Sibshops support families with autism

by Bob Glowacki

One of the new programs we, at Easter Seals Southeast Wisconsin, are offering in the Milwaukee area is called “Sibshops.” 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. Sibshops reflect a belief that siblings have much to offer one another — if they are given a chance

The Sibshop model intersperses information and discussion activities with new games, cooking activities, and special guests. Peer support is provided within a lively, recreational context that emphasizes a kid’s perspective.

Our first workshop was Saturday. We had five “sibs” attend — of the five, four had brothers with autism. The sibs talked about their brothers’ behavior in public and how that affected them. It was a great outlet for them to share their personal feelings.

The workshop also served as a reminder that as we think of serving the 1 in 150 children diagnosed with autism, millions more are affected in their family relationships.

We need to support them, too.

Scottie dresses fancy in Atlanta

by Barbara Gaither

Well, February 12 was a very exciting day for Scottie. The Easter Seals West Georgia affiliate (right here in our home town of Columbus) arranged for him to go to Atlanta, our state capital, that day. They said our Rep. Vance Smith (R.-Ga.) would be recognizing Scottie for being selected Easter Seals 2008 National Child Representative… and it would all happen right there on the House floor!

The only down side in Scottie’s book was when I told him he’d have to “dress fancy” — as he calls it. Scottie really does not like to wear anything except blue jeans and a t-shirt. The shirt MUST be short sleeved and he does not care how cold it is outside — just one of the many wonders of parenting a child with autism.

I told him he would have to wear his coat and tie. He was not happy. He resigned himself to it, however. He knew it was the only way he could make the trip.

The day was filled with excitement and the usual trappings of entering a state building — lots of metal detectors and all kinds of activity all around us. When it was finally our time to enter the House of Representatives, Scottie was in awe. The room was huge and filled with many people. Our son stood shyly by Rep. Smith’s side on stage as he told the audience how amazing Scottie is.

I was beginning to wonder if Scottie was going to be able to handle all the attention. Just then, Scottie caught the eye of an adult, a total stranger in the audience who was waving at him and smiling. Scottie began to wave and smile in return. The crowd gave him a standing ovation.

It was a proud moment to say the least. After departing from the House floor, we took a tour of the “museum” on the fourth floor of the state building. This was definitely Scottie’s favorite part. There were animals and artifacts and lots of information about our state. As we walked through the displays, Scottie rattled off the Georgia state bird, state insect, state flower and state song. I had no idea he knew so much about our state already.

He left the capital with a stuffed animal from one of the representatives cradled in one arm, a package of information about Georgia in the other. “Mom, that was really fun,” he told me as we got in to the car. “And you know what else?”

“What, Scottie?” I asked.

He replied “I did not even mind being dressed fancy!”

Welcoming my son to Holland

by Kathy Patrick

When I learned my son might have lifelong learning disabilities, auditory processing problems, and behavioral challenges – I was devastated. Adam is 12 years old now, and I’ve spent the last 12 years researching interventions to mitigate the damages from his disability.

Or, you could say, I’ve spent the last 12 years learning the lay of the land in Holland.

You’ve probably heard of the essay called “Welcome to Holland.” It was written by Emily Kingsley, a writer for Sesame Street. Kingsley was instrumental in integrating characters with mental and physical disabilities into Sesame Street scripts — Easter Seals has awarded her three EDI (Equality, Dignity and Independence) awards and one Grand EDI for her work.

Kingsley wrote “Welcome to Holland” after her son Jason was born with Down syndrome. The piece compares raising a special needs child with traveling to an unexpected destination.

When you’re going to have a baby, it’s like planning a fabulous vacation trip — to Italy. You buy a bunch of guide books and make your wonderful plans…

… the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

Although I never got to Italy as planned, I have had many fascinating experiences in Holland. I have learned to appreciate the very special — and unexpected — things Holland has to offer.

I have recently been selected to be part of Easter Seals Autism Spokesperson Network. As an Autism Spokesperson, I’ll be sharing Easter Seals messages about the importance of early diagnosis for individuals with autism, about the fact that autism is treatable and that people with autism can lead meaningful lives. I’ll be talking to the media about the urgent need for increased funding for services, especially for adults with autism.

As part of this exposure, I will be sharing my personal story to a much greater audience — much larger than those closest in my circle of support. I’ll be acknowledging to the world that our family lives deep in the heart of Holland.

