Special Needs
You May Approach the Short Bus
by Shannon Des Roches Rosa

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.

DramaMama muses on how her special needs child is Shifting into the realm of social success. I hope you find this as inspiring as I did

Submitted by Shannon Des Roches Rosa (view blog) on Tue, 04/07/2009 - 4:12pm

Comments

 

Welcome and thank you for

Welcome and thank you for opening your heart and world to all of us here. I don't have children, but, as you say, that doesn't change how important it is to be aware of those with special needs.

Because it's true--special needs children make me uncomfortable and I suspect this has much more to do with how they were cloistered away from the rest of my peers in school than it has to do with anything specific about being special needs.

Thank you for giving me the opportunity to address these thoughts, constructs and prejudices. I can't wait to get to know you better. Stop lurking in the CE discussions!

Submitted by avflox on Tue, 04/07/2009 - 21:24
 

Welcome !

Shannon, welcome! This should be really enlightening. I have always thought parents of children with special needs are people of incredible courage.

I come from a country (India) which is not very accessible or inclusive. I reported on accessibility issues while in India. People are working towards it, though. In fact, two people I know who are working with the government to make this possible are differently-abled themselves.

There was a sad story (the link is to a post I wrote about it) about a couple who wanted to abort their baby after they learnt it was going to be born with a severe heart condition. The laws don't allow an abortion after certain number of weeks. 

The discussion that followed was largely in the couple's favor with people pointing out how incredibly hard and hopeless it is for people with disabilities. 

Congratulations to you for talking to us about it. I look forward to reading your thoughts. I hope to be able to forward some of them to my friends working in this field back home.

 

 

Submitted by snigdhasen on Tue, 04/07/2009 - 22:23
 

Congratulations!

Shannon, thank you for giving us such a brave and honest debut. I look forward to more posts and what I hope wil become an enlightening dialogue on special needs families. Well-done, my friend!

Submitted by kristenspina on Wed, 04/08/2009 - 04:56
 

Great Opening

I'm sitting right here with you, ready to listen and have my mind opened.  Thank you for doing this.

 

Mel

 

Venting about infertility since 2006
www.stirrup-queens.blogspot.com
and we're not talkin' cowgirls...

Submitted by Melissa Ford on Wed, 04/08/2009 - 04:59
 

I'm so glad you're here!

My son has autism and I'm all about educating as many people as I can about what it means so they won't be so afraid of it. It's not a tragedy.

My son is sweet and funny and he's taught me more about life and love than I ever imagined I could learn.

 I can't wait to read what you have to say!

Thanks! 

..........

Behavior Buddies

Visual Tools for Positive Parenting 

http://www.behaviorbuddies.com 

 

Submitted by kimmskee on Wed, 04/08/2009 - 06:26
 

Short buses, long investment

If you've heard the phrase, "If you think education is expensive, try ignorance," then this post makes even more sense. My teen is blind and has Asperger's syndrome, a high-functioning autism disorder. He has a great future -- if he is well educated. We push the school system a lot, and we push them hard, because if we don't, who will?

Thanks for the great post! 

Daisy

Compost Happens

http://compostermom.blogspot.com

Submitted by Daisy on Wed, 04/08/2009 - 06:22
 

Autism and parenting

We had a guest blogger last week, talking about midlife, and parenting her two sons, one of whom has autism.  It's tough.  Fostering a sense of community, in the real world and online, helps a great deal.

Wanted to add the link here. 

 

Women's Voices for Change: http://womensvoicesforchange.org

Non-partisan news and commentary from women over 40

Submitted by WVFC on Wed, 04/08/2009 - 06:40
 

Welcome!

Its always great to hear another voice on special needs.  As a mom with a special needs son and brother in law, I can relate. 

Submitted by mstaz1112 on Wed, 04/08/2009 - 07:10
 

My Son has apraxia

I can relate to everything you are saying about short buses.  My son rode one for two years while he was in a special needs preschool.  He was severely speech delayed, and had to go through speech therapy through the state as well as privately.  He had every test under the sun, for autism, hearing loss, muscle issues...that's just what I can remember.  It took until he was three years old before he got an official diagnosis, so we went through two years of not knowing what was "wrong" with him. The services through the state (I live in Arizona) were amazing, and I would pay higher taxes to make sure that those services continue to be available to all families with special needs children.

 I wrote My Son's Story about it, and receive emails from other moms who have a child that was recently diagnosed.  It is such a lonely feeling when you are surrounded by "typical" children, and family not understanding what you are going through.  To have a community of moms and women keeps you sane (somewhat).  Thanks for your story and I will check out your links!

