Special ed advocates tout Living with Autism Study

by Beth Finke

The first post published on the Special Education Advocates For Learning Disabilities blog this year is about our Easter Seals Living with Autism Study.

Having a child with autism can be a huge financial strain, with 52 percent of parents saying the family’s finances are drained. Three quarters of parents of children with autism worry that their child won’t ever get a job or won’t have enough money to get by after the parents die.

These sad numbers come from a new survey of 1,652 parents of children with autism up to age 30, as well as 917 parents with typically developing children. The survey was conducted by Easter Seals.

Easter Seals plans to use these findings to raise awareness of and advocate for the life-long services families living with autism desperately need.

Easter Seals will be holding workshops around the country at which parents can learn how to make that happen. It’s time for those parents to hear that they can dream those dreams, too.

Stay tuned for more information about our upcoming community forums.

One thing Blagojevich got right

by Beth Finke

While Roland Burris spends the week trying to get accepted into the U.S. Senate, the Illinois governor who picked him remains on bond after being arrested on corruption charges. Illinois legislators are working on Rod Blagojevich’s impeachment. President-elect Barack Obama and other politicians have urged him to step down.

Somehow, in the middle of all this, Governor Blagojevich managed to do something right. A press release on December 12 announced that he had signed “Brianna’s Law” (Senate Bill 934) into law, requiring insurers to cover autism treatment.

Families of children with autism have a right to access the treatment their children need and today that has finally become a reality in Illinois. I have continued to fight for this cause and I am pleased to sign this bill into law today.

The bill mandates insurance companies provide “individuals under 21 years of age coverage for autism spectrum disorders to the extent that the diagnosis and treatment of autism spectrum disorders [who] are not already covered by the policy or plan.”

Here’s an understatement: it’s been a busy month for Illinois Governor Rod Blagojevich. In the midst of it all, somehow he managed to sign a bill that could better the lives of children with autism and their families. I sure hope it sticks.

Book Review: Gennifer Choldenko’s “Al Capone Does My Shirts”

by Beth Finke

I am happy to introduce Margo L. Dill, as a guest blogger. Margo is a columnist for WOW! Women On Writing, and writes a blog for teachers, parents, and librarians called Read These Books and Use Them. Her first book, Finding My Place, a middle-grade historical novel, will be published in 2009.

Book Review: Gennifer Choldenko’s “Al Capone Does My Shirts”

by Margo L. Dill

Moose Flanagan lives on Alcatraz Island because his dad is a prison guard. Gennifer Choldenko’s author’s note tells the reader that the staff did live on the island with their spouses and children. Al Capone Does My Shirts has a lot of accurate, fascinating history in it.

Back to the story. The Flanagans are a loving family, consumed by Moose’s sister, Natalie, who has autism. This book is much more about Moose and Natalie’s relationship than it is about Al Capone doing laundry, but the inmates are interesting characters in the story. Moose misses his old home and isn’t thrilled about living with the prisoners, but he learns to make the best of it, makes some friends, still plays baseball when he can, and has more responsibility for taking care of Natalie. He builds a special relationship with her, and his parents believe Moose is one of the reasons why Natalie is communicating more.

In the end, Moose writes a letter to Capone, asking him if there is any way the gangster can help Natalie get into this special school that will help her have a more independent future. Can Capone pull strings to get Natalie in when it seems no one else can?

So, what do I do with this book?

1. Your students can gather facts about the 1930s from this book. They can also research and find out what was happening in other parts of the United States during this period. They can compare and contrast life on Alcatraz Island with life in New York City or San Francisco or your hometown. Alcatraz Island also has a fascinating history. If students are interested in Alcatraz, they can research the prison and see if they can find more facts than Choldenko provided in her author’s note. They can add a paragraph or two to the author’s note.

2. Autism affects millions of people. You may have someone in your school or family who has autism. Talking about Natalie’s actions in the story might help students understand autism and why Natalie acted the way she did in certain situations. You could invite an expert in autism to your classroom to talk about all the current research and ways to help a student with autism that were not available in 1935. Students can write journal entries about the discussions you have about autism, about how it would feel to watch Natalie after school like Moose did, or about any questions or feelings they may still have.

3. Moose loves baseball, and Natalie loves her collection of buttons. Talk to your students about their hobbies or collections. Hold a “Hobby Day” in your classroom. Let students bring in items that they use in their hobbies, or they could bring in a part of their collections. Students could write paragraphs about their hobbies and draw pictures to go with them. Hobby Day allows classmates to see a different side of each other.

Overall rating of this book: Can you say WOW!?

Book review: Robert Hughes’ “Running with Walker: A Memoir”

by Patricia Wright

During one of my many visits to Easter Seals Chicago Metropolitan, I had the good fortune of meeting Robert Hughes. Hughes is the author of a memoir called Running with Walker — the story of his family’s relationship with his son Walker, who has autism. I got a few details about the book and decided it would be a worthy purchase. Lucky me — Mr. Hughes had the book with him. He gave me a signed copy.

