Autism is treatable

by Patricia Wright

You already know that April is Autism Awareness Month. You probably also know that this Saturday, April 2, is World Autism Awareness Day. But here’s something you might not be aware of: Easter Seals is one of the leading non-profit providers of services for children and adults with autism.

Today, one in 110 children are diagnosed with autism. Getting the right support at the earliest stage in life can help a child gain the skills he or she needs to be successful, and there’s an increasing need for funding to support these services. Easter Seals serves more than 16,000 individuals with autism, and we have seen firsthand that people with autism, at any age, can make significant progress.

Visit our Web site to learn more about autism and find helpful Easter Seals resources, like our Autism State Profiles, a state-by-state report of autism services.

Autism is a baffling, life-long disorder. While there is no known cause or cure, or a known singular effective treatment, we at Easter Seals want to make sure you are aware of one important fact: autism is treatable.

All this … and Zamboni rides too!

by Bob Glowacki

Autism Awareness Month is full of activities here at Easter Seals Southeast Wisconsin.

It all starts this Friday, when hundreds of Easter Seals Southeast Wisconsin families, staff and friends will attend a special night with the Milwaukee Admirals hockey team. Our Act for Autism event is intended to increase awareness of autism in the Milwaukee area.

Friday’s Admirals game will feature our Color Guard presenting the colors, our Walk with Me Ambassadors riding the Zambonis and some special thoughts from our National Child Representative, Kyle and his Mom, Stephanie.

But that is just the beginning! Our friends from CVS will be selling autism awareness pins all month, Cousin’s Sub shops will have special dine in days, and tasty cookies from National Bakery will feature the autism puzzle pin.

For the “BIG kids,” Blu cocktail lounge in the historic Pfister hotel is featuring a special celebrity Blu-tender event on April 12. And wait. There’s more! Rock Bottom Brewery has created a special Lily Lager, plus they’ll be donating a percentage of profits from their Easter Brunch to Easter Seals autism services.

Our friends at the Milwaukee BizTimes will be highlighting these events and chronicling the needs of families living with autism in a special article this Friday. At Easter Seals Southeast Wisconsin, one out of every ten individuals we serve is affected by autism. Link to the autism awareness page of our web site to see all the ways you can help us raise needed funds for autism services.

Autism Awareness Month, and a year’s milestones

by Matt McAlear

Maybe I’m just too tired to think straight … I’ve been up since 5:00 a.m. with an “excited to start the day” ten-month-old! But it’s almost impossible to believe that we are approaching another Autism Awareness Month already. This year has flown by, and it’s been another exciting one at Easter Seals Bay Area.

In very precarious times to be a service provider in California, we continue to open new programs, expand current services and grow our pool of world-class staff. A project that began with an idea over lunch between friends last April has come to fruition and we couldn’t be more excited. The Easter Seals Bay Area Pediatric Activity Center (PAC) opened its doors in Oakland earlier this year. The PAC is a state of the art facility dedicated to providing speech, occupational therapy, physical therapy and autism specific services to the pediatric community. We are so thrilled to bring this service to children and families in the East Bay, and the response from the community has been wonderful so far. Keep your eyes open for more information on summer programming and free monthly events.

Our Kaleidoscope program, located in Dublin, has long been a staple in the community. Kaleidoscope provides after-school and social recreation opportunities to children aged 5 to 22 with special needs. Just last month we received the “Organization of the Year” award from the City of Dublin. The award came complete with a “and the winner is…” Oscar-style dinner, a mayor’s proclamation, and probably most exciting: a float in the City of Dublin St. Patrick’s Day Parade! What could possibly be more fun than throwing candy to a cheering crowd?

Our Autism Project continues to expand its reach serving children and their families across the Bay Area. Our team has grown in the past few months to include two key members: Dr. Melissa Newman, a clinical psychologist, and Dr. Ian Cook, a developmental psychologist, who are supervising the South Bay and East Bay programs respectively. We are thrilled to have these two experts join the ranks at Easter Seals Bay Area.

We are excited by the opportunities ahead and encourage everyone to check out our Easter Seals Bay Area website for all of the latest happenings.

Thanks Mr. Jobs!

by Patricia Wright

I’ve been known to go a little gaga over the goings-on at groovy technology companies like Apple. I’m an outsider, but sometimes I get a glimpse when these companies broadcast their meetings to the public. When Steve Jobs announced the release of the iPad2, I watched the hour-long video with rapt attention. I am already an iPad owner and was curious what this new device might have to offer. Not to mention that the bells and whistles of an Apple presentation are always entertaining.

My entertainment factor was multiplied significantly at minute 13 of the presentation. That’s when Jobs cut to a 2 minute clip about one of my favorite topics — autism! The iPad has been successfully utilized as a piece of assistive technology in programs for children with autism. Jobs found the use of the iPad with children with autism worthy enough to include in his appearance.

