him dream...it helps me too!
I don't know if this helped.....but....Good luck!
I am just in the moment when my son,7, is getting frustrated on the differences with his classmates, he has not enough info given by me or his mom and i am looking forward to start telling him more about DMD and how it is going to affect his abilities and how he is going to be limited fora permanent time,.
For now what I have told him is that his legas are still not prepared for soccer, stairs, jumping..etc, this timeline is not real and even though i believe we will find the cure; by this time I need to give him clear , strong answers for him to give to other boys.
How did you manage this when you told your kid?, what terms and words should I use?
Joshua's mom said:
As soon as Joshua could talk, the words 'Duchenne Muscular Dystrophy' became regular. As he asked, we answered. If something was feeling wrong, he was able to explain and we would tell him, "Your body is talking to you. All you have to do is listen." Joshua is in grade 2 now and is able to explain to his classmates why he can't run as fast as them, why he needs to use the washroom more than they do, and why his calves are larger than theirs. It has become a casual conversation piece for him. Knowing this has not negatively affected his life, it has made it easier to understand the why questions.
Joshua has always been allowed to do sports etc. He has to be able to listen to his body when he needs to stop though. He, by choice, doesn't participate in sports unless it's for fun. We have told him he was born with DMD and how we explained it is this: The muscles he was born with are the only muscles his body could make. As he grows and uses his muscles, they will tear and try to repair, but because his body can't make new muscles, his body repairs them with solid fat tissue which feels like sand bags in his legs. He also knows that DMD starts in the calves and will work it's way up his body as he gets older but it's up to his body as to how fast.
When we did a presentation at school, we had fire fighter's boots. The classmates wore them and followed a course of pylons to see what it's like to walk with legs that don't work the way we expect them to. Many had sore legs when they were done and many had tripped because they couldn't move as fast as their minds thought they should be able to.
We also send information to the school as it comes in. Information regarding stretching, behavior, medical updates or anything pertaining to DMD that they can use at the school. We are very fortunate to have an open minded school and are willing to change things as he changes. If you would like some links, let me know and I can e-mail you what I send them.
Hi Naomi, thank you for your answer, please send me the links you are talking about.
Take care too.