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#9770 - 12/31/01 11:07 PM Kindergarten!!!!!
marcsmom_dup1 Offline


Registered: 08/12/00
Posts: 107
Loc: Wantagh, NY USA
Believe it or not, it is almost time to register my son, Marc for Kindergarten! He has lamellar ichthyosis and I was just wondering for those of you who already have children in school, what, if any, specifics did you ask the school to make available for your child. I know that I am going to ask for air conditioning for his classroom to prevent him from over-heating during the warmer days that occur here in NY. Did you give them specific guidelines as to outdoor activities, physical education, etc? What about weather conditions-temperature and humidity? Marc is currently in a pre-k class in a school where he has been since he was 2 1/2. It is a private school, so it is operated differently than a public school. All of the classrooms were air-conditioned, so that wasn't an issue. I am a Kindergarten teacher, but I am not sure how to handle this without coming across too demanding. Any suggestions would be helpful. Maybe I am making more out of this than I should, but I have never done this before!

Thanks in advance for your input!


#9771 - 01/01/02 04:26 AM Re: Kindergarten!!!!!
Elise Offline

Registered: 09/17/01
Posts: 28
Loc: Lynnwood, Washington
You are good to be on top of this now. I have good news. Some parents of kids with LI worked very hard to make a very good video just for the purpose of taking to schools to orient the school to their childrens needs. I believe it is called "Release the Butterfly" and is sold at cost through FIRST's site at I strongly recommend that you get this video. It has been successfully used at schools, day care, with babysitters, playmates etc. It can also be shown to students to help answer questions and raise the comfort level of others in discussing your childs needs. It is not a long video and can be shown at the beginning of a meeting with school personnel to set the tone and give information quickly. Some schools have used it in assemblies talking about differences. Other schools have shown it to all their staff at the fall staff orientation. We are really fortunate to have this wonderful resource. Take care, Elise

#9772 - 01/17/02 01:42 AM Re: Kindergarten!!!!!
m soliday Offline
Junior Member

Registered: 07/09/01
Posts: 3
Loc: Americus, Georgia
Hi! I am also a teacher. I have two boys of my own who have lamellar ichthyosis. My sons teacher called all the parents before school started just to let them know that there would be a student with a skin disorder and to talk to their child about it. I did write a note to the P.E. teacher that if he got too hot to let him get a drink. My child would sometimes wet his shirt if he was to hot because he didn't want to stop playing. They also let him wear a hat outside. I know it can be a nervous time but I think everything will go GREAT.
M Soliday


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