The wonders of Kansas

by Beth Finke

Last year at about this time I traveled to Topeka with my Seeing Eye dog to visit Easter Seals Capper Foundation in Topeka, Kansas. A story in the Capital Journal did a beautiful job describing our visit.

Jim Leiker, president and chief executive officer of Easter Seals Capper Foundation, explained the purpose of Finke’s visit to Kidlink, which is an inclusive preschool and child care program for children with or without disabilities.

“She has a disability and has lots of challenges,” Leiker said, “and she has lots of goals and dreams, and she’s been able to achieve those. I think that’s a really positive message for the kids.”

The Capital Journal also took a lot of terrific pictures of me, Hanni, and the kids — here’s
the gallery.

Plenty of the kids in the preschool had autism, but truth is, without being able to see them, I couldn’t tell. Some were scared of Hanni, some couldn’t stop hugging her. Some seemed shy, others wanted to jump on my lap. Which were symptoms of autism, and which were symptoms of … well … childhood? Who knew? All we did know is that something different was happening in the room that day, and that we were all having fun.

This week I got word that Arthur Capper, the founder of Easter Seals Capper Foundation, is one of the 24 finalists in the 8 Wonders of Kansas People Contest. My friends at Easter Seals Capper Foundation are excited about this, as it’s a great way to bring awareness to the people they serve — children and families living with autism and other disabilities.

Easter Seals Capper Foundation needs your help to spread the word. You can vote for Arthur Capper online, and you don’t have to live in Kansas to cast a vote. You can vote THREE times, and you need to cast your votes by October 22.

Thanks for helping my pals at Easter Seals Capper Foundation make sure that Arthur Capper becomes one of the top 8 Wonders of Kansas. Your vote will make families living with autism and other disabilities aware of the fabulous services available to them at Easter Seals Capper Foundation.

Go-to sources for making autism treatment decisions

by Patricia Wright

After the initial apprehension and anxiety of learning their child has autism, parents are often at a loss about what to do next. “What should we do?” is a fair question, given that when you Google the word autism you get 16 million hits!

In an article in the Huffington Post, jewelry designer Ariane Zurcher shared her family’s journey in autism treatment.

Desperation makes for odd decisions, and perhaps one can explain everything we’ve tried and done by simply leaving it at that. On the other hand, unless one is a scientist, and most parents of autistic children I know are not, how does one choose what will help one’s child when all we have to go on is anecdotal evidence?

I know that some of the treatments her family pursued have no evidence base. But how do families know what is and is not grounded in evidence? What makes one of those 16 million hits better than another?

As a professional I hope that my voice can provide families with a bit of guidance in discerning the plethora of content that gets promulgated. At least then, families will be better prepared to make informed decisions. They may still make decisions different than what I believe would provide the most benefit to their child, but again, I am not that child’s parent.

Here are some go- to sources to consider when making autism treatment decisions:

• Centers for Disease Control
• National Center for Birth Defects and Developmental Disabilities
• Association for Science in Autism Treatment
• National Institute of Mental Health

One other great tool for evaluating treatment options is an article from the Association for Science in Autism Treatment. The article, called A Road Less Traveled, (PDF) helps families to ask the right questions, gather the right information and make informed decisions.

As a professional it is my job to support families to make informed decisions. I will never really know what it is like to make a treatment decision for my child with autism, and I will never feel the angst parents experience in trying to evaluate those 16 million Google hits. I do know that I can be an informed voice, sharing expertise, and exhibiting compassion.

“Temple Grandin” wins at the Emmys

by Beth Finke

You may know by now that HBO’s bio-flick about Temple Grandin won five Emmy awards last month, including Outstanding Made for TV Movie. I thought you might be interested in reading how the Hollywood press responded to the winnings. A story called ‘Temple Grandin’ wins big at Emmys. But who is she? ran in Entertainment Weekly:

Who is Temple Grandin? Her name was called out seven times at last night’s Emmy Awards, where the rancher-attired Grandin herself was “a palpable presence.”

A story in the L.A. Times does a great job in answering that question:

Grandin was there, of course, as part of the HBO movie named after her, in which she was played by the Best Actress in a Miniseries or Movie-winning Claire Danes.

