I need a little info or a comprehensive list of what all should be put into a care plan for my 6 year old kindergartner's school. I have tried to get a 504 put in place for him but because of his doctor only sending in information prior to his genetic testing which confirmed MC and the school staff feeling that his condition didn't "substantially" limit one or more of his life activities (which is SO not true), they said that at this time he wasn't eligible for coverage over the 504 act. Being that his doctor is over 3 hours away and it took him 5 months to contact me, after calling on a weekly basis, it's not like I can just drive down the street and get him to take care of things. So I was told by someone on FB to get up with my son's pediatrician to have him make a sort of "prescription" for accomodations while at school. The problem is that as I am new to this and this is my 1st born, I don't exactly know what all should be included into the accomodation list. Like I said, he is only 6 so trying to remember what kindergarten was like for me and the activities that are involved, was a little too long ago. So anyone out there that has been fortunate enough to have an approval for the 504 or a special care system put in place for their child, could you please inform me of what all I need to have covered? Thanks a bunch!!

Type of Myotonia: MC-Thompsen's

Country: USA

Alicia, if you haven't seen the letter for school staff on the main website, that might give you some good information to use. Just click on "Return to Website" above and you'll see the links.

Jan

Type of Myotonia: Thomsen's

Country: USA

Jan,

I have seen it, as well as printed/emailed it to the school's teacher, counselor, nurse and principle. However, according to them, they don't feel they need to do anything different than possibly keep an extra eye out for him. No special type of care plan, so to speak. That's why I figured if I went to his regular pediatrician with a specific list of what the school needs to allow/accomodate for him then that would be beneficial. It seems as though because the school staff, and even his pediatrician aren't as familiar with it, it shouldn't be handled or treated in any sort of special way.

Type of Myotonia: MC-Thompsen's

Country: USA

Are there certain accommodations you feel he will need that you are worry about him not getting? Depending on the nature of his symptoms he might do ok without them. I didn't require any specific accommodations for the MC in elementary school, though that changed in college.

I've come to learn that schools generally are not forthcoming with disability accommodations. It costs them money and they will fight tooth and nail even when you can provide evidence of a disability. If you feel your child needs accommodations he is not getting, you are going to have to get used to not being nice about it, and I would look into hiring an advocate. You might be able to find one through the MDA, but if not, you might try an autism related organization. I know it's an entirely different thing but if you want an advocate who is experienced with dealing with elementary schools and getting them to accommodate, you will find ample experience among autism organizations.

Type of Myotonia: Becker

Country: USA

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