Wanted: More childrens books about kids with disabilities

by Beth Finke

An article in Disability Scoop refers to a study reported in the journal Education and Training in Autism and Developmental Disabilities. The study found kids with disabilities are underrepresented in children’s literature.

In an analysis of 131 winners of the Newbery Medal and Honor — considered the top prizes for children’s books — researchers found that just 31 included a main or supporting character with a disability between 1975 and 2009.

One of my favorite books reviewed here on the Easter Seals and autism blog is Cynthia Lord’s Rules, an award-winning fictional children’s book that looks at autism from an older sister’s perspective. After reading the article in Disability Scoop, however, I realize it suffers the same plight as so many other children’s books about disabilities.

What’s more, characters with disabilities were most likely to be supporting characters and were often used to boost the emotional growth of those without disabilities rather than to develop in their own right, the study finds.

Let’s hope this study serves as a wake-up call to children’s book authors and publishers. Maybe in 2011 we’ll see more children’s books focusing on kids with disabilities for who they are, rather than focusing on the limitations of their disabilities.

More to learn about autism in China

by Patricia Wright

I have blogged before about how lucky I am to get to work internationally. My good fortune continues — I head back to China today for two weeks. The Five Project has invited me to come and work with them to provide teacher training.

The Five Project and its team members have been promoting autism awareness and professional skill development in China since 1992. Their two decades of work have resulted in wonderful relationship building and knowledge, which all makes my work a lot easier!

We’ll be heading to Anshan this trip, working again at a school for young children with autism. One of the interesting components of treatment for children with autism in China is that in most environments parents attend the program with their child. This provides a great opportunity to help parents learn about effective treatment, but it can also create challenges when it comes to independence. When a parent is always there to help, it can be difficult to learn to do things for yourself.

Parents attending the program with their child is just one example of the many, many unique aspects of working in another culture. I feel a little bit more prepared this time, having already had an opportunity to work in China once before. But I know this trip is sure to be full of lots of learning, especially on my part. It is a huge privilege to work with the Five Project. Stay tuned to the Easter Seals and autism blog — I’ll keep you posted on the happenings in Anshan during my trip!

Public policy year in review

by Katy Beh Neas

2010 was a landmark year of public policy achievement. People with autism and other disabilities made significant gains in health care, cultural acceptance, and telecommunications. Here are just a few of our successes:

• Thanks to the Patient Protection and Affordable Care Act, children with disabilities cannot lose their health insurance coverage because of a pre-existing condition. As a result, families no longer have to worry about whether they can afford the services their child needs, whether they have to secure a second mortgage or whether they will have to declare bankruptcy because of medical bills not covered by insurance.
• Thanks to Rosa’s Law, children with intellectual disabilities now live in a world where the term “retarded” is no longer acceptable.
• Thanks to the Twenty-First Century Communications and Video Accessibility Act of 2010, people who are blind will be able to rely on smart phone technology and watch prime time video-described television.
• Congress maintained funding for the majority of federal programs that benefit people with disabilities.

In July we celebrated the 20th anniversary of the Americans with Disabilities Act (ADA) and the 35th anniversary of the Individuals with Disabilities Education Act (IDEA). As we look forward to next year, our agenda of ensuring equality and opportunity for children and adults with autism and other disabilities continues.

Our efforts will focus first on educating the nearly 100 new members of the House of Representatives and Senate about Easter Seals, the needs of people with disabilities and their families, and the critical role that government plays in their lives. These efforts will be closely coordinated with affiliates. In addition, we will be working with the US Department of Health and Human Services on the implementation of the Affordable Care Act and begin planning the celebration of the 25th anniversary of the federal early intervention program for infants and toddlers with disabilities and their families.

Please accept the very best wishes for the New Year from all of us at the Easter Seals Office of Public Affairs.

Police CARE about people with autism

by Debbie Smith

Here’s a story from the Northwest Press to warm your hearts for the new year. The Children And Residents Encounter (CARE) program was the brainchild of police officer Nick McCarthy, who has a child on the autism spectrum. CARE invited residents with special needs and their caregivers to an open house to meet officers.

Colerain Township Police Officer Nick McCarthy is spearheading the project. The program includes a voluntary registry of persons with special needs and cues to help officers who might come in contact with them as to how to best approach and offer help.

At the open house, residents with autism and other disabilities had a chance to meet and be more comfortable with police officers and fire fighters. They wore a variety of uniforms so the special needs residents would be familiar with whatever uniform an officer or firefighter might be wearing. All the vehicles were on display, too!

Elizabeth Schaub, whose 6-year-old son Cameron Vearil is diagnosed on the autism spectrum, said the program gives her son a chance to see the vehicles and officers up close and build a rapport.

Cameron’s mom said that having him be familiar with the officers, the vehicles and the uniforms is a great idea. The event was incredible, and it gave parents and caregivers a chance to ask questions about the program and to register for CARE. About 80 people were there to take it all in.

Thank you, Nick. You’ve made a true impact on our community. Happy New Year from all of us at Easter Seals Work Resource Center!

Tips for a happier holiday

by Beth Finke

Changes in routine. Different demands. New foods. New sounds. New textures. The holidays can be an especially difficult time for people with autism. 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 is 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.)

My husband and I are taking that idea about relaxing seriously this year. We’re waiting until after Christmas to head up to Wisconsin to celebrate with our grown son Gus in his group home. That way we won’t have to rush off to another celebration or family event — we can just hang out and have fun with Gus. We’re looking forward to the holidays this year, hope you are, too!

