Two brothers with autism: a 17-year-old tells all

by Beth Finke

A while back I posted a review of Mary McHugh’s book Special Siblings: Growing Up With Someone with a Disability here on the Easter Seals and autism blog. From that post:

Mary McHugh doesn’t shy away from the troublesome aspects of sibling relationships — she addresses them. It is emotional and enlightening; I recommend this book to teen and adult siblings, as well as all professionals who support families of children with autism and other disabilities.

Five years later, a teenage special sibling has published a book of his own. It’s called Here’s What You Can Do: A Teenagers View of Joy, Laughter and Hope While Living in a Family with Two Brothers Affected By Autism and you can download a PDF of it here for free.

The author, Alek Gensel, is 17 years old, and two of his brothers have autism. His book outlines methods he uses to live in what he calls a “non-typical family.” He also shares personal experiences that give him “a certain attitude that ultimately leads me to happiness — much more happiness — than if I let the situation define me instead of defining the situation for myself.”

Gensel’s book is well organized, arranged by the “4 A’s” the author uses to manage life at home: Acceptance, Affection, Appreciation, Availability. Pretty smart stuff for a 17-year-old! Alek Gensel’s book is far from being a “poor me, wonderful me, look at my special life” memoir. It provides helpful examples and suggestions for siblings of children with autism. Best of all, just like Mary McHugh’s book, Alek Gensel’s is beautifully honest.

Let’s give all children with autism the support they need

by Beth Finke

A study published in the Journal of Autism and Developmental Disorders reports that children with autism who come from minority backgrounds are more delayed than their caucasian peers on the spectrum. Researchers at the Kennedy Krieger Institute in Baltimore assessed 84 toddlers with autism from a variety of ethnic backgrounds and found significant differences between white children and their non-white peers that spanned from language to communication and gross motor skills. Researchers say one likely reason for this delay is that in minority communities, symptoms go unnoticed longer.

The fact is, we’re just not doing enough for our nation’s youngest and most vulnerable children. Far too many infants and toddlers are being left behind — every year, we as a nation fail to identify more than one million children, all under the age of five, who have a disability or are at risk for developmental delay, and many will never catch up. But we know young children with autism can succeed in school alongside their peers if they receive early intervention services — therapies that work to strengthen their physical, social, emotional and intellectual abilities at a very young age. That’s why we launched our Make the First Five Count awareness and advocacy campaign last year. Make the First Five Count is our effort to give children with or at risk of autism, developmental delays or disabilities the right support they need to be school-ready and build a foundation for a lifetime of learning.

We can give every child an equal opportunity to learn and grow, but we need to get kids the help they need in the critical years before they turn 5. If you believe all kids deserve a chance to learn, build lifelong skills, and live up to their full potential, your elected officials need to hear from you. Please visit the Make the First Five Count site and learn how you can add your voice to this important issue. You can also download our report on the availability of early intervention services in your state.

The real story about early autism diagnosis

by Patricia Wright

Early identification of children with disabilities is important to Easter Seals. Our recent awareness campaign, Make the First Five Count, was launched to ensure the screening of all children and any child showing a delay receives appropriate early intervention services. There has been a lot of media attention since the American Journal of Psychiatry published a study last Friday about emerging research imaging to identify children as young as 6 months of age. This research isn’t yet to the level to be used by the general public, but the study was picked up by a large number of media outlets nonetheless.

The general public is clearly interested in identifying autism early, and so am I. I have seen the fantastic outcomes that can result from children with autism getting the services they need at the youngest age possible. Whether it’s brain imaging or a new behavioral diagnostic tool I am all for earlier identification, but the researchers conducting brain imaging studies have more work to complete before it can be determined if brain imaging is a good way to diagnose autism.

Current best practices in autism identification can provide a diagnosis as early as 24 months, but even though we have diagnostic tools to diagnose two-year-olds, the average age of diagnosis is still at age 4.5 years. What I’d really like to see the media cover is why this 2.5 year gap exists between our ability to diagnose autism and the age that so many children are finally diagnosed.

Kudos to the brain imaging scientists and their recent accomplishment. Thank you to the media professionals who are interested in covering early autism diagnosis, and a shout-out to all of us to keep working to ensure children with autism are diagnosed and receive quality intervention at the youngest age possible.

Shop at Food Lion and support Easter Seals

by Beth Finke

This week Food Lion launched its annual Shop&Care campaign to benefit children receiving Easter Seals services. Since 1991, the Food Lion Shop&Care program has raised nearly $30 million to help children with autism and other disabilities get a healthy start.

This year’s program runs from February 15 to March 13 in all participating Food Lion and Reid’s stores throughout the 11 southeast and Mid-Atlantic States. When you donate $1 at the register, you will receive $9.50 in money-saving coupons.