By Trina Giusti

Submitted by TheMomTreeMom on Wed, 04/08/2009 - 08:13
 

Welcome!

I look forward to reading more.

And I love your profile pic. :)

Liz Rizzo

I blog at Everyday Goddess.

Submitted by Liz Rizzo on Wed, 04/08/2009 - 10:28
 

Hooray! I love you. That is

Hooray! I love you. That is all.

(Also, good first post.)

SJ

Blogher Pop Culture Editor

Submitted by Super Jive on Wed, 04/08/2009 - 10:39
 

Bravo

This was my favorite:

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 love your writing, I love your style, and I love what you do for advocacy. I am so glad you are here.

Submitted by VickiForman on Wed, 04/08/2009 - 10:57
 

Welcome!

 I love raw honesty. So very refreshing and I have a feeling that you're going to be awesome.

Heather B.
Personal Blog: No Pasa Nada
BlogHer CE: Business, Career & Personal Finance

Submitted by HeatherB on Wed, 04/08/2009 - 13:20
 

Thank you all for such a

Thank you all for such a warm welcome. I especially appreciate all the pointers to resources and stories, some of which I'd not previously encountered.

With gratitude,

Shannon Des Roches Rosa

www.squidalicious.com parenting first, autism second

www.canisitwithyou.org real tales of schoolyard terror and triumph

www.BlogHer.com contributing editor, parenting children with special needs

Submitted by Shannon Des Roches Rosa on Thu, 04/09/2009 - 12:20
 

thank you

Shannon---this is warm and warming, inspiring, powerful, and I hear your voice so clearly. I think you've put your finger on what brings us together, what unifies us and what makes us a community who can't agree on some things.

 

But we sure do love our kids. 

 

 ---------------

still soapvoxing, now @ autism.change.org

Submitted by autismvox on Thu, 04/09/2009 - 19:29
 

Welcome!

This is a great first post Shannon.  I look forward to reading your entries here.

 

Miss Grace's Disgrace

Disgraced Shopping

 tweet @grace134

Submitted by Miss Disgrace on Fri, 04/10/2009 - 21:17
 

Glad to see you here.

Really glad.  Really.

Submitted by a little pregnant on Sun, 04/12/2009 - 16:42
 

Word.

I'm a special needs mom too. My daughter has Down syndrome. I'm definitely looking forward to reading more. Glad to "meet" you!

 

Tricia
www.unringingthebell.typepad.com

Submitted by unringingthebell on Wed, 04/15/2009 - 16:36
 

Excellent!

What an awesome, inspiring post! I'm also a mom of 2 boys with special needs. One has Asperger's Syndrome & one has Down Syndrome. We need more moms like you who are willing to step out there and tell it like it is - trying to break down those walls of ignorance, discrimination and fear that are out there.

 You go, girl. Thanks for what you're doing!

Christy

Motherhood...Unscripted

Submitted by butternugsquash on Wed, 04/15/2009 - 19:57
 

Looking forward to sharing life

Very cool, looking forward to having my eyes opened. This part of your article jumped out at me:

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'm obsessed, so forgive me for comparing it with this, but it reminded me of breastfeeding and my efforts and those of others to do just this -- to bring it out in the open and make it normal and not uncomfortable. So it was a good image for me to realize that that's what's been missing in my (and surely others') experience with special-needs kids: lack of direct and regular contact. And how cool if we could all have it, so that there'd be no discomfort. It wouldn't be unusual anymore, just how things are.

Very cool. Thank you.


www.HoboMama.com | A baby on my shoulder instead of a handkerchief on a stick

Submitted by hobomama on Thu, 04/16/2009 - 00:12
 

You've hit all the right notes!

Welcome, Shannon! Or I should say that those of us who have children with challenges are SO welcome to have you here. What a fabulous post. I look forward to reading you often.

 Your post title could be a book title!

JCK from Motherscribe

Submitted by JCK on Thu, 04/16/2009 - 07:24
 

More Thanks

And more people to learn from. Thank you all for being so receptive, especially those of you who know where I'm coming from.

Shannon Des Roches Rosa

Squidalicious.com parenting first, autism second

CanISitWithYou.org
real tales of schoolyard terror and triumph

Submitted by Shannon Des Roches Rosa on Thu, 04/16/2009 - 08:35
 

Fabulous Intro

So glad you're here. You are able to express things in such a mature, realistic way. I appreciate that so much. I know I need to have tougher skin about many of the issues that surround parenting in general, and then "when your child is quirky" beyond that. Thank you for the rational voice.

 XO,

Karianna

---

www.kariannaspectrum.com

Submitted by Karianna on Thu, 04/16/2009 - 10:25