Pop the cork… and the bubble wrap! Autism wallpaper wins!

by Beth Finke

Happy Bubble Wrap Appreciation Day, everyone! As if the invention of bubble wrap 
alone isn’t enough reason to celebrate, we also have outstanding news about this year’s Bubble Wrap® Competition for Young Inventors.

Yes! Get out your dancing shoes! Sealed Air Corporation announced the big Bubble Wrap Invention winners today, and Hannah Haas was the grand prize winner!

You remember Hannah, don’t you? She’s the 13-year old from Charlotte, N.C. I blogged about last month. Hannah designed sensory wallpaper that she describes like this:

Wallpaper designed to engage and stimulate children with autism through the combination of a textured bubble surface containing large and small bubbles, and a calming, blue wallpaper background.

You can watch a video about Hannah’s invention via MPG or Flash.

I just listened to the Flash version and was happy to hear that Hannah’s design includes a plan to replace the wallpaper with new sheets of bubble wrap once all the bubbles are popped. She thought of everything. No wonder she won!

Congrats, Hannah. Time to pop the cork — and the bubble wrap!

Will my child have autism?

by Patricia Wright

I’m at an age where many of my friends are making decisions about whether to have children. None of my friends have children diagnosed with autism, but they know about my interest and expertise in the subject. So they ask me if there is a way to prevent their child from having autism. 

My answer has always been simple. “Not to my knowledge.”

Now that the University of Washington has launched the first autism prevention study, my answer may change.

The research project will study 200 infants with siblings who have autism and assess whether early intervention for this high-risk group can prevent the development of autism.

The 200 infants participating in this research will be watched closely — not only by the researchers, but by many concerned parents. Parents interested in preventing autism will be anxiously awaiting the results. Me, too.

Book review: Nancy Wiseman’s “Could It Be Autism?”

by Beth Finke

When it comes to treating autism, the earlier the intervention the better. That’s why I like Nancy D. Wiseman’s Could It Be Autism?: A Parent’s Guide to the First Signs and Next Steps so much. Her message is simple: if parents are concerned about a child’s social, emotional or behavioral development, they should look for answers now.

Not later.

Not in a few months.

Now.

Wiseman is the mother of an 11-year-old with autism. She is also the founder and president of a non-profit organization dedicated to educating parents and pediatric professionals about the early warning signs of autism.

Autism is a lifelong condition, but early action can make it less devastating. Wiseman’s book encourages concerned parents to go with their guts, act on instinct and get a diagnosis.

Karate kids with autism

by Beth Finke

Okay, Monday I blogged about yoga and autism; Wednesday I blogged about surfing and autism. So heck, why not finish my trilogy with a blog about… karate and autism.

A friend on our Easter Seals MySpace page teaches karate in Chattanooga, Tenn. Sensei Green is no ordinary karate instructor, though: he teaches kids with special needs.

Among his students are two boys with autism who compete in the non-handicap division of the USA-N.K.F. (National Karate Federation) Karate Nationals. That is serious karate – the real deal.

The results of some Google-ing tell me there’s a children’s hospital in California that uses karate to teach social skills to children with autism.

I also found a blog post about a boy with autism who liked karate class at first, but then later, not so much:

This last week, we knew after two or three minutes that it was going to be a long class. Ds had no focus whatsoever, spinning, playing with his hands, and tilting his head the entire time. The sensei must have picked up on it, and decided it was better to let it go, but it never improved. He barely tried what they were instructed to do, and he was always backwards. His eyes were so vacant, and he seemed so out of it, for lack of a better word.

So, maybe it’s just like yoga and surfing. They appeal to some of the people all of the time, all of the people some of the time.

As for me, it’s Friday, the weekend is looming, and all this talk of surfing and karate is wearing me out. It’s supposed to be cold this weekend, maybe I’ll stay home and meditate.

You know, open my mind more to yoga. “Ohm… “

Hang ten: surf therapy for children with autism

by Beth Finke

I live in Chicago. I don’t know a whole lot about surfing. When I saw a blog about a surf therapy program for children with autism, I wasn’t sure if it was a joke or not.

