Yes. We are crazy parents.
But we are also teachers.
This is how we are talking to Ethan and his friends and younger family about his condition:
-We use the term "muscle problems," which is how Ethan and his sister, Jolie, have come to understand his condition.
-We are honest about it, but we are also vague about it. WE DO NOT DISCUSS MORTALITY. We openly discuss his difficulty, but mostly we look at the moment and how to handle whatever we are facing there and then. And there is a chance that medicine may make the point moot, anyway. We're not just being dreamers. We read several blogs, posts and/or medical journals every week about the recent progress in treatment. Yay!
-We have high expectations for him at all times, but we do see fatigue get the best of him at times. At this point in the progression, he is still very independent and can do pretty much anything everyone else does, but he is weaker and less coordinated. While it is actually very harmful for him to over-exert himself (weight training, etc), low impact endurance exercise is very helpful and important to keep him ambulatory for as long as possible. Our chief concern is how he will do on the playground and around staircases. An injury, especially a break, can set his physical therapy back IRREVOCABLY.
-Unlike many with DMD, where learning disabilities are somewhat typical, Ethan is very bright. I know, I know, I sound like so many parents you've (I've) heard from over the years, lol. However, he reads (level J maybe) and he does math (double digit adding, regrouping) and he hasn't started kindergarten. Here is an area in school where he should do some "heavy lifting". You will see a lot of this in his IEP.
Here are some things we found that we hope can help you with Ethan in your classroom. We hope to add to this with your help.
The Parent Project for Muscular Dystrophy is a great resource for information on how to work with children who have Duchenne's muscular dystrophy.