Book review: Don Meyer’s “Thicker than Water”

by Beth Finke

Thicker than Water: Essays by Adult Siblings of People with Disabilities is a collection of essays by 39 different authors who grew up with a brother or sister who has a disability. Don Meyer edited the collection, and quite a number of the essays are about siblings with autism.

One essay was written by Tom Keating, a Ph.D., who specializes in assistive technology. He says his perspective is strongly influenced by his role as primary care provider for a brother with autism. Another author, Ann P. Kaiser, wrote an essay called Transition about her brother, who wasn’t diagnosed with autism until adulthood.

The essays by adult siblings of people with autism were not all sugary-sweet — the authors reveal both positive and negative aspects of growing up with someone who has autism. That’s what I liked best about the essays — they were honest.

Thicker than Water gave me an insider’s view of the decisions so many siblings have to make in regards to their families. All in all, an interesting and eye-opening read.

Lose the training wheels, and gain your independence

by Scott Fogo

What a pleasure it is to introduce Candy Porter as a guest blogger. Candy is the Director of Marketing and Communications here at Easter Seals Crossroads in Indianapolis.

Lose the training wheels, and gain your independence
By Candy Porter

Last month I had the privilege of observing the opening and closing ceremonies of the Lose The Training Wheels camp here at Easter Seals Crossroads. An article about our Lose the Training Wheels camp appeared at About Special Kids (ASK), a parent-to-parent Web site and resource for Indiana families with children who have special needs. The article described our program like this:

Children ages 8 to 18 with disabilities (such as autism, developmental delays, Down syndrome and cerebral palsy) are taught how to ride and transition to a conventional bike within a five-day period. The program utilizes adapted bikes and techniques developed by Dr. Richard Klein, a retired professor of mechanical engineering from the University of Illinois.

Think back to when you mastered a two-wheel bicycle — do you remember the time and place? I do — and that was over 55 years ago! What a life changing, growing experience it was. I have a feeling that it was even more so for our young riders.

I saw wobbly kids, scared kids and reluctant kids evolve overnight into successful kids, proud and confident. Better put: I saw earthbound caterpillars turn into soaring butterflies. What a joy — and privilege — to behold.

Alan Jackson’s donation is “Right on the Money”

by Beth Finke

My job as moderator of the Easter Seals and autism blog rarely takes me to the world of country music, but thanks to the generous donation country music superstar Alan Jackson recently made to Easter Seals of LaSalle and Bureau counties, my eyes (okay, my ears!) have been opened.

First, some background. Alan Jackson agreed to do a benefit for Easter Seals of LaSalle and Bureau counties last month, and before the concert he spent some time with Easter Seals clients. As reported in the News Tribune, a newspaper Serving North Central Illinois:

The country superstar met 3-year-old Corvin Berg and his mom, grandmother and aunt last week as part of a meet and greet with the children and families of Easter Seals of La Salle and Bureau Counties. He was impressed with the difference that Easter Seals had made in Corvin’s life and the lives of the other children in the area, according to Diana Baron of d.baron media relations.

Unfortunately, the concert after the Meet and greet ended up as a large financial loss for organizers, which means there was nothing left over to donate to Easter Seals of LaSalle and Bureau counties. Alan Jackson heard about this later and dug into his own pocket to donate directly to the cause. Shelley Threadgill, marketing director for Easter Seals of LaSalle and Bureau counties, was the one to receive the overnighted envelope from Alan Jackson. She assumed the envelope contained an autographed picture, and boy, was she surprised to see what was inside instead!

“Oh my gosh,” she exclaimed. “This is beyond belief. Alan’s concern for us is outstanding. We cannot even take it all in yet.”

The amount of the check? Twenty thousand dollars. Threadgill said the generous donation will have a significant impact on many programs that have been affected by the economy, including their autism resource center.

“This is a miracle. Thank you so much to Alan from the children and families of Easter Seals.”

Learn from the experts — people with autism!

by Patricia Wright

“What’s the best way to learn about autism?” When people ask me this question, my first recommendation is always the same: spend time with people who have autism. Learn from the experts!