So I asked an expert.

Dr. Patricia Wright lived in Hawaii before accepting her position as National Director of Autism Services at Easter Seals. That’s right — she moved from Hawaii to Chicago in January 2007.

Now, that’s dedication!

But back to surfing. “This is a very cool program!” Patricia told me. “They had an event every year in Hawaii. HUGE names in surfing would show up and surf with the kids.”

There are huge names in surfing? Who knew?

Patricia said she did water safety a couple of times for the event, and it was lots of fun. Maybe it’s worth a try? That blog mentioned a group called Surfers Healing offering a free one-day camp in California for children who have autism. Surfers Healing also happens to be an Easter Seals MySpace friend.

Who knows, maybe this could catch on in Chicago. I’ve heard some folks surf right here on Lake Michigan from time to time.

I wouldn’t expect any surf therapy programs to spring up here real soon, though. The predicted high temperature this weekend: nine degrees.

Book review: Dion and Stacey Betts’ “Yoga for Children with Autism Spectrum Disorders”

by Beth Finke

My husband loves doing yoga. Mike can spend an hour stretching on a mat and end up feeling relaxed and invigorated.

And me? After just two minutes on the mat, I’m frustrated. Rather than relieving my stress, yoga gives me more anxiety — it just confirms how uncoordinated I am!

I picked up Yoga for Children with Autism Spectrum Disorders hoping it might change my attitude, you know; make me “more flexible.”

No luck.

But if you enjoy yoga the way Mike does, and you would like to maybe share your interest in yoga with your child, this book could be a good resource. The book provides a guide to basic yoga poses along with suggestions of modifications for the children.

One of the authors, Stacey Betts, has a son with autism. She and her sister Dion are yoga fans, and they encouraged Stacey’s son to join them on the yoga mat. Dion and Stacey Betts don’t intend their yoga routine to “treat” autism. They just hope it might do the same thing for children with autism that it does for them — help reduce stress and anxiety and increase balance. They believe yoga could also help children with autism improve flexibility, lower sensory defensiveness, and generally feel better in their own bodies.

I’m sure there are children with autism who will like (and benefit from) yoga the way my husband Mike does. For them, this book could be helpful. As for the rest of us? I guess we’ll just keep searching for our mantra.

Support for families with autism

by Beth Finke

When Gus was little, and every minute of every day was spent dealing with his disability, a social worker suggested Mike and I go to a parent support group.

I told the social worker this idea was absurd.  

Why on earth would Mike and I spend a treasured evening out talking with other parents about the very thing consuming us all day long? She pestered… and pestered.

Finally we gave in, just to get her off our backs.

Our babysitter was late that night. We apologized to the support group. “Babysitter?” one parent asked. “Don’t you know about respite?” Turns out a social service agency in our area provided free respite care for children with disabilities. Who knew?

Other parents at the support group, that’s who.

They explained what we’d have to do to qualify. We filled out the paperwork, and Gus received respite care for years afterwards.

What’s the only bad thing about all this? I had to admit to the social worker that she was right!

In case you missed it, Patricia Wright, National Director of Autism Service at Easter Seals, left a comment to our blog post about autism being a hot topic in the presidential campaign that includes a great resource for finding an autism support group near you:

The Autism Society of America has a portion of their website that is dedicated to assisting people to locate their local support group. You may be able to gather information from families who have had success in finding the supports that they need for their children in your local area.

Still not convinced you should give support groups a try? Then visit our Stories of Hope page to read how an autism support group helped Jayne, the mother of a 10-year-old with autism.

… Jayne admits that after his diagnosis she was so busy ensuring he had the early intervention therapy he needed, she did not always recognize her own need for support and understanding.

That was until she found a support group provided by the Easter Seals New Hampshire Autism Network’s Family Support Program.

“Early on I would have said I didn’t need to talk about it,” she says. “I was just plugging away at getting him services. Now I know how nice it is to have a network of people who get it.”

I don’t mean to pester here, but heck, at least give a support group a try. You never know what you might learn. And as painful as it was telling that social worker she was right, the years of respite care were well worth it!

