Getting Ready for
School
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.
Public School
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.
Private School
Pros-
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.
Home schooling
Pros-
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.
Homebound
Schooling
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.
Cons-
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 :-).
Links:
Circle of
Inclusion-Educating Special Children
Discovery.com-list of education
links
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)
