A last-minute look at the candidates

by Beth Finke

Five days until the election. If you are still undecided, here are some links to information on each presidential candidate’s view on autism and other disability issues.

The Autism Society of America (ASA) website features a presidential election resources page with full statements by Republican Sen. John McCain and Democratic Sen. Barack Obama.

If you prefer going directly to each candidate for information, the McCain campaign’s website highlights his healthcare and education policies, plus a statement about autism. Obama’s homepage and his disabilities page give information about the candidate’s policy issues.

I’ll be voting on my own this year using a touch screen with audio output — the Help America Vote Act of 2002 requires “voting systems” to provide independent and private voting for all voters, including citizens who have disabilities. I toyed with voting early, but in the end decided to wait until election day. I’m actually looking forward to standing in line with my fellow Americans.

Scottie Gaither passes on the baton

by Barbara Gaither

We returned on Sunday from an action packed five days in Orlando for the Easter Seals 2008 Convention. This trip was bittersweet for the Gaither family — it marked the time when Scottie passed the baton, so to speak, to the new child representative. Scottie and all of us have had such an amazing and exciting time this past year that it will be a little hard to give up. We have made the most precious friends and have had some truly wonderful experiences.

There are some very specific things I have learned this year as the mother of the Easter Seals 2008 National Child Representative:

• Scottie does not like to wear long sleeves or dress fancy (as he would say).
• He has become a very adept traveler and knows exactly what to expect at the security gate in airports.
• He is a very bright and funny young man that can rise to almost any occasion and never ceases to amaze me or his audience.
• He is autistic. In case I ever begin to forget, he finds gentle ways to remind me.
• He has been treated like a celebrity and in his mind has become one as well.
• He can go most anywhere and sit through most anything if he has his Nintendo DS or his PSP and a good video game.

The people at Easter Seals all over this country and beyond are the most amazing people I have had the honor to know. We have only scratched the surface of our mission as a family: to give back to Easter Seals, as they have given us so much. Easter Seals is changing lives on a daily basis for children like my precious son Scottie. Easter Seals truly does provide HELP, HOPE and ANSWERS!

We would like to thank everyone who is involved with — and who contributes to — Easter Seals for all the love, kindness and support you have shown us this year. As I said at the convention, our official time might be over, but we plan to remain friends of Easter Seals for many, many years to come. Blessings to you all.

Watch a video about Scottie and the Gaither family and see how you can give help and hope to children like him.

Courting the “special needs vote”

by Beth Finke

Our son turned 2 right before the 1988 presidential election. Gus was enrolled in our local Birth to Three Early Intervention Program then, and would be entering the world of special education at our local public school the next year. If Michael Dukakis or George H.W. Bush had mentioned “special needs” in a speech or debate in 1988, I would have taken note. But trust me, I didn’t hear a word.

Fast forward 20 years. Last Friday, Republican vice presidential candidate Gov. Sarah Palin delivered a speech outlining policy goals for special education and disability and advocacy. You read that right. A major policy address. On special education and disabilities.

Here’s an understatement for you: this is an amazing election year. I already posted a blog about the final presidential debate, where both candidates mentioned autism and other disabilities. A post on the Left Brain/Right Brain – Autism News and Opinion blog asks whether McCain is “courting the autism vote.” A story in the American Chronicle this week mentions “the special needs and autism vote.”

But wait, there’s more! Last Tuesday, I got a call from an ABC 7 reporter here in Chicago. She interviewed me for a Sunday morning piece about McCain and Obama’s policies when it comes to disability issues. ABC 7 wanted to know who I thought might get … you guessed it, the “special needs vote.” If you missed my 8 seconds of fame on the Sunday morning ABC Chicago news, never fear! The story is available online.

Special needs vote. Twenty years ago, I would have never thought of stringing those three words together. But hey, nine million American children under age 18 have a special health care need, 54 million (1 in 5) have a disability, and an additional 54 million individuals are caregivers of people with disabilities.

Gee, I guess it’s about time the candidates started courting our vote!

Autismvox in Newsweek

by Beth Finke

When you get a chance, check out this article in Newsweek about Kristina Chew’s reaction to Sen. John McCain’s mention of autism in last week’s debate. You might recognize Kristina Chew’s name — she writes the Autismvox blog. I read that blog almost every day and have referred to it many times in my posts here.

Kristina Chew is an assistant professor of classics at Saint Peter’s College in Jersey City, N.J., and her son, Charlie, 11, has autism. Newsweek went to her to get “a mother’s reaction.”

What did you think of Senator McCain’s debate comments?

