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| My boy having fun trick-or-treating in his own way on Halloween. |
Recently my
family and I participated in a local walk to support our friends who have a boy
with Down Syndrome. We went to breakfast
before the walk at a restaurant where we go pretty much every Sunday. Our whole family wore matching shirts that
had the child’s picture on the front with the phrase “J- Rocks”. At first I couldn’t figure out why everyone
was looking at me, but then I realized what I was wearing. It made me understand how it must feel to be
stared at every day, simply for having a physical difference. My son’s disability isn’t as immediately
obvious as our friend “J-”, but Ben’s hand flaps, his noise canceling headsets,
and his aversion to eye contact show the telltale signs of his autism and sensory
processing differences. Over the years
I’ve become immune to the looks and the glances from strangers, some of them
curious and others a bit more judgmental.
It’s been a long time sense Ben has had a public meltdown, so it’s been
awhile since I really stopped to think about how society views disability and
how much my own views on the subject have changed.
My road to accepting Ben’s disability
(and disability in general) hasn’t always been easy. Ben was diagnosed with Autism Spectrum
Disorder and Sensory Processing Disorder almost four years ago. It has taken nearly all of that time for me
to feel at ease talking about my child’s learning differences with others and
to truly see them as just that- differences.
I no longer feel the sting in the back of my throat when I say the word
autism. It has taken years of research
and study for me to come to the conclusion that, while my child’s disability
brings very real challenges, it also provides him with very real strengths that
come with having a differently wired mind.
I have written on the topic of
acceptance before. You can read about my
feelings on the topic here and here. My
definition of acceptance has evolved over the years as I have learned and
grown. To me, acceptance doesn’t mean
that we have to like the hard parts of the disability. It doesn’t mean that we have to stop trying
to make life better for our child. However,
we must remember that we are trying to make life better- for our child. This is very different than trying to make
life easier for us, or life more socially comfortable for us. To me, acceptance means that we love our
child without wanting to try to change him simply for the sake of making him
more palatable to society.
The line
between denial and acceptance can be blurry.
Over the years, I have met many
parents who are living in the stage of denial.
They want to pretend that nothing is different about their child because
they view normalcy as the goal. The view their child through the lens of the hopes and dreams that they have held since their child has born- the vision of the child they expected to have rather than the child in front of them. They
have been influenced by society’s insidious message that those with
disabilities are objects to be pitied, or individuals who have a lower
self-worth than others. While they may
acknowledge their child’s disability, they see their child as a project to be
fixed. When their child does something
that is outside the realm of “normal”, they feel embarrassment or shame and
actively try to suppress these things. I don't judge those who are in the denial stage. I was there once too.
It may
appear to the casual observer that those who accept their child’s differences
no longer care about their child’s needs, but this simply isn’t true. Once you reach acceptance, you are aware that
your child is different, but these differences no longer matter to you in the
way that they once did. You no longer
seek to change your child with the intent of making them seem “less
different”. This doesn’t mean that you
don’t help your child overcome the limiting parts of his or her
disability. It’s just that normalcy is
no longer the goal. You want your child
to live a happy and fulfilled life, but you realize that the very definition of
happiness and fulfillment can look very different than you once imagined.
When you reach this stage of
acceptance, you realize that your entire view of success, happiness, and
possibility have completely shifted from what you once knew and
understood. You now see a much more
expansive realm of possibility. And then
one day you wake up and realize that it is you who has changed as much (if not
more) than your child. That’s the
moment when you know, that no matter how hard things get, it really and truly
will be okay in the end.
Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!