Born in 1947, Grandin was diagnosed as autistic at a young age due to her inability to speak or function socially like other children. As an adult, Grandin became a renowned public advocate for those born on the autistic spectrum. Her high-functioning autism ultimately allowed her to earn a doctorate in animal science, become a university professor, and pen an autobiography about her experiences.

During the acceptance speeches, all five winners paid tribute to Grandin.

Danes described her as “the most brave woman I’ve known.” [Director Mick] Jackson called her “spunky, smart and vivid,” saying he wanted to make a movie that was “never sentimental.”

Sounds to me like the director reached his goal! Congrats to all the Emmy winners, and especially congrats to the real winner: Temple Grandin.

Thank you, Mayor Daley!

by Maurice Snell

Here in Chicago, history is being made. Mayor Richard M. Daley has announced that he will not run for re-election next year.

Some people may say that it’s finally time for Mayor Daley to hand over his throne. Others don’t want this legacy to end.

I, for one, respect his decision of stepping down from the mayor’s seat as Chicago aims to move in a different direction ahead. For those who knew Mayor Daley best, he is Chicago. He’s a huge White Sox fan, he played a major role in attempting to get the Olympics to come to Chicago, he helped build Millennium Park, expanded O’Hare International Airport … the list goes on. With all that, though, nothing compares to the huge heart he has for Easter Seals.

You might remember a previous post I wrote about meeting Mayor Daley. I was fortunate enough to meet this famous Chicago mayor on several occasions. On most occasions, it was related to Easter Seals. The Mayor was a big supporter of Easter Seals Metropolitan Chicago. He was one of the main figures to take part in building the Easter Seals Therapeutic School and Center for Autism Research and was more than willing to donate some of the land of the Illinois Medical District where the state-of-the-art therapeutic school stands today.

I’m grateful to the Mayor doing his part to build a greater future for many children with autism as well as other individuals living with disabilities. Without Mayor Daley, there might not have been a “new” Easter Seals. Thank you, Mayor Daley for serving 21 wonderful years in Chicago.

Ms. Lynn’s Boys and the passing of precious time

by Lynn Dudek

Read Lynn Dudek’s biography

Time. It’s something most of us have too little of, need a whole lot more of, and feel passes too quickly. Over the past couple of weeks I’ve been reflecting on time and how it relates to the lives I’ve been involved in for about 12 years.

I’ve been a speech-language pathologist for 18 years and have focused on autism for about 16 of those years. About ten years ago I met a group of boys who will forever be referred to as “Ms. Lynn’s Boys.” As Autism Services Manager here at Easter Seals Central and South East Ohio, I started a little social skills group with Ms Lynn’s Boys. It turned out to be the first of many social skills groups I would put together, but this one will always be special.

We started meeting over the summers between school years, and after a couple years of decided to go year round. Time passed, and my boys learned to take turns, negotiate, and make choices.

More time passed, and when it became obvious I was having a child of my own, my boys were intrigued. They wondered why I was having children. One of my boys had a major meltdown when mom got the call I was in labor and he was told that after the baby was born I’d be on maternity leave. Later on, he explained. He was just upset because he wanted to make sure Ms. Lynn would still love him even though she had a baby of her own. Of course I would — how could I not? And look at that skill — perspective taking, questioning, explaining!

Time marched on. We all went through puberty — that was fun. I have two girls of my own — puberty for a tween girl and five boys with Asperger’s is VERY different. Time passed and we got through it. We learned the difference between glancing at a pretty girl and stalker eyes, how to ask someone on a date, what to do when they say no — or even better — YES!

Time passed, and, well, now Ms. Lynn’s boys are in high school. A couple of them will graduate next year. Over the years our social skills groups have changed — focus, topics, needs. We’ve stayed in the center and we’ve taken field trips. We have spent the entire hour consoling a friend who was turned down by the girl he liked. We’ve also spent time laughing until we cried, all because of the joke someone learned or the impression of Ms. Lynn they did.

I’ve learned a lot by the passing of this time. I’m a much better therapist because I’ve been permitted to spend so much time with my boys. Time has also taught me that these boys are going to be ok. They are always going to have struggles here and there and I hope they know Ms. Lynn will always be here for them.

But if time has taught me nothing else it is that the time we get to spend with the children, teens, young adults, and grown-ups with autism is precious time. We must make the most of it for those we serve so they have an easier time going through life.

