What you would like your child's teachers' to know.

I am a student finishing up my teaching license and researching muscular dystrophy. If anyone feels comfortable sharing, I would like your input on a couple things in order to make my peers and I more educated in the muscular dystrophy so that we can do our best in the school settings for your child.

If you feel comfortable sharing, here are my questions. No real names needed. Feel free to add your personal story if comfortable. Any input will help.

What are the specific characteristics that affect your child?
Are there any interventions that you have liked or not liked?
What are some recommendations you have for educators? Physical Education teachers?
Do you have any great resources for other parents with similar situations?

Thanks so much for your time.

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First off, what grade(s) are you teaching? That makes a world of difference as to what to expect. My son is 5, almost 6 and in kindergarten.
-He can participate in gym, but he cannot be pushed to do things. If he says he's tired, he probably is.
-If he is misbehaving, give him a time out but NEVER take away his recess, for any exercise is great exercise.
-Beware of the buses. Most of our children have trouble climbing the stairs up and are too quick to come down. They are very prone to sprains and breaks.
-Many (but not all) children whom are on steroids may have behaviour problems but should be treated like any other child.
-Many are ultra sensitive to clothing, sounds, and personal space.
-Teaching the class about the disease is a wise choice since many are teased because they fall, are slower than most, and make transitions to wheel chairs.

I'm sure many parents will have a lot to add. Learning about the disease is the first and best step to becoming a wonderful teacher whom everyone wants for their own child. So far, the best place to learn is from experience and this is where you will find every concern a parent has. If there are other parents out there from any country in the world that you know of that need support, guide them here. Everyone has stories and you can ask most anything you don't know.


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