Those of you that are raising a child with autism are well
aware of the challenges that come with taking your child out into public,
particularly when they are younger and less able to control their actions. This
can be made worse when they do not have words for communication. Some of our
kids that are more significantly affected will show their differences more
obviously. You might take a look at them and just know that something is going
on. Others that are less impacted by their diagnosis have more “invisible”
symptoms. These less visible traits can be the bothersome things that get a
child labeled as a “brat” or the mother as a “bad parent” when they are out in
the real world.
In our schools, parents can fight bitterly for keeping their
child in a self-contained setting because it is the most appropriate for their
needs with the additional supports they might access in those classrooms. For
others, the fight is to move the child out of that environment because it is
stifling their growth and they need exposure to typical peers in a mainstream
setting. Each can be equally appropriate, depending on the child.
A few weeks ago, a good friend of mine told me about a trip
she planned for her kids to go out for dine-in fast food, with the assistance
of their ABA therapist. This took some intent and planning and did not happen
overnight. They made sure to go at a time that was off peak hours so they would
have a better chance to escape without a meltdown. The trip out to the restaurant
was no easy feat, particularly since she has 3 young kids diagnosed on the
spectrum. She was dreading it, but knew that it would provide much needed practice
for her kids, and it would be helpful to have the support of the professional
that would accompany her that day.
As you might expect, the experience had a few hiccups. And, someone
at the restaurant could not resist making an intolerant comment when her
youngest son started acting up. As a parent, when those things happen, you try
that much harder to try to make your kid fit the mold of what is expected in public,
and you become keenly aware of how different they are in that moment. It can be
excruciating to try to overcompensate and do anything to make things better
when you are the target of negative attention like that. She maintained her
calm, but this person could not resist continuing to make disparaging remarks.
And, like probably anyone in her shoes would do in the same situation, after a
certain amount of time passed and the agitation increased, she let him have it.
Loudly.
I have had plenty of moments when Grumpy Badger was wildly
melting down in public while we were waiting to check out at the grocery store,
or when he would start screaming in the library, etc. I got my fair share of
judgmental and searing stares, as I avoided eye contact with others and tried
to rush my boys out of the situation before it got even worse.
I tend to be fairly non-confrontational, but those
experiences taught me something. As a parent, you have to find your spine and
use it when needed! Sometimes you have to be willing to provide an impromptu
autism awareness lesson for those around you. If you can do it without yelling
or breaking down into sobbing, all the better.
Things have gotten a lot easier for us as we venture out
beyond the doors of our home. We are no longer in crisis all the time. My boys
have grown in their skills and abilities, and they are gaining maturity in
certain areas. We have our moments when things are still difficult, but it’s
definitely not as hard as it once was. For that, I’m thankful. But, I also
vividly remember what it was like. And, I know so many people that are
continuing to go through these situations daily and may not ever know what it’s
like to have a reprieve.
This topic came up again when I was recently interviewed by
a college student about the challenges of parenting a child with a special
need. She was specifically looking to learn about the perceived societal
stigmas and how parents cope with those pressures. I realized that the way I
deal with the stigmas and expectations is very different than when I first
became a parent.
To be blunt, I don’t give much of a crap anymore about what
people think about me, my kids, or my parenting. This is autism, and it ain’t
always pretty.
One of the things I have been working on through my
nonprofit is the normalization of differences and creating tolerance for
special needs in all settings. I have given many presentations touching on this
topic. It’s needed everywhere. Through educating and bringing awareness to a
group of people interacting with the public (which includes families that have
children with special needs, like mine), some of those people become the
catalyst for change. They can take the information to heart and forward on
their new perspective to others. I know it works. People have told me how they’ve
shared the message, and it’s gone far beyond them after they heard me talk one
day. The word can spread when people are willing to listen. The impact can be
far-reaching.
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I just read a very interesting article posted on March 16,
2013 from Amy S.F. Lutz in Slate Magazine
on this very thing. Please take a moment to read
it here. It’s well worth a few minutes of your time! She provides a lot of
context and makes you really think about this idea of special needs segregation
vs. inclusion.
For me, it is a very loaded topic because it touches on so
many things.
I can’t help but draw a parallel between the intolerances
shown toward people of different races and the intolerances shown toward people
with both visible and invisible disabilities. It’s like we have a new “ism”
now, but there is no defined name for it other than discrimination and
intolerance.
A new form of segregation can be found in a self-contained
classroom, whether that’s good or bad.
Self-inflicted segregation happens when parents will bend
over backwards to conduct errands at off-peak times, trying to avoid large
audiences and be as inconspicuous as possible. I have done this more times than
I can count. It’s usually much safer at home, and this is why so many autism
families feel so isolated.
We know that the world isn’t ready to deal with the influx
of children and adults with autism and other special needs. As parents, we are trying
to prepare our kids for the world and also prepare the world for our kids.
Have you thought about how to educate others and create
awareness without it feeling confrontational and creating further discord? What
works for you? What hasn’t worked?
If you haven’t yet thought about it, maybe now is the time. 
