Making the Internet work for people with autism

by Patricia Wright

Do people still actually use those big books of yellow pages? I suppose so. But I must say, I can’t remember the last time I looked up a phone number or address that way. Why do that when I can access information more quickly using a Web browser?

The ability to utilize the internet is key for staying connected to the world. Web sites and Web browsers need to be designed to ensure that people with disabilities can access this content too.

A terrific Associated Press article this week highlighted a creative grandfather who wanted his grandson to have access to the web. His grandson has autism and needed some accommodations.

LeSieur tried to find online tools that could guide autistic children around the Web, but he couldn’t find anything satisfactory. So he had one built, named it the Zac Browser for Autistic Children in honor of his grandson, and is making it available to anyone for free.

The browser is available at www.zacbrowser.com.

Another tool for increasing web accessibility for individuals with disabilities is Webwide, a symbol enabled web browser. Individuals with autism may be able to interpret and understand information more successfully with the symbol supports and added visual cues Webwide provides.

Web access is important for everybody — people with and without disabilities. The Web Accessibility Initiative (WAI) develops strategies, guidelines, and resources to help make the Web accessible. With tools like Zac Browser and Webwide, individuals with autism may have greater success when they surf the net.

Anchors away, mates: sailing with autism

by Beth Finke

Big news! After a horrendously long winter, we finally enjoyed a warm weekend in Chicago recently! To celebrate, my husband and I headed to Burnham Harbor on Lake Michigan for an open house — the Judd Goldman Adaptive Sailing Program was offering free sailboat rides and grilled food to get the word out about what exactly they do.

What they do, exactly, is teach people with disabilities how to sail. And turns out Chicago isn’t the only place offering courses like this. A newspaper story about David McGinnis, who has autism, highlights the Heart of Sailing program in Portland, Oregon.

“Feeling the water beneath him, looking out at the river and the sky, it put him in a different place than where he usually is,” Donilee McGinnis, who is 25 and a Portland State University student, said of her brother on the sailing trip. “He looked really, really relaxed.”

A program in San Juan archipelago in Northwestern Washington called Talisman provides a sailing program for teens with Asperger’s and High-functioning Autism.

But it sounds like if you really want to sail, you need to go to New Zealand. A post on the Autism New Zealand Inc. site asks, “Who wants to go sailing, then?” And as my co-worker Nigel, born and raised in Auckland, points out, “Everyone in New Zealand sails — having a disability is no excuse!”

Autism things considered

by Kathy Patrick

Having a child on the autism spectrum gives me a lot to wonder about. Why were we destined to be challenged every day? How different (not better, different) would our lives have been otherwise? How much money would we have had if it wasn’t spent on interventions and support?

With all those notions clouding my brain, it can be hard for the blessings of having a child on the spectrum to shine through, but when they do, they glow. Like neon signs, flashing in front of my face.

I had one of those neon moments when I was asked to record a radio piece for Life Love & Health about some of the trials and triumphs that our family experiences.

Life, Love & Health launched in 2003 and has become America’s most listened-to daily health and lifestyle program, reaching over 6.1 million listeners.

You can listen to the piece here.

Barbara Gaither joined me on the program – she’s the mom of Easter Seals 2008 National Child Representative Scottie Gaither. We shared our stories with Chris Springmann, executive producer and host of the program.

I shared one particular story about how Adam’s autism impacts my younger son, Mark. At a very young age, my keen, insightful Mark noticed my struggles with Adam and said, “It must be hard being you.”

I agreed, and cried. Is it okay for me to reveal it’s hard? Am I supposed to make this look easy? Is it possible to fool anyone into thinking it’s easy to live each day supporting a loved one who struggles so hard with communication, with social ineptness, with excessive fears?

The producer, Chris was one of those folks you feel comfortable with right away. He was warm and encouraging. He asked questions like a friend, not like a reporter.

I answered questions like a friend, not like a pretender.

The neon sign went off for me when I found out that Life Love & Health radio spots get picked up on National Public Radio and XM Satellite Radio. I have listened to National Public Radio for decades, and one thing on my ever-growing “to-do-in-life” list is to record a bit for National Public Radio.

Chris helped me check that off my list. Recording this radio bit for Life Love & Health also helped me expose a few notions about life’s challenges. Best of all, it helped me notice one more neon sign along the journey.

