Autism making daily routines impossible? Occupational therapy to the rescue!

by Ellen Harrington-Kane

Did you know that April is both Autism Awareness Month and Occupational Therapy Month? Well, it is true — and I think it is a wonderful match! A press release put out by the American Occupational Therapy Association (AOTA) this month explains how occupational therapy practitioners can help people with autism participate in daily routines.

Though a December 2008 Easter Seals-sponsored study showed nearly 80 percent of surveyed families with a child with autism are extremely or very concerned about their child’s potential to achieve independence as an adult, occupational therapy practitioners can help. They can make a difference in the lives and futures of these children by identifying the early signs or indicators of autism spectrum disorder (ASD) so the family and child can then receive necessary support and services. Occupational therapy practitioners help children and their families participate in daily routines and promote their function when facing barriers or difficulties typically associated with this disorder.

“Occupational therapy practitioners assess the specific area or areas in which the individual is showing signs of ASD, and then shares that information with the parent or physician,” said Leslie Jackson, MEd, OT, project director of the Training Modules for Inclusive Early Care and Education at Easter Seals. “April, which is both Occupational Therapy Month and Autism Awareness Month, provides an excellent opportunity to educate the public about the important role the profession plays.”

The Easter Seals Living with Autism Study mentioned in that press release was funded by MassMutual, and pointed out the many needs of individuals and families living with autism across the lifespan. We all acknowledge serious gaps in services and lack of adequate funding for services — those gaps make it all the more important to know where help is available right now.

This month, the American Occupational Therapy Association web site features a talk I put together along with Janie B. Scott MA, OT/L, FAOTA, from Towson University. Our talk explains how occupational therapists help individuals and families participate in education, work, play and daily life by helping a person with the performance of daily life tasks.

Take a quick 15 minutes to listen to all the ways we can help — download a podcast of our talk about the role of occupational therapy in the treatment of autism. When you’re done listening, pass the link on to others you know. The podcast is meant to be downloaded and shared with friends, families, clients, acquaintances, teachers, employers and anyone else who might benefit.

Aren’t we aware enough already?

by Beth Finke

I am a Nick Hornby fan. His book High Fidelity is one of my favorite modern novels. The movie is fun, too, and it was filmed right here in Chicago! I keep Hornby on my radar, so of course I took notice when I found out a few years ago that his son has autism. And I took notice again this week when I found Nick Hornby quoted in the Telegraph.

Mr. Hornby, whose son attends a TreeHouse school in north London, said: “When my son was diagnosed with autism there was a total lack of information and advice on what we should do next.

“It seems that little has changed – and that is a national scandal.”

It’s funny – usually when I tell outsiders that I moderate a blog about autism for Easter Seals, they say something about how much they’ve heard about autism the past couple of years. But still, according to parents like Nick Hornby, we need to talk more, make more people aware.

For the third year in a row, during April’s Autism Awareness Month and World Autism Awareness Day, Easter Seals Autism Spokespersons Network (ASN) and Affiliate Marketing Partners (AMP) members, at both the local and national levels, are actively promoting Easter Seals role as the largest nonprofit provider of autism services. Our goal is to let people know that Easter Seals is a trusted expert around autism services and drive the message that there is an urgent need for treatment and services for families living with autism.

Again with that urban myth about divorce rate!

by Beth Finke

A story in the New York Daily News described how 150 strollers set up in Central Park on World Autism Awareness Day helped make New Yorkers aware that one in 150 children are diagnosed with autism.

It looked like a gigantic play date, but the 150 baby strollers lined up in Central Park Thursday were there for a far more serious reason.

The story went on to interview parents of children with autism. It was a good article, really, except for one quote.

Actress Holly Robinson Peete, whose 11-year-old son, Rodney, is autistic, said the disorder puts a strain on families.

“My husband and I – with an 80% divorce rate [for couples with autistic children] – had to do a lot to keep our family intact,” Peete said.

I am not questioning whether Peete and her husband had to do a lot to keep their family intact; I’m just getting tired of that urban myth about the high divorce rate. Last year’s Easter Seals’ Living with Autism Study provided us with quantifiable information that families living with autism are significantly less likely to be divorced than families with children without special needs. Among those parents with children who have Autism Spectrum Disorder and who have been divorced, only one-third said their divorce had anything to do with managing the special needs of their children.

Change.org applauds our positive fundraising methods

by Beth Finke

A guy named Mike Ervin lives in our apartment building here in Chicago –- Mike was a poster child for the Muscular Dystrophy Association in the 1960s, and today he’s an activist who challenges the MDA’s representation of people with disabilities in its annual telethon. I’ve learned a lot from Mike, and I was particularly pleased to find Easter Seals mentioned in a change.org blog post as an example of how a non-profit organization can raise funds in a positive way.

The post quotes Evan Kemp, Jr., Chairman of the U.S. Equal Employment Opportunity Commission (EEOC) under George H. Bush and EEOC commissioner under Reagan.

By focusing on innocent children, the telethon, he said, “seems to proclaim that the only socially acceptable status for disabled people is their early childhood. The handicapped child is appealing and huggable–the adolescent or mature adult is a cripple to be avoided.” Kemp objected that the telethon focused on the tragedy of a small number of children who died from muscular dystrophy, when in reality a far greater number of adults, like himself, lead normal lives with neuromuscular conditions.

Last year’s Easter Seals’ Living with Autism Study provided us with quantifiable information to help us raise awareness of — and advocate for — the services people living with autism will need not only as children, but as adults, too. The study gave us a better appreciation of what our constituents need from us. The change.org post pointed out another way we are listening to our constituents:

As “world autism awareness day” and “autism awareness month” bombard us with fundraising requests and panicked images of “innocent children” or the “bravery of those who overcome autism,” remember that the path to eliminating these destructive stereotypes has been walked before. Major charities such as Easter Seals and United Cerebral Palsy have listened to their constituents, and changed their fundraising tactics to remove the pity messages–without hurting their fundraising.

Can’t wait to share this post with Mike.

Sandra Lee & Easter Seals help make meal-time ease a must for parents

by Patricia Wright

Easter Seals is thrilled to be featured in the latest April/May issue of Sandra Lee Semi-Homemade Magazine! Here’s an excerpt:

Offering hugs from her heart is only one of the ways that Sandra is pitching in at the Easter Seals. To help highlight April’s Autism Awareness Month, Sandra recently spent some time in the Bronx Child Development Center in New York, in the school’s play kitchen and classroom, where 95 children between the ages of 18 months and 5 years receive one-on-one pre-K care. To help up the ante, Sandra will be bargain shopping for Semi-Homemade ingredients at Safeway grocery stores this spring. Since 1986, Safeway has partnered with Easter Seals, creating a companywide fund-raising effort and a tear-pad promotion that collects donations from customers at checkout; please help us this year!

Foodies and fans of the Food Network know of Sandra Lee’s passion for simple solutions that create dramatic results in all areas of home life.

Easter Seals is excited to be working with Sandra Lee to find unique ways to help make life a little easier for families living with autism — possibly uncovering some of those simple solutions that could work well for your family.

And what better place to start than with food! Sandra Lee gave Easter Seals a handful of delicious recipes featured in the current issue of her magazine and worked with us to offer a few suggestions for adopting the recipes for children with autism.

Today’s families — especially families living with autism — are strapped for time and cash, making meal-time ease a must. We know that children with autism may have strong food preferences and can be very choosy eaters, further complicating family meals. Developing independent living skills, including cooking and kitchen safety, is an important part of Easter Seals’ services for individuals with autism.

Additionally, one of the findings of our Living with Autism Study reported that families with autism are more likely to eat a sit-down dinner at home five days a week or more (44% compared to 32% of parents with typically developing children).

Tips for Making Meals Fun for Your Child with Autism

With that, consider testing out a few of Sandra Lee’s cost- and time-saving recipes and keep these tips in mind:

• Involve your kids in making a part of the meal—they may be more interested in eating something they helped to prepare.
• Explore different textures to encourage your child with autism to try the Garlic Mashed Potatoes. Mash them completely for a smooth presentation or leave a few lumps. Maybe your child will prefer “bumpy” potatoes.
• Make the Pepperoni Pattern Pizza and let your kids add their own preferred toppings to a pizza section — maybe adding more mushrooms and no olives.
• Serve salad ingredients for the Spinach and Hearts of Palm recipe in separate dishes if your child doesn’t like foods to touch — and then, kids can dip the different veggies into the dressing.
• Try a boneless pork chop for the Pork Chop with Apples — some children with autism don’t like having the bone with the meat.
• For children who steer clear of vegetables, puree broccoli or other nutrient-rich vegetables and add it to the spaghetti sauce. Make sure the vegetables are invisible.
• Separate items in the Shrimp Stir Fry on your child’s plate to encourage them to eat the snow peas, shrimp, and cole slaw separately if they don’t like their foods combined.

Parents know their children best, so this is really just a beginning. Please share some of your meal-time tricks of the trade with us — we’d love to hear what works best for your family when it comes to food.

Adults have autism too: World Autism Awareness Day

by Patricia Wright

Today is World Autism Awareness Day, and that gives me a chance to let you know about the autism services and treatments Easter Seals makes available to families living with autism. A number of wonderful organizations research and study the cause and cure for autism — Easter Seals stands out as the nation’s leading provider of services and support for children and adults living with the disorder.

The Easter Seals Living with Autism Study last year provided us with quantifiable information about the services and supports that families living with autism desperately need. Parents of children with autism are struggling with a host of worries that impact every aspect of their lives. They are particularly concerned that their family will lack the life-long supports needed to address the significant challenges of autism.

Results of the study revealed parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of parents of typically developing children. This is especially true when it comes to their financial independence, quality of life, social and inter-personal connections, and employment and housing opportunities — and with good reason.

The study quantifies what Easter Seals has heard anecdotally over the years. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need.

More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

Safeway’s family of stores launch April campaign for Easter Seals … a perfect time to stop in, shop and say thank you

by Jim Williams

Today, as Safeway and its family of stores across the U.S. and Canada officially launch their annual cause-marketing campaign to support Easter Seals this April, it’s a perfect time for Easter Seals staff, volunteers, donors and client families to stop in, shop and say thank you.

For the month of April, as shoppers check out at Safeway, Vons, Dominick’s, Randalls, Tom Thumb, Genuardi’s, Pavilions and Carrs stores, they’ll be asked if they’d like to contribute to help people with autism and other disabilities — to help Easter Seals disability services.

Saying thank you when you shop at Safeway stores is a terrific way to let your local Safeway employees know how much their efforts mean to Easter Seals and those whose lives we touch everyday.

Since 1985, Safeway and its employees have raised more than $93 million to support Easter Seals’ services in the communities where they do business. In 2008 alone, Safeway raised $9.3 million overall for Easter Seals. And with this year’s April campaign, Safeway is likely to top the $100 million mark for lifetime contributions to Easter Seals and the many families living with autism and other disabilities we serve.

Stop in, shop and say thank you at Safeway.

Know about autism services in your state? Check out our state profiles

by Julia Kim

Are you lost trying to figure out what autism services are available in your state? It can be difficult to figure out which states have what services for people with autism. Now Easter Seals can help! Our new state-by-state report spells these details out.

2009 State Autism Profiles: Autism Services in the 50 States, District of Columbia and Puerto Rico is an objective resource that allows parents, families, and legislators to learn more about autism services in a specific state and compare services across states.

Each state autism profile provides information in the following areas:

• Demographics
• State Task Force
• Health Insurance
• Medicaid, if applicable
• Education
• Educational Programs and Activities
• Other State Resources
• State Legislative Calendar
• Sponsors of Autism Legislation

This is a valuable resource, and the profiles will be updated periodically — be sure to check back often for new information.

Book review: Julie L. Coe’s “The Friendship Puzzle: Helping Kids Learn About Accepting and including Kids with Autism”

by Katy Beh Neas

I just read a really nice book: The Friendship Puzzle, Helping Kids Learn About Accepting and Including Kids with Autism. The book was written by Julie L. Coe, inspired by Jennifer Maloni, and illustrated by Sondra L. Brassel. These collaborators are all moms, some have children with autism and some have typically developing children. Their goal was to write a book to help all children understand that each of us is unique and that each of us can learn to care about others.

The voice of the book is a typically developing elementary school girl — the story is about her journey to understand the new kid at school who has autism.

The book presents information in a kind and factually accurate manner and offers activities that kids can do with kids with autism. I’d recommend this book be included in all elementary school libraries.

Strike a Boom! Maurice on Obama’s bowling score

by Maurice Snell

It has been a busy first two months for our 44th President Barack Obama. In those first two months, President Obama has issued a promise of change to a whole new America. As with every other president, it is not a cakewalk. There have been numerous topics for President Obama to deal with — the economic stimulus plan, AIG bonuses, soldiers going off to war, and more. On the light side, Barack filled out his bracket for the NCAA Tournament. So far, he’s doing well with some hits or misses in his picks.

The one thing that really caught my attention was the President’s appearance on the Tonight Show with Jay Leno last Thursday. Along with millions of other Americans, I sat back and enjoyed the show. President Obama got to express many interests, like American Idol, the NCAA Tournament, and my #1 love of all: bowling.

As some of you may know, President Obama made a remark about Special Olympics with his bowling game. The President stated, “I bowled a 129…which is like Special Olympics.” The crowd — including me — laughed. But not everyone was laughing. Some individuals were offended. At the time, while I was laughing, I was oblivious that his remarks may have hurt anyone’s feelings. Including my own, because I am diagnosed with autism.

To go back in time, I was an active participant in the Special Olympics during my days at the Therapeutic School and Center for Autism Research. I enjoyed the opportunities to participate in various events and meet many different people. To me, Special Olympics kept me going throughout my life. It motivated me to achieve higher standards and make me grow as a man. I’m grateful for Special Olympics and Easter Seals’ involvement in Special Olympics. It has helped change the lives of many different people — including my colleague, Jamie Smith. Jamie went to Shanghai, China and did extraordinarily well -– he won four Olympic medals!

We must learn how to appreciate the special needs people in this world. They can go on and do many great things in life, like I did, staying in Easter Seals and later graduating from high school and then college. The lesson I learned from the Tonight Show is always think of the underprivileged first. Do not make a mockery of the less fortunate. President Obama knows this — we shouldn’t fault him for his mistake.