Autism assistance animals allowed, as long as they’re dogs

by Beth Finke

Revisions made to the Department of Justice’s ADA regulations last July should help assure parents that children with autism can bring their assistance animals to school with them this year … as long as that animal is a dog, that is.

Department of Justice regulations (implementing Title III of the ADA) used to define a service animal as:

any guide dog, signal dog or other animal individually trained to provide assistance for the benefit of an individual with a disability.

The revisions define a service animal as:

any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability.

Notice the specific word dog in that sentence. Aside from one provision for miniature horses, other species of animals (whether wild or domestic, trained or untrained) are no longer deemed service animals. That means monkeys, parrots, rodents, and reptiles, among others, will no longer be permitted to accompany individuals with disabilities into places of public accommodation.

These regulations will take effect six months after the date they are published in the Federal Register, and as far as I can tell, the new revisions do not limit the age of the person using the service animal. So as long as autism is considered a disability under the Americans with Disabilities Act (ADA), and as long as the child with autism is with a dog that has been individually trained to do work or perform tasks for the child’s benefit,well, then it looks like the dog will be allowed to go with that child to school.

Teaching special skills to special kids

by Beth Finke

In my role as moderator of the Easter Seals and autism blog, I get a fair amount of email come-ons from companies that sell services to help people who have autism. Every year at this time, the volume of email messages like this grows. You know, beginning of the school year and all.

Take this one I got the other day. The subject heading read “back to school special” and the message talked about Laminated Photo Cards. The front of each card asks a question, the back has the beginning of an answer to that question. You read the card aloud, and the child with autism flips the card over and finds words to finish the answer supplied on the back.

On special, the cards sold for less than $30. Really?

Pardon my skepticism, but would these cards really work? Even if they did, couldn’t you make them yourself for far less money at home? I put the email aside. Until my husband came home from a visit to see our son, that is.

Gus is 23 years old now and lives with friends in a group home. Something he did on this last visit reminded my husband and me of Gus’ school days. Gus had an enjoyable afternoon out with his dad and didn’t want it to end. To let his dad know this, Gus banged his head, a behavior we haven’t witnessed in Gus in years. He and his dad took one last walk around the block then, and all was well.

When Gus was in school, he never wanted to go back inside after recess. Well, actually, that wasn’t the problem. The thing he was fighting was the quick transition. He wanted to know he was about to go in, rather than suddenly being forced inside.

Teachers and assistants tried to talk Gus through the transition, tell him it was time to go inside. Gus wouldn’t — or couldn’t — listen. They got out picture boards, augmentative and alternative communication devices. Nothing worked.

And then his teacher came up with an idea. We collected baseball caps, and minutes before it was time to go inside, one of the caps would be placed on Gus’ head. Eureka! It worked! Gus made the connection. Cap on, time to go inside.

And so, who am I to question the laminated photo cards? They’ll probably work for someone out there, someone who has tried all sorts of other methods to teach communication skills. And as for the notion of making them yourself, who has time for that when raising a child with a disability? Guess I’ll keep opening the email come-ons, you never know what might work when it comes to teaching special skills to special kids.

Dating, with autism

by Beth Finke

In case you missed it, I wanted to let you know that our guest blogger, Laura Shumaker had a piece published in the New York Times last Friday. You might remember the post Laura wrote for us in March about providing evidence-based treatment for individuals with autism through the lifespan. Laura’s essay in the New York Times — about a trip she took with her 23-year-old son Matthew, who has autism, — is a brilliant example of how he and his mom are continuing to learn. From the NY Times essay:

When I planned the trip to Washington, I could never have known that the hotel that I had picked was also the hotel that a team of female college lacrosse players had chosen and that they would be bouncing through the lobby in bikinis.

I could never have known that they would mistake the handsome Matthew for a “neurotypical” 23-year-old man and that they would invite him to join them in the hot tub later.

I could not have predicted that after a quick dinner in the hotel restaurant, Matthew would insist on waiting by the Jacuzzi “without my mother” until the girls joined him two hours later. Or that I would be hiding and watching from behind a treadmill in the bordering workout room when the girls showed up, figured out that Matthew was not what they expected, giggled nervously and vanished.

Laura found herself consoling her distraught son after that incident. The Shumakers cut their vacation short, headed back home.

