(Suggestions from post: Heading to School published on August 29,2013)
The following page includes the steps I took before Evan was in school. The more information, about Ichthyosis, you give to a school system provides a platform for a successful school experience for your child.
1. Provide as much information about Ichthyosis as possible:
-I made copies of the FIRST Foundation Harlequin Ichthyosis information page to be handed out to everyone (for our initial meeting).
-I provided FIRST's Teacher & Staff Guide booklets to everyone who would be working with Evan. *Very important for substitutes* (you can have the FIRST Foundation send these to your school too)
-I wrote a detailed list of "Medical Concerns" for Evan to be included in his file or available to anyone working with him. As Ichthyosis varies by type and may require different care for the same types, it is important to have a detailed list of medical care required to keep your child safe, healthy and comfortable.
-I strongly suggested the FIRST Foundation website and contact information be used to gain more information about Ichthyosis as well as answering any questions or concerns they may have.
-I offered to come in and "train" others on how to care for Evan, what signs to look for in regards to skin concerns, temperature or dehydration. I also provided a very detailed "care instruction" list on how to apply Aquaphor, how to care for a cut/fissure, overheating signs, cool down methods etc.
-I offered to send a letter home with classmates explaining Evan's condition, so that everyone would be comfortable; parents, children and teachers. I also suggested this letter be available to all of the staff at the school, since this is where Evan will be until 6th grade. If the other teachers are prepared, they will be able to accurately respond if their students' have questions about Evan.
-I provided my blog address so school personnel could gain more information about ichthyosis as well as getting to know Evan before he started school.
2. In the classroom:
-I provided a container of items for the nurse and for the classroom so that Evan has everything he needs while in school. Items included: Aquaphor, bacitracin, baby wipes, diapers, hand sanitizer (for adults), clorox wipes (for cleaning), a change of clothing, spray bottle, lightweight blankets for carpet time and a thermometer for the classroom. (I even gave all his therapists, teacher and aides a "welcome gift" which included a bottle of Spray-n-Wash and personal hand sanitizer)
-Evan's "emergency bag" is pretty much his diaper bag which has everything he could possible need. I check it each day and send it with him to school. It is always kept with him but also includes items necessary incase of an emergency. (i.e. a fire drill on a warm day would require a hat, sunglasses, spray bottle or ice pack)
-I provided the classroom with a dust buster. Since skin is all over my house, I can imagine what it will do to a classroom over time. It's a nice and convenient item to help keep things clean around any kid, Ichthyosis or not.
-I offered to come into school the first day to talk with the students about Evan. I figured the best way to make sure everyone was comfortable was to talk about it. Last year I went in and talked about Evan's skin with the class and answered questions. It was a great way to introduce Evan to the class as well as reminding them "it's ok to be different, everyone is different".
3. Be an advocate for your child:
-Know your rights. There are certain laws set in place to protect your child's medical or education needs. Though federal laws, your school system should provide you with the proper information or where & how to obtain it. (504 PLAN)
-Ichthyosis is rare. Most school systems have never heard of it before. Even if they read about it, you know your child best. Be sure to be clear about their medical needs and PUT IT IN WRITING. You know what your child needs and what your child is or isn't capable of, in regards to skin.
-Be clear on your views of bullying. Since Ichthyosis is a very physical thing, many have been scrutinized by their appearance. With everything these children go through they should not have to deal with these behaviors. Though all school systems have no tolerance for it, make it a point that you don't either.
More sites and links about sending you're child with Ichthyosis off to school:
FIRST Foundation:
How Do I Inform My Child's Teachers and Classmates About Ichthyosis?
The College Survival Guide
Guide for Teacher's and School Personnel
Confetti Skin, Beauty Within:
Ichthyosis and 504 Planning
Life With Ichthyosis: Meet the Teacher
Back to School 2013
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