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Dancing with the stars: Ozzie Guillen and The Naturals

by Maurice Snell

It’s that time of the year once again, ladies and gentlemen. The people are out doing Christmas shopping, the people are decorating homes on the outside and inside, and many spend time with family and friends. This past Saturday was no exception, as the annual Easter Seals Festival of Trees Holiday Gala took place at Chicago’s Fairmont Hotel.

The evening started out with White
Sox manager Ozzie Guillen, whom we are fortunate to have on our board of directors at Easter Seals Metropolitan Chicago (ESMC). Ever since day one, Ozzie has been a great role model for individuals living with autism (including me) and he has a big heart towards the children at Easter Seals.

Which brings me to this: one of this year’s honorees was Terry Hancock from the Local Teamsters union. Terry has a son with autism, and he and his family are huge supporters of Easter Seals. Other honorees included the Martin family. Peter and Margaret Martin have a son named Noah who currently attends the Therapeutic School and Center for Autism Research. Their daughter Hanna also has autism. The big news of the evening was Ozzie offering the Martin family to accompany him and other Sox players for a week at Spring Training in Arizona in 2010. He will also allow Noah to be the guest manager for a day. He is paying for their airline tickets, hotel and other accommodations for the time they are at spring training. How awesome is that?

Ozzie talked about Easter Seals in a story in the sports section of the Chicago Tribune:

“Guillen was delighted to be involved in the charity gala, in which White Sox Charities made the largest contribution to the ESMC’s new Therapeutic School and Center for Autism Research.

“I think these people, since the first day I walked into their facilities, show me how much they care, how much they care about the community,” Guillen said. “They worked very, they’re very tied in together. This is my second year. I think it’s a great cause. We do a lot of things for the kids.”

“It was very quick for me to fall in love with this organization.”

The evening closed out in great style! Who would close out the evening in great style other than a performance from my band The Naturals! Terry Bracey and yours truly were the highlight entertainment of the gala. Everyone at Metropolitan Chicago had the opportunity to get up and dance to the music, and what makes it extra special was this: Ozzie got on the dance floor also!

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Dignity and justice for all

by Patricia Wright

Dignity and Justice for All. This is the theme for this year’s International Day of Persons with Disabilities. Each year, December 3rd is the day that the United Nations promotes an understanding of disability issues and mobilizes support for the dignity, rights and well-being of persons with disabilities. The benefits that result from integrating persons with disabilities in every aspect of political, social, economic and cultural life are countless — the U.N. wants to make more people aware of those benefits.

The theme of the Day is based on the goal of full and equal enjoyment of human rights and participation in society by persons with disabilities, and the U.N. suggests four different ways to contribute to this goal:

  • Involve
  • Organize
  • Celebrate
  • Take action

There is so much to do to ensure individuals with autism have the opportunity for dignity and justice. A life of dignity includes employment — a life that many individuals with autism have yet to achieve. Justice ensures that all individuals with autism have access to adequate healthcare — a goal that we have yet to achieve here in the United States. Disparities exist in so many areas for individuals with autism.

Fortunately we have pockets of success, people living with dignity who we can use as examples. Success stories like Joe Steffy, the sole proprietor of Poppin Joe’s Kettle Korn. Mr. Steffy is a person with autism, a business owner and a man who’s life is clearly dignified. The success of Mr. Steffy and Poppin Joe’s is an example of what can happen when people get involved, organize, celebrate and take action!

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Why bother learning penmanship?

by Beth Finke

I was 26 years old when I lost my sight. Authorities set me up at a residential facility to learn how to use a white cane, read Braille, that sort of thing. All the students there were adults, all of us had recently lost our sight.

Well, almost all of us. There were two 18-year-olds there who had been blind their entire lives. They already knew Braille, and they were well trained in orientation and mobility. One thing they’d never learned in school? How to write with a pen. These two young women wanted to go to college, and in order to live independently, write out rent checks and so on, they needed to learn penmanship.

This past Monday a post on a blog called ParentDish called attention to a report in the latest edition of the journal Neurology that shows a high percentage of children with autism struggle when it comes to putting pen to paper. From the ParentDish blog post:

Barbara Wagner enrolled her 14-year-old son Austin in the study conducted by by the Kennedy Krieger Institute in Baltimore. She said she knew there was something different about the way he wrote.

Homework assignments that involved writing sometimes took up to three hours to complete, she said on National Public Radio.

“He doesn’t actually write they way you or I would write,” she told NPR. “He draws his letters. It was almost painful to watch.”

The blog post was quick to point out that plenty of children with autism have fine penmanship, but parents of children who struggle with handwriting might find this study as a valuable tool when requesting that schools let their children with autism use a keyboard instead of forcing them to write by hand.

