By Melanie (Logan) England
Dealing with Epidermolysis Bullosa in the Education System
Letting go can be two of the scariest words in the dictionary for the parent of a child with Epidermolysis Bullosa.
But eventually the time comes that our children are ready for a formal education and we have to consider the idea that they can begin to make it in the world without us. There are a wide variety of schooling options open today, and no single one will be the best situation for every child. Below are a few of those options, and some of the pros and cons of each of them.
Pros-Many laws in place to protect the rights of disabled children in the public school system.
Access to a wide variety of specialists and therapists to help your child in every way possible.
Variety of options such as special needs classrooms or mainstreaming into regular classes.
Cons-Can be a fight to get the school systems to pay for the services.
School overcrowding may leave teachers unable to meet your child’s needs.
You have to know the laws and know your rights-often the schools themselves don’t know them.
Often classes are much smaller and can cater to your child’s needs.
Can be flexible in getting your child’s needs met as they don’t fall under the same laws public schools do.
Cons-Since they are not held accountable by the same laws as public schools, they may not have the services your child needs. They can also legally refuse to provide them.
Individualized education tailored to your child’s needs.
You can “school” while your child feels well and leave off when your child is unwell.
Cons-Child’s need for socialization and peer interaction may not be met.
Parents more likely to suffer “caregiver burnout” from being parent, nurse and teacher.
Pros-Public school system sends a teacher to your home to school your child if they are too ill to attend.
Child gets one on one schooling adapted to their needs.
Child’s need for peers and socialization may not be met.
Child’s need to experience independence from parents may not be met.
After going over all these options with your child, pediatrician, and anyone else you might go to for advice chart our next step. If you choose a school setting then make a list and start visiting them in the spring of the school year BEFORE your child will begin. Meet with teachers, principal, special educators and therapists, and school nurses; anyone your child might interact with. Bring lots of literature on EB with you. Prepare a list of questions so you don’t forget anything.
Consider asking questions such as:
What therapies such as physical or occupational can the school provide?
Will the school prepare an Individualized Education Plan (IEP) for your child?
Will the school provide an aide to assist your child throughout the day? Will it be a one on one aide, and if not how many children will the aide be responsible for?
If your child is placed in a special needs class, will the school develop individual curriculums for each child in the class?
What are the facilities like? Is it flat or hilly, are there lots of stairs your child will have to climb?
Can/will the school provide adaptive equipment your child may need to get the most out of the classroom experience?
Does the school have a nurse?
After choosing a school invite the teacher, school aide, and school nurse to your home a couple of months before the school year ends. Let them see a bandage change and learn about the wound care involved and get to know your child and their individual needs. Take your child to tour the school and see where his/her classroom will be, where the bathrooms and cafeteria are, and meet all the staff they will be interacting with. Once the school year starts, send a detailed care plan with your child as well as a well stocked first aid kit. Ask the teacher or school nurse to keep a daily log of any wound care that is done during the day or any problems your child has.
Get involved! Join the PTA, and volunteer to be a room mom. You will feel better being actively involved in your child’s education, and your child will be more comfortable having you around. If your child feels comfortable doing so, help them prepare a little presentation about EB to give to their class. The other students will probably be afraid of harming your child accidentally, and learning about the disease will help them all to be more comfortable. They will learn that while your child may not be able to play rough games at PE they are still a great friend to play with!
Lastly, as hard as it is, let go. Let your child take as much responsibility as he/she can for their care at school. Let them inform their teacher each day what owies hurt or might need attention, and what activities they feel they can or can’t participate in that day. This is your child’s first step into a big wide world where he will have to learn to be assertive about his needs and abilities-let him take as big of a step as he feels ready for. Just close your eyes, hold your breath, maybe grit your teeth, and pray :-).
IEP information (some of this is specific to the state of California, but it has a good overview of what an IEP is and how it helps your child)