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One of the hardest
questions I have to discuss with parents is “does your child knows about their
disability?” Most parents are at a loss
for how to discuss this with their child.
They have many different reasons for not wanting to discuss it. Some parents do not want their children to
think of themselves as any different as other members of the family or class.
Others do not want their child to use it as a crutch or excuse. Yet others are
still in denial themselves over the reality of their child’s future. For
whatever reason, they look at me and ask, is that really necessary?
It is necessary
for a child with any kind of disability, be it sensory, ADHD, Down’s Syndrome,
Autism, or any of a plethora of others to understand why they are having more
difficulty than those around them. It is
essential for their self-esteem and for them to understand why they are getting
the services they are getting. This understanding allows them to work with and
not against their service providers. A couple examples I like to give parents
are these: If your child were blind, would you let them think everyone in the
world around them was blind as well and they were just bad at it? No, you would
explain that others could see and thus traverse the world more easily. If your child is lactose intolerant, do you
tell your child they will get sick from the milk products because their body is
missing something, or do you just tell them you are being mean and won’t let
them have chocolate milk and ice-cream? Everyone has a right to know so they
can take ownership and work with their disability instead of working against
it.
How and what you
tell your child are going to be the complicated parts. It is a similar scenario to adoption. The longer you wait, the messier it
gets. I have found in my experience that
the students who have been raised knowing all along have the healthiest
attitudes. It is just a part of who they
are no big deal. If it is too late for
that, talk with teachers and support staff who know the child to come up with a
plan that suits your child’s needs.
How does a child
knowing about their disability help in the classroom? When manifestations of the disability occur,
a teacher can explain to the student, “This is because of xxx ( fill in the
disability), let’s think: how can we find a way to make this work for you?” It
can take some of the pressure off of the child. Another example: Let’s say you
have a child with autism who is getting very upset over a change in the
schedule that came unexpectedly. You can calm him by saying “this is your
autism making you upset, take a deep breath, are you going to win or is the
autism?” Of course this will not work
for everyone on the spectrum, but it can be effective for many. It can also work for student with Down ’s Syndrome
or ADHD. Giving the child some control over their disability can be very
empowering.
There are not many
books out there to help you discuss a child’s disability with them. I have written one book, Let's Talk About Being in Special Ed that discusses special education, but not a specific
disability. I am currently working on a
book to help explain Autism to children on the spectrum. The important thing to remember is that it is
just a part of them that they can learn to define rather than have it define
them. Remember you have a support team
with your teachers and school staff: use them to help give you advice that is
specific to your child and talk with your child. Once you do that, it will take one more
pressure off of you.
For more information you may want to start here:
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