Kim Peek, Rain Man, brought autism into our consciousness

by Patricia Wright

Kim Peek died on December 19th. I was lucky enough to meet Mr. Peek once at an autism conference. He shared his story with the hundreds of attendees, and we left that session with incredible respect for how his gifted mind consumed information. We also felt like we had a little brush with fame, given his role in making such a famous movie.

Yes, that’s right – it was Kim Peek who inspired writer Barry Morrow, the author of Rain Man. The 1988 movie won four Academy Awards and helped put the word “autism” into everyday vocabulary.

Fran Peek said his son met Morrow at a convention in the early 1980s and the writer was taken with Peek’s knack for retaining everything he heard. Morrow wrote the script, and the movie went on to win an Oscar for Dustin Hoffman, whose repetitive rants about being an excellent driver and what time People’s Court would start were a hit with moviegoers.

Although the character was technically fictional, Fran Peek said his son was every bit as amazing as Hoffman’s portrayal of him. Kim’s true character showed when he toured the world, helping dispel misconceptions about mental disabilities. Rain Man was the first time many heard the word autism, and although media may not always portray individuals with autism accurately, media attention certainly contributes to awareness. Thanks to Mr. Peek and Mr. Hoffman, autism entered into the vocabulary of many. Mr. Peek was an amazing man, and one whose story brought the world of autism to the consciousness of the general public.

Christmas skating special includes message about Easter Seals

by Beth Finke

On Christmas Day this year, Amway Global and Disson Skating will present a special competition on NBC that adds a twist to standard figure skating. Amway Global Improv-Ice challenges figure skating superstars by having them skate on the fly to music they have not yet heard. The Amway Global Improv-Ice nationally televised special will air on Christmas Day from 3 to 5 p.m. ET on NBC and will be hosted by figure skating greats Kristi Yamaguchi and Brian Boitano. Olympic and World Champion figure skaters Nancy Kerrigan, Kurt Browning and Sasha Cohen will be among the stars doing the improvisational skating.

As a national partner of Easter Seals, and through their One by One campaign, Amway Global has included Easter Seals in television spots that will air during the Improv-Ice show on Friday. Since 1983, Amway Global and Amway Global Independent Business Owners have partnered with Easter Seals to support services to children and adults with autism and other disabilities. During this time, nearly $30 million has been contributed by Amway Global and Amway Global Independent Business Owners.

To help promote Friday’s show, figure skater Michael Weiss will appear on NBC’s Today Show and Kurt Browning will participate in a satellite radio tour, both on Christmas morning. The holiday show is all about the improvisation, and we at Easter Seals hope you’ll sit back and relax for a couple hours this Friday to enjoy this great entertainment. Merry Christmas!

Bubble wrap and tickles: playtime with autism

by Beth Finke

When our son Gus was little, the friends and family members we’d visit over the holidays weren’t always sure how to engage him in play. Gus liked to be touched, for example, but you had to approach and engage with him slowly.

If you’ll be visiting friends or families who have children with autism the next couple weeks, the Autism Society of America offers a list of suggestions for parents about engaging children in play, taken from “The Child With Autism” series by Kathy Labosh. Maybe a few of their tips (popping bubble wrap bubbles or using scarves to tickle, for example) will give you ideas of ways to engage the children with autism you’ll be visiting.

Tips of the Day — Playtime

• Cover the kitchen table with protective paper and let your child finger paint.
• Let your child paint with shaving cream in the bathtub.
• Bury small prizes in a box of dried beans or rice for your child to find.
• Fill an empty coffee can with dried beans for your child to shake.
• Hide trinkets inside a ball of clay or playdough for your child to find.
• Fill a dishpan with warm water and dishwashing bubbles and place outside; let your child splash and wash waterproof toys.
• To engage your child in play, walk toward her with your fingers wiggling to tickle her; chase her around the house until you catch her and tickle her.
• Make an art project with glitter and glue.
• Let your child pop the bubbles on bubble wrap using his hands, fingers and feet.
• Roll and bounce your child on a large exercise ball.
• Wrap your child in a blanket and have two people swing him.
• Use felt boards to illustrate stories; let your child place the people in the scene.
• To help your child prepare for activity transitions, warn him five to ten minutes before you change activities.
• To tickle your child, run scarves through her hands and around her neck.
• Let your child wave lightweight scarves; he will enjoy seeing the colors and fabrics move.
• Let your child show you what he wants by offering your hand and letting him take you where he wants to go.

Most of all … have fun!

Promoting Evidence-Base Practice

by Kathy Patrick

There’s a lot of “word on the street” about evidence-based practice and autism. Clearly this is an important topic, as people with autism should have access to effective services and supports. Peer-reviewed, published research informs evidence-based practice. Problem is, most providers in the autism field don’t devote time (or have access) to reading peer-reviewed research articles. Until now!

I am now participating in our Easter Seals Autism Research Review Group. The autism research review group meets approximately every two months to review a research article related to the topic of autism. The idea is to improve our research review skills and increase our ability to apply evidence-based practice into our daily work. Any Easter Seals staff member can register — to participate, members need to read the article before signing in on the call and make an attempt at completing the journal review sheet afterwards.

During the call we all answer questions related to the research — the purpose, subjects, setting, type of research, results, limitations, how to apply the research to our job, and so on. It’s an extremely supportive setting.

We had a pretty interesting discussion during our group call last week. We reviewed an article about an intervention used at a facility in England. The intervention had been used to address some significant challenging behaviors of a young man with autism. While it seems that the intervention produced noteworthy results, many of us on the call felt like the intervention was so far out of the box that it probably would not be acceptable in our work settings. The great thing about this group is that we all get a chance to talk about how the research relates to OUR work setting, and how we can apply what we are learning from the research into our daily work.

