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.

Special joys, special challenges

by Beth Finke

Here’s an understatement for you: holidays can be difficult for families with autism. An article called Special Joys, Special Challenges in Bay Area Parent offers holiday tips and advice to help parents of kids with autism and other disabilities enjoy the holidays rather than dread them. The story quotes staff members from Easter Seals Bay Area:

Matthew McAlear, the vice president and chief program officer for Easter Seals Bay Area, suggests using role-play to give children practice ahead of time in dealing with new social situations. He also suggests they work together with parents to write a “social story” that incorporates all the elements of an upcoming event or visit to better prepare them for that situation.

Easter Seals Bay Area clinical supervisor Michelle Ficcaglia is also quoted in the story, encouraging parents to have their kids help plan for the trip themselves.

“Counting down a trip by marking off days on a calendar with your child is often very helpful,” says Michelle Ficcaglia, Ph.D., the clinical supervisor for the East Bay Autism Project. “Additionally, you can try to prepare your child for a plane, car or train ride by reading books about the mode of travel you will be using.”

The story features many other tips and ideas from Matt and Michelle, plus advice from other experts, too. As the author so wisely puts it:

Celebrating the season with special-needs children has its own set of challenges — as well as unique joys.

Apple takes a bite

by Patricia Wright

There’s been a lot of buzz going around lately about the wonderful apps on the iPad and iPod Touch for people with autism. The people who create these new technology tools promise increased communication, academic growth and creativity. In one of my past lives, I worked for an assistive technology company called AbleNet. I’ve always had a fondness for technology, and I think what I am most excited about with these new tools is the concept of Universal Design.

Universal Design implies that tools like the iPad and iPod Touch are accessible to everyone — including those with disabilities. In an article in the Wall Street Journal, Steve Jobs commented on the easy-to-use design of the iPad for people with disabilities.

Apple Chief Executive Steve Jobs said in an interview that he hopes the easy-to-use design of the iPad has helped children with special needs take to the device more quickly, but that its use in therapy wasn’t something Apple engineers could have foreseen.

“We take no credit for this, and that’s not our intention,” Mr. Jobs said, adding that the emails he gets from parents resonate with him. “Our intention is to say something is going on here,” and researchers should “take a look at this.”

True Universal Design benefits everybody — and we may be getting a glimmer of what Universal Design looks like with the iPad. But all is not rosy with the technology. The iPad may be close, but it really is not accessible for all learners. Example: Individuals with physical disabilities can not use switches to access all features on the iPad.

When it comes to individuals with autism, I am curious about the support that is provided for these applications. Communication companies such as Dynavox and Prentke Romich (two of the largest augmentative and alternative device companies) have trained speech and language pathologists on staff and dedicate thousands of hours and hundreds of thousands of dollars toward developing their communication devices and the software that supports communication. I am not sure if apps developed as an afterthought by individuals with no professional training have gone through such a rigorous design process. Can I be sure someone will be available to me for technical support if I experienced barriers while attempting to put the apps into practice? I don’t think so.

I love technology. I think the iPad and iPod Touch are great tools for people with autism. Most of us have not replaced our computer with these additional tools. We have simply added another piece of technology. Individuals with autism can truly benefit from the iTechnology, but for now, it should be in addition to their dedicated communication devices.

Writer looking for adults with autism between ages 15 and 65

by Beth Finke

I am pleased to introduce John Duffy as our guest blogger today. John is the father of a young man with autism and an associate professor of English at the University of Notre Dame.

Seeking interviews of adults on the autism spectrum
By John Duffy

I am writing a book on the history of autism and wish to include the voices, experiences, and perspectives of adult men and women on the spectrum. The book will trace the ways that the language used to describe, diagnose, and explain autism has changed from the 1940s until the present time.

I am interested in speaking with people who were born between 1945 and 1995. I am also interested in speaking with family members of non-verbal autistic adults.

Interviews will be semi-structured, meaning that I will come prepared with questions about childhood, family, work, and other topics but the person giving the interview may direct the conversation as she or he chooses.

Interviews will be arranged at the convenience of the person or people being interviewed. I am willing to travel or to conduct interviews by Skype or by email. The confidentiality of all participants will be respected. If you or someone you know might be interested in being interviewed, I may be reached at my Notre Dame office by phone at 574.631.9796 or by email at jduffy [at] nd [dot] edu.

Thank you!

Volunteering at Chicago Bears games

by Maurice Snell

During the course of the NFL regular season, Some staff
and parents of clients at Easter Seals Metropolitan Chicago have been volunteering to work at Chicago Bears games. We work the concession stands, and ten per cent of the proceeds goes towards our Adult Vocational program. Through our Autism Therapeutic School programs in Chicago and Tinley Park, Easter Seals Metropolitan Chicago provides opportunities for vocational training and meaningful work for adolescents and adults with autism and other special needs.

I’m proud to say that I’ve put my two cents in already and I’m ready for more! The first game I worked in was the October 24 game against the Washington Redskins. Another game I worked was the November 14 game against the Minnesota Vikings. The typical work day began with inventory: with lots of stuff to be counted. We had to count all of the food items, packages, cups and many other accessories before and after the game. Then it was preparing the food (cooking hot dogs, polish sausages, nachos, etc.) before the gates of Soldier Field open to the public. Once the gates open, it’s game time!

Thousands of fans swarmed into the concourse area looking for something to squelch their appetites. It was a madhouse at our concession stand, especially during halftime. We were extremely busy giving the customers what they wanted. I was extremely busy at my position as cashier. I kept calm and collected, processing different orders for the happy Bears fans. It was chaotic at times, but we were able to make it through the entire 60-minute game. And really, with all the time outs and other breaks, an NFL game lasts three hours!

The experience working at a Bears game can be nerve-racking at times, but we were able to raise lots of money going to a great cause. We’re fortunate to raise thousands of dollars for the Easter Seals Adult Vocational program. As an individual with autism, I believe in giving back. That is my mission being a part of Easter Seals!