Shopping for a kid who has autism? Think *inside* the box

by Beth Finke

Christmas is right around the corner! If you’re still trying to figure out what to buy the child on your list who has autism, I’ve got good news. Picking out a special holiday gift for a child with autism is not as difficult as you might think.

Some people assume if they are buying for a child with special needs, they need to find something different or unusual. Quite the contrary! Children with autism have unique interests, just like everyone else. It’s true that some children with autism have very few interests at any one time, and the interests they do have can be very, very important to them. So if you are shopping for a child with autism, it might be best not to go “outside the box.”

Before choosing a holiday gift for a child with autism, ask him or her what he likes, and be ready to hear an earful! If you can’t ask the child directly, contact the parents — most are happy to let you know what their child is particularly fond of. Trains? Wheels? Springs? Maybe they like bugs. Or maps. When shopping for children with autism, you’re as likely to be choosing gifts at a hardware or office supply store as a toy store.

Not a bad thing, really. You’ll avoid the crowds!

Autism and social science — A collaboration in Chicago

by Patricia Wright

One of the great things about living in a city like Chicago is that you are surrounded by wonderful educational and cultural institutions — like the University of Chicago. Proximity often breeds relationships.

Easter Seals was privileged to collaborate with the University of Chicago in April of 2008 on a conference entitled Autism through the Lens of the Social Sciences. Some powerhouse speakers were in the mix, like Richard Grinker who published the well received book Unstrange Minds in 2007.

The conference was a wonderful mix of professionals from many fields, including anthropology, medicine, architecture, communication and education. Because the content at the conference was well received, the speakers extended their reach to others with a publication. The collection of seven papers that were presented at the conference is now available for everybody to read. Check out the content from the conference. I found it fascinating to listen to how autism influences such a huge range of professional fields.

Kyle Mayer, Easter Seals 2011 National Child Representative

by Bob Glowacki

I was happy to see the announcements in the Milwaukee BizTimes Nonprofit Weekly and GreendaleNow about the recent naming of seven-year-old Kyle Mayer as Easter Seals’ 2011 National Child Representative.

Kyle, who has autism, receives early intervention services here at Easter Seals Southeast Wisconsin. I was quoted in the stories saying:

Kyle’s story is about hope, help and answers for a young man on the autism spectrum. [His] journey as national representative will help others better understand and bring more awareness to the critical need for supports, like early diagnosis and intervention therapies, for children living with autism and other disabilities.

In a video detailing Kyle’s life, Kyle’s Mom Stephanie talks about how hard it was to get answers about Kyle’s behavior and other issues so that the family could get the help Kyle needed. It was Stephanie’s mother who suggested, “Maybe Kyle has Autism?” Stephanie went to a website and read the symptoms, and Kyle had most of them. When Stephanie visited the pediatrician, however, she was told, “Kyle smiles, he can’t have autism.”

Unfortunately, I have heard the story many times about professionals missing the signs of autism, which reduces the precious time we have to make an impact in the life of a child. if you are wondering if your child has Autism, link to the Signs and Symptoms of Autism page on the Easter Seals Web site and see a doctor who’s familiar with autism. Contact Easter Seals for services or assistance locating service providers in your area. Early intervention has a lifetime of impact.

Uniting generations

by Beth Finke

Easter Seals was well represented at an event at the National Press Club in Washington, D.C. last month. The press event was about the growing interdependence of generations in America, and it was sponsored by an organization called Generations United. I was asked to say a few words about Social Security survivor benefits, and Pam Perry was there to talk about the Easter Seals Harry and Jeanette Weinberg Inter-Generational Center in Silver Spring, Maryland. The center is the primary site for intergenerational programming at Easter Seals Greater Washington and Baltimore Region. Pam and I were able to talk a bit before the press event began and she told me that lots of kids at the inter-generational center have autism. “Some of the adults there do, too,” she added.

Pam is the mother of twins, and one of her twins has developmental delays. She wanted a pre-school both twins could attend at the same time, and the Easter Seals Harry and Jeanette Weinberg Inter-Generational Center provided that … and more!

Pam told the audience about the care and services the Easter Seals Harry and Jeanette Weinberg Inter-Generational Center provides for adults and for children with autism and other disabilities. Many of the programs are integrated so both age groups can benefit from each other.

The room was overflowing during our talks, probably because Juan Williams was doing the moderating. I hope some of the policy-makers who were there remember the stories Pam and I told at this press event when it comes to decision-making in the new Congress.

State autism profiles updated

by Denise Rozell

Our 2010 State Autism Profiles (Autism Services in the 50 States, District of Columbia and Puerto Rico) have been updated with new information through the just-completed state legislative sessions. This state-of-the-states report on autism services is a comprehensive and objective resource on how the fifty states, District of Columbia and Puerto Rico are responding to the needs of individuals living with autism spectrum disorders, including the now 23 states that have passed autism insurance legislation.

In this iteration, look for more information on state Medicaid waivers covering services to individuals with autism as well as 2008-2009 data from the Individuals with Disabilities Education Act (IDEA) state child count.

The profiles offer information on the following categories:

• demographics
• state task force
• state insurance coverage
• Medicaid, if an autism-specific waiver is available or application pending
• education and, if applicable, education programs and activities
• other state resources, if applicable
• state legislative calendars
• sponsors of autism legislation

This information is helpful to parents and other advocates when it comes to supporting autism services in your state or when writing grants and preparing for the 2011 state legislative sessions.