For those that do, Wagner said, the study provides a valuable tool. Parents sometimes find themselves in conflict with schools when they request keyboard writing and do not see penmanship as a priority.

When educators disagree, Wagner told ABC News, “I think it’s important to have something to back you up.”

It all makes me wonder. How important is handwriting these days anyway? Those 18-year-olds I met at the facility for the blind decades ago struggled so much to learn handwriting — today, they’d most likely pay their bills online. I can see the importance of learning to sign your name in ink, but beyond that — really — is penmanship necessary anymore?

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Still thankful for autism

by Barbara Gaither

It has been two years since we started our amazing journey with Scottie as the Easter
Seals 2008 National Child Representative. Time really gets away from us, but we frequently talk about the trips that we took and the amazing opportunities we had to meet and speak to so many folks about what Easter Seals and autism have meant in our lives. We occasionally still get a chance to speak at some Easter Seals events, and it is always an honor.

So last week, as we enjoyed another Thanksgiving Day together as a family, I was thankful for my busy family, our health and all the help, love, hope and opportunity that Easter Seals brought into our lives. In that spirit, and as we enter this 2009 holiday season, the Easter Seals and Autism blog is running a post I wrote for Thanksgiving a few years back. And yes, I am still thankful for autism.


What I am thankful for
by Barbara Gaither

Scottie GaitherThis time of year, I find myself reflecting on what I am most thankful for. I have so many things in my life that have truly blessed me, but one of the most amazing blessings is having an autistic son.

Now, I can’t say that I’ve always felt that way.

When Scottie was first diagnosed with autism, I was devastated. He was our last child and our first and only son. We pinned so many hopes and dreams on him when he was born, and with that diagnosis — those dreams seemed to be crashing down one by one.

As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis. Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted — and by watching him grow and learn, I have learned so very much.

It’s simply amazing. Sometimes, I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could.

Being selected as the Easter Seals 2008 National Child Representative not only gives a lot more people an opportunity to know and love this wonderful little boy, but it gives us
— as a family — a chance to give back. We can give back to Easter Seals as an organization because they have given us more than words could ever express.
It also gives us a chance to offer hope to other families facing the darkness of autism.

I hope that somehow, by seeing and hearing our story, there will again be light.

So, as we gather to celebrate this Thanksgiving, I will give thanks for Scottie and his sisters, Sarah and Carly, as well as my husband Shannon and all of our family, including our wonderful Easter Seals family.

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

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Traveling with autism

by Beth Finke

My husband Mike and I are heading north this week to spend Thanksgiving with our son. Gus is 23 years old now, and we look forward to Thanksgiving dinner with him and his three roommates in their Wisconsin group home.

When Gus still lived at home with us, our family often spent Thanksgiving Day on the road. Back then there wasn’t much guidance, either in newspaper articles or from books, about ways to make it easier to travel with a special needs child. That’s why I was so happy to find an article highlighting tours and travel agencies catering to the needs of families with autism in the travel section of a Sunday New York Times last year.

While most people look forward to a vacation with its new vistas, surroundings, food and routines, many families traveling with children with autism face a daunting task of providing some well-established routines to help their child feel secure. Long lines, masses of travelers, new schedules for eating and sleeping can throw off their child and make the trip less than relaxing.

The article chronicles families staying at hotels that have made accommodations for children with autism. It also points out that Americans with autism are vacationing in record numbers.

Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation.

Congrats to the hotels who are wise enough to go out of their way to educate themselves and their staff about autism. Goodness knows our families need vacations as much — or more — as any other family does!

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Inspired by families living with autism

by Bob Glowacki

A lot of people left comments to a New York Times article called Going to Battle Against Autism, and I found myself touched by what those comments said about the dedication of families with autism. I was especially moved by the stories of two parents who were not only stretched physically and emotionally, but also facing an uncertain future for their child.

I am the father of two wonderful kids, Molly and Tommy, and I know the worries all parents have, the dreams we have for our children and the fearful moments. Will they fit in with the other kids at school? Are they getting good grades? Am I bringing them up right? I heard a good quote recently, that the good parents are always asking themselves, “Am I doing the right thing for my child?”

I’m not sure how to conclude this blog post except to say I have tremendous respect for those families living with autism. I admire their strength and dedication. Their love for their children is amazing. When families pull together like this it is truly heroic. When I see families like this at Easter Seals Southeast Wisconsin, it makes me more committed to providing services that will lighten the load on such tremendously caring parents and loved ones.

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Rhode Island governor signs autism legislation

by Denise Rozell

This week, following state legislative passage, Rhode Island Governor Donald Carcieri signed the Rhode Island Autism Spectrum Disorder Evaluation and Treatment Act into law. You can view the Act here (PDF).

