A reaction to the Steve Jobs tribute on 60 Minutes

by Jennifer Friesen

I’m pleased to introduce Laura Bierck, MA, CCC-SLP as our guest blogger today. Laura is our Lead Speech-Language Pathologist / Lead Therapist for the Outpatient Rehabilitation team here at Easter Seals North Texas.

Good job, Steve Jobs

by Laura Bierck

I am the “iPad Person” here at work. Since I got my iPad last year for Christmas, I carry it with me each and every day, and if you ask me about it I’ll tell you about what an amazing therapy tool I think the iPad is.

I didn’t catch the 60 Minutes tribute to Steve Jobs when it originally aired, but when I heard that they did a section on the iPad and kids with Autism, I got on my Mac to find the story. The segment emphasized the large number of apps created for the iPad, and the number of apps created both to help children communicate and to teach other skills is beyond belief. But I want people to know that people with disabilities have been using computers with voice output for decades. The iPad did not give people with disabilities a new technology to communicate, but the iPad made this technology easy, more accessible, and really, more fun.

The iPad is something everyone wants to own, and for children with autism who already have difficulties fitting in, the iPad is something everyone is carrying around with them.

I have seen children with autism do amazing things with an iPad. I have a child that I worked with for months on identifying objects quickly learn this skill when the pictures were put on an iPad, because after he selected the right picture it bounced around the screen and cheered for him. I have had children learn the names of their friends, learn what to say next in a conversation, and even form friendships with the help of an iPad. And as showed on the 60 Minutes segment, I have seen kids who previously had no clear way to communicate use an iPad to express what they want. It makes my heart happy.

All that said, I have also seen children with autism who use an iPad only as another way to “stim,” who open and close applications quickly, not caring to look at any programs at all. The iPad is not a “cure” for Autism. However, for the right kids, and with the right people in their lives to help them navigate these programs, Apple devices and the thousands of apps developed for them have created a fun and motivating way to help kids learn and to help them communicate with the world. I’m sure that when Mr. Jobs created the iPad, he was not considering the special needs population. We have the amazing app developers, parents, teachers, and therapists to thank for coming up with creative ways to use what he developed to create a more exciting way to teach and communicate. I thank Mr. Jobs for creating a device that is able to mainstream the available technology in order to reach kids with autism. Technology can make them excited to learn and participate in the world around them.

A work of Art

by Beth Finke

The Naperville Patch here in Illinois debuted a new weekly feature to recognize local people doing great things by honoring Art and Sandy Davis, who helped launch “Rotary and Easter Seals: Uniting Again to Change the World for People with Autism,” a multi-year fund-raising campaign. From the article:

Most recently, Art has worked to reunite Rotary International with Easter Seals through a $250,000 Rotary pledge to provide programs and materials for Easter Seals Metropolitan Chicago’s Therapeutic School and Center for Autism Research.

Art Davis also worked with the Chicago White Sox to raise funds for Easter Seals Metropolitan Chicago’s Therapeutic School and Center for Autism Research. Part of the center’s first phase, a research wing, will be named in Rotary’s honor. The $32-million facility will be built in four phases over the next few years. Link to Easter Seals Metropolitan Chicago’s web site for more information about the “house that Art built,” the Therapeutic School and Center for Autism Research.

CVS Caremark + Easter Seals kids = a boo-tiful Halloween party

by Patricia Wright

Partnerships. Collaboration. Cooperation. Friends. These powerful words represent the fantastic relationship we have with our Easter Seals corporate partner CVS Caremark. This partnership came shining through in Dallas during a Halloween celebration this year. Our friends at CVS ensured the children of Easter Seals had a wonderful celebration. Our guest blogger, Lenee Bashamwall, Vice President of Programs at Easter Seals North Texas, graciously provides an eye-witness account of the event.

Amazing, fabulous and wonderful

by Lenee Bashamwall

Last Monday Easter Seals North Texas was invited to bring a group of our children to CVS Caremark’s Regional Business Office to do an early trick or treat event with CVS leadership and associates there. Brian Ridgeway, the HR Director for Area 4, and his colleague Scott Lason were the ones who spearheaded this event. Brian has a nephew with autism, so our work really hits home with him. This celebration came right on the heels of a recent event at which nearly 100 CVS Caremark associates volunteered at three Easter Seals centers throughout North Texas!

