Early intervention: a wise investment

by Erin Rogers

Easter Seals Peoria-Bloomington was mentioned in the Journal Star earlier this month. The article, “In the Spotlight: Early Intervention Program at Risk Again,” was written by Sue Yoder, chair, Easter Seals Peoria-Bloomington’s Board of Directors, and discussed the importance of early intervention services and why they should be a priority for state and federal policymakers. In the article she gave terrific reasons why early intervention is a worthwhile investment:

• One in every 110 children is diagnosed with some form of autism. For boys it’s one in every 70. That’s a new diagnosis every 20 minutes in the U.S.
• The average age for children to receive an autism diagnoses is 4 1/2 years, but it is possible to diagnose children as early as the age of 2. Earlier detection gives children with developmental needs a critical window of opportunity and access to early intervention and services.
• Some 25 percent of American children under the age of 5 are at risk for developmental delays or behavioral problems, yet 1.5 million at-risk children go unidentified every year.
• Last year, 14 percent of young children had a special health need, but only 3 percent received needed services.

Sue ended her piece by encouraging readers to add a candidate’s position on full funding for early intervention to their priority checklist as the next election cycle begins. That’s good advice for all of us as we advocate for critical services for children living with autism and other delays and disabilities.

Raising Superman

by Beth Finke

Our office was all atwitter last week — Easter Seals Headquarters is located in the Willis Tower (formerly known as the Sears Tower) in Chicago, and last week they were filming the new Superman movie, Man of Steel on the 25th floor. Right above us! Cosmic Book News explains, “the Board Of Trade Building will serve as exterior, with Willis Tower as interior for the Daily Planet.”

What a perfect segue to a book called Raising Superman: Autism 101. The book was written by Howard L. Rogers, the father of six children. Twenty years ago his oldest son was diagnosed with “one of the worst cases of autism their doctors and specialists had ever seen,” and Rogers says he wrote this book to help parents fight their own personal autism battles. His son’s severe autism and mental retardation caused continuous issues, problems and situations in his life that were unlike anything his family had ever dealt with before, and he says he felt that “few if any people on the planet had any idea what we were faced with on a daily basis.” He explains the title, Raising Superman, on his web site:

We needed to become “Super Advocates” to address all of our son’s “super special needs.” In addition, over the years we learned that although our son was our special superman, we were not. We had limits to what we could deal with emotionally, spiritually and financially. He continually challenged the limits of what we were capable of, making the need for these secrets, solutions, strategies and shortcuts even more vital for our family to survive. Hence the title of “RAISING SUPERMAN!” as he’s our special little superman and we’re his super advocates!

Back here at Wilis Tower, Clark Kent must have been working hard to advocate for good in his Daily Planet office upstairs last week — there sure was a lot of noise coming through the ceiling! We’re all wondering if we’ll be able to figure out what they were filming when, but that’llhave have to wait until next year, when the movie comes out.

Portraits in the park!

by Beth Finke

I love this idea! Project Onward, a program here in Chicago that supports the creative growth of visual artists with autism and other developmental disabilities, is offering portrait sessions on-site at Millennium Park on weekdays from 10:30 am to 3:30pm. Portrait sittings take about half an hour, and they’re promoted as “a great way to obtain cool and affordable original art.” While it’s true the artwork is affordable (Project Onward artists create the portraits for only $15), the way I look at it, the truly priceless part of the whole experience is the way the sittings give folks a chance to get to know these artists and to support the amazing work they do.

The portrait project is set up in a lovely space inside Millennium Park: lots of Adirondack chairs for visitors to sit in, plenty of space for the artists to work — you couldn’t ask for a more lovely setting. Explore Chicago (the city’s official tourism site) describes all the things Project Onward provides for artists with autism and other developmental disabilities:

Located in the historic Chicago Cultural Center, Project Onward provides workspace, art materials, professional guidance, and opportunities for exhibition and sales to artists who have exceptional talents but face challenges ranging from autism to mental illness.

Artists from Project Onward will be creating portraits at Millennium park on a first come, first served basis until Thursday, September 15. What a terrific idea!

TV’s Parenthood honored for informing viewers about autism

by Kristen Barnfield

The season three premiere of NBC’s Parenthood is just days away. Who is excited to dive back into the lives of the Bravermans? Me! I love this TV show, and I was happy to find out from Disability Scoop that Parenthood is being recognized by a U.S. Centers for Disease Control and Prevention-backed initiative for addressing an important public health issue on television.

