Preparing Your Butterfly Child for School

*Information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to any healthcare needs.

 

It’s that time of year again when families transition into different schedules and routines: the start of a new school year. For some in the south, its already begun. For our friends in the north, it looms.

 

For EB families, the school year presents its own set of challenges as parents have to worry not only about children’s usual needs like outfits and school supplies but also about ensuring their child’s physical safety offsite in an environment not likely to be EB-friendly. In the past, we have blogged about things you can do to support your child and work toward a healthy and fun school experience.

 

  • Plan Ahead:  a few years ago in a blog titled “Connecting with Your Child’s School about EB,” we offered different things you could do as a parent to set up your child for comfort and success in his or her new weekday surroundings. These may include everything from packing a bag of extra comfortable clothing to be stored in the classroom to scheduling a private meeting with the school nurse and teacher to discuss your child’s health challenges beforehand.
     
  • Start a Conversation:  in another past blog titled “Bringing Your Child’s School on Board,” we noted various ways you can initiate a discussion about EB in your child’s school and what people you may want to get involved in the talk. The first step in educating others is introducing them to the language and basics about epidermolysis bullosa. With the use of some other key sources of information and educational resources, you can begin to build a support network of educational professionals also looking out for your child when he or she is away from home.
     
  • Lean on Others:  we may say this often, but it is true — we are all here for each other. Our online community of EB patients and their families continues to grow and other families can be a great source of ideas and support for challenging life transitions such as sending our butterfly children to school. In another previous blog titled “Families Helping Families,” we note that social media tools can be invaluable for reaching out to other parents with questions or polling them about challenges that come up during the school year. As long as we are sharing our experiences with one another, we can all become better equipped to handle whatever comes our way, and as EB parents who have already guided our children through the transition to school, we always have that gift of experience to offer others.

EB and the New School Year

With a new school year just weeks around the corner for some, we thought it would be a good time to compile some back-to-school pointers for our families in the community as well as pull together past blog links that offer advice for educating others unfamiliar with EB.

For the youngest students, that first day of class can be both intimidating and exciting, but they take on added stress not knowing how others will react when they learn about a student with EB and the challenges he/she faces.

Staff writers at Junior magazine put together this helpful list of back-to-school tips that can be useful to all families but particularly for those whose children may feel a little reluctant or frightened to leave the safety of mom or dad’s side. “First-day nerves: Back-to-school advice for your child

Katherine Lee also offers suggestions for ways to make the often daunting experience far less nerve-wracking with her article “Tips to Ease Back to School Anxiety.

St. Christopher’s Hospital for Children lists some tips for families who are specifically concerned about how to coordinate their child’s school attendance while taking into consideration chronic health conditions in a school environment in Dr. Renee Turchi’s piece “Managing Chronic Health Conditions at School.

Here on the EB Resource blog we have also offered some advice in the past that was specific to EB parents looking for ways to connect with teachers and other school personnel, their child’s classmates and families. So you may wish to review some of these past blogs for other tips for helping your child adjust to the classroom environment and for explaining to others about EB to support everyone’s comfort and understanding of the topic.

Do any parents out there have their own suggestions they’d like to add? We certainly welcome your feedback. Feel free to leave a comment here on the blog or on our Facebook page. And thanks, as always, for reading and for joining in on the conversation!

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