My life was going great then all of a sudden my world was turned upside down. I had never even heard of dmd and next thing I know my son had this. I knew life would never be the same for us after that. He keeps asking why him and why he can't play baseball for take karate. I never. Know what to say. What do u say to him.

Views: 344

Reply to This

Replies to This Discussion

How old is your son? My son did play T-ball for 2  years after diagnosis.  I guess the wisest thing I heard after diagnosis was a dad who said "I don't ever want my son to look at me and say why didn't you let me be a boy when I could?".  So, with that as my mind set, I try to balance EVERYTHING! It is so hard!

 

When my son has 'down' days, I talk to him about what he is really good at and that everyone has strengths and weaknesses.  It is hard as my son LOVES sports and is VERY competitive.  It is hard and there is no easy answer. I am sorry....for all of us.

We let Sam do what he wanted while he still could. He's played soccer, basketball, t-ball and taken karate. Yes, modifications may be needed and extra breaks, but he loved every minute of it.

I think this has had a big effect on his attitude. He's such a happy guy. Tell him no is really the only thing that gets him down and I only tell him no for stuff I'd tell my other children no for.

Jacob is seven he has never been able to run or keep up with kids he cant even do physical ed.

What meds is Jacob on? Seph and Sam have been on deflazacort for quite a while (hope you don't mind me sharing that Laurie) and that did seem to help with mobility.  However, as far as Seph goes, he was always slower than the other kids and couldn't be as physical as they were.  But that never stopped him!!!

Same as Lori and Laurie. Our son is 4.5 and we allow him to do everything he wants. He is slower than his peers but that doesn't stop him to do things he enjoys. Swimming is a good sport to get your son involved to. We just select activities/sports he can participate in. Karate is not bad, of course he will not be able to do it at the level his peers do it but that doesn't stop him to have fun and enjoy it. We also plan to start piano lessons, he loves playing on our friends piano. We do activities both my daughter and son can do and there are plenty to chose from. My son is also on deflazacort and that does make a difference especially at your son's age... Of course they have side effects so it's such a difficult personal decission.

There is no easy answer Danielle, for sure.

For my son, we played t-ball and little league until he couldn't any longer. We pumped up his pride as the best contact-hitter on the team (which was no stretch), so he just didn't care that he was almost always out at first by the time he made it there. His teammates recognized how rarely he struck out and were legitimately awed.

Now we play in a special league that accomodates his wheelchair and abilities. It's a completely different atmosphere, but still a ton of fun. He still gets frustrated, but he also can't wait for the game every week and when he wins the game-ball, he beams.

http://d54challenger.com/schedule.html

-David

 

My son is on predisone. That's all they offer here for him. I would love to see my son be able to play sports but he can barely swing a bat and gets mad when he cant so something.

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service