High five, Hilltoppers!

by Bob Glowacki

I am pleased to have Nicole Berlowski as a guest blogger today. Nicole is a senior therapist here at Easter Seals Southeast Wisconsin, supporting families and people living with autism.

Kids with autism find heroes at football camp

by Nicole Berlowski, MS

Last weekend Easter Seals Southeast Wisconsin had the pleasure of teaming with the Marquette University High School (MUHS) Hilltoppers football team to offer a football camp for children with autism and their siblings. When a colleague and I first approached MUHS with the idea of integrating our participants into a camp with typically developing peers to help the children build relationships and form new heroes, the Hilltoppers embraced our vision.

we could have never in a million years imagined how incredible the event would be. Thank you to MUHS Head Coach Jeff Mazurczak and all the other MUHS coaches and players who were there for us last weekend. Not only did Coach Maz allow us to use the school’s field, but the Hilltoppers also supplied equipment and developed fun stations that supported the children’s needs. They even provided a photo booth for trying on uniforms!

Every drill at the camp was designed and run by members of the team’s coaching staff and demonstrated by members of the MUHS team. The players and coaches went above and beyond with the patience and encouragement they gave to every participant. Thanks to the Hilltoppers outstanding efforts and collaboration with Easter Seals, participants and their families had the joy of experiencing an afternoon of football fun that will not be forgotten.

It’s difficult for me to put into words how amazing it was to see the children running around with smiles on their faces and footballs in their arms. The football camp truly was a great example of Easter Seals fulfilling their mission to support integrating children with autism into the community. Feedback from the camp indicates the respect other parents and coaches have for the autism community. My hope is for Easter Seals and the community to continue to develop opportunities for these children to be supported in the natural environment.

You can visit our photo gallery to see what fun we all had at football camp last weekend. Who could resist watching a bunch of children tackling others or running up to you for a high five??

What will happen to my child when I’m gone?

by Beth Finke

A story in the Pittsburgh Tribune-Review about the challenges inherent in the increasing numbers of young people living with autism features a picture of 20-year-old Tony Mambuca-Capanzzi and his mom, Marie Mambuca. Tony works at Easter Seals Western Pennsylvania. He lives at home and his mother worries a lot about what will happen to Tony when she’s gone. From the article:

Doctors diagnosed Tony Mambuca-Capanzzi, 20, with autism at age 3 and he still lives at home.

“He does not understand money. He would eat everything all at once. He’d walk into the street without looking. And who even knows what other people would do to him?” said Mambuca, 48, of West View.

She is hardly alone in her worry. By 2023, about 380,000 children with autism nationwide are expected to need extensive residential services as adults, according to the Department of Health and Human Services. The story discussed the dearth of future care options for children and adults with autism as their parents age and can no longer care for their child.

In my “Adults and autism: Our kids might outlive us” post, I told readers that Mass Mutual, one of Easter Seals’ national corporate partners, offers helpful resources for people with disabilities and their families when it comes to estate planning. Our son Gus was still a teenager when my husband and I set up a special trust for him to help make sure he’d be eligible for government programs like Supplemental Security Income and Medicaid after he turned 21, and then, too, after we die.

We at Easter Seals also recommend that in addition to setting up a special-needs trust, parents of children with autism or other disabilities draft a “letter of intent.” This letter, while not legally binding, provides a guide for your child’s caregivers or the courts on how you’d like your child to live after you’re gone. You can download With Open Arms (a guide that includes a worksheet to help you begin writing a letter like this) for free at our web site.

Trying a job on for size

by Beth Finke

Last Friday the American Association of People with Disabilities (AAPD) partnered with the Mayor’s Office for People with Disabilities right here in Chicago to launch this year’s Disability Mentoring Day (DMD).

A guest blog Written by Dana Fink, Program Assistant, and Sarah Amin, Programs Intern,at the AAPD web site explains what Disability Mentoring Day is all about and how it provides opportunities for youth and other job seekers with autism and other disabilities to explore careers and connect to employers. I appreciated the honesty in their post — especially the way it pointed out how job shadowing can also help a young person with a disability decide what they might not want to pursue as a career:

Through DMD, participants gain insights into different careers that can help them make informed decisions about their future. For example, one young woman who participated in DMD had always wanted to own and operate her own restaurant. DMD provided her with the chance to spend a day job shadowing at a restaurant, where she performed a variety of job tasks, including serving, hosting, preparing food, and interacting with customers. At the end of the day, the manager was so impressed with her work that he wanted to hire her on the spot. But through her job shadowing experience, she realized she loved to dine at restaurants but was no longer interested in running or working in one.