So, Easter Seals is helping to make the “word on the street” real for those of us in the field. There’s a lot of evidence about what works with people with autism, but until the field sorts out a way to translate this valuable research to the real world, people with autism won’t benefit from this vast knowledge.

Book review: Lisa Ackerson Lieberman’s “A ‘Stranger’ Among Us”

by Patricia Wright

Parents of children with autism often find themselves needing to hire a professional to work in their home and provide direct support for their child. Hiring and managing in-home care requires significant skills. Fortunately Lisa Ackerson Lieberman has developed a wonderful resource to guide parents in this process.

Ms. Lieberman has expertise as a social worker, plus she is a mom to a child with autism and has a partner who has a progressive physical disability. This multi-faceted perspective allows for meaningful content in all fourteen chapters and 191 pages of A Stranger Among Us: Hiring In-Home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences

Ms. Lieberman provides concrete examples and personal anecdotes to help make this book both practical and enjoyable. The book follows a fairly linear framework, starting with making a decision to hire care and choosing what type, finding and interviewing candidates, training and supervision and finally terminating an employee or ending the professional relationship.

I especially liked a chapter where Ms. Lieberman encourages parents to include their child in the hiring process. Every child needs to learn to make choices and direct their own life. By involving a child with autism in the hiring process (in an age and developmentally appropriate manner), that child begins to develop self-advocacy and self determination. Ms. Lieberman’s inclusion of this chapter is demonstrative of her desire to ensure that her own son with autism develops successfully. This includes meeting her son’s needs via appropriate care provision and ensuring her son is able to access important learning opportunities.

Ms. Lieberman has produced a great resource for families. For anyone faced with tough decisions — like why and how to provide in-home care for their family member with autism — A “Stranger” Among Us is a must-buy.

Holiday tips from autism experts

by Matt McAlear

When a local freelance writer named Dana Young decided to write a story offering holiday tips and advice to parents of kids with autism and other disabilities, she knew one place she could come to find experts: right here at Easter Seals Bay Area! Her finished story is called Special Joys, Special Challenges, and it’s in this month’s issue of Bay Area Parent. Not only does the story quote our clinical supervisor Michelle Ficcaglia, but it also quotes … me!

Matthew McAlear, the vice president and chief program officer for Easter Seals Bay Area, suggests using role-play to give children practice ahead of time in dealing with new social situations. He also suggests they work together with parents to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.

In the story, Michelle encourages parents to have their kids help plan for the trip themselves.

“Counting down a trip by marking off days on a calendar with your child is often very helpful,” says Michelle Ficcaglia, Ph.D., the clinical supervisor for the East Bay Autism Project. “Additionally, you can try to prepare your child for a plane, car or train ride by reading books about the mode of travel you will be using.”

I was very pleased with the published story. It features many other tips and ideas from Michelle and me, plus advice from other experts, too. As the author so wisely puts it: “Celebrating the season with special-needs children has its own set of challenges – as well as unique joys.”

Toys to buy for kids with autism

by Beth Finke

Our son Gus doesn’t talk. He shows a keen interest in very few things, but he sure knows what he likes — handheld tape recorders, for example. He takes the recorder in one hand, places it near his ear, transfers it to the other hand, places it near that ear, transfers it to the other hand, places it near that ear … you get the picture.

While Gus was growing up, we tried our best to find new toys for him to explore — we knew it was good for him to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise.
He’d usually touch his new gift, cast it aside, and search for … you guessed it — his handheld tape recorder.

I remember thinking back then that maybe, just maybe, if there was somewhere I could go for a list of toys especially good for kids with autism and other disabilities, I’d find the magic item, the one thing Gus might like as much as he likes his tape recorder. And now, I found that list!

A post at The Autism News touts The Toys “R” Us Toy Guide for Differently-Abled Kids, a free toy-selection guide for parents and friends of children with disabilities. From a press release:

The easy-to-use resource, released annually, features specially selected toys that promote the development of children with physical and cognitive disabilities. Items featured in the Guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills. Symbols are assigned to each toy so parents can easily identify items that are best suited for their child’s needs.

This year, the Guide also introduces a new, easy-to-use toy-finder index that lists toys in separate skill-building categories. This added feature allows users to quickly find and select toys that are appropriate for a child’s specific needs and interests.

Happy shopping!

New Jersey continues to step up!

by Kathy Patrick

On Monday night I attended a meeting of the New Jersey Governor’s Council on Medical Research and Treatment for Autism. The director reviewed the Basic Science and Clinical Research grant initiative, and I was delighted to learn that our own Patricia Wright, National Director of Autism Services at Easter Seals, was one of the 13 panelists who had reviewed the proposals.

Patricia’s involvement was no surprise — she is very well qualified! I was just so pleased to see her name and the Easter Seals affiliation among the national “big cheeses” in autism research. Other reviewers came from the University of California-Davis, Baylor College of Medicine, the University of Pennsylvania, Autism Speaks, the Welcome Centre for Human Genetics, the University of Michigan, New York University’s Langone Medical Center, Vanderbilt University, and the Kennedy Krieger Institute, just to name a few!

At Monday night’s meeting, the director discussed the review and rating process. After that, the council voted to proceed with the recommendations of the review panelists and the Study Section panel. I’d say New Jersey is definitely stepping into the mix, doing their best to fund state initiatives in research and service delivery. I don’t know of any other state that has dedicated so much money on a state level.

And hey, it was so lovely to virtually cross paths with my colleague Patricia Wright at a late night meeting in New Jersey. All the time I was there, hearing about her participation in reviewing those proposals, she was enjoying the weather back at Easter Seals headquarters in snowy Chicago!

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!

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!