I was wowed

by Beth Finke

What a pleasure it is to introduce guest blogger Jeanne Sowa, Senior Vice President of Marketing & Corporate Relations, here at Easter Seals Headquarters.

I was wowed

By Jeanne Sowa

I just came back from the CENTURY 21 International Convention in Orlando. CENTURY 21 has displayed unwavering commitment and dedication to Easter Seals for nearly three decades. Throughout the years, the CENTURY 21 System’s efforts have raised more than $91 million for Easter Seals.

The convention’s opening session featured Scottie Gaither, Easter Seals 2008 National Child Representative, who received early intervention services from Easter Seals for autism. Scottie and his mom Barbara did a fantastic job on stage, telling an audience of 4,000 brokers and agents about the importance of early intervention services and how Easter Seals has made an enormous difference in Scottie’s development. They received a standing ovation!

Ronan Tynan, a singer with the Irish Tenors, was also on the program. Tynan is a champion disabled athlete, a physician, and a great singer!

Tynan was born with a lower limb disability and he had both legs amputated at age 20.  Within a year after the operation, he competed in the Paralympic Games in track and field and set 14 world records! Talk about determination and drive. And he just about had everyone in tears with his beautiful rendition of “God Bless America.”

If you’ve been to a baseball game, or sporting event, you’ve probably heard Tynan sing!

Nothing like celebrating successes to start the weekend off right!

Autism day after day

by Kathy Patrick

In my last blog post, I was wondering whether and how to tell my son Adam about his unique special needs. Who would’ve guessed a rock opera could help get the conversation started?

Here’s the story: last Thursday, the rock opera Day After Day came to town, and when I asked Adam if he wanted to go with me to see it, he said yes.

Day After Day is a rock opera about the daily struggles the families of children with autism face. The show was originally performed in 2004, and Parents of Autistic Children (POAC) helped fund a new, expanded production this year.

It wasn’t until after Adam agreed to go to the show with me that he asked what it was about. When I told him, I slipped in the “yaw know, you have some of those issues, too.” He didn’t ask any more questions.

During the performance, I could tell that Adam was intrigued by the representation of the kids with autism in the musical. Of course, he was also interested in the number of people at the theatre — and the light effects!

Some highlights:

• Just Call Me Dad is a number about one child’s father looking for a typical father-son relationship. 
• My Mom features one of “the other three kids” who longs for her mother. The mother is so overwhelmed with the needs of her son that she neglects her daughters’ emotional needs.

You can hear musical selections yourself at the Day After Day MySpace page.

I thought the show was great — high energy tunes, meaningful lyrics and young people keenly portraying the struggles and triumphs of too many families today.

P.L.A.Y. in Wisconsin

by Bob Glowacki

Many of you have heard of Dr. Richard Solomon. Dr. Solomon is a board certified developmental pediatrician who specializes in autism. He has over 15 years experience working with families and children with autism. Currently, he has a clinic in Ann Arbor, Mich. where he provides diagnostic services and intervention through his specialized program called The P.L.A.Y. (Play and Language for Autistic Youngsters) Project.
 
P.L.A.Y. is a parent coaching, family empowerment model that’s provided in the child’s home. Parents are coached to “play” in a way that draws interactions from their child. Dr. Solomon developed this program to address the growing need for a cost-effective relationship-based intervention.

Right now, the state of Wisconsin offers several ABA (applied behavior analysis) programs but few relationship-based programs. In October 2006, Carrie Cianciola, Early Intervention Services Director, and Amanda Dobberstein, Speech Pathologist and P.L.A.Y. consultant, attended Dr. Solomon’s intense, four-day training. Our staff returned to Wisconsin excited to implement techniques and train parents!

Since attending the training, Amanda has been using The P.L.A.Y. Project model with families and seen its benefits first hand. Parents are reporting that their children now go to them for affection and requests to play.

So, you can imagine how excited Easter Seals Southeast Wisconsin is to be hosting Dr. Solomon this weekend — he will present his two-day workshop for parents and professionals about The P.L.A.Y. Project on March 7-8 in Waukesha, a Milwaukee suburb.

If you’ve never seen Dr. Solomon present and you can make it to the Milwaukee area this weekend, please come and visit!

For more information, contact Carrie Cianciola at 414-449-4444 ext. 212, or download the registration flyer (pdf).

Autism gets wired

by Lisa Tate

This month’s cover of Wired Magazine draws readers in by promising “The Truth About Autism.” The magazine describes the brains of people living with autism as neurologically different vs. neurologically disordered. While a bit scientific, the article does a great job of highlighting the unique abilities of individuals with autism.

It opens with a story about 27-year-old Amanda Baggs and the popularity of her
YouTube video In My Language.

 
Later, the magazine summarizes the research of Dr. Leo Mottron, famous for his work with a man known in the literature as “E.C.” Mottron attributes E.C.’s savant skills in 3-D drawing to the “atypicalities in perception of the brains of people living with autism.”

In other research, Dr.Mottron noticed that one of his patients, Michelle Dawson, had a
unique ability to find “tiny errors and weak links in logic.” He invited her to collaborate with his research team, and she assisted with scientific analysis last summer. Dawson was the lead author in a published study titled “The Level and Nature of Autistic Intelligence” in the peer-reviewed journal Psychological Science.
 
It’s great to see autism — and these people who live and work with autism — getting national attention in a magazine like Wired!

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!