Some, though by no means all, children with Moebius also are affected by autism; hence occasionally here we focus on autism updates. And I think this article from today's Washington Post is a good reminder: autism affects every child differently. What you works for you as a parent, might not benefit another. Read on:
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My favorite thing to tell anyone who asks about life with autism is
“If you’ve met one kid with autism, you’ve met ONE kid with autism.”
Autism
is as individual as the individual themselves. I used to be a support
parent to newly diagnosed autism families in our county. The first thing
I always said when talking about anything was “Here is what worked for
us…”
Every case of autism is different. Some kids are okay being
touched. TJ wasn’t. Some kids are non-verbal. TJ is very verbal. Some
kids seemed to develop in a typical fashion until they were 1 or 1 1/2,
and then lost language. That wasn’t our experience at all; TJ appeared
to have autism from the second he was born.
This huge variance
can really be tough in our autism community. When I speak or write about
our experiences with TJ, I have to hope that the listener or reader
will understand that I am not making a blanket statement about Autism,
capital A.
I’m only referring to our autism, little a.
I
do not know everything there is to know. I only know where our family
has been, what we have dealt with in the past, and what we are currently
dealing with in the present.
I know that my TJ is 14 and was born with autism.
I know that occupational therapy worked wonders for him, as he used to scream at being touched or hugged or held.
I know that Speech/Language, Applied Behavior Analysis (ABA) and Discrete Trial Instruction (DTI) magically worked together to create the miracle that was TJ saying “Hi, Mommy” for the first time when he was 3.
I know that his love of Pixar movies helped him relate to other kids when he was little.
I
do not know what kind of adult he will be. I do not know what he will
want to study, or what interests he will develop as he expands his
horizons. I do not know how long he will stay in high school, or if he
will go to college, or if he will ever date, much less get married.
All I know is what we have done, and what we are doing.
And
I do know how I felt when TJ was diagnosed. I know how crushed we were
when we thought of the struggles that TJ would face when he was so
little. I know how it felt to join this club of Special Needs Parents,
not knowing what all these terms meant, or what these therapies did for
him, or what would work.
So while Autism is a big diagnosis made up of so many individuals,
maybe we can all remember that we are all living with our own life with
autism. Maybe we can all lean on each other through those struggles that
we all have to face, as a community.
And maybe we can all
celebrate these incredible lives that have been given to us. For in so
many ways, as difficult as this journey can be, there are some
wonderfully magical moments that make our kids with autism, or Autism,
absolutely amazing.
Lauren Swick Jordan blogs at I Don’t Have a Job.
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