Hello Anaronnismom,

My son Marc is 10 years old and he was born with lamellar ichthyosis. Before he started Kindergarten, I set up a meeting with the building principal and the school nurse. I explained to them about ichthyosis and I brought literature from FIRST so they could read and educate themselves, too.

I told them that Marc is unable to sweat and therefore would require an air conditioner in his classroom. It would have to be turned on at his request and of course when it was very warm outside. He would require a water bottle at his desk and would be allowed to visit the nurse at his request whenever he needed to reapply his lotion. We were concerned with gym and recess since those places could not be "air conditioned." We all agreed that as long as Marc could participate and not overheat, he would play at his discretion.

We also decided that all staff members in the school would be educated about Marc and ichthyosis.

The school put all of this information on a 504 Plan. We live in New York (I am also a Kindergarten teacher! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]) but I know that all states MUST have a plan such as this one...it just might be called something different.

The school must listen to you about your daughter's condition. You will probably have to get a doctor's note regarding the ichthyosis and her inability to sweat. I am sure that won't be a problem.

The air conditioner "follows" Marc each year as he changes grades. He also goes to art and music...those rooms do not have a/c, but since he isn't in there too long, it has never been a problem. If he feels too warm, he has the right to go to the nurse's office and sit there until he cools down.

I also asked for the chance to educate the parents in Marc's class. I wanted to be up front about his ichthyosis and not have them talk behind his back and wonder what was wrong. So, in September at Back to School Night, the teacher gave me the opportunity to discuss Marc and his ichthyosis. Some parents asked questions while others thanked me for teaching them something new.

Marc's classmates were also informed about ichthyosis. The teacher, nurse and school psychologist went into Marc's class...he wasn't there....and discussed how everyone is "different." They didn't single Marc out, but instead pointed out how everyone is different and special. They then went on to say how even though we are all different, there are many ways in which we are alike, too.

I am glad to say that Marc has NEVER had a problem at school. He was accepted by his peers from day one. Sure, he got some strange looks in the hallways on occasion, but once people got to know him, his ichthyosis "disappeared." If asked about his skin, he tells it like it is...."I have ichthyosis. I was born like this. It is just very dry skin and don't worry, you can't catch it." Everyone has been satisfied by his answer.

Well, I hope I have been helpful to you. I am sure your daughter will have a wonderful Kindergarten experience!

If you need anything else, just ask!

Take care,
Denise [img]http://www.ichthyosis.com/ubb/smile.gif[/img]