If you're concerned about something more than what is addressed in the letter, I would ask your pediatrician for a referral to an occupational therapist. He/she can spend the day at school with your son and assess what accommodations need to be made. Then you will have a report to give to the staff.

Other than stairs and PE class, there really isn't much that is terribly challenging on a day-to-day basis. The more you focus on his differences from other kids, the more it will make him feel inferior and he will likely be more susceptible to bullying and teasing. You don't want him getting special privileges, coddling, etc, and drawing attention to what he can't do.

I understand the desire to protect him from falls and mental anguish, but believe me, if you are anxious he will be anxious and school will become a very negative experience. Most of us here who are over 30 or so grew up not even knowing we had MC and we survived. Watch "Forrest Gump" and pay attention to how his "mama" trained him to deal with his disabilities.

If you don't have symptoms of MC yourself, it's hard to watch him struggle. But it's really not a terrible disease. Your doctors have perhaps blown it out of proportion because they are used to dealing with much more serious conditions like myotonic muscular dystrophy and can get a bit sensationalistic. The idea is not to eradicate every symptom and make every day clear sailing for him, but to teach him how to adapt and work around some of the inconvenience and embarrassment that sometimes goes along with this. Teaching him to laugh about those embarrassing moments helps a lot, too :-)

Jan

Type of Myotonia: Thomsen's

Country: USA

I don't think a 504 is warranted. Other than certain PE activities, a 504 would be of no use, and, frankly, you'll be teaching him to view himself as handicapped, which is a huge disservice. If he tends to trip up during those @#$%@#$@ relay races, then address that. Otherwise, leave him alone. Dress him warmly when he needs it, and let him be a regular kid. MC has its challenges, certainly, but nothing that should make his life substantially abnormal unless it's in an overreaction to it.

Type of Myotonia: Thomsen's

Country: USA

I somewhat have to disagree with some of the posts in reply to the 504 question. First I work at a school and 2nd my daughter (7th grade now)has been on a 504 since Kindergarten, which her teacher actually recommended. In the lower grades they sit on the floor a lot. Her teacher noticed that when the children were told to get off the floor, put there folders in their boxes and go sit at their table all of the other children would be sitting at their table and my daughter was still trying to get off the floor. So, one accommodation that was written in her 504 was to have a chair instead of sitting criss-cross on the floor. Another thing that we had written into her plan was extra time to take notes. Extra time for passing in the hall and most importantly help when there is a fire drill or lockdown which applies for drills and for actual events. All of her teachers are aware of her muscle stiffness. She gets extra help in the pool when they have swimming because she becomes very stiff and her tongue becomes stiff so she almost sounds drunk when she talks. She has a pass to take the elevator instead of the stairs. Other than that she pretty much does everything the other kids do. She is in an intermediate PE class as her teachers did not feel that she would be safe in a regular PE class - especially in the girls locker room with 300 other kids. Oh also in Middle school they have lockers and they make sure she has an inside locker so that she does not get shoved while trying to bend down and get her books out of the bottom of her locker. So far she has not had an issue with being teased. We have always been very open about her MC with staff and students. If her friends or acquaintances ask about her muscle stiffness we tell them. She is very accepting of her condition and she knows she can work though most situations. Now that she is older I feel that she has learned her limitations and is able to advocate for herself and if she has troubles that she can't deal with I will always be here for her. That is about all I can come up with for now. Hope this helps.

Type of Myotonia: Beckers

Country: USA