One of the best places to learn from the experts is at the Autism Society of America’s annual conference. This year’s conference had plenty of learning opportunities — people with autism shared their gifts and educated us neurotypicals about their challenges. Lars Perner, Judy Endow, and Sondra Williams (all individuals with autism spectrum disorders) delivered presentations and participated in a panel discussion regarding the Culture of Autism. The panel was masterfully facilitated by Brenda Smith-Myles. The panelists didn’t all agree about the current existence of a “culture” of autism, but all of them conveyed the unique nature of their autism and how it may contribute the emergence of a culture.

With years of experience as a professional in the field, I am regularly humbled by what I can still learn about autism. Sharing time and engaging in communication with people with autism will always be a contributor to my learning. Perhaps we can all learn from the experts a bit more at next years Autism Society conference in Dallas!

Living on the edge

by Kathy Patrick

I’m the vice president of services for Easter Seals New Jersey, so I was invited to attend the Legislative Summit of the National Conference of State Legislatures in Philadelphia earlier this month.

Along with other Easter Seals affiliate and national staff members who handle state government relations, I networked with state legislators, learned about the issues facing my state legislators, and educated legislators and their staff on issues facing Easter Seals.

I also wear the “autism spokesperson” hat for Easter Seals New Jersey, so I participated in a session for legislators called Autism Spectrum Disorders: State and Federal Policy Trends. The session was sponsored jointly by Easter Seals and the Association of University Centers on Disabilities (AUCD).

Our session began with George Jesien, executive director of AUCD, and Jennifer Bogin, project manager for AUCD, who discussed research, education and services for individuals with ASD. They were followed by Denise Rozell, assistant vice president for state government relations for Easter Seals. Denise detailed what’s new with state legislators and encouraged them to link to our 2009 State Autism Profiles. The profiles provide factual, objective descriptions of what the 50 states, D.C. and Puerto Rico are doing for people with autism.

After Denise, Pennsylvania Representative Dennis O’Brien and Maryland Representative Kirill Reznik captivated the audience with stories of how they advocate for people with autism. And then it was our turn: Charlie Briggs, assistant vice president of adult and community services for Easter Seals Goodwill Northern Rocky Mountain and I were prepared to discuss our state’s accomplishments and share some personal stories. The reason I say “were prepared” is that the session ran long. By the time Charlie and I were supposed to speak, attending legislators and their staff needed to get on their way to the next event. Bill Gates was presenting immediately following our session! And while fans of Charlie and me would agree that we are two of the most engaging and amazing speakers, we recognized that we are not the great Gates. We let our fans move on.

What I had wanted to share with the audience was my viewpoint as a parent of a child with ASD — to help them understand why all of this matters. Two of the speakers had discussed “the cliff,” the feeling that many families experience when their child with autism turns 21 and the scope of services changes dramatically (for the worse).

My son is only 12 so I haven’t seen that particular cliff yet. But trust me, I’ve had many hair-raising experiences already with other cliffs. I’ve been on the edge, frustrated by the lack of available services my son desperately needed. That feeling is something you never forget. You want to give up and jump off. And, sometimes, you want to push someone else off with you while you’re at it!

I’m a resourceful person with a graduate degree in special education. I have a lifetime worth of contacts and experiences with supporting people with disabilities. I’m a blessed person surrounded by friends, family and colleagues who would all do whatever was necessary to help my son and me. I have a roof, a job and health insurance. But I still couldn’t find the services that would meet my son’s needs. If I can stand on the edge of that cliff and consider how much easier it would be to give up, one can only imagine what it’s like to be in a more challenging situation.

Whether you are a legislator, a friend, a supporter, a fan, a family member, or someone with ASD, you can’t ever give up. You can’t let the cliff get the best of you. Resisting the urge to jump can make you stronger. Let the cliff make the best of you, use your strength to give it all you have — ensure that people with ASD all over this country get the services they need. If we work together, maybe fewer people will end up living on the edge.

Friendly’s helps kids find Friends Who Care

by Patricia Wright

Thanks to the Friendly Ice Cream Corporation, Easter Seals has been able to update and re-design our free disability awareness curriculum for teachers and parents.

FRIENDS WHO CARE® is an interactive educational program designed to help children understand what it means and how it feels to be a young person with a disability. The program shows kids how their peers with autism and other disabilities adapt to live life, go to school, make friends and play.

The goals of the program are simple: to encourage typically developing children to accept their peers with disabilities as people first, and to find ways to include everyone in school and after-school activities. And best of all: it’s free!

