Oh man - the dreaded PE...I showed symptoms at a very early age, and I have many PE traumas that are now distant, ugly memories...I was seen as lazy and defiant, so I became lazy and defiant in a lot of ways. It was really a struggle. I was taken to an orthopedic specialist at 10 who said I had a hip issue and that it would work itself out with exercise...so to my family, I just wasn't exercising enough and they pushed me to join track and keep up with my cousins who were all boys.

I avoided any activity in school that required getting up in front of the class. I had a math teacher who required us to turn in homework one at a time, in alphabetical order. I turned in a few assignments, but sometimes I would have it done, and not turn it in because I was afraid of the embarrassment of my slow gait.

So frustrating, looking back. My family didn't believe me about the scope of my symptoms until I was 20 (now 30). People still don't seem to believe me, until I awkwardly fall on my face in front of them, as I am a complete tomboy now as a result of a lifetime of overcompensating for my disability. I ride a motorcycle on good days and used to ride a bmx bike and hit 4' jumps as well as any boy I grew up with.

Never done a cartwheel successfully (I sure as hell tried) or a handstand. I grew up with a swimming pool, so I think it was a huge benefit to me to get a complete muscle workout on a regular basis - the strength to compensate for the weakness. I am weaker now that I am older, though, and have hardly ridden a bicycle in years.

In some ways I am glad that no one babied me, but I did suffer a lot of psycological trauma and still struggle with huge self esteem and self worth issues. Wish I could do it over again, but I know I wouldn't be the same person at all :)

Thanks for listening, It's cathartic to share.

Wow - I go off to have surgery for a week or 2, and come back to so many interesting new postings. I always have to stick in my 2 cents when it comes to PE, because when I was a kid, 100 years ago, our condition simply didn't exist. Even though I actually really loved sports and dance and exercises and such, I did most of them so poorly in the eyes of the schools and the kids - They, too, labeled me as lazy, clumsy, odd, sullen, whatever- I spent my whole PE "career" jiggling around, trying to stay warmed up - but it never worked. Invariably, as soon as I stopped for a few seconds, I'd get called on, and do something embarassing. I wonder sometimes, what would it have been like, had I been diagnosed at 4, instead of 54. lois

Thank you all for your wonderful input. It is nice to be able to hear from people who grew up with this disorder as I am not a sufferer myself it is very hard for me to understand what a 6 year old goes through. I know some of the self esteem or maybe self contiousness is starting to set in. She told me just yesterday that she did not want to go to school because the kids hated her because of her disease. This is not true however, her class mates are very nice to her and very helpful and understanding of her disease, but I think she FEELS that they don't like her because she is feeling she is different. By the way I just got her report card and her PE teacher gave her an A. He said she is doing wonderful since he allows for her stiffness. Thank you all again so much and anyone new please feel free to comment. I will check back to see if there are more postings.
-Jackie

This is a touchy subject and there were issues that I had to deal with in both a physical and social sense, my advice is, through my own experience is that it's very important to encourage (but not to push) the child to persist and to try their hardest at PE. Throughout highschool I gave up on PE and sat on the sidelines feeling even more of an outcast because I was sick of the taunts and pain that I faced everytime I was involved in PE and nowdays I have social and depression problems which I believe are the result of not being proactive about dealing with the condition at the time. My parents could have taken more steps in encouraging me or finding solutions to the problem but to them it wasnt much of an issue to them. I find also that if i'm not physically active on the a regular basis the condition seems to get worse. So I think the fact that you've been so aware of dealing with this at such an early age is very good and I think that taking PE and non-school PE classes, (maybe something like matial arts) for her (considering that she has MC) should be taken more seriously over other curricular activities since dealing with the condition will be a life long ordeal.

Thank you so much Stu for your input on this matter. It is so wonderful of everyone to share their experiences throughout their school years. Sometimes I wish I could have MC instead of her. She said the other day that she would like to not have it for a day so she could know what she would feel like without it. Thanks again.
-Jackie