BlogHer - You May Approach the Short Bus - Comments

Fabulous Intro

Karianna — Thu, 16 Apr 2009 13:25:48 -0500

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

More Thanks

Shannon Des Roches Rosa — Thu, 16 Apr 2009 11:35:00 -0500

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

You've hit all the right notes!

JCK — Thu, 16 Apr 2009 10:24:01 -0500

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

Looking forward to sharing life

hobomama — Thu, 16 Apr 2009 03:12:17 -0500

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

Excellent!

butternugsquash — Wed, 15 Apr 2009 22:57:44 -0500

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

Word.

unringingthebell — Wed, 15 Apr 2009 19:36:34 -0500

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

Glad to see you here.

a little pregnant — Sun, 12 Apr 2009 19:42:43 -0500

Really glad. Really.

Welcome!

Miss Disgrace — Sat, 11 Apr 2009 00:17:49 -0500

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

Miss Grace's Disgrace

Disgraced Shopping

tweet @grace134

thank you

autismvox — Thu, 09 Apr 2009 22:29:29 -0500

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

Thank you all for such a

Shannon Des Roches Rosa — Thu, 09 Apr 2009 15:20:14 -0500

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

Welcome!

HeatherB — Wed, 08 Apr 2009 16:20:33 -0500

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

Bravo

VickiForman — Wed, 08 Apr 2009 13:57:40 -0500

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.

Hooray! I love you. That is

Super Jive — Wed, 08 Apr 2009 13:39:38 -0500

Hooray! I love you. That is all.

(Also, good first post.)

Blogher Pop Culture Editor

Welcome!

Liz Rizzo — Wed, 08 Apr 2009 13:28:16 -0500

I look forward to reading more.

And I love your profile pic. :)

Liz Rizzo

I blog at Everyday Goddess.

My Son has apraxia

TheMomTreeMom — Wed, 08 Apr 2009 11:13:13 -0500

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

You May Approach the Short Bus

Shannon Des Roches Rosa — Tue, 07 Apr 2009 19:12:04 -0500

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