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.

Top autism books of 2007

by Beth Finke

You’re Going to Love this Kid! by Paula Kluth	Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm	Beyond The Wall by Stephen Shore
Browse our Easter Seals and Autism Bookstore for more titles.

Sound the trumpets, light the fireworks, and crash the cymbals. Here it is — the Easter Seals and Autism blog’s picks for top three autism books of 2007.

Okay. Wait. Disclaimer time. These books weren’t necessarily published in 2007. They qualify for our list, though, because 2007 is the year we started our Easter Seals and Autism online bookstore — the books on this list were all chosen by our panel of reviewers in 2007.

And besides, I’m the one who’s making the rules for who qualifies!

Drum roll, please… here’s our top three:

1. You’re Going to Love this Kid! by Paula Kluth
   

   A comprehensive guide to understanding students with autism and including them fully in the classroom. Kluth’s book includes specific ideas for fostering collaboration among peers and provides practical solutions to the challenges students with autism present in an inclusive environment.

2. Ten Things Every Child with Autism Wishes You Knew by Ellen Notbohm
   

   This book strips away the mystery of autism and in so doing, gives the reader a better understanding of the behaviors of a child with autism.

3. Beyond The Wall by Stephen M. Shore
   

   Author Stephen Shore was diagnosed with Asperger’s Syndrome at a young age. Read his inspiring story of personal courage and loving support from his family as he gives readers an “inside” look at life’s journey through the eyes of someone on the autism spectrum.

Easter Seals receives a portion of the proceeds from Amazon for the sale of a book through our bookstore. Check out these titles as well as many more at our online bookstore.

We hope you enjoy these selections and look forward to bringing you more great books in 2008!

Learn while you P.L.A.Y

by Beth Finke

An article in yesterday’s Orlando Sentinel highlights anEaster Seals program that shows parents how to turn play into therapy. The story features Amanda Nero, who has two children with autism:

She felt unsure years ago, when doctors diagnosed her older son, Christian, now 5, with autism, and again when her younger son, Jaden, 3, was diagnosed as well. They might never know the joys of a typical childhood, she thought.

But as Jaden buried his head into Nero’s shoulder, the Ormond Beach mother said she now believes her sons can know happiness. She has the support of her husband and the help of her 6-year-old daughter. And soon, Nero will have the assistance of a program that teaches parents how to give their autistic children the hours of therapy they need.

Christian and Jaden participate in the P.L.A.Y Project at a Daytona Beach charter school run by Easter Seals of Volusia and Flagler Counties. The P.L.A.Y. (Play and Language for Autistic Youngsters) Prroject teaches parents to perform some of the therapy that professionals do and incorporate it during daily activities such as bath time, a visit to the grocery store or a trip in the car.

Ellen Harrington-Kane, Assistant Vice President for Medical Rehabilitation and Autism Services at Easter Seals Headquarters, is very familiar with the P.L.A.Y. Project. In july, Ellen joined Julie Dorcey from Easter Seals Michigan and Rick Solomon, MD, founder of the P.L.A.Y Project to give a presentation about P.L.A.Y at the Autism Society of America (ASA) 38th Annual Conference in Phoenix. Their session was called The P.L.A.Y. Project: A Cost Effective Intensive Intervention for Young Children with Autism Spectrum Disorders.

You can read more about it — plus link to more P.L.A.Y sources — at Ellen Harrington-Kane’s July post.

Here’s wishing you a new year full of playing — and learning!

A new year of hope for families with autism

by Beth Finke

As moderator of the Easter Seals and Autism blog, I like to recruit different members of the Easter Seals family to post here from time to time. Our blog is more interesting — and fun — when readers get to hear voices from all over the country… and all over the world!

One of the most powerful posts we published this year came from Scottie Gaither’s mother Barbara. Scottie was diagnosed with autism at age 2 and is the Easter Seals 2008 National Child Representative. Barbara Gaither’s post tells how Easter Seals helped the Gaither family after their son Scottie was diagnosed with autism. It opens like this:

This time of year, I find myself reflecting on what I am most thankful for. I have so many things in my life that have truly blessed me, but one of the most amazing blessings is having an autistic son.

Later in the same post, Barbara wrote:

… We can give back to Easter Seals as an organization because they have given us more than words could ever express. It also gives us a chance to offer hope to other families facing the darkness of autism.

I hope that somehow, by seeing and hearing our story, there will again be light.

By making a 2007 tax deductible donation to Easter Seals, you can give help and hope to more families like the Gaithers. Cross one resolution off your list early and help another family start the New Year with hope.

Best wishes for a happy and healthy 2008!

Last minute shopping for people with autism

by Beth Finke

Our son Gus doesn’t talk. He shows a keen interest in very few things, but he sure knows what he likes — handheld tape recorders, for example. He takes the recorder in one hand, places it near his ear, transfers it to the other hand, places it near that ear, transfers it to the other hand, places it near that ear… you get the picture.

Gus is 21 now, living in a group home with roommates. While he was growing up, we tried our best to find new toys for him to explore — we knew it was good for him to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise. He’d usually touch his new gift, cast it aside, and search for… you guessed it — his handheld tape recorder. 

I used to think maybe, just maybe, if there was somewhere I could go for a list of toys especially good for kids with autism and other disabilities, I’d find the magic item, the one thing Gus might like as much as he likes his tape recorder.

Those of you who read my “Celebrating bubble wrap” post know I’m still searching for that magic list. Turns out I’m not alone. A holiday post on about.com’s autism blog covers the same topic.

I’ve been trying to put together some good resources for holiday gift giving this year — and for some reason, I’ve been stuck…truth is, though, that I don’t want autism jewelry… and my son doesn’t really need a weighted blanket. Though he’s autistic, and I’m an “autism parent,” those facts don’t really seem to matter when it comes to giving and receiving holiday gifts.

Comments to that holiday gift blog mention kids with autism who like hats, kids with autism who like The Rescuers books, and kids with autism who like Harry Potter Playstation games.

In the end, that blogger came up with a conclusion similar to mine…

It might be downright silly to think there is a good resource to go to for gifts that are especially suited for kids who have autism or other disabilities. Because, guess what? Kids with autism and other disabilities differ from one another as much as anyone else does!

And so — sorry! I thought I might be able to narrow things down, make things a little easier for those of you reading the Easter Seals and Autism blog, but looks like you might have to get out there and slug it out with all the “average” shoppers. And… yikes! Only six days left before Christmas!

Good luck!

P.S. Gus suggests your loved one might like a handheld tape recorder…!