Back to School Tips

Returning to school after summer can be an exciting and hectic time for kids and their parents. For children with EB, it can be a little stressful, making those introductions and facing potential stares and confusion from others, especially in new classrooms or schools. Whether your child is just entering school for the first time or moving between grade levels which could mean meeting up with new students and teachers unfamiliar with their condition, it is important for you as a parent and a neighbor to be an open, accessible resource to answer other parents’ questions about EB. By offering information and helpful tools where needed to the school and other families, you can help support your child throughout what could be a confusing and scary transition.

There are some things that you can do to streamline the process of integrating your child into a new schedule and school environment, as well as some resources to help you communicate with the school and other families about EB. Here are ten suggestions gathered from various sources including www.debra.org, www.ebfriends.ning.com and parents just like you.

  1. Provide the teacher and the school nurse with information about DebRA including the website (www.debra.org) and email address for the DebRA nurse educator, Geri Kelly-Mancuso RN (debranursec@yahoo.com) to reach out to with any specific EB care questions.
  2. Supply the teacher with a storage box containing different types of bandage materials clearly marked with numbers to designate order for application of the bandages. You may wish to include needles, scissors and any ointments in a separate baggie within this storage box, too.
  3. Send the child with a fitted chair pad for his/her regular classroom seat to provide greater comfort and lessen risk of skin friction or irritation. If the child’s legs dangle from the chair, a small stepstool could be added to minimize extra strain or stretching at the back of the child’s legs.
  4. Schedule a time outside of class to meet with the teacher and demonstrate a partial bandage change to better explain the various kinds of blisters and ways to handle them as well as the care required during wound dressings.
  5. Work closely with the teacher and the school to establish a care chain of command for your child in the event that an accident or injury does occur on the premises. Specifically, have three people in place in case of emergency and confirm that it is included within your child’s student record.
  1. Encourage your child to speak up at school and notify the teacher before any situation that could cause him/her blistering or injury. Let the teacher and the students know the safe limits for physical interaction and play.
  2. For field trips, ensure that whomever is leading the children has an emergency pack of bandage materials with them since a parent will not always be able to join the child on the excursion.
  3. Introduce a helpful two-part video to the teacher for the class. The Children’s Hospital of Colorado has produced a school video called “What is EB? and Your Welcoming Classroom.” The first segment, “What Is EB?” is approximately six minutes long and designed to familiarize students and teachers with some of the issues that face children with EB everyday and encouraging students to help their classmate feel more accepted and less isolated. The second part, “Your Welcoming Classroom,” is just over 17 minutes long and offers teachers and other school personnel a means to open a critical communication channel between the child, family, medical community and school contacts. The video is available for free through DebRA.
  4. Always pack a change of clothes, sunglasses and a pair of slippers in your child’s schoolbag in the event of drainage, lengthy time spent outdoors or additional blistering of the feet.
  5. Initiate communication directly with parents of your child’s classmates by asking the child’s teacher if a letter can be sent home with the other students for their parents. I’ve attached a sample template below that can be modified for a child of any school age. Make certain it’s understood that as parents, you are available to clear up any confusion by talking with the other parents by phone, email or in-person to answer any questions at all.

August XX, 2010

Dear Parents of Preschool Children in Miss Smith’s Class,

Our son/daughter, Child’s Name, will be attending class with your children this school year. Child’s Name is an outgoing, intelligent and funny child who suffers from a rare genetic disorder that causes his/her skin to be very fragile. The condition is called epidermolysis bullosa or EB for short.

Child’s Name is much like any other child with the exception that excessive heat, humidity, or friction causes his/her skin to blister or tear off. As a result, child’s name often has what children so sweetly refer to as a lot of “boo boos.” Child’s Name’s wounds are similar to those of a burn victim. He/She will frequently wear bandages to protect his/her wounds and facilitate healing. This condition is not contagious. In fact, germs from other people pose much more of a threat to the child with EB than vice versa.

Child’s Name has many close friends that he/she plays with regularly. Our experience is that your children will get to know child’s name as a person and over time, will no longer notice the blemishes on his/her skin.

We strongly believe (like all of you I’m sure) that knowledge can alleviate many fears and misconceptions. We welcome your questions, so please do not hesitate to approach us during the school year. In the meantime, the following websites will provide you with helpful information about epidermolysis bullosa: www.debra.org, www.befriendeb.com, and www.ebkids.org.

We are committed to helping our child live as normal a life as possible. We look forward to getting to know each of you and your children. This is a very exciting time for all of us!

Warm regards,

Your name

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