You May Approach the Short Bus
Shannon Des Roches Rosa here. You may already know me as the flippant but steely autism mom Squid Rosenberg from The Adventures of Leelo and His Potty-Mouthed Mom, or as the co-founder of the schoolyard social stories and special needs fundraising book and blog project Can I Sit With You?
But if you don’t know me at all, then let me tell you why I'm honored and excited to be a BlogHer Contributing Editor on parenting children with special needs:
This is a precious opportunity. I have so much to say about kids with special needs. If you’re not already part of our world, or if my son and his autism scares you or makes you uncomfortable, then I want to take your hand and be your guide. I want to show you what it’s like to be us, get you to think about my son and his peers as children who happen to have disabilities, and help you past any discomfort with differences.
Let’s start the tour right now.
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. 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 while holding court in this space. 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, poop 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. 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. You can bitch and moan (and kiss my ass) about how expensive it is to educate special needs children, but how much more do you think it will cost to support them for several decades past their school years as unskilled and dependent adults? Wouldn't you rather spend a fraction of that money on education and therapies, up front, on the chance that people like my son will learn enough skills to be contributing members of society?
Whether you choose to learn, participate, and help foster attitudes of inclusivity that will eventually lead to better care, opportunities, and community for people with disabilities is up to you. I'd love to help show you the way, if you're willing.
Here are some links to help you get used to the world of families who have children with special needs:
Do you know a parent or caretaker of a child with special needs? How well do you think they’re doing? Really? Check out this Interactive Autism Network post about Autism Parenting and Depression.
Kim Stagliano has some frank advice on what you can do to make a concrete difference for a parent of a child with autism. Please take it to heart.
Jennyalice has a lot to say about Change, and how little it takes to wreck the fragile foundations of a special needs child’s carefully built routine.
Kristina Chew discusses the many and often unexpected ways in which we and our special needs kids need accommodation.
Jennifer Graf Groneberg talks about the wrenching experience of disability complicated by emergency medical needs.