Shannon Des Roches Rosa
www.squidalicious.com
What I want people to know -- and why I write -- about parenting my
autistic son
When I realized my son Leo had autism and was a special needs child, I
had a visual epiphany similar to the wide-eyed new parent who suddenly
sees babies everywhere -- except I saw short buses.
Short buses. The kind that take kids like my autistic son to and from
school every day. They’re everywhere, and if you don’t believe me,
take a tally the next time you drive around any reasonably-sized town.
Then think about all the kids who must be riding on those buses, and
those kids’ parents and families. Think about all the kids who used to
ride that bus and are now adults. That’ll give you some idea about the
size of the local special needs community. I’m guessing it’s larger
than you might have thought.
That’s the kind of thinking I’m hoping to jumpstart. I want you to see
all of those buses, and consider what they represent.
More than that, I want you to feel comfortable with my child. I want
you to feel so comfortable that you don't give his disabilities any
more thought than you do the quirks of “typical” kids who never say
thank you, pee on the sidewalk when they think no one’s looking, or
live on naught but chicken nuggets.
I want you to get to know my son and the people with disabilities in
your life, in your neighborhood, in your kids’ schools, to learn what
makes those people special because they are unique, not because
they're disabled.
That knowledge and ease doesn’t always come naturally. During my own
elementary school years, children with special needs were rarely seen
or heard, and never included. They were kept apart from us other
students, which meant we were tacitly taught to consider them separate
and unapproachable.
I don’t want my son to be hidden away like that, to be an
unmentionable. I don’t want his sisters to feel like they can't talk
about their quirky brother with their friends. I don’t want their
schoolmates or cousins to pussyfoot around Leo’s autism. I want all of
those kids to discuss disabilities as freely as they do eye, skin, and
hair color. I want them to try to include Leo in the discussion, and
then laugh instead of squirm if his reaction is inappropriate.
I want you to feel the same way.
I also want you to understand that as positive as I try to be and as
much as I love my son and despite all the sweet times we have
together, I would be lying if I told you that being Leo's mom is a
cakewalk. (Dude, parenting is never a cakewalk.) Instead, I’m going to
tell you what it’s really like to have a kid with special needs. I
promise to be entertaining, or at the very least engaging. In return I
expect you to listen and learn, and hopefully, eventually, to take
action.
I don’t mind if you decide to sit on the sidelines for a while while you absorb what I have to say. I don’t even mind if you indulge in occasional voyeur’s gratitude for your own non-disabled children, or differently disabled children -- or lack of children. But I do hope that, once you've listened for a while, you’ll understand why children with special needs are not only worthy of your attention, but they're your responsibility, too.
Childless or child-full, if you are of parenting age and live in the
United States, then you will be supported by and/or have to support my
son’s generation. Think about that. And then I hope you will realize how critical it is to challenge those who complain about the expense of educating students with special needs, or try to spin them as burdens on the rest of society -- because it makes financial sense to invest in education and therapies for my son and students like him, and give them a chance to learn skills and contribute to society. The costs and social burden are much greater when we relegate people with disabilities to life-long dependency.
Whether you choose to learn, participate, and help foster attitudes of
inclusivity that will eventually lead to better care, opportunities,
employment, and community for people with disabilities is up to you.
I'd love to help show you the way, if you're willing.
A version of this post was previously published at www.blogher.com.