Is your child due to start school next year? While this is a nerve-wracking time for all parents, parents of children with EB may be a little hesitant adjusting to the new world of school. But Debra Australia is here to help.
We have put together a list of resources full of tips and tricks to help improve the lives of kids with EB as they move into their schooling lives. The resources range from educational videos for teachers and sample letters and information cards for kids to send to their classmates and their families. These resources help explain the do’s and don’t of working with a child with EB and help to create a safe environment for all students.
A good first step is to watch and share Brendan’s Story Brendan lives with EB Simplex, and so do his two children. The Brown family share their story and all the lessons they have learned along their journey with EB and give an introduction to Debra Australia.
The Facts About EB
This video explains EB in a nutshell and is a good resource for other students to understand why children with EB are a little more fragile.
Video 2: Your Welcoming Classroom
This video is designed for teachers or other support staff as discusses the importance of dressings, medication, swallowing difficulties and other requirements children with EB may have.
EB Flash Cards
To teach the school community about the rare disease, Debra also created business-sized EB Cards and informational sheets that quickly explain what EB is and how it affects patients. One key fact it shares is that the disease is not contagious. The cards can be passed out in patients’ schools, and given to students, teachers, and administrators.
Letter to your school
Instead of focusing on the disease, Debra recommends that parents use such letters “to explain your child’s abilities and times they need assistance.” Note that most letters will need prior approval from the principal or other administrators to be distributed among the entire class.
We also have a step-by-step guide to see if your child is ready to start school available here and as always if you would like any further support or resources regarding your child please get in touch with our Family Support Co-ordinator.
Risk Management Plans
If your school, daycare or pre school needs more information for preventative practice and risk management to assist with EB students, you can download the documents below:
NEBDS School Healthcare Plan
NEBDS Preschool Healthcare Plan