Are parents of children with autism “heroes?”

by Beth Finke

Our son Gus has obvious physical and mental disabilities. My husband Mike takes Gus out and about quite a bit, and when strangers see Mike comforting Gus after a fit, or feeding Gus in a restaurant, they call Mike a saint… or a hero.

Mike hates this.

“It’s an insult to Gus,” he says.

Now, a collection of stories about parents of children with autism has some bloggers questioning the meaning of the word “hero.”

An about.com review of Autism Heroes by Barbara Firestone said the 38 black and white portraits of parents and families in the book are lovely, but nothing else leads them to recommend the book.

… The gist: parents are heroes if they do not reject their children with autism.

A blog called Autism and other things that consume me doesn’t mince words when dismissing the hero label:

As the mother of a child with autism I get a lot of “I could NEVER do what you do, Julie!” from people. I don’t get it. If their child had autism, they’d stuff him in the garbage and walk away? They’d return him to the hospital as defective? They’d chain him in the basement and pretend he doesn’t exist? Being a parent to a child who happens to have this disorder makes me and other parents in this situation heroic?

Not sure what I think about heroism in relation to parenting children with disabilities. Also not sure what I think of Firestone’s book. I’m guessing the hero title might actually be a comfort to some parents out there, though. The hero title might motivate some parents to continue the challenging work of raising a child with autism. So hey, if this compilation of eulogies brings guidance and support to even a small number of parents of kids with autism, well, maybe Firestone is the biggest hero of all. 

Today’s the deadline: share your ideas with autism committee

by Beth Finke

In December, Patricia Wright wrote about Dr. Stephen Shore’s appointment to the Department of Health and Human Services (HHS) Interagency Autism Coordinating Committee.

I had the pleasure of meeting Shore at our 2007 Easter Seals Training Conference in April. Shore is a well-known public speaker, and at the conference he provided a personal perspective on the experience of living with autism. His presentation was truly one of the highlights of the conference. There were over 400 people in attendance that day and they walked away with a much better understanding of autism… Shore’s appointment gives the Interagency Autism Coordinating Committee the “personal touch” it needs.

The Interagency Autism Coordinating Committee is developing a strategic plan for research on autism and it wants your suggestions.

We are interested in receiving your input and ideas about what are high-priority questions and issues for advancing research on ASD. We ask for your constructive and specific suggestions…

It’s important to note that when the Interagency Autism Coordinating Committee talks about “research” it is not limiting itself to scientific studies on genetics, the environment, neuroscience, and so on. In fact, delivery of services tops their list of issues:

What topics or issues need to be addressed to advance research on the:

1. Treatment of ASD?
2. Diagnosis of ASD?…

The list of autism questions goes on from there.

To leave suggestions in response to the Request for Information, email iacc@mail.nih.gov no later than today.

Tell them you are responding to their Request for Information (RFI): Research Priorities for the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorders.

Child with autism, parent with autism

by Patricia Wright

A New York Times article about a child’s autism diagnosis described how the parents were left “thinking carefully about their own behaviors and histories.”

I know first hand how the delivery of an autism diagnosis can lead to questions from parents about their own lives. One of the most poignant experiences I had as an educator came when a father chose not to participate in the information-gathering process for his son’s diagnosis.

The educational team returned to tell the parents their child met the criteria. Their son would be given a diagnosis of autism. The mother simply said, “I knew it.”

The father remained silent.

He left the room without speaking a word.

The father returned to school the next day, diagnostic information in-hand, and the list of criteria full of checkmarks. “These checkmarks are about me,” he said. 

The father’s primary concern was not about himself. He was worried his self-diagnosed autism might have an ill-effect on his son. He wanted to know what he could do to be a better father.

The National Autistic Society describes how an adult might pursue a diagnosis and provides insight about why some adults choose to pursue a diagnosis.

The growing media focus on autism does leave many adults taking note and engaging in self-reflection about their own behavior. Sometimes a label explaining some of life’s challenges can bring a sense of relief.