FRIENDS WHO CARE® was originally developed in 1990 with a grant from Ronald McDonald House Charities. Now, thanks to sponsorship from our long-time partner, the Friendly Ice Cream Corporation, Easter Seals has significantly updated the resource and we’re re-introducing the FRIENDS WHO CARE® curriculum just in time for the new school year.

The curriculum explores a range of disabilities and includes specially-crafted learning activities, hands-on exercises, guided discussions and guest guidelines. It starts with an introduction to disabilities, and looks at vision, hearing and physical disabilities and then at learning disabilities — including a new section on autism, ADHD and intellectual disabilities. When students gain a better appreciation of what it means to live with autism or some other disability, they are more accepting of their classmates who have those disabilities. Our hope is that children quickly realize, “Kids with disabilities can be my friends, too!”

Download theFRIENDS WHO CARE® curriculum for free and check it out for yourself. The fun, colorful components can all be downloaded separately for use at home or in the classroom.

Maurice and Patricia on the air!

by Maurice Snell

Last Sunday was a special day for me and my colleague, Patricia Wright. We were two willing people on a mission: our mission was to convey information to families about autism. That’s what we both did Sunday, discussing autism with Bill Jurek from CRIS Radio (950 AM) in Chicago.

When I first met Bill from the radio station, I noticed something interesting. He, like my Easter Seals colleague Beth Finke, is blind. And just like Beth, Bill uses a guide dog to assist him living in society. Bill and Beth both have something in common with me, too: we are all die-hard White Sox fans!

Bill, the radio announcer, was highly interested in the controversial topic of autism. But Sunday’s conversation wasn’t controversial at all — it was simply straightforward. Patricia talked from her expertise about autism and how it affects some families. She went on and talked about some services for individuals with autism. I talked about how autism has affected me and my family and how I managed to strive to my highest achievements — such as graduating from high school and college.

Overall, Patricia and I were glad to have shared our thoughts of autism with a cordial man such as Bill. From his point of view, autism can be a controversial topic and he is right when he says there will be many debates about what causes autism. But what was said during the interview on Sunday was knowledgeable. Families of individuals with autism who listened to the interview will have had a helpful learning experience. There are many families still in need of autism services, so we continue to spread the word about Easter Seals to today’s society. You can find services at an Easter Seals near you at our Web site.

After the interview was over for me and Patricia, I was on my way to the Sox game to root them on to victory. That didn’t quite happen on Sunday –- the White Sox lost to the Orioles, 2-10. But I still felt good, knowing our radio day was a big win. “You can put that on the board…..YES!”

Over 40% of homeless in U.S. have a disability

by Beth Finke

Every morning when I take my Seeing Eye dog out for her “constitutional” we pass the same homeless man sitting on a crate. “StreetWise!” he calls out. “Can you give a little help today?” StreetWise is a newspaper sold by homeless people in Chicago. The concept is that by selling StreetWise, people down on their luck might get back on their feet.

I’ve always nodded and smiled the vendor’s way as we pass. Since I can’t see to read, though, I never bought one of his papers. Until last December, that is. I left Hanni at home that day to go Christmas shopping with a friend — crowds can be so fixated on shopping that they step on my Seeing Eye dog. I cabbed home on my own afterwards, and when I fumbled with my white cane at the curb I heard a familiar voice call out to me. “Want some help?” he asked.

It was the StreetWise vendor. I grabbed his arm, and from the way my hand pumped up and down as we plodded to my doorway I could tell he had a very bad limp. When we finally arrived, I held out a bill that had one corner folded and asked for a copy of StreetWise. “They only cost two dollars,” my helper said. “You’re giving me a five.”

“I meant to give you a five,” I said, showing him how I fold money to keep track of the denominations. “Thanks for the help. Merry Christmas!”

J.T. and I have been friends ever since. “Hello Mizz Lady!” he calls out to me as Hanni and I pass him in the morning. And if we go a different way, and we don’t pass him, J.T. notices. “I didn’t see you earlier,” he’ll say. “I was worried.”

Kristina Chew’s autism blog at change.org refers to a story in the July 16 issue of Disability Scoop that says more than 40 percent of the homeless population in the U.S. are people with disabilities. I wish I could say this statistic surprised me. If anything, I thought the percentage would be higher. Chew quotes from the 2008 Annual Homeless Assessment Report, which was issued by the U.S. Department of Housing and Urban Development.