The use of assistive technology, including the iPad2, is a great tool to improve access to work, recreation and education for individuals with autism. Millions of people watch these Apple presentations. By highlighting autism the way he did, Jobs is helping those millions understand that people with autism are capable of meaningful, purposeful lives. Great assistive technology and increased awareness of the capabilities of individuals with autism is a great combination — Thanks Mr. Jobs!

Catching up with the Squiggle

by Beth Finke

A couple years ago I linked to a blog a father wrote about his son’s autism diagnosis. The post was written by Matthew Baldwin, a computer programmer from the Seattle area who does freelance writing on the side. He’s a great writer. Lots of people enjoy reading his Defective Yeti blog.

Baldwin has kept this personal blog for years, covering politics and music and movies and most of all, things he just finds odd or humorous. After his son was diagnosed with Autism Spectrum Disorder (ASD). Baldwin started blogging about autism, too. He keeps the names of his wife and son anonymous in the blog, referring to her as “Queen” and to him as “Squiggle” — “Squig” for short. Baldwin’s son turned seven last month, and I found the post about Squig’s birthday so moving I’m going to excerpt a bit of it here.

During a recent meeting with my son’s support team in which we were charting out his plan for the coming years, we took a moment to inventory his strengths and challenges. Number one on the list of his advantages was “charisma”.

Squig has an easygoing manner that people find endearing. His joie de vivre is infectious. Other kids are drawn to him. Like all young seven-year-old boys he has moments of defiance and aggression and omg will you stop running in the kitchen for just one second will you STOP?!! But on the balance he is just the most delightful kid to be around.
And, as a result, people will really go to bat for him. Whenever we encounter obstacles, some indefatigable member of Squig’s support team will tuck him under her arm and run into whatever endzone we are currently striving for, knocking opponents left and right. They will totally sweep the ice as he glides down the curling sheet toward a developmental house (wanted to include a sports analogy for my Canadian readers as well).

To be fair, they would do this for anyone in their care — people who work with special needs children are the most beneficent and indefatigable you will ever meet. But, even so, Squig has amassed an impressive cheering section. He is well loved.

That gives you an idea of how this guy thinks. And writes. Visit the defective yeti blog to read more. Trust me, you won’t be disappointed.

TV’s “Parenthood” … have you tuned in?

by Kristen Barnfield

Read Kristen Barnfield’s biography.

My favorite show on TV right now is NBC’s Parenthood. I can’t get enough of the trials and tribulations of the “very large, very colorful and imperfect Braverman family.” I’m especially hooked when it comes to any plotline involving Max, a bug-loving, roller-coaster-riding, pesky little brother.

In the last episode I saw, Qualities and Difficulties, Max learns (in not the best way) that he has Asperger’s Syndrome. Now that the cat’s out of the bag, Max wants to know about autism — what is it? His parents sit down with Max, and their explanation isn’t anything Max can really understand. His lack of response triggers his parents’ emotions. When Max’s mom starts crying, Max asks to go to his room and runs off. Max’s dad tries to give his wife some support, but she tells him to stop and dissolves in a puddle of sobs.

These scenes were so striking. I felt so strongly for Max and his parents that I found myself tearing up as they struggled to find words. What went through Max’s head in that moment? His parents’? Why did Max’s parents choose to hide his autism diagnosis from him anyway? What’s that moment of realization like for people living with autism? How do kids feel when they learn they have autism? And as a parent, how do you explain to your child that he or she has autism — and what it means?

I turned to Parenthood’s Ask the Experts blog for a little more insight. Their expert, Roy Q. Sanders, M.D., says most children with moderate or high-functioning autism/Asperger’s come to a developmental point when they realize there are things “different” about their lives. They may not be able to understand what exactly is different, but they can recognize that they have therapies or appointments that other children do not. Or they may notice that they don’t like the same things that other children enjoy. Or they may wonder what their parents are talking about with the doctors and therapists they bring them to visit.

Often they might feel that having to do all these extra things, or other people not liking what they like, or not following their perception of the rules, is “unfair” and a clear violation of their rights. Often, when told for the first time that they have been given a diagnosis with the label autism, they protest and honestly ask “Why? There’s nothing wrong with me.” I especially liked Sanders’ closing thoughts:

For children with autism, developing a realistic sense of their autism diagnosis to the best of their understanding is empowering for them and for the people in their lives who strive to guide them and love them. Having a name for something is a powerful tool for navigating the world — a world that for someone with autism is often a confusing place where you can use all the power you can get.

Reading all this got me thinking about our Easter Seals and autism blog, what would our readers think? How did they react to this episode? What tools have you found to help navigate conversations about autism with your loved ones? If you watch parenthood, I’d love to hear from you.

Haven’t seen the show yet? Tune in! I’m certain you’ll fall in love with the Braverman’s just like I have. The next new episode airs Tuesday, March 29 on NBC. Trust me, you won’t be disappointed!