Exploring what fits and doesn’t fit about particular careers is very valuable to people planning their futures, and it’s something that few people with autism or other disabilities have the opportunity to experience. For more information and resources on mentoring a job-seeker with a disability, link to the Disability Mentoring Project. You can also phone the DMD National Team at 800-840-8844 or email them at dmd@aapd.com.

Do you tell your employer you’re on the spectrum?

by Beth Finke

Cornell University is conducting a Survey on Emerging Employment Issues for People with autism and other Disabilities. This is a good opportunity for us to share our perspective on emerging employment issues. One topic covered in the survey might be of particular interest to people with Asperger’s: disclosing your disability in the workplace.

The survey is co-sponsored by the American Association of People with Disabilities (AAPD) and Cornell University. They’re hoping the results will provide a foundation for guiding policy change around these issues. The survey is brief (should only take 5-10 minutes), so if you have the time, link to the survey to share your unique perspective and expertise.

When bullying backfires — a happy ending!

by Beth Finke

It’s high school homecoming time, and apparently some kids at a high school in southern California decided to play a cruel joke and put Rachel Sampson, a 14-year-old girl with Asperger’s, on the ballot for homecoming princess. Rachel Sampson’s mother Kathleen was quoted in a story about the prank on NBC News saying, “Rachel has a lot of friends, but she doesn’t socialize outside of school, that’s a little too difficult for her right now.”

In the end, it sounds like Rachel has more friends than those bullies who pulled the prank do. After her fellow students at the high school in Poway, Calif., learned what the bullies had done, they rallied and voted for Rachel — and she won!

The NBC News story reported that Rachel Sampson wasn’t discouraged by the prank. “I decided that if it was a mean joke, it would drive those kids really nuts if I actually won and had a lot of fun with it,” she said in the NBC interview. “I’m just hoping that other kids who have been bullied are going to get a message from this and other kids who are bullies realize what they’re doing is wrong.”

Wow. What a great story. Rachel Sampson really is a princess!

Tapping the potential of special abilities

by Bob Glowacki

October is disability awareness month, and in Milwaukee County, we’ve given this month a special theme: Tap the Potential. I love that theme because it speaks to what we miss if we don’t engage people with autism and other disabilities in mainstream society. We miss their talents and abilities, and there is so much there that we could benefit from.

Derek Paravacini, for example. He’s 32, from the United Kingdom, and such a talent. He is blind and lives with autism, and he played to a sold-out audience in London recently. People describe him as the “human iPod” — you play him a tune, and he plays it back perfectly.

A story about Paravacini on the ABC News web site reported that people with autism often show a particular affinity for music. The story quoted Lori Warner, a psychologist and the director of the HOPE Center at Beaumont Hospital in Michigan, describing the way music can open a pathway to emotion and communication that might otherwise be closed to people with autism. “It’s a way to connect without the use of words, but still get that emotion, that feeling,” she said. “It’s especially appealing if your ability to use language is somewhat limited.”

The story also mentioned that Paravacini is a big Gershwin fan. Seems appropriate that a man without sight would be drawn to the rhythms of Gershwin.

I guess as we continue to learn more about the human mind and assure people with autism and other disabilities that they are truly a part of our community, we can tap more potential. It would be ‘S Wonderful don’t you think?

I’d love to hear the special abilities that someone you love with disability has. Tell us.

We have Steve Jobs to thank

by Beth Finke

When Apple unveiled the Macintosh way back in 1984, they promoted it as “the computer for the rest of us.” Computers before then had been designed with high-tech geeks in mind, but Steve Jobs was a visionary. He understood that everyone could benefit from the technology.

Twenty-seven years later, I pick up my iPhone, rub my finger over the screen until I hear it call out the name of the person I want to phone, tap the screen twice, and voila! I’ve dialed. “But you’re blind,” onlookers say. “How can you use a touch screen?” I can, because back when Steve Jobs said that Apple’s computers were for “the rest of us” he really meant it. He understood that some of the rest of us have disabilities, and he saw to it that Apple utilized universal design when creating new products.