My concern: my son still thinks he’s going to Italy. He has a hard time getting through the day in middle school worrying about who is going to think he’s different, or not smart, or weird.

And now, in sharing this story with you, I’m starting to wonder, is it time to tell him about Holland? And how?

Intervention — what can it get you?

by Patricia Wright

What can systematic intervention provide for an individual with autism? For Carly Fleischmann, it gave the opportunity to communicate.

Although the ABC News report about Carly was brief, it appeared that Carly was independently communicating via speech generating software on a laptop. What’s important to note here is that she appears to be communicating independently, not utilizing facilitated communication — facilitated communication has had difficulty gaining validity.

After years of intensive intervention, Carly’s communication skills have improved to the point that she can convey her thoughts to others. Individuals with autism provided with appropriate intervention make progress. Carly is testimony to the positive outcome that can occur through intensive intervention. 

The opportunity to hear Carly’s perspective as a person with autism is a gift in itself. Her ability to communicate also demonstrates the outcome of years of work — both on her part and on the part of her dedicated parents.

Learning to communicate can be difficult for individuals with autism — communication is one of the core deficits of the disability. But as my mother has so often told me — hard work can get you somewhere.

Autism Spokesperson Network

by Beth Finke

I spent so much time in yesterday’s post bragging about blogging blind — and about the blogging session my colleagues and I will present at tomorrow’s Easter Seals Autism Spokesperson Network meeting — I neglected to explain exactly what the Easter Seals Autism Spokesperson Network is.

So, enough of the self-adulation and on to more interesting matters — the Autism Spokesperson Network consists of a group of Easter Seals individuals from all over the country.

These Easter Seals autism experts and marketing professionals are meeting for the next two days in Chicago. They’ll work together with Easter Seals’ partner, the Autism Society of America (ASA), to create new ways to build interest in autism as a cause and educate the public about autism.

The group will discuss the many treatment options available and how people with autism can make significant progress and lead independent lives. In short, they’ll discuss how there is hope for families living with autism.

Throughout the year, members of the Autism Spokesperson Network will post their observations, ideas and comments about autism services here on the Easter Seals and Autism blog. It’ll be terrific to hear new voices on the blog — and what a relief from the blogging blind boasts!

Blogging about autism

by Beth Finke

I tell people I am the only blind woman in America being paid to moderate a blog. I’m not sure that’s true, but so far no one has challenged me on that statement.

This Thursday I’m one of the presenters at a session called “It’s My Party, and I’ll Blog if I Want To.” That’s just one of many sessions being offered at this year’s Easter Seals Autism Spokesperson Network & Affiliate Marketing Partners Meeting. And then this summer I’m scheduled to do a “Blogging by Ear” session at the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER) International Convention.

So now I’m adding another unsubstantiated claim to my resume: I am the only blind woman in America leading sessions encouraging others to blog.

I have Easter Seals to thank for teaching and encouraging me to learn more about computers and blogging. I became involved with this wonderful organization when I participated in the Technology Opportunities Program (TOP) grant Easter Seals received from the U.S. Department of Commerce. The Interactive Marketing Group at Easter Seals Headquarters used the grant to work with Convio, a software company, to create web content management tools for people who are blind.

Easter Seals recruited blind and visually impaired interns all over the country to work with the software and learn web content management skills.

I was one of those interns. Once my 10 month TOP internship was completed, Easter Seals Headquarters hired me as the Interactive Community Coordinator. What that fancy “Interactive Community Coordinator” title means is that I’m the one moderating the Easter Seals and Autism blog — I read through blog comments on a daily basis and forward your comments to Easter Seals blog authors and information and referral staff.

I use assistive technology to do my work — a computer program called JAWS reads the text on my screen out loud. That’s how I’m able to read your comments to the blog.

If you have any questions about my role as blog moderator or our community guidelines, don’t hesitate to ask. In the meantime, keep your comments, questions and recommendations coming!

A squirrelly love story about autism

by Beth Finke

Tomorrow is Valentine’s Day, and I’m sending a gift now to thank you all for reading and leaving comments on the Easter Seals and Autism blog.

It’s not chocolates, sorry. Not roses, either. Instead, it’s a story. A love story.

The story is written by Matthew Baldwin, a computer programmer from the Seattle area who does freelance writing on the side. He’s a great writer. Lots of people like him. Every month nearly 10,000 people look at his “defective yeti” blog.