Food Lion’s goal is to raise $4 million in 2012. Here are ways you can participate:

• Make an online donation today.
• Donate $1 at check and receive $9.50 in coupons from Kraft and Proctor & Gamble (each time you redeem a coupon, these manufacturers will make an additional donation to Easter Seals, up to $50,000 each).
• Food Lion will donate $0.25 to Easter Seals for every 24-pack of Food Lion water purchased during the campaign (at participating Food Lion stores).
• General Mills will donate $0.10 (up to $50,000) for every participating product you buy. Look for specially marked packages and pallet displays in participating Food Lion stores.
• Look for specially marked packages of Breyer’s Vanilla Ice Cream. Unilever is donating $10,000 to Easter Seals.

We’re proud to partner again with Food Lion to support services that offer help, hope and answers to individuals with special needs and their families. Just think: by shopping at Food Lion this month you can feel good about helping people and save money at the same time!

Stamps of approval

by Beth Finke

In my other life, I’m a writing teacher. I give seminars on writing at libraries and conferences, and I teach a weekly memoir-writing class for senior citizens here in Chicago.

Earlier this month my memoir-writing class was all a-twitter about a new Black Heritage stamp the U.S. Postal Service had released that day honoring publishing legend John H. Johnson. Johnson was the founder of Johnson Publishing Company, which publishes Ebony and Jet magazines. A number of my writing students had attended high school with him here in Chicago, and one had even run against him for class president. “He won,” she lamented. “I was an also-ran.”

Today I learned that come this April, I’ll have even more postage stamps to celebrate: on April 2, 2012, the United Nations Postal Administration is going to issue eight autism awareness stamps. The U.N. Postal Administration issues stamps every year to call attention to different causes, and 2012 is the first year these stamps will highlight autism awareness. From a Disability Scoop article:

Artwork for the stamps was solicited from artists with autism around the globe. The eight winners include five from the United States.

“It was an extremely difficult and challenging process to choose only eight designs from all of the artwork submitted,” said Rorie Katz, creative director for the U.N. Postal Administration. “All of us were personally touched by the stories of the artists and their families who are extremely passionate and supportive about raising awareness for autism.”

These special stamps will be available at U.N. offices in New York, Geneva and Vienna, and the postage is valid for mailing correspondence from any U.N. location globally.

Obama makes academic success for kids with disabilities a priority

by Katy Beh Neas

I was invited to the White House today to hear the President announce that 10 states are getting waivers under the federal Elementary and Secondary Education Act. These waivers are designed to help states improve their public education systems.

Specifically, states are to take action to improve the academic progress of all children, including children with disabilities. Kids with disabilities have actually benefited a lot from this law and its requirement that their academic progress be measured and reported to the public. As a result, kids with disabilities have had greater opportunities to show what they are made of — that they can master grade level work like their non-disabled peers.

The President actually mentioned that improving the academic success of students with disabilities is a priority for states who were awarded with a waiver. You can read the President’s remarks online and learn more about the waivers at the U.S. Department of Education web site.

Need an autism app but can’t afford it? We can help

by Crystal Ward

I am pleased to introduce Allison Knopp, Development & Public Relations Associate at Easter Seals DuPage and the Fox Valley Region, as a guest blogger today.

Check out this new Proloquo2Go App Donation Program

by Allison Knopp

Good news for Easter Seals and autism blog readers who have been reading all of the posts we’ve been publishing lately about new apps for autism, but are worried this new technology might be too expensive: AssistiveWare (an accessibility and assistive technology company based in The Netherlands) has recognized that not everyone can afford their wildly popular Proloquo2Go communication app, so they launched a new Proloquo2Go App Donation Program.

AssistiveWare sought us out here at Easter Seals DuPage and the Fox Valley Region as a partner in this program because of our assistive technology department’s outstanding reputation. Easter Seals DuPage and the Fox Valley Region has been working with AssistiveWare over the past couple of months to develop an application process that will determine a family’s practical and financial need for the donation of the application. Any applicants will first be reviewed by our financial department for compliance with the financial need requirements of the donation program, and if those requirements are met, the application will be screened by our Assistive Technology department to determine if Proloquo2Go meets the needs of the client.

Easter Seals DuPage and the Fox Valley Region is very excited to partner with AssistiveWare to help distribute Proloquo2Go to individuals who need this support for communication. Along with AssistiveWare, we too believe Proloquo2Go can make a difference in the lives of many individuals with communication impairments.

This donation program is open to anyone in the country. For more information and the policy for the Proloquo2Go App Donation Program, email Easter Seals DuPage and the Fox Valley Region’s Assistive Technology Department at assistivetech (at) eastersealsdfvr (dot org).

Incredibly close to having Asperger’s

by Beth Finke

Every year as Academy Award time draws near our department here at Easter Seals Headquarters gets to talking about the low number of people with disabilities in popular films. This year I piped up. “How about the kid in ‘Extremely Loud and Incredibly Close’?” I said. “He has Asperger’s.” Turns out I was wrong about that, though.

