A new partnership and a new model of service

by Jim Williams

Lee Grossman is the President and Chief Executive Officer of the Autism Society of America (ASA). We’re happy to have Lee here as a guest blogger to celebrate the partnership between the ASA and Easter Seals!
– Jim Williams

A new partnership and a new model of service

by Lee Grossman

I’d like to echo Jim Williams’ sentiments. Bringing the Autism Society of America’s (ASA) advocacy and partners together with Easter Seals’ experience and scope of services will be an excellent fit.

For readers who are not here in Phoenix, let me tell you a little about the 38th ASA National Conference. This year we welcome nearly 1,500 attendees. Fifty are adults on the autism spectrum. About half are family members of someone on the spectrum and half are professionals dedicated to helping our community. Everyone is here to discuss ways to handle this burgeoning health crisis, and how to support families.

We’re excited about this partnership with Easter Seals. With it, we’re creating a new model of service that will better address the needs of individuals with autism and their families.

Read Lee Grossman’s biography.

The P.L.A.Y. Project: our presentation at the ASA Conference

by Ellen Harrington-Kane

Hello from the Autism Society of America (ASA) 38th Annual Conference in Phoenix. There are over 1,500 people attending the conference this year. They include representatives from nine Easter Seals affiliates plus headquarters staff.

This conference is unique because the attendees include not just professionals working with people with autism, but also individuals with autism, their families and caregivers. Here, families can hear from researchers, learn about service providers and network with other families who have similar experiences  It’s one of the few places where you really get a sense of the inclusiveness of the ASA, a grassroots organization started by families over 40 years ago.

Yesterday, Julie Dorcey from Easter Seals Michigan, Rick Solomon, MD, founder of the P.L.A.Y. (Play and Language for Autistic Youngsters) Project and I presented our session, The P.L.A.Y. Project: A Cost Effective Intensive Intervention for Young Children with Autism Spectrum Disorders. There were about 100 attendees, from all types of backgrounds.

The P.L.A.Y. Project, based on the DIR (Developmental, Individual-Difference, Relationship-Based)/Floortime model of Stanley Greenspan, MD, is an intervention for young children up to 6 years old. Easter Seals has embraced the P.L.A.Y. Project for three basic reasons:

• At about $4,000 per year, it’s one of the most affordable interventions for families. 
• It’s a parent coaching, family empowerment model that’s provided in the child’s home. Parents are coached in how to interact in a way that draws interactions from their child and begins to help them open and close “circles of communication.”
• From a professional perspective, the training is provided in such a way that it creates competent, consistently high-quality home consultants.

There are currently 19 Easter Seals P.L.A.Y. Projects, with five more planned to start in the coming months.

Next year’s ASA conference is going to be in Florida.  I look forward to attending it, meeting new people and connecting with old friends.  I encourage you to consider attending as well!

Accessible accommodations at the ASA Conference

by Julie Dorcey

The hotel industry is customer-focused by nature, but here in Scottsdale, Arizona, the Westin Kierland Resort and Spa has taken hospitality to a new level in hosting the Autism Society of America’s (ASA) 38th Annual Conference.

ASA and Westin staff began laying the groundwork for the conference last fall, with much discussion on how to make the resort an especially comfortable and inviting place for people with Autism Spectrum Disorders and their families.

“It is very important to us that everyone feel welcome here. We wanted to minimize any guest concerns by paying attention to the details that would allow everyone to really enjoy themselves,” says Conference Services Manager Stacie Stephenson.

Some of those details have included staff sensitivity trainings attended by a representative from every department — so information could then be relayed to every person working in any capacity during the conference.

A waterfall in the lobby has been turned off for the duration of the conference because it might be distracting to individuals on the spectrum.

Resort chefs spent a great deal of time shopping for and preparing menus to guarantee that individuals with sensitivities to gluten and casein have a wide variety of food choices in each of the resort’s eight restaurants. The room service, box lunches and kid’s menus have also been modified to provide gluten-free, casein-free options.

Additional signage serves to make the sprawling accommodations especially easy to use. And extra staff is on-hand to provide assistance to any conference attendees needing a little extra time and attention.