Baldwin keeps the names of his wife and toddler son anonymous in the blog, referring to her as “Queen” and to him as “Squirrelly.” Until the little boy turned three, that is. Now he’s called “Squiggle.” She, of course, remains Queen.

Baldwin has kept this personal blog for years, covering politics and music and movies and most of all, things he just finds odd or humorous.

And then, Squiggle the Squirrelly was diagnosed with Autism Spectrum Disorder (ASD). So now Baldwin blogs about autism, too.

Here’s one example from a recent post:

Raising an autistic child is frequently frustrating and often exhausting, but it also brings its own rewards. In many respects it is like watching a foreign movie: sometimes you feel like you don’t have enough context to understand everything that is happening, but you appreciate that you are seeing a story completely different from the conventional narrative.

Squiggle is different than typical kids, but that’s okay. If he weren’t, he wouldn’t be the son we love so much.

That gives you an idea of how this guy thinks. And writes. The love story I’m sending you takes place the day Squiggle was diagnosed. We all know that day can be a dark one for parents, so you’re going to have to trust me on this one — the story of Squiggle’s diagnosis is sweet, lovely, and… well… a perfect Valentine’s Day gift. Enjoy.

J-Mac makes points for autism

by Beth Finke

Just found out that the theme for the Valentine’s Day Larry King Live TV show this Thursday is The heartbreak… and hope of autism. Guests slated for the show that night include Holly Robinson Peete, Doug Flutie, Toni Braxton and Jason “J-Mac” McElwain.

If you ask me, McElwain is sure to be the biggest star of the show. J-Mac has autism, and he received national attention after scoring 20 points in the last four minutes of his first-ever appearance in a high school basketball game. Six of his baskets were three-point shots.

If you look at the video of his performance you’ll see the crowd go wild just to see J-Mac enter the game. And then when he starts scoring — wowee! After the game, the crowd rushes down to carry J-Mac on their shoulders in triumph. It’s a triumph for the team, and a triumph for inclusion.

An ESPN story describes J-Mac’s achievement like this:

“There are thousands of families across the country, getting a diagnosis of autism for their 3-year-old; they look at Jason and have tears in their eyes,” said Dr. Susan Hyman, an associate professor for pediatrics at the University of Rochester’s Strong Center for Developmental Disabilities. “Because the image they have in their minds isn’t of some strapping young teenager making baskets from half court.”

“The hope and the promise this provides — it’s priceless.”

Larry King Live airs nightly on CNN at 9 p.m. ET. The CNN Web site encourages viewers to email them with questions about autism before the show.

Bright future ahead for autism therapeutic school

by Maurice Snell

I hope everyone is enjoying the new year so far. 2008 is a year with many major events imminent at Easter Seals Metropolitan Chicago. That’s where I work.

One major event that is scheduled to happen this year is the opening of the Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research. Phase I of the project is expected to be completed this fall, and the construction gets better and better each day.

An artist’s rendition of completed Easter Seals Metropolitan Chicago’s New Therapeutic School and Center for Autism Research.

When I drive by the campus of the new building on my way to work every morning, I don’t just see one ordinary building in one location. I see the entire future of the completed work ahead of me. This campus will have it all: state-of-the-art sensory rooms, therapy rooms, classrooms of larger size, and extensive research by the professionals from the University of Illinois at Chicago.

The new school will be a haven for many underprivileged children and families. Easter Seals is ready for a positive change for those with autism. With that being said, I believe Easter Seals will be great in 2008!

Book review: Jenny McCarthy’s “Louder Than Words”

by Beth Finke

Jenny McCarthy’s book Louder Than Words: A Mother’s Journey in Healing Autism is about her son Evan, who was diagnosed with Autism Spectrum Disorder (ASD) in 2005. When the book came out last year, McCarthy promoted it on Oprah. And on ABC’s 20/20. And on Good Morning America. And on The View. And on Larry King Live.

There are plenty of good books about autism out there. This is not one of them.

The best thing I can say about McCarthy’s book is this: it sure brought a lot of attention to autism. This past Super Bowl weekend, in fact, the HollyRod Foundation awarded McCarthy the 2008 Trailblazer Award. The HollyRod Foundation was founded in 1997 by NFL quarterback Rodney Peete and actress Holly Robinson Peete. Their Trailblazer Award honors the achievements of individuals for their efforts to raise autism awareness.

It comes as no surprise that Jenny McCarthy won that award. I hope she isn’t holding her breath for any prizes in literature, though.