It’s hard to find words to describe the Halloween party, but let me try. It was amazing, fabulous, and wonderful! They went all out. Their staff was dressed in costumes, they gave out all kinds of goodies, had crafts and games set up for the kids, provided lunch for everyone, and to top it all off, they gave our kids Toys R Us gift cards, and then gave the Easter Seals staff who attended $20 CVS gift cards!

CVS Caremark has a long standing commitment to making life easier for children with autism and other disabilities. Through its signature program, All Kids Can, CVS and theCVS/Pharmacy Charitable Trust help nonprofit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion.

Thank you, CVS Caremark, for including us in such a fun, fun, celebration. Happy Halloween!

Happy 25th birthday to a great idea

by Katy Beh Neas

Twenty-five years ago today, President Ronald Reagan signed into law a bill that established the federal early intervention program, now known as the Infant and Families program, Part C of the Individuals with Disabilities Education Act (IDEA). It took nearly eight years to bring every state on board to create a statewide system of early intervention services for children between the ages of birth and 3 years.

One of the most powerful aspects of the early intervention program is that services are delivered in the context of the young child’s family. Services are designed to help FAMILIES know how to help their child learn and grow. As a result, families gain the skills they need to work effectively with schools if their child needs additional supports starting in kindergarten.

In my 20 years in the world of disability policy, I’ve seen a lot of change. I’ve seen a lot of kids prove everyone wrong who told them what they would never be able to do. So, today, let’s celebrate all the hard earned victories of these young kids who learned to walk, to talk, to make friends, to be fully engaged members of their families and communities.

Let’s also celebrate their families and friends who supported them. Link to our Make the First Five Count page to learn about 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.

We want to spread the word about the importance of early intervention and let every parent know more about their child’s development, where to go for help if something doesn’t feel right, and how to take action early.

On to the next 25 years!

Watch this PBS documentary chronicling the disability rights movement

by Katy Beh Neas

A first-of-its-kind television documentary will premiere on PBS tomorrow night, October 27th. The film, Lives Worth Living, follows the development of the disability rights movement from its beginning (after World War II, when thousands of disabled veterans returned home) through its burgeoning in the 1960s and 1970s, when it began to adopt the tactics of other social movements.

Lives Worth Living explores how Americans with a wide variety of disabilities banded together to change public perception and policy. The story is told through interviews with people with disabilities who emerged as key leaders and legislators who were influential in passing the ADA. Historical footage shows how activists took action, breaking down curbs that were inaccessible and crawling up the steps of the U.S. Capitol to illustrate their struggles and demand change.

Through demonstrations and legislative battles, the disability rights community finally secured equal civil rights with the 1990 passage of the Americans with Disabilities Act, one of the most transformative pieces of civil rights legislation in American history.

You can visit the film’s website to learn more about the issues involved, view preview clips and read an interview with the filmmaker. A Talkback section on the site allows viewers to share their ideas and opinions.

If you’re not going to be home, check your local listings and set your TIVO or DVR now: Lives Worth Living premieres tomorrow night, Oct. 27th on PBS’s Independent Lens series.

It’s never too early to start planning

by Beth Finke

Now here’s something I wish had been around back when we were raising our son Gus at home: workshops specially intended for families who financially support or care for either a family member or friend with special needs.

Easter Seals DuPage & Fox Valley Region is sponsoring a workshop like this — their special needs planning workshop will be held at the Villa Park, Ill. facility from 7:00 to 9:00 p.m. next Tuesday night, November 1, 2011. Mary Anne Ehlert from Protected Tomorrows will lead the program, and she’ll present on all aspects of special needs planning, including :

• the creation of a life plan,
• government benefits,
• special needs trusts, and
• guardianship.

There is no charge for the event, and Easter Seals DuPage & Fox Valley Region assures me that no financial products or services will be sold or promoted there.

If you live in the Chicago area and want to attend, you can call 847-522-8086 or email registration (at) protectedtomorrows (dot) com to register. If you are unable to attend the event, but are interested in planning for the financial future of your child with autism or another special need, please download our With Open Arms brochure. Easter Seals and the National Endowment for Financial Education® collaborated to create the With Open Arms financial planning booklet for parents, caregivers, grandparents or others involved in the care of a special needs child. It’s never too early to start planning for the financial future of a child with special needs!

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.