Last March when Steve Jobs announced the release of the iPad2, we here at Easter Seals watched the hour-long video with rapt attention. We were curious what this new device might have to offer people with autism and other disabilities, and Steve Jobs did not disappoint. His presentation that day included a two-minute clip about autism! The iPad has been successfully utilized as a piece of assistive technology in programs for children with autism, and Jobs found the use of the iPad with children with autism worthy enough to include in his appearance.

The use of assistive technology, including the iPhone and the iPad2, has proven to be a great tool to improve access to work, recreation and education for the rest of us, including people like me, who are blind. And people who read this blog, who are affected by autism.

Through his work with Apple, Steve Jobs has taught millions of people that those of us with disabilities are capable of meaningful, purposeful and enjoyable lives. We cannot thank you enough, Mr. Jobs. Rest in peace. You will be missed.

Ozzie Guillen: gone but not forgotten

by Maurice Snell

All the baseball playoff games over the weekend got me thinking. How would I define the word “champion”?

A champion is the one who takes risks to get to the top of their sport or game. A champion also is the one who gives back to those who are less fortunate in this world. Ozzie Guillen is all of that. He is a champion on the field and off. He guided the Chicago White Sox to a World Series championship in 2005 and touched the lives of many individuals with autism here at Easter Seals Metropolitan Chicago.

When the news broke last week that Ozzie was not returning for the 2012 season with the White Sox, a lot of things went through my mind. How in the world would a classy guy like Ozzie not return to the Sox for one more season, just to fulfill his contract? What will Easter Seals Metropolitan Chicago be like without his presence at events?

Even though his resignation from the White Sox is not what I hoped for, I hope it is what’s best for Ozzie and the city of Chicago. Ozzie has supported Easter Seals Metropolitan Chicago on numerous occasions. He came to Easter Seals Metropolitan Chicago’s Therapeutic School and Center for Autism Research when we dedicated a softball field for the students bearing the White Sox name. That was when we got a first glimpse of Ozzie, and right there, he vowed to be a part of the Easter Seals organization. He was true to his word, serving as a board member and spokesperson for our autism program. He was also there for other Easter Seals events — he was there for the Festival of Trees and also collaborated with Hollywood actor Joe Mantegna on some occasions. For the past three years, he has reached out to many individuals with autism and we can’t thank him enough for his efforts during his time with us.

Ozzie may be gone from the Chicago spotlight, but will never be forgotten. While the rest of Chicago will remember him mostly for his play on and off the field, I will remember him as a humanitarian and urge him to continue doing what he does best: be a champion for Easter Seals!

We love Parents!

by Beth Finke

October’s issue of Parents Magazine features Easter Seals in a five-page article called Understanding Autism. The article is about Easter Seals Make the First Five Count — our new awareness and advocacy effort designed to give children with or at risk of autism, developmental delays or disabilities the right support they need to be school-ready and build a foundation for a lifetime of learning.

Every year, millions of young children with unidentified disabilities enter school with learning and health issues that put them far behind their peers and have a lasting, negative effect on their ability to meet their full potential. Many will never catch up. But we know young children with autism and other special needs can succeed in school alongside their peers if they receive early intervention services — therapies that work to strengthen their physical, social, emotional and intellectual abilities at a very young age.

Through this feature, Parents is really helping us spread the word about the importance of early intervention. We want every parent to know more about their child’s development, where to go for help if something doesn’t feel right, and how to take action early. As Dr. Patricia Wright, our National Director of Autism services, says in the article, “we can do so much to help children manage their challenges. Wherever your child is now, he or she can make significant progress over time.”

The power of an idea

by Patricia Wright

My friend and colleague Helen McCabe just posted a fabulous video on YouTube that shows how she took an IDEA about improving the lives of individuals living with autism in China and made it a reality.

Helen and her sister Karen McCabe founded the Five Project in 2006. Its mission:

• Increase the capacity of autism and other disability organizations in China to provide effective intervention services.
• Promote and support self-help and self-advocacy skills in Chinese individuals with disabilities and their families.

Helen’s idea is now reality and is producing meaningful outcomes. Getting an idea to reality takes a lot of work. I’ve been privileged enough to work with the Five Project in China a couple of times and have seen the amazing outcomes. Helen and Karen have devoted thousands of hours over many years building relationships with families and professionals in China and throughout the world. They have developed autism awareness videos in Mandarin. The Five Project newsletter comes out in both English and Mandarin so we can share information with others who might be interested.

It is easy to have an idea.. The tough part is making that Idea a reality. Helen McCabe and the Five Project are a wonderful example of the powerful outcomes that can come from an idea.