But in a strange way, I was grateful for the incident at the hotel. He wanted to meet women. He wanted a relationship, and I needed to help him.

They say that when it comes to parenting, your job never ends. This is all the more true when you have a child with autism. How lucky Matthew is to have an honest and understanding mother like Laura.

Lose the Training Wheels, and gain so much more

by Crystal Ward

Read Crystal Ward’s biography.

Every kid wants to ride a bike, but kids with special needs have special challenges. For most children, riding a bike seems second nature. The child pushes the pedals with their feet and the bike moves forward. However, for some children with autism and other special needs, the thought of balancing, steering, and pedaling all at the same time can prevent them from giving cycling a try.

A unique program called Lose the Training Wheels offers children with autism, Down syndrome, mild cerebral palsy and other motor planning disabilities the chance to learn to ride a two wheel bike in an environment that is safe, accepting … and FUN! Earlier this month, Easter Seals DuPage and the Fox Valley Region had the wonderful opportunity (thanks to a grant from Blue Cross and Blue Shield of Illinois) to host the week-long Lose the Training Wheels program for our second summer in a row.

Lose the Training Wheels was designed by Dr. Richard Klein, retired mechanical engineering professor from the University of Illinois. He developed a series of bicycles that are fitted with special rollers and other adaptations that allow children with disabilities to gradually progress from a wide balance base to a conventional one without the dreaded training wheels.

Throughout the Lose the Training Wheels week, physical and occupational therapists, along with several eager volunteers, help each child progress through the adapted rollers. They teach them bike safety, balance, body coordination and provide additional security while the child learns by running along side them.

Parents watch anxiously from the sidelines waiting to see if their kid will be the next one “up” on two wheels. With nerves and anticipation they swap stories, resources, and encouragement. Cheers of “you can do it!” or “nice fall!” or “you got it, you got it” are heard throughout the gym, and each time, whether the child takes a tumble or just keeps on riding, there is a fan club encouraging them all the way.

This year, over 17 children with Autism, Asperger Syndrome, or PDD participated in the program and all but a few were able to successfully learn to ride a two-wheel bike. Soumaya, age 8, was one of our lucky kiddos who learned during the very first days of the program. Her mother, Zoubida, shared the reasons why it was so important that her daughter learn this skill. “Because Soumaya is a child with sensory dysfunction, learning to ride a bike will help give her body more sensory input, help her focus her attention, help her fit socially with other children on our block,” she said. “And it may serve as a means for transportation for her as she grows older.”

We know how important this program is to the children we serve at Easter Seals DuPage and the Fox Valley Region. We hope to receive continued funding next year so that we can help more children have success stories … just like Soumaya’s!

Book review: Anna Saldo-Burke’s Green Mittens Covered Her Ears — A Look at Autism

by Patricia Wright

I love it when people ask how I got interested in autism — it gives me a chance to talk about Shari! Shari has autism, and I provided respite care for her when I was in high school. That experience, and the relationship that developed between Shari and me as a result, was incredibly influential in my life.

Memories of Shari came flooding back to me when I read Anna Saldo-Burke’s Green Mittens Covered Her Ears — A Look at Autism.
The book is about a high school classmate who had autism, and it served to remind me how crossing paths with someone like Shari (or in Dr. Saldo-Burke’s case, Jessica) can have a profound influence on the choices we make in life. The author is a 27-year veteran teacher in both Special and Inclusive Education classrooms, and she sees the need to create awareness and provide understanding about others who are different.

Saldo-Burke’s short story has wonderful illustrations, and the book gives the reader a strong sense of what it is like to attend high school as a person with autism. It also gives the reader a look at what it’s like to attend high school with a person who has autism. The descriptions of Jessica’s challenges in navigating high school life as a person with autism are enlightening, but what I really appreciated in this book is the way the author describes how much Jessica meant to her. Their time on and off-campus together clearly influenced Dr. Saldo-Burke to go on to work in inclusive education.

Green Mittens is a great short read. It celebrates Jessica’s learning and success in high school and beyond, and it demonstrates how people with disabilities contribute to our society in so many ways.

PS: If you want to read more about Shari, the young woman who influenced my own life in so many ways, you can read a story her dad wrote about her for Fathers Network, a site providing information and resources for fathers, family members, and care providers of children with special needs.