I'd like to preface this with the fact that I have a BS in education and worked in special education for a year in a high school.

I think the most important thing you can do is to identify the areas within the school day where your son would have problems with MG/CMS. Have they defined yet if it is MG or CMS? Any biopsy results?

The problem with having a "plan" for someone with a lack of acetylcholine is that it is not "static" disability. For example, someone who is blind has very specific needs that don't necessarily change. MG/CMS is always changing. It can vary hour to hour or day to day. You could say, for example, that he has a hard time carrying books but that is variable too.

From what you said in an earlier post, your son's condition isn't stable right now. Has that changed?

Some basic accommodations would to make sure any environment he is in would be not too hot or too cold. It would be almost impossible to stay away from sick kids but that would be another "risk" to him. Sitting up for too long can put a strain on the trunk/breathing muscles. Taking breaks throughout the day to rest would help.

He would also need his teachers to understand the disease and how quickly it can go downhill. Also, he would need a medical alert bracelet and card with him at all times.

Anyone else have suggestions?

There's a lot of stress in high school and that's one thing that can make MG/CMS worse. Reducing stress is not exactly something often put in an IEP!

A lot of this will be up to your son to realize when he is worse and what he can do about it. Kids have a tendency to push and you just can't do that with these diseases. The "supply" of acetylcholine can't keep up with our "demands."

I hope you get all of this worked out. He deserves to have a good education!

Annie