We
have joined this amazing, unique autism community nearly a year ago and I would
say those in the community are just as unique at the children it effects. My perspective might be different since we
have three children, two NT and one with autism (and I accept that). Our life
is much different than those with only children impacted by autism but, we have
the benefit of seeing both sides of the coin.
Even
being a hockey mom (which the hockey parent community is comprised of 90%
Type-A personalities which brings its own dynamic), I have found this community
to be ‘intense.’ I have found mostly
that parents of children fall into one of two buckets; they are either in the
bucket of “roll with it” and use humor to help or they are in full “fight or
flight” mode ALL THE TIME. I find this
unique to this parent community more so than any other.
There is this need to make everyone understand
and accept their uniqueness so much so that times it is done in what I would
consider to be ‘pushy’ manner. Let me give you an example; we tried doing
gymnastics with Michael but, his inability to sit for any long periods of time,
stand in line combined with his higher than normal gross-motor skills set us up
for failing. We tried a lot of strategies and as much as, he loved that
trampoline and once every two months we would get a great class in it just wasn’t
our place to continue interrupting class with me chasing him across the carpet.
This is where I say it had become unfair of us to force ourselves on their
class anymore. We weren’t asked to
leave – but, I wouldn’t have blamed them if they had. If they had I wouldn’t
have ranted on a blog, gone to the news, thrown my hands up on “How could they?
He deserves to participate just as much as the other kids!” There is just some activities that as much as
he might enjoy it in his own way it is so different from the way it was
designed to be enjoyed that it isn’t fair to the other children in the class (I
do wish they had gymnastics for special needs children because, he did love
that big trampoline). However, for this reason we
skipped soccer, we go to the movies long after a movie has been out and at weird times and are looking at individual swimming lessons because, well our
needs are different and if it takes away from the other children I don’t know
that it is fair of us to make that decision for everyone else's behalf.
This
doesn’t mean we don’t continue to push the limits in hopes that he can do more of these things some day. Restaurants continue to be
our best example but, when we have crossed the breaking point one of us heads
out quickly because, we know Michael is just as uncomfortable being there as
people are around us (which is why he is hiding under the table or sprinting
down an aisle). Since, I want him
someday to sit with us in a restaurant and enjoy an entire meal we will
continue to practice. Don’t get this
confused with I think if he is sitting still, enjoying himself but, being
louder than I would like we generally won’t leave. We pick family restaurants for this exact
reason (and not fine dining).
There
is a fine-line that I feel like we all know is there but, for some reason I
feel like so many in the community have this mind set of ‘this is my life on a
daily basis and you will accept it as well’ and they go storming through the
line. Yet, there is a million things out there that these same people we are
forcing to accept our daily lives are probably also dealing with, yet they aren’t
pushing it on us. They are not pushing their diagnosis’s, their every day
battles on us to see and accept. Don’t
take this incorrectly, this doesn’t mean hide out in your house or tell your
story to other – education is power. I think through breaking down the door when
it comes to the everyday public is probably not the most effective way to help
our children be the best that they can be or have the community embrace our uniqueness. I think it does result in a very
intense environment which isn’t healthy for anyone.
I
will leave with if you have to breakdown doors with doctors, specialists,
therapists or any other professional to get the help you need – well that is
the one place I feel like it is always appropriate.
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