Bringing Your Child’s School on Board

For parents of a child with EB, helping their child become acclimated to a new environment when he or she reaches school age can become their main mission.

It’s not uncommon for other parents, teachers or school administrators to initially raise questions about your child’s visible skin condition, particular when they most likely have never heard of EB nor understand it. There are some tools available and steps parents can take to help educate others and make the transition for their child as smooth as possible.

  • If your child will be starting school next fall, you may want to inquire with DebRA about the organization’s classroom DVD “What Is Epidermolysis Bullosa (EB)?” The short film is also available online and clocks in just under six minutes. It uses an analogy of grass and its roots to explain in simple language how skin impacted by EB is unable to adhere to layers below it, unlike the way a lawn’s roots adhere to the earth below it. Your child’s classmates, teacher and their families also get to hear from students in one school talk about their interaction with a young classmate with EB and from students with EB themselves. They attempt to dispel myths associated with EB and share ways that they may need additional support from others around the classroom or at play. Click here to access the film online at the DebRA website.
  • Some parents choose to schedule a meeting before the new school year with teachers and key administrators at the school. Such a conversation before the hectic pace of class assignments and activities can provide a great window of opportunity to educate them about the support a child with EB may need during the school day or extracurricular activities.
  • Parents may also seek out meetings before the school year where parents are invited to visit the school for activity sign-up or other class-related discussions. It can be a helpful way to introduce the topic in a conversational, informal atmosphere before children begin interacting with one another.
  • Some families have even developed a short half-sheet or one-sided page with information about EB that they then ask the teacher beforehand to distribute and send home with students on the first day, so that any potential questions or concerns can be addressed and also to encourage students in particular to support the teacher and classmate with EB wherever necessary.

If you are a parent who has already gone through the first day of school jitters with your child diagnosed with EB, what strategies and tips can you offer other parents to help their child’s transition to the classroom be a smooth, comfortable and safe one?

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