Book Review: Cynthia Lord’s “Rules”

by Beth Finke

In a comment to my Mother’s Day blog, a reader complimented her teenage daughter.

Im so proud of my 16-year-old daughter Jessmill. She is the one that will make me and her dad go out. She says, “get dressed and take mom out to the movies or to dinner, I’ll watch Johnny!” (her brother who has autism — he is 14) … She is our angel, she understands him, and takes great care of him!

This comment made me think of the novel Rules by Cynthia Lord. I heard about this book when I interviewed Carly Gaither for a story in an Easter Seals publication called We Are Easter Seals. Carly’s little brother Scottie Gaither has autism, and he’s the Easter Seals 2008 National Child Representative.

When Carly was interviewed for this article, her class was reading “Rules,” an award-winning fictional children’s book that looks at autism from an older sister’s perspective.

“My language arts teacher told me we’re reading it because of Scottie,” she beams. “And because of me, too!”

When I interviewed Carly for the story, she admitted that growing up with a sister or brother who has autism is not always easy.

Other kids make fun of her little brother sometimes. She describes one time when Scottie approached her group of friends and wanted to play with them. “We were playing something he probably wouldn’t want to play, and we told him that,” she says. “He started whining, and crying, and yelling really loud.” A group of teenagers hanging out nearby pointed and laughed at Scottie. “It’s sort of embarrassing, but then it’s really sad, because they don’t know what’s going on with him. They just think he’s an eight-year-old baby.”

Carly’s been through this before. Many times. She knows what to do. “I ignore them and pretend they didn’t do anything wrong,” she shrugs. “I just, like, forget about ’em.”

Carly told me that reading Rules helped her realize she was not alone. The book has won a host of awards, including a Newbery Honor Medal and the Schneider Family Book Award. The Schneider Award is given by the American Library Association — it honors an author for the artistic expression of the disability experience.

Carly Gaither and the American Library Association can’t be wrong. I recommend this book!

Kids vocalize approval as governor signs autism bill

by Beth Finke

I am happy to introduce Wren Newman as a guest blogger. Wren serves on the
Executive Board of Directors for Easter Seals South Florida and is Associate Dean for the Programs in Speech-Language Pathology and Communication Disorders at Nova Southeastern University. She was in the audience last week when Florida Governor Charlie Crist signed a bill that could lead to early autism diagnosis and treatment for thousands of children in their state.

Kids vocalize approval as governor signs autism bill
by Wren Newman

The autism bill was signed throughout the state on Tuesday, May 20 — Lt. Gov. Jeff Kotkamp signed in Jacksonville, Ft. Myers and Pensacola. Gov. Crist signed (with former Miami Dolphins quarterback Dan Marino at his side) in Tallahassee, Orlando and Davie. I attended the signing in Davie as a Nova Southeastern University associate dean and as a South Florida Easter Seals Board member.

A story in the Tampa Tribune describes the bill this way:

Effective April 1, the bill will require large insurance group policies to cover behavioral therapies for autistic children, up to $36,000 a year, with a lifetime maximum of $200,000.

I was very happy to see so many families at the signing who are impacted by autism, along with those who have worked with those with autism over a long period of time. It was a touching ceremony all around, with kids vocalizing during the speeches and everyone exhibiting sensitivity to the children.

Autism assistance dog denied access

by Beth Finke

A news story about an autism assistance dog caught my attention last week. The story reported that four-year-old Jayden Qualls showed up at his California preschool with a new autism assistance dog and was denied access.

School officials said they need to determine if Houdini is a service dog or a companion dog. They also need more time to find out if the dog is warranted at the school and if so, how he fits into the flow. The Americans with Disabilities Act gives Jayden the right to have Houdini in school, Qualls said. Jayden’s parents bought Houdini for $13,000 from a nonprofit called Autism Services
Dogs of America.

In my What do autism assistance dogs do? blog, I questioned the high price autism assistance dog trainers are charging for these dogs. I still do question that. I use a Seeing Eye dog to get around safely, and although these dogs can cost up to $50,000 to train, the guide dog user is never charged that much. My first dog, Dora, cost me $150. Subsequent Seeing Eye dogs cost $50.