The academy-award nominated film Extremely Loud and Incredibly Close was adapted from Jonathan Safran Foer’s bestselling 2005 novel of the same name. It’s about a 9-year-old boy named Oskar Schell who loses his father in the World Trade Center and becomes obsessed with finding the lock to fit a key his dad left behind. I read the book last year and thought Oskar had many symptoms of Asperger’s, and some blogs and movie reviews refer to the character as “autistic” or having Asperger’s Syndrome. In the movie, however, when Oskar tells a stranger that he was tested for Asperger’s syndrome once, he says, “Dad said it’s for people who are smarter than everybody else but can’t run straight. The tests weren’t definitive.”

A post on the FilmLeaf blog explains that when it came to casting Oskar’s part, filmmakers didn’t go the child-actor route. Instead, they contacted Thomas Horn, winner of a teen version of “Jeopardy!” It’s Thomas Horn’s first acting role, and I guess FilmLeaf wasn’t listening when he gives that line about the tests not being definitive:

Thomas Horn is a gem. Asperger’s boys do make attractive narrators, quirkily articulate, just disconnected enough from the normal feelings to make readers do some feeling of their own.

I haven’t seen the film, and doubt I will — it was too weird to think of Tom Hanks and Sandra Bullock getting starring rolls. I liked the book, and I want to keep it that way.

Reading to the kids

by Beth Finke

A couple years ago my Seeing Eye dog Hanni and I traveled to Topeka to visit Easter Seals Capper Foundation. While we were there, we met with some of their clients who have autism, we got a tour of the facilities and did a talk at Capper’s all-staff meeting that day. We had lunch with folks who’d helped sponsor our trip, and in the evening I gave the keynote at their advisory board dinner. It was a lot to pack into one day, but we enjoyed every minute of it. My favorite part of the trip? No question, it was reading to the kids at Kidlink Childcare and Preschool, their inclusive preschool and child care program for children with or without disabilities.

Apparently I’m not alone. It turns out Kansas Gov. Sam Brownback enjoys reading to the kids at Kidlink, too! Gov. Brownback is a fan of Easter Seals Capper Foundation, and he stopped by there last week to read books about pets to the kids, lining up with what the children at Kidlink were learning. I have to believe my book about Seeing Eye dogs was one of the books the Governor read to them, don’t you?

iPads and apps — a mother weighs in

by Bob Glowacki

Earlier this week I shared a guest post about autism and apps. The post was written by one of our senior therapists here at Easter Seals Southeast Wisconsin, and as a follow-up I am introducing another one of our senior therapists here. Her sons both have autism, and in this guest post she explains how they use iPad apps to help them communicate.

Mom gives autism app a thumbs-up

by Autism Senior Therapist

Our two boys have come a long way over the years, and we credit a good portion of their recent improvements to the iPad and its apps, as well as to their hard work.

Zack is 8 years old and does not meaningfully use verbal language besides a handful of verbal approximations such as “dada,” “mama,” “wee” for swing, and “ah ol” for apple. Zack does try very hard to imitate the sounds and words that he hears, but when he isn’t sure, falls back on sounds he knows like “buh” or “duh” to request items. Braeden is 7 years old and has started to use quite a few spontaneous and meaningful words within the last year or so, but not always enough to convey a clear message, especially if he is upset or hurt.

Both Zack and Braeden are currently working with therapists to improve their language skills, cognitive abilities, and social awareness. The use of an augmentative communication device has helped both boys tremendously in these areas. Where there once may have been frustration, both boys are now able to look through buttons in the Proloquo2Go app on their iPad or iPhone. They select from pictures and words of items in our home, at school, and in the community to help them express themselves. Becoming frustrated has decreased significantly now that they are able to easily ask for desired items, where once they may have gotten upset when we did not understand.

The iPad requires them to hold the device and use their hands to push buttons and scroll through pages, which means their self-stimulatory hand flapping and hand clapping behaviors have decreased, too.

The iPad is able to support hundreds of educational and reinforcing apps that both boys enjoy — their attention and focus have increased substantially. Even during therapy, the boys want to work when the iPad is involved! Both boys have been moving much quicker through their therapy programs, which means they are learning at a faster rate. The boys are more social and seem happier than ever before, which we attribute greatly to the fact that now we are able to understand what they are trying to tell us or ask for and that they get many of the things they commonly ask for, such as tickles or playing chase.

The ability to individualize the app allows it to be used exactly as needed by each owner. As an Autism Services Senior Therapist, I have encouraged countless families to invest in their children by focusing on communication. One of the ways that I do this is by promoting the iPad and the ProLoQuo2Go app. Experience has shown me that children pick up how to use the device and app very quickly. The iPad can be used as a communication device, an academic and social skill builder, a visual schedule, a reinforcer, and so much more! It is by far the best tool that I have come across to give individuals with autism a voice.