Kristina Chew: Very puzzling. It seemed that he was conflating autism and Down syndrome. Certainly, parents of kids with autism and Down syndrome have tons of overlap in our concerns, but they’re very different conditions. I found that troubling. And the comments he made about autism, they seem to betray a lack of knowledge or understanding about the kinds of things that autistic children need. It almost seemed to be a rhetorical statement. To be really cynical, it’s as if he’s playing a sympathy card. He’s sentimentalizing the children, but not looking at how we can help them, how we can teach them, how we can make things better.

But Palin does have a special-needs child.

His statement that Sarah Palin understands the challenges better than anyone else, I thought that was very unfortunate for him to say. It’s just incredibly presumptive. I don’t think we really have a sense yet of how Palin understands special-needs children.

Why not?

I think every parent of a special-needs child, we all want to feel that we’re experts, that we all do know better about our child. But I think in reality often we don’t. What I knew about autism when Charlie was an infant, a toddler, is nothing like what I know about it now. We’re all looking for answers,
for solutions, for better therapies and schools for our children.

There’s a lot more in the article, and its well worth reading. What was most interesting to me, though, is that Newsweek went to a blogger as an expert.

We’ve come a long way, baby!

It’s never too late: teenagers with autism

by Patricia Wright

“Early intervention is optimal, but it’s never too late.”

That was my favorite line from the Reaching an Autistic Teen story in Sunday’s New York Times Magazine. The piece was about the progress teens with autism can make with effective intervention.

Early intervention is important, but really, aren’t we all life-long learners? Teens with and without autism are capable of learning, developing new repertoires and increasing their quality of life. Parents and professionals often talk about the “window of opportunity” present in very young learners. Certainly young children with autism can make remarkable gains with effective intervention, but teens and adults with autism can also learn.

Easter Seals provides services and supports to individuals with autism throughout the lifespan. We believe learning is possible — at any age.

You’re not alone … when your sibling has autism or a disability

by Amanda Dodds

My brother was diagnosed with autism 12 or so years ago, but my parents were in denial. They were afraid of the word autism. So we told people that he had PDD (Pervasive Developmental Disorder).

I sure wish there had been a “Sibshop” around back then.

I did sign up for a “support group” at school for students with siblings with disabilities. When we went around the circle and I said that Brad has PDD the teacher thought I had made up a disability. I was sent back to class! Not only was I embarrassed, but I left feeling like nobody really understands what it is like to have a brother with autism.

Nowadays, Easter Seals Southeast Wisconsin provides Sibshops, a wonderful support network for siblings. Sibshops were developed by the Sibling Support Project in Seattle and are used throughout the country. The workshops recognize the many contributions made by brothers and sisters of kids with special needs. Kids can come together, play games, do crafts, and learn that they are not the only ones experiencing life with a brother or sister with a disability.

When I was growing up, it was hard to relate to other kids when it came to home life. I was embarrassed to have friends over because I didn’t know if my brother would have a melt down or walk around naked. It was hard to explain why there were always people around working with Brad. How I wish I’d had a support network, and friends who were experiencing similar circumstances!

If you have school-aged children who have a sibling with a disability, I would urge you to find your local Easter Seals or Sibshop support group. They may only meet once a month for a few hours, but I know firsthand that your child will leave with greater understanding and appreciation for their sibling and will find a safe place to share their hopes and fears for their sibling with Autism.

Read Amanda Dodds’ biography.

Confusing Down Syndrome with autism?

by Beth Finke

After last night’s presidential debate, a post on a blog called Inside Autism wondered, “Does John McCain think autism and Down syndrome are the same thing? A lot of bloggers think so.”

That got me curious. After a bit of searching I found other blog posts on the subject, including this one from Brian Beutler’s Debate liveblog:

John McCain says Sarah Palin knows a lot about having children with autism. Presumably he thinks she knows more about this than anybody in the country. Presumably he also thinks autism is approximately equal to Down Syndrome.

If you missed the debate, here’s what happened. When Sen. McCain [R – AZ] was asked whether his running mate was qualified, he said:

She’ll be my partner. She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we’ve got to find out what’s causing it, and we’ve got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

She understands that better than almost any American that I know.

I, for one, am willing to give McCain the benefit of the doubt on this one. I’m guessing he meant Palin understands autism because her baby son has special needs (he has Down Syndrome), plus her sister has a child with autism.

Sen. Obama [D – IL] used a question about the budget to address the autism issue.

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we’re going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

And if we have an across-the-board spending freeze, we’re not going to be able to do it. That’s an example of, I think, the kind of use of the scalpel that we want to make sure that we’re funding some of those programs.

My Easter Seals colleague, Katy Beh Neas, was downright clairvoyant when she blogged last year about how autism would turn out to be an issue in the presidential campaign. Messages about the care and treatment of people living with autism and other special needs can now be found side-by-side with messages about foreign policy, our economy and global warming. Who would’ve guessed?