I had plenty of work to do the next weekend, but I could not tear myself away from this book. Hughes provides an incredibly heartfelt glimpse into his family. Walker is a young man now, and the emotional turmoil, educational decisions, and family turbulence that went along with his upbringing is all here in his father’s memoir. When I was done reading Running with Walker, I felt compelled to send an email to Mr. Hughes. I told him that sharing at such an in-depth level and allowing himself to be viewed at both his best and worst was very brave. His love for Walker shines in every page of this book. The challenges of raising Walker are equally as visible on the pages.

I have dedicated my 20-year-career to ensuring that individuals with Autism Spectrum Disorders (ASD) and other disabilities are fully-included in society. My personal mission is to offer the support that makes it possible for people with ASD and other disabilities to lead meaningful, happy and productive lives.

Still, with all that experience, I truly have no idea what it means to raise, love, cherish and be challenged by a son or daughter with autism. As a professional I feel an obligation to raise my empathy skills regarding family dynamics and autism. This book absolutely contributed to my empathic skills. Running with Walker is well worth the read!

Transition team wants your input on health care policy

by Beth Finke

President-elect Obama is looking for your help in reforming the health care system to provide quality, affordable health care for all Americans. From now until the end of the year, you can sign up on the Obama-Biden transition team Web site to lead a Health Care Community Discussion in your home, community center, or even a local coffee shop. The site will provide you with a special moderator kit that will give you everything you need to get the discussion going — Sen. Tom Daschle (D.-S.D.), the leader of the Transition’s Health Policy Team, will even choose one discussion to attend in person.

Change.gov: the Obama-Biden Transition Team web site is a site for the Office of the President-elect and Office of the Vice President-elect. The Presidential Transition Act specifically authorizes the Administrator of GSA to provide services and support to the Office of the President-elect beginning the day after the election until 30 days after the inauguration to support the orderly transfer of executive power after a general election.

Maybe it’s just good politics, or the president-elect and vice president-elect just trying to make us feel like we’re part of the change to better health care. But heck, what’ve we got to lose? It wouldn’t hurt to get a Health Care Discussion going in our communities.

To sign up or for more information, go to change.gov.

With kids home from school, you need a break

by Beth Finke

Breaks from school can be hard on kids with autism — not to mention their parents! While the weather is wintry, and the kids are home from school, Here are three ways to get some emotional support without leaving the house:

1. Watch the press conference about the Easter Seals Living with Autism Study. The press conference last Tuesday was so positive — I especially liked the part when Barbara Gaither and William Snell talked about raising their sons who have autism. Some think the media coverage about studies like ours can be all doom and gloom, but in our case that wasn’t true. We have Barbara and William to thank for this — their stories about parenting their sons were so honest, and they spelled out the need for services so well. They were living examples of the way families can survive — and thrive — when services are available for children with autism and other disabilities.

   The two words “other disabilities” are very important in that last sentence. Some who know about our Living with Autism Study are afraid Easter Seals is focusing on autism at the expense of services and attention to other disabilities. This is not true, and listening to the press conference online will assure viewers that Easter Seals continues serving people with all sorts of disabilities. Including autism.

2. Read a book. Check out the “Bookstore” link on our autism Web site — the list features books reviewed on this blog. Every time you order a book through our bookstore, a portion of that sale will go to Easter Seals. Many of the most supportive and hopeful books in the Easter Seals Autism Bookstore are written by family members of people with autism — or by people who have autism themselves.
3. Keep up with our Easter Seals and Autism blog. We’ll be reviewing more books the week after Christmas, so you’ll have more to choose from.

Happy Holidays!

Living with Autism Study in the news!

by Beth Finke

It’s no surprise that the Easter Seals Living with Autism Study has been getting a lot of media attention since Tuesday, when we revealed the results. After all, autism now affects more than 1.5 million Americans and their families, and the study results paint a startling picture of the life-long fears, anxieties and critical supports needed to raise a child with autism.

A US News & World Report blog post points out how the strain on families raising a child with autism can be different than that on families raising children with other disabilities.

“But every time we look at autism versus other disabilities, the disparity is greater,” says Patricia Wright, national director of autism services for Easter Seals, a Chicago-based organization that provides services for people with disabilities. She came by U.S. News’s offices today to talk about why autism feels different than other disabilities.

We have a pretty good idea how to accommodate physical disabilities — a person with a wheelchair needs a ramp, or a person who can’t see needs Braille signs. But with autism, the disability comes in communication and social skills. “Having a colleague that would never look me in the eye?” asks Wright. “Our society is not as accommodating.”

The Chicago Tribune ran two stories. One features Wendy Murphy, a member of the Easter Seals Autism Spokesperson Network, and Another story looks closely at the findings.

The Republican, a newspaper in Springfield, Mass., caught Patricia Wright during a cab on her way to US News & World Report.

She said in a phone interview that the number of cases of autism has “risen dramatically in the past five years.”

Her information and referral service at Easter Seals, headquartered in Chicago, gets some 800 calls a month from parents with such questions as “Where can I get a speech pathologist?” and “Where can I find a school that will help my child?