Easter Seals affiliates in other states are hoping to help pass this type of legislation so that people with autism can benefit from our expertise in diagnosis and screening, and when necessary, from our autism services.

The Act creates a special governmental joint venture between the department of health, the department of elementary and secondary education, and the department of human services to promote public awareness of and the use of early intervention services in regard to autism spectrum disorder.

The legislature specifically wanted to reinforce screening for children who are uninsured and/or underinsured through the Rhode Island department of health with assistance from experts, service providers and parents and to provide appropriate testing and screening models and to create a case management system to properly catalogue such diagnosis.

The department of education will develop a continuing education certificate in autism spectrum disorders at Rhode Island College.

A number of states are looking at similar legislation in their upcoming sessions, beginning in January, to promote awareness, screening and diagnosis, and professional development.

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Accessing autism services: why a label matters

by Patricia Wright

Describing someone as having autism tells you a bit about that person. But really … what can you tell from that label? Some people with autism require significant support throughout their lives. Others with ASD move through their daily lives independently.

Currently there are three categorical labels used in diagnostics:

  • Autistic Disorder
  • Asperger Syndrome
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS).

The diagnosis of Asperger Syndrome requires an individual to have an I.Q. at or above the typical level and ensures that they developed language within the typical developmental time-frame. A recent article in the New York Times reported Asperger Syndrome may be changing with the Diagnostic and Statistic Manual of Mental Disorders (DSM) scheduled for release in 2012. Why is this important? Because a label is what provides access to services in our society.

Social service agencies limit access to services via labels. Many people with the Asperger label are unable to access services and supports. Many social service agencies limit their support to people with Autistic Disorder or to those with a co-occurring intellectual disability. A person diagnosed with Asperger Syndrome would not qualify.

Current assessments cannot accurately discern the difference between Asperger’s and the other two labels (Autistic and PDD-NOS). If the assessment cannot accurately discern the difference, then how good is the label? And if the label is not accurate, then should society be using the label to limit access to services?

The new DSM is reported to use the term Autism Spectrum Disorder and then utilize a severity scale within the diagnosis. Ideally the use of the severity scale will allow each person to be assessed for their unique areas of strength and areas of need. Services and supports can be individualized and person-centered. Individuals may then get the services and supports needed to experience success in life. This should be the purpose of a label.

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Language and labels — what’s the big deal?

by Patricia Wright

Language and labels are powerful. They convey information, inform society and suggest a particular perspective. Labels that are used to describe individuals with disabilities, when used in other contexts, are often derogatory. Pierre Lellouche, French minister to Europe, did just this when describing the British Conservative Party in an interview with The Guardian.

They have one line and they just repeat one line. It is a very bizarre sense of autism.

If we remember European history we learned back in high school, we know that when the French talk about the British (or vice versa) it is likely to be disparaging. But did France’s Europe Minister need to include a disability label to make his point? I don’t think so.

Individuals with disabilities experience enough barriers because of societal perceptions. Using disability labels to describe the questionable behaviors of politicians just contributes to these barriers. Let’s keep the use of disability labels out of name-calling.

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Are autism service dogs smart?

by Beth Finke

A story in last Sunday’s New York Times ponders whether service dogs help humans because they are smart, or simply because the rigorous training they go through makes them want to please the person on the other end of the leash.

The matter of what exactly goes on in the mind of a dog is a tricky one, and until recently much of the research on canine intelligence has been met with large doses of skepticism. But over the last several years a growing body of evidence, culled from small scientific studies of dogs’ abilities to do things like detect cancer or seizures, solve complex problems (complex for a dog, anyway), and learn language suggests that they may know more than we thought they did.

At the risk of sounding unsophisticated, I have to ask: who cares why our service dogs help us? I’m just grateful they do! And I’m sure Michelle O’Neil, the author of a blog at Bark Magazine, feels the same way. O’Neil’s daughter Riley has autism, and the Bark blog follows the two of them as they train with Jingle, Riley’s new autism service dog.

Day 3: Today we got into the meaty stuff. Behavior disruption! This is the whole point of having a service dog for Riley, to help her with the meltdowns. Eventually, hopefully, Jingle will be able to redirect Riley before the escalation occurs. Today, a 4 Paws staff member indicated she would be role-playing a child crying (which sent Riley running from the room covering her ears before the scene even unfolded). The dogs are taught to nuzzle, to put their head in the child’s lap, or to go “over,” which means putting their whole body across the child’s lap for deep pressure.

Watch Riley meeting Jingle on YouTube and tell me if you think Jingle does her work because she’s smart, or because she’s obedient. And … do you think it matters?

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