This post has been hard for me to write. I’ve rewritten it over and over this
weekend. There’s so much I want to tell
you, but it’s so difficult to put into words.
Lately my heart has been overflowing with gratitude for the
opportunities that God has presented for my little boy. He has found a school where he is learning
and thriving. He has family and friends
who love him dearly, and he got to spend precious time with loved ones this summer. He is content and
happy.
I read through Ben’s binder this weekend. Every special needs parent has the binder. It is filled with meeting notes, assessment
data, IEPs, and procedural safeguards upon procedural safeguards. I dug out the
binder because tomorrow Ben’s team will sit down and write his service
plan. This plan will replace his IEP for
as long as he is enrolled in private school. As I sifted through the psychological reports
and read over the evaluator’s notes, I thought about the little boy who spoke
in one-word sentences, who did not reciprocate affection, and who did not play
with his peers. I thought about how far
he has come during these past few years.
And yet, while we have left some challenges behind us, there is still so
much work to do.
My son has a hidden disability. It doesn’t come with obvious markers, like a
wheelchair or a cane. And yet, his
differences are there and impact the way he interacts with his world.
Ben has sensory processing disorder or SPD. This means that the information from the
outside world doesn’t get filtered in the usual way by his brain. Instead, the information from outside comes
rushing in- or it comes at him in a jumbled way, much like a muffled radio
signal. This becomes most pronounced
when his environment is unpredictable or when he doesn’t have the opportunity
to decompress and recharge. His sensory
processing disorder is more disabling for him than his speech and language
delays. It is more disabling even than
his autism. And yet, some days it is not
disabling for him at all.
I have some friends who only know my son from his smiling
Facebook photos and my status updates that describe his antics. Sometimes they’ll ask
me about how my son is doing. Often,
they have read my blog and want to understand more about sensory processing or
autism, because they are teachers themselves.
I’ll often get asked, “I know he has sensory challenges and autism, but
it’s not that severe, right?” The answer to the question is complex. On the surface, Ben looks and typically acts
just like any “regular” kid. In the
right environment with proper supports, he does not “stand out” that much from
other children. If you were to look over
at our table at Olive Garden, you’d see a kid happily engrossed in coloring or
playing on his ipad. When we go out
these days to the supermarket or even to the theater, we rarely attract attention. But, if Ben gets put in an unstable environment
and we don’t pay attention to his cues, it all can escalate quickly.
There are days when Ben doesn’t require any additional
supports at home or at school, and then there are days when he needs all of
them.
Ben is a talkative, imaginative little boy, and so it is
easy for others to forget, or not even realize, the sensory challenges that are
always lurking in the background. I am
forever reading his face, just as a meteorologist searches the sky for signs of
an oncoming storm.
And so we live in no man’s land.
We walk the thin invisible line between the general
population and the world of special needs.
Example 1: Ben’s new
school has an indoor gym. These are rare
in Florida, because kids can have PE outside all year round using open-air pavilions
or grassy fields. Ben loves the new gym
but is bothered by the “loud, echoey noises”.
When he told me this, my first reaction was to get him noise cancelling
headphones. His teacher was on board
with the plan. My husband, however,
pointed out that the headphones could make him a potential target for teasing
at this critical time when he is trying to establish friends at his new
school. I see my husband’s point but I
also don’t want my son to have to “tough out” the sounds in the gym.
Example 2: This weekend
Ben will start playing baseball. We
decided to let him play on the Miracle League, an adaptive baseball league for
children with disabilities. It is a
wonderful organization. Every player is
assigned a buddy to assist them on the field.
The field itself has been adapted to accommodate wheelchairs and
walkers. Every player gets to hit ball
and fully experience the game. I am so
grateful that such a league exists and so excited for my son to have the chance
to play, but secretly I feel guilty. I
know that there are many different forms of disabilities, but I worry that
because my sons is a hidden one, others may question his spot on the team. What will the parents of the child in the wheelchair think
when they see my able-bodied son running the bases when theirs must wheel
around with assistance? I know my
worries are unfounded, but they creep into my mind anyway.
And so we walk the thin tightrope- struggling to balance
ourselves between these two worlds. I
don’t want to "borrow from tomorrow’s sunshine" with my worries, but I can’t help
but look towards the future and try to anticipate the next hurdles, even while
I give thanks and celebrate the successes and the accomplishments along the way.
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!