Among adults, 17.7 percent of the U.S. population had a disability whereas an estimated 42.8 percent of sheltered homeless adults had a disability. A disability, particularly one relating to substance abuse or mental health issues, can make it difficult to work enough to afford housing.

The report points out that people with disabilities are an even higher share of the homeless population than the people who are poor. This suggests that people with disabilities face additional difficulties — more than those who are poor — when it comes to accessing permanent housing.

People with disabilities may have difficulties searching for a unit or finding a landlord willing to rent to them. Their disability may make it less easy to accommodate them without adaptive supports.

The one statistic from this report that did surprise me was this one about Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). I didn’t realize SSI payments fell so far below the poverty level.

The average annual SSI payment is about 44 percent below the poverty level, and thus people with disabilities who lack a sufficient work history to qualify for SSDI—common among people with severe mental illness or substance abuse issues — are more susceptible to deep poverty.

Chew notes that the inability to work (or not being given the opportunity to work regardless of one’s skills) often puts the price of housing out of reach. This is a scary thought for those of us who have disabilities, and especially for people who have disabilities that are less obvious. Autism, for example. No wonder we read so many stories about adults with autism still living at home with their parents. The homelessness blog at Change.org reviews the Homeless Assessment Report and suggests that what especially needs to be looked at is performance. “Certainly there are programs and initiatives set up,” says Kristina Chew. “But what is actually working, and what is not?”

Children with autism grow up to be…adults with autism

by Beth Finke

An article in the Arizona Republic last Sunday reminds readers that children with autism grow up to be adults with autism. The reporter points out what so many tend to forget. Autism is not a childhood disorder. It never goes away.

The child born in 1980 – the year the American Psychiatric Association first added autism to its list of known mental disorders – is now nearly 30 years old.

The story tracks a couple of young adults with autism, including Eric Foley. Eric graduated from high school at age 20. He has lived with his parents Rob and Donna Foley ever since.

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric’s future is not as simple as money.

“I’m 60. I’m not going to live forever,” Donna said. “Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?”

The story credits our Easter Seals Living with Autism Study for providing quantifiable information about the services and supports that families living with autism desperately need.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.

• 76 percent of teenagers with autism over the age of 16 have never looked for a job.

• 79 percent of parents of children with autism are “extremely” or “very” concerned about their children’s future independence. Of “typical” parents, by comparison, 32 percent are equally concerned.

• 79 percent of adults with autism still live at home.

Easter Seals stands out as the nation’s leading provider of services and support for children — and adults — living withautism. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need. More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

ASA & other disability organizations: “Sotomayor is our champion”

by Beth Finke

With the Senate confirmation hearings for Associate Justice of the Supreme Court starting today, I thought our blog readers might be interested in what activists for people with autism and other disabilities are saying about Judge Sonia Sotomayor. The Autism Society of America, along with dozens of other disability groups, signed a letter supporting Sotomayor’s confirmation. The letter was sent to Senators Patrick Leahy (D-VT) and Jeff Sessions (R-AL).

From a press release put out by the Bazelon Center for Mental Health Law:

Her empathy is evident, as is her understanding that judges’ decisions interpreting these federal laws have real-life consequences for people with disabilities and their opportunity to participate in American life.

Lastly, a quote from Andrew J. Imparato, President and CEO of the American Association of People with Disabilities:

When we met with the White House Counsel, we emphasized the importance of President Obama using this opportunity to put someone on the Court who has a demonstrated commitment to and understanding of the laws that protect our civil rights and safeguard our human dignity. Based on our preliminary analysis of Judge Sotomayor’s extensive record on the bench, we are encouraged that she may be the champion we have been looking for. Her jurisprudence in the disability area shows that she has a good understanding of the real-life implications of her decisions, and sees the important connections between disability rights laws and other civil rights laws. Her personal experience as a woman with childhood-onset insulin-dependent diabetes gives her additional insights that can inform her approach to disability issues. We look forward to studying her record in more detail, and working on a bipartisan basis with the Senate to make sure that her approach to disability law is explored as part of the confirmation process.

The Bazelon Center for Mental Health Law reviewed a selection of Judge Sotomayor’s district court and Second Circuit decisions. Read the analysis and “judge” Sotomayor for yourself.