“Parents are overwhelmed just by daily activities,” said Wright. “Trying to network and find resources can be overwhelming.”

MassMutual is headquartered in Springfield, and Joanne M. Gruszkos, director of the SpecialCare program of MassMutual, was also quoted in that article.

“Parents don’t want to live one day longer than their child,” said Gruszkos, and their fear is “a tremendous stressor.”

In planning for the future, said Gruszkos, it’s especially important for families with autism to work with a professional who specializes in special needs life-care planning.

Such a professional would know, for example, that having more than $2,000 in assets in a child’s name would disqualify him from government benefits, she said.

Also important, said Gruszkos, is to put into writing care instructions for the autistic child, including emergency contacts, medical history and arrangements for living, education and work. MassMutual calls this a “letter of intent.”

Read more about the Easter Seals Living with Autism Study in the Peoria Journal-Star and in Education Week (subscription only).

Blogger Kristina Chew also highlighted the study on AutismVox, and Lisa Jo Rudy covered it on the About.com: Autism blog.

This media attention is terrific. It will help Easter Seals use these findings to raise awareness of — and advocate for — the life-long services families living with autism desperately need.

Living with Autism Study reveals parents’ fears for their children with autism

by Patricia Wright

The one consistent message Easter Seals hears from families — 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 to be independent.

Until today, we have had no data to quantify what we’ve heard anecdotally over the years. So Easter Seals worked with Harris Interactive, and in cooperation with the Autism Society of America, to conduct the Easter Seals Living with Autism Study. The study, made possible through the generous support of Easter Seals corporate partner MassMutual Financial Group, surveyed 1,652 parents of children who have autism and 917 parents of typically developing children about daily life, relationships, independence, education, housing, employment, finances and healthcare.

I just now sat down after participating in a national press conference at the National Press Club in Washington, D.C., to announce the results. The press conference was hosted by James E. Williams, Jr., President and Chief Executive Officer, Easter Seals, Inc., who presented the key findings along with me.

We were joined at the podium by John Chandler, Chief Marketing Officer, MassMutual Financial Group ; Lee Grossman, Chief Executive Officer, Autism Society of America; and Maurice and William Snell and Barbara and Scott Gaither, who represent Easter Seals families.

The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need,
especially for adults with autism.

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school to work transitions, employment support, residential and community support, and financial planning.

Easter Seals strives to make data-based-decisions, and with this study, the disparities that parents of typically developing children and parents of children with autism experience can now be shared via solid numbers.

For parents of kids with autism, there are no simple answers. There is an urgent need for increased funding and services — especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today.

Download the Easter Seals Living with Autism Study results and key findings.

Holiday tips for families with autism

by Beth Finke

The holidays can be an especially difficult time for people with autism. And who can blame them? Changes in routine, different demands, new foods, sounds, textures — what a challenge!

A holiday post on the ABA4Autism or other Neuropsychological Disorders blog offers tips to make the winter holidays better.

1. Try to keep your child in his or her usual routine as much as possible.

2. Sensory over stimulation — the lights, the sounds, the smells, the relatives touching your child — are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet.

3. Some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.

4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what.

5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type “autism toys” in your search engine.

6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As mentioned above there are web sites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.

7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on the second page of my website.

8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.

9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.

10. And last but not least, realize that you are probably not going to have a perfect food, perfect decorations, and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)

We’re off to Wisconsin this weekend to celebrate an early Christmas with our grown son Gus in his group home. I’ll keep some of these tips (especially the one reminding parents to relax!) in mind.

Join us Tuesday as Easter Seals unveils its Living with Autism Study

by Jim Williams

Please join us this Tuesday, December 16 when we unveil Easter Seals’ Living with Autism Study, a nationwide study made possible through the generous support of Easter Seals National Corporate Partner MassMutual Financial Group and conducted by Harris Interactive.

The study asked families from Easter Seals and the Autism Society of America about their concerns for their children with autism (up to age 30). Their issues were then compared with parents of typically developing young people. The contrast is stark — our key findings show that Easter Seals’ work to provide services is just the beginning.

We are releasing the study findings Tuesday, December 16 via a press conference at the National Press Club in Washington, D.C., from 9:30 to 10:30 a.m. EST. You can join us in a live Webcast online and be among the first to hear the findings and take away new insights into the ongoing challenges facing individuals and families living with autism. Online attendance is free, and no other special technology is needed — you’ll be able to see and hear the information provided in real time just as if you were present at the event.

We are excited about the opportunities this study offers Easter Seals to address the very real concerns of families living with autism — to the media, to our national and state legislators, and to other current and potential community partners. In January, we will begin to host local autism community forums (thanks to additional support from MassMutual Financial Group) to start the conversation about solutions for families. Stay tuned for those local autism community forums, and in the meantime, join us this Tuesday, December 16 from 9:30 a.m. to 10:30 a.m. EST.

And be sure to come back to the Easter Seals and Autism blog next Tuesday to get the Study results and key findings.