The drama, which focuses on one family’s experience raising a boy with Asperger’s syndrome, is one of eight finalists for the Sentinel for Health Awards. The honor goes to television shows with storylines that “inform, educate and motivate viewers to make choices for healthier and safer lives.” In particular, those behind the awards highlighted an episode I wrote about in a post here earlier this year: it’s the episode where Adam and Kristina Braverman struggle with how to tell their son, Max, about his Asperger’s syndrome diagnosis.

Haven’t seen the show yet? Tune in! I’m certain you’ll fall in love with the Bravermans just like I have. The new season starts Tuesday, September 13 at 10:00 p.m., Eastern time. Be sure to watch, and share your thoughts on Max and the Braverman’s with us — we’d love to hear your perspective!

Art exhibit features photography by young woman on the spectrum

by Beth Finke

Today is the opening of An exhibit at the Smithsonian Institute featuring 15 emerging artists (Ages 16-25) with disabilities. A story in the Washington Post explains:

The artists were selected in a juried competition organized by VSA, an affiliate of the Kennedy Center. VSA was formerly known as Very Special Arts. It was founded by Jean Kennedy Smith, the last living sibling of President John F. Kennedy.

When I gave the folks at VSA a call to learn more about the exhibit, they told me that Caitlin Miller, one of the chosen artists, has Asperger Syndrome. From her bio on the Kennedy Center web site:

Miller says that “Because I often struggle to express with words, photojournalism has given me the opportunity to tell a story through a series of photographs.” With a focus on disability studies, Miller’s recent works have included photographic stories about children and adults on the autism spectrum. This series documents the challenges, both internal (biology) and external (cultural and societal forces) of living with a disability.

The exhibition is titled Momentum and will be at the Smithsonian until January 22, 2012. Pretty darn cool.

New Batman story has a character with autism

by Lynn Dudek

It’s 1977 and I’m 8 years old (yes, I’m old). My 13-year-old cousin is running into the house with a prized possession under his arm. I follow him upstairs to his room where he carefully removes a very thin comic and places it in a plastic sleeve. He then puts that precious plastic sleeve into the perfect spot — at least to him. All I saw was a sea of hundreds of comics In milk crates along the entire wall of his bedroom, all BATMAN!

I made the mistake of asking my cousin if I could read one of his books. Very quickly he informed me that I was to never touch his collection. “And they are called comics,” he added. “NOT books.”

So began my introduction to Batman comics. My cousin still has his collection, and I’m still not allowed to touch any of them. I did end up with a few of my own (especially around the time the movies were released) and ya know what? They are enjoyable.

So now, 34 years after making the unthinkable mistake of referring to a comic as a book, I finally see why kids (and a lot of adults) collect these things. I understand that protecting them and putting them in order serves a certain satisfaction. I get why Sheldon on Big Bang Theory has to find the right comic to make his collection complete, and I can still see the thrilled expression on my cousin’s face when he found the exact comic he was desperately hunting for. Then he went for a snack of potato chips and ketchup- but that’s another story!

Now that we’re in 2011, when things of our childhood can be so easily lost, it is so very cool to see that Batman is back with new stories and new characters. And get this — Disability Scoop reports that a new Batman story has a character with autism.

It focuses on Lucas, a boy with autism, whose parents are arguing about whether he should be reading comics. As he crawls into bed, Lucas notices something outside his window. When he checks out the fire escape, Lucas finds himself in the middle of a battle between Batman and supervillain Solomon Grundy.

The Batman story is titled “One Lock, Many Keys” and Disability Scoop says it touches on how Lucas progresses developmentally through his adventure with Batman. I might have to get my hands on this book, I mean, comic. And hey, I’ll call my cousin and tell him about it, too. Maybe then he’ll let me read a comic from his collection!

Anyone can make a difference

by Kristen Barnfield

Last April, as part of the launch of Easter Seals’ Make the First Five Count initiative, I spent a day in New York City with other Easter Seals staff meeting with various national media, editors and reporters to talk about the importance of early intervention for the youngest kids with autism, disabilities and developmental delays.

As part of those visits, we met with two editors from Guideposts Magazine and we started sharing some of our favorite, most inspirational Easter Seals stories. Of course, Palmer Harston was at the top of our list.

Palmer was an Easter Seals National Youth Representative in 2000 and she has an incredible story. We’re so excited she is able to share it in a big way — she’s featured in a four-page article in the September issue of Guideposts magazine. Palmer was only 8 years old when she, her sister Taylor and their mother were in a car accident that changed their lives. Today, Palmer is changing others’ lives.