“This is a positive learning experience for everyone involved, and our staff are truly benefiting as much as our patrons,” says Public Relations and Marketing Director Christie Noble.

Many people with autism and their families live in a society that may not understand or be accustomed to their needs. This year’s ASA Conference is themed Together a Brighter Tomorrow. The staff members here at the Westin Kierland have proven to be a great example of what we can all hope for.

Read Julie Dorcey’s biography.

Easter Seals partners with the Autism Society of America

by Jim Williams

Today is a very important day for people with autism and their families as well as for Easter Seals and the Autism Society of America (ASA). At the annual ASA conference here in Phoenix, we announced a formal partnership between the two organizations. Working together, we believe that we can advance the cause of research and treatment for those with autism much more effectively than if we were working separately.

I had the opportunity to address the attendees at the conference this morning, and the response to our partnership was warm and enthusiastic. There was a real buzz in the room as we talked about the possibilities and opportunities that will be generated by our working closely together.

So stay tuned as this partnership takes hold. I expect great things to happen both in the short term and the long term as a result. In the meantime, you can learn more here about the nature of the partnership and what we expect to accomplish as a result of these two strong organizations joining hands.

Inclusion and “All Kids Can”

by Beth Finke

Ever since my memoir Long Time, No See was published I’ve been asked to guest-lecture for college classes. I usually talk about writing, about the assistive technology I use to write, or simply about what it’s like to live with a disability.

When I speak to the teacher education programs at Elmhurst College this Thursday, though, I’ll be talking about something a little different. I’ll lecture on what it’s like to be a parent of a child with a disability.

The students I talk to on Thursday are studying to be general education teachers. As part of their curriculum they are required to take one — just one — course in special education.

Considering that more than 95 percent of students with autism and other disabilities receive some or all of their education in regular classrooms, can one special education course for future teachers be enough?

This is where All Kids Can helps. Created by the CVS/pharmacy Charitable Trust, All Kids Can is a five-year, $25 million commitment to making life easier for children with disabilities. Through this signature program, CVS and the Trust help non-profit organizations like Easter Seals raise awareness in schools and in local communities about the importance of inclusion. In 2007, $350,000 in All Kids Can Fund grants went to support Easter Seals affiliates across the country.

I know that the general education students I’ll be speaking to on Thursday will benefit from hearing how inclusion played a major role in the life of my son, who has severe disabilities. But I’m only one woman. I can’t do it alone. That’s why I’m grateful to CVS for funding programs to promote the awareness of inclusion and its importance to children with disabilities.

An update on Maurice’s summer

by Maurice Snell

It’s been a while since I last posted a blog to the Easter Seals and Autism Web site. I haven’t really traveled outside of Illinois lately, but I will soon. However, I am excited about the changes at Easter Seals and how that will affect many Chicagoans (and Americans as well).

It wasn’t until the last week before summer break — Father’s Day to be exact — that I participated in a 5K Run and Walk to raise awareness about autism. I was fortunate to reunite with the people who work for Easter Seals Joliet and they were thrilled to have me and the family come a long way to join them. At first, I was nervous because I haven’t sprinted in a long time; I feared that I was out of shape and couldn’t keep up with the others. But fortunately, I did not dare to run; I contributed by walking with the other walkers and help spread the message to the town that the children need our help today. Our mission was to gather everyone up in the community and work hard to reach the ultimate goal. In the end, everyone has reached their goal.

Another great thing I’ve discovered: I’m beginning to see the new Easter Seals Metropolitan Chicago Therapeutic Day School and Center for Autism Research come to form. We just had the groundbreaking ceremony this past October — my, how time flies! The construction people have been working like clockwork putting the new school together. One week, I just saw pictures of the day-by-day construction on the Easter Seals Metropolitan Chicago Web site. Then one week later, they began building up from the ground, up to the second floor of the building. We have to give the construction workers credit for doing a job well done. This is already a start of a greater future for Easter Seals in Chicago and the nation.

As for traveling, I’ll be back to it soon! My next trip is back to Dallas, Texas for a fundraiser for Easter Seals in Greater Dallas, so I’ll hope to report to you about it soon! I wish you all a great summer!

Celebrating independent living on Independence Day

by Beth Finke

This Fourth of July will be the fifth year our son has lived independently of us.