I’ll leave you with my favorite blog quip about autism from last night’s debate. It comes from Matthew Baldwin, author of the blog Defective Yeti. I’ve referred to Defective Yeti in an Easter Seals autism blog post before. After Baldwin’s son was diagnosed with Autism Spectrum Disorder (ASD), Defective Yeti started featuring posts about autism from time to time (in addition to the posts Baldwin already publishes on politics, movies and the like).

Only one sentence from Baldwin’s liveblog of the debate last night mentions autism, but I think that one sentence is brilliant.

6:40: At what point did “autism” become the center square on the Political Bingo card?

Playing with kids who have autism

by Bob Glowacki

Well, I saw “Blog Maven” Beth Finke at a conference in Chicago last week and she reminded me of a story I wanted to share.

Last month, I had the pleasure of leading a presentation with our speech therapist and P.L.A.Y. Project (Play and Language for Autistic Youngsters) consultant, Amanda Dobberstein at a local Kiwanis meeting. A family we see here at Easter Seals Southeast Wisconsin gave us permission to share a video that demonstrates the way we can use P.L.A.Y. Project in our state. The state of Wisconsin has approved the P.L.A.Y. Project as a fundable option for families eligible for the CLTS (Children’s Long Term Support) Waiver. Children who finish the intensive phase of the waiver and are moving to the ongoing phase can now receive funds to pay for P.L.A.Y. therapy.

At the start of the video we showed to the Kiwanis, you see a mother, son and daughter surrounded by toys — they look like any young family. You see little Jason moving around his mother, playing with different items, not engaging his sister at all. In most of the scene, Jason’s back is turned. He doesn’t always respond to his mother’s questions about the color of objects or the shape of the object. A family physically together, yet miles apart.

Second scene, that same mom and Jason playing together after just a few months in the P.L.A.Y. Project. Jason is asking mom to “make a roar” and tickle him. Mom makes three different noises (a chirp, a quack, a moo) but no roar. Jason says no to each. “No, Mom. a roar!” Finally, Jason raises his finger and says, “I got it! A LION!” Mom roars and tickles her son and giggles hysterically. It all ends in a hug.

No more playing around — now they play together.

See the difference? The two are learning about animals and sounds together during play time. We see moments of imaginative play, creativity, and engagement. Best of all, we see a loving moment between parent and child.

With autism, the social aspects that impede a child’s development can be the largest obstacle. The P.L.A.Y. Project is directed at those soft skills we all need — not just on the playground, but later in life at a job interview, around the water cooler and at social events.

Why I like shopping at Safeway

by Beth Finke

Every year, the U.S. Department of Labor gives the SPIRIT Award to an individual with a disability or an organization demonstrating leadership and “an unyielding commitment to achieving success.” There are over 1,700 Safeway stores across the United States and Canada, and Safeway’s national workforce includes over 10,000 employees with autism and other disabilities.

So it was no surprise to learn last week that Safeway Chairman, President and CEO Steve Burd was awarded the U.S. Department of Labor’s 2008 SPIRIT Award.

The SPIRIT award is part of the Department of Labor’s New Freedom Initiative, an effort to increase workplace opportunities and enhance workplace environments for people with disabilities. From the U.S. Department of Labor’s Office of Disability Employment Policy website:

Award recipients are recognized for their qualities to inspire and enhance the ability of Americans with disabilities to enter and participate fully in the 21st century workforce.

These qualities include:

• Strength in leadership
• Perseverance in unyielding commitment to achieving success
• Integrity
• Role model
• Independence
• Trail blazer

The SPIRIT Award is one of many honors Mr. Burd and Safeway have received for their dedication to people with disabilities — Safeway has been one of Easter Seals’ most generous corporate partners, and earlier this year we recognized Safeway as our top corporate sponsor for their contribution of $9.2 million to support Easter Seals services for people living with autism and other disabilities.

Safeway stores operate under various brand names across the U.S. and Canada, including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska).

I could go on and on about Safeway, but I gotta go get groceries. At Safeway, of course!

Book Review: Clarabell van Niekerk and Liezl Venter’s “Understanding Sam and Asperger Syndrome”

by Katy Beh Neas

I just read a great children’s book, Understanding Sam and Asperger Syndrome by Clarabell van Niekerk and Liezl Venter. This picture book is about an elementary school-aged boy named Sam and his family. I especially liked that this book has such a joyful portrayal of a family that is grounded in love … and that it focuses on Sam’s strengths and likes.

The book ends with 10 Tips for the Child Reader — these tips are designed to help the reader be a good friend to a child with Asperger’s. One such tip is “Treat your friend as a regular kid.” Another is “Some days can be tough.” Amen to both!