And though Jayden’s mom believes the Americans with Disabilities Act (ADA) gives Jayden the right to have Houdini in school, the jury is still out on that one. To qualify as a service animal under the ADA, a dog must be “partnered with a person with a disability and individually trained to do work or perform tasks for the benefit of that person.” Courts would have to decide whether Houdini performs tasks for Jayden or simply acts as Jayden’s companion.

However this all resolves, there is one last question just begging to be asked. Can a four-year-old take care of a dog? If not, who cares for the dog while the dog is at school with the child? You have to be at least 16 years old to train with a Seeing Eye dog— the Seeing Eye believes working with a guide dog demands a certain amount of physical, mental, and emotional maturity. In simple terms, you have to be mature enough to care for a dog.

Maurice reports in from Celebration of Giving

by Maurice Snell

Every May Easter Seals honors its corporate partners at Celebration of Giving. This year when we gathered in Las Vegas we learned that Safeway led the way towards the Easter Seals corporate partners combining to give more than $21 million to Easter Seals. Even though it was a horse race, it was no competition against each other as they teamed up with the other partners to do a great deed.

It was great to be at this reunion of the Easter Seals family, too. The reunion included Adult and Child Representatives from the past and present. Claire Huckel was there, and so were Bethany and Colin DeVault, Palmer Harston, Ryan Odens, and of course, David Owens and Scottie Gaither. Every one of these individuals gave us an update on their progress since devoting their time to the Easter Seals organization. The good news was everyone (including me) is doing well with what they are doing right now. I’ll be writing more about what I’m up to in a future blog, and I wish the rest of the representatives nothing but more great aspirations in life.

2008 is another great year for Easter Seals, which literally translates to another great opportunity for everyone to give towards the Easter Seals organization. The contributions will lead to greater things in life for Easter Seals.

Families with autism help families with autism

by Patricia Wright

Last weekend I spent time with one of my favorite groups of people — parents of children with autism. I was in Bloomington, Indiana at a conference hosted by the Indiana Resource Center for Autism.

Strengthening Our Roots: A Conference for and About Families of Children on the Autism Spectrum was a wonderful demonstration of information sharing and community building for families in Indiana. I learned about homelife that I, as an educator and a professional, can help support and improve. I also observed formal and informal networking of family members — families with experience sharing their expertise with families who have newly-diagnosed children, and families with like children sharing their joys and their challenges. Best of all, I was able to watch families share that knowing smile as others told their stories.

Learning with and from family members is a powerful experience. Families looking for this sort of support can turn to their local Autism Society of America chapter to find out about formal and informal support networks.

Mixing autism and religion

by Beth Finke

A TV news story yesterday about a church banning a teenager with autism from Sunday services prompted me to dig up this helpful resource — Autism and Faith: A Journey into Community is a 52-page guidebook to help clergy, religious educators and families develop “inclusive spiritual supports” for individuals with autism.

The guide is interfaith, with short articles from members of Christian, Jewish, Hindu and Muslim communities. The stories share the experiences, both positive and negative, that families with autism have had with their own faith communities. It’s written by clergy, parents, professional experts on autism, religious educators and best of all, it includes some first-person accounts by individuals with autism about their experiences in religious settings.

The Autism and Faith Task Force of New Jersey’s Center on Services for the Autism Community (COSAC) helped develop this guide, and residents of New Jersey can get their first copy free of charge. For others, the guide costs $5. More information about ordering Autism and Faith: A Journey into Community is available from the Elizabeth M. Boggs Center on Developmental Disabilities.

Autism worries? AutismCares

by Patricia Wright

The response to Beth Finke’s blog about families with autism having lower incomes has been humbling. As a professional working in autism service delivery I am well aware of the ADDITIONAL expenses families incur when they have a child with autism. Therapies are expensive, specialized childcare may be necessary, adaptive equipment is costly … when families with autism have fewer funds to draw on, it just adds to the challenge of caring for a child with autism.

AutismCares is stepping up with “Family Support Awards” to help families with autism. From their website:

Family Support Awards

AutismCares provides Family Support Awards for the costs associated with housing, insurance premiums, medical care, prescriptions, daycare, automobile repair, funeral expenses and other items or events for eligible families on a case-by-case basis. Payments are made directly to the vendor providing the services.

Family Support Awards will not exceed $1,500 per family. The support is modest, but clearly this group is attempting to address the needs so eloquently portrayed by the number of respondents to Beth’s blog.