Her accomplishments are remarkable: graduating from Vanderbilt University, starting a cheerleading team for girls with disabilities in Nashville and spending a year in South Africa (her third trip) working with orphans who have AIDS. And she seemed fearless throughout all these accomplishments, despite her disability.

Following her year in South Africa, Palmer went on to Vanderbilt University’s law school to study international adoption law. She hopes to help eliminate the confusing regulations that can make it difficult to adopt children from some countries. She is currently working on her masters degree in community development and adoption law.

Palmer is putting her educational interests to good personal use, too. Her mom and dad are adopting two young boys from the orphanage where she volunteered. Palmer and her sister are excited to soon be getting two little brothers.

Palmer’s message is important for everyone (people who use wheelchairs, people who have autism, people with any other type of abilities or disabilities): a so-called disability doesn’t have to stop you.

“I knew I could do it … it doesn’t matter if you’re injured or if you’re not,” Palmer says. “That doesn’t stop you from serving others and from loving. Anyone, even in a wheelchair, can make a difference.”

Kansas recognizes strong advocate for people with disabilities

by Jim Leiker

Students and families from Easter Seals Capper Foundation were on hand at a program at the Kansas Museum of History earlier this month to hear Arthur Capper, founder of Easter Seals Capper Foundation, named a notable Kansan.

Kansas is celebrating its 150th birthday by naming 25 notable Kansans, and Arthur Capper made the prestigious list. Capper (1865-1951, was a two-time governor and five-time U.S. senator from Kansas, and he was a strong advocate for people with disabilities.

Gov. Sam Brownback was on hand for the announcement, too, and an article in the Topeka Capital-Journal quotes him:

“As we celebrate our sesquicentennial,” Brownback said, “let us celebrate the people who have been world-changers.”

Amen to that!

Full-spectrum marriage

by Beth Finke

I’m blind, and my husband can see. Mike and I have been married 26 years, so we’ve got that down. I hadn’t given much thought to other disability-related mixed marriages, though, until I read a story about a “full-spectrum marriage” on the Autism Support Network web site.

Kristi Sakai wrote the post. Her husband Nobuo has autism, and the two have been married 17 years. She lists some useful strategies they use to keep aware of and manage each others challenges. I especially like her sense of humor in strategy number three :

3. Provide visual supports to enhance communication.
“What do you want me to do? Draw you a picture?!” YES. We know that visual aids work for children on the spectrum. It also works on spectrum spouses. We’re familiar with grocery lists, but we take it further. After repeated explanations about a specific item only to have my husband return home with the WRONG thing again (bless his heart!), we have revised our communication system. First, I buy the item and show it to him so he has a visual reference. Second, I draw a very simple map of its location in the store. While this may sound tedious, as we generally buy the same items over and over, once he’s caught on, no further explanation is necessary, and in the long run it saves time and money — not to mention frustration.

I really do appreciate the way they refer to their marriage as “full-spectrum.” Gee, maybe we oughta start referring to ours as “bi-focal.”

AIM to increase your knowledge about autism

by Patricia Wright

Google the word “autism” and take a guess at the number of results …

78,600,000 — that is NOT a typo. More than 78 million hits. I hate to break it to everyone, but not every one of those hits contains quality information.

The University of Google (as I affectionately call a Google Search) has become the go-to source for information in today’s society. Families and professionals type “autism” into Google and then attempt to sort through millions of entries. What a challenge!

At Easter Seals we want to help families access quality resources. My personal favorites :

• Centers for Disease Control
• Autism Society
• Autism Speaks

These three do a great job of sharing information with families and professionals. A fantastic site for deeper learning about all sorts of topics related to autism is the Autism Internet Modules (AIM). AIM has been providing parents and professionals with up-to-date information since 2007. AIM is organized into 35 learning modules, and 35 more are in development. Each module is designed for self-paced learning. Imbedded video and great print resources support the module content, which has been developed by some of the top autism experts in the world.

AIM really is amazing. The self-paced platform makes it accessible to every learner. More than 55,000 learners in 120 different countries use AIM to increase their knowledge and understanding of autism. And get this: AIM is FREE! That’s right. You can take yourself through those 35 AIM modules, increase your knowledge in autism tremendously, and it won’t cost you a dime. So check it out. Log into AIM, choose a module, and know that you are learning from a quality information source.