What can an iPad do for a kid with autism?

by Beth Finke

Easter Seals Maine was featured in a story on WLBZ 2 TV in Portland, Maine about three-year-old Jeremiah, who uses iPad technology to communicate with his teachers and parents. Jeremiah is on the autism spectrum and receives speech therapy from Easter Seals Maine.

What I especially liked about this story was the way it spelled out some of the ways kids with autism can use iPads to express themselves.

His father, Zak Gould, suspected Jeremiah might respond well to the touch screen because he is a visual learner. Sure enough, they started playing with apps that allowed Jeremiah to make fireworks with the touch of a finger or pop bubbles, and he loved them. Other apps Jeremiah uses will show 3 photos on the screen, and the computer will ask him verbally to touch a specific picture. The computer congratulates him for picking the correct picture.
Jeremiah’s mother, Elise Gould, says she didn’t realize how many words her son comprehended until he started using the iPad. “It was almost like getting to know him a little bit more, and I think that was nice for him to be able to say, ‘Hey! I know how to do this, and I can do this!'”

Julie Fagone, Jeremiah’s speech language pathologist at Easter Seals Maine, was also quoted in the story. “We’ve seen an increase in his pointing, which is a big deficit in kids on the autism spectrum,” she said. “They don’t do these natural things, like pointing to call attention to something that interests them.” The story also points out how practical the iPad can be to families with autism.

His parents are teaching him to express his wants and needs by pointing at pictures on the iPad. It’s easier for them to take when they leave the house, rather than a large book full of pictures of things Jeremiah might ask them for.

New ADA regulations about service dogs start today

by Beth Finke

Today’s the day … starting today, March 15, 2011, only service dogs and trained miniature horses are protected under the Americans with Disabilities Act. Monkeys, rodents, and reptiles, among others, are no longer permitted to accompany individuals with disabilities into places of public accommodation.

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 taking affect today 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, are no longer permitted to accompany individuals with disabilities into places of public accommodation.

In the old days, having a service animal meant you were blind and traveled with a guide dog. Today, dogs help people cope with seizures, monitor medication or help minimize behavior troubles for children with autism. The potential of service animals is tremendous.

Unfortunately, the wider acceptance of service animals tempted some people to abuse the system. I’m in public all the time with my Seeing Eye dog, and I get an earful of stories about helper parrots who peck at shoppers in stores, comfort pigs going crazy in airplanes, even a therapeutic rat that quells anxiety in his owner but causes anxiety to others.

Under the revised regulations people can still use other animals like these to help them in their homes, but starting today they can no longer claim the ADA gives them the right to bring them to places of public accommodation. These revisions come after some disability advocates asked the Department of Justice to crack down on people who were faking or exaggerating disabilities in order to get special privileges for their companion animals.

My hope is that limiting the number of allowable species might stop erosion of the public’s trust in our well-behaved, helpful — and absolutely necessary — service dogs.

Keeping an eye on legislation

by Katy Beh Neas

On Wednesday, March 2, 2010, President Barack Obama signed a temporary appropriations bill that would fund federal operations until March 18. The current continuing resolution was set to expire on March 4. The resolution cuts $4 billion in spending by targeting programs that President Obama has already marked for elimination and reductions. The bill was approved by the House of Representatives on Tuesday, March 1 and by the Senate on March 2.

Easter Seals actively supports people with autism and their families by appealing to Congress and federal agencies in Washington, D.C. to create and support programs that help people with disabilities gain greater independence. We will continue monitoring legislation covering the remainder of FY2011 (which ends September 30) in support of people with autism and other disabilities. Sign up for Easter Seals’ legislative email updates to stay on top of breaking news from Capitol Hill.

Apples and autism

by Crystal Ward

An article in Chicago Special Parent talks about a $40,000 grant Easter Seals DuPage and the Fox Valley Region has received from the Tellabs Foundation. We’re using the grant to buy 12 iPads, eight iPod Touches and apps specifically for use with children who have autism. Our assistive technology therapist Kathleen Post explains in the article how assistive technology devices will help our kids.

“Children with autism face varying degrees of challenges and every child is different,” says Kathleen Post, Easter Seals assistive technology therapist. “Assistive technology devices can enable these children to have a simple way to communicate by using relevant images to build sentences and an audio component to share their message.”

With this new technology at their fingertips, our therapists will be able to give parents hands-on demonstrations. This way parents can give these devices a try before making the important decision to purchase one for their child. Therapists will also work with each child individually to recommend specific apps for parents to purchase.

We express our sincere thanks to the Tellabs Foundation for providing us with this state-of-the-art technology to better serve our clients with autism and other disabilities. The grant will truly help us open a new world of communication for these children. Visit the Easter Seals DuPage and the Fox Valley Region web site for upcoming parent trainings and more information on Assistive Technology Therapy.