Our son Gus is 20 years old. He communicates by propelling himself to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano.

Gus doesn’t talk or sing, but he does laugh and poke at the piano keys with whoever is playing the tunes. He claps with delight whenever he hears live music. He loves to hold hands, especially while swinging on a porch swing.

When Gus became a teenager, we needed more help with him at home. We found suggestions and advice about in-home services but as Gus continued growing bigger, my husband Mike and I grew older.

Shortly after Gus’ sixteenth birthday, we realized it was time for him to move. We started researching services for adults and eventually decided a group home would be best.

Gus cried his entire first weekend away. So did we, but we thought it best to leave him alone for a while and give him a chance to adjust to his new life independent from his parents. The transition from our home to a group home wasn’t easy, but it turned out well. For all of us.

On our first visit, we found Gus happy and smiling, yet not quite sure what to make of these visitors on his new turf. I sang to him. He felt my face. Suddenly he burst out in laughter,
realizing it really was me. It was a good visit. As I leaned down to kiss Gus goodbye, he took off. He couldn’t wait to get back to his roommates in his new home.

Now when we visit Gus, it’s all fun. No talking him into sitting on the toilet, no muscling him into the shower, no changing his diapers. No drudgery.

Gus seems relieved too … he’s finally allowed to do things independently of his parents.

Hmmm … maybe Gus has more in common with other 20-year-olds than I thought.

Happy Independence Day everyone!

Book review: Paula Kluth’s “You’re Going to Love this Kid!”

by Patricia Wright

Students with autism are becoming more frequent members of general education classrooms. You’re Going to Love This Kid!: Teaching Students With Autism in the Inclusive Classroom, by Paula Kluth, Ph.D., is a unique resource dedicated solely to inclusion and individuals with autism.

Kluth’s book is engaging and informative. The intended audience is classroom teachers, but parents and other professionals working towards inclusive schools will be interested in this book as well.

The opening chapter of the book includes first-person accounts of students who experience autism. These individuals give the reader clarity and insight from a first-person viewpoint about the experience of having autism. Kluth then addresses inclusive schooling and the ins and outs of the Individuals with Disabilities Education Act (IDEA).

Kluth addresses the role of the teacher, placing emphasis on the educator’s ability to support inclusive schooling. Another chapter addresses collaboration, describing how all members of an educational team can cooperate to promote an inclusive school.

Kluth provides practical and creative methods for solving some of the challenges that individuals with autism present in an inclusive environment. Solutions for adapting classrooms to support student participation in classwork, as well as school routines and social activities, are provided.

Another excellent chapter addresses literacy and the importance of literacy instruction for students with autism. And another focuses on challenging behavior, emphasizing a positive approach and encouraging environmental and sensory accommodations to promote positive behavior change.

Kluth provides helpful hints from veteran teachers and individuals with autism throughout this vibrant book. You’re going to love this kid provides a positive view of how inclusive education can be achieved for learners with autism. The mixture of practical solutions with inspiring real-life stories is an excellent resource.

Easter Seals’ P.L.A.Y. Project and Carson’s story

by Ellen Harrington-Kane

I was recently in Ann Arbor, Michigan with my colleague Julie Dorcey from Easter Seals Michigan. We were there to meet with Richard Solomon, M.D. to prepare for an upcoming presentation. Easter Seals staff and Dr. Solomon will be giving the presentation on the P.L.A.Y. Project (Play and Language for Autistic Youngsters) at a session on July 12 at the Autism Society of America’s (ASA) National Conference in Phoenix, Arizona.

The P.L.A.Y. Project is an autism intervention for young children. Dr. Solomon developed this parent-coaching model, designed to be carried out in a family’s home, based on the developmental, individualized, relationship-oriented (DIR) approach of Stanley Greenspan, M.D. Easter Seals provides this intervention in 19 locations across 12 states, including five sites in Michigan.

We got around to talking about some of the children participating in the P.L.A.Y. Project in Michigan — and that’s how I learned about Carson’s story.

Here’s what Carson’s mother says about the P.L.A.Y. Project, and how it has positively affected her child and family:

“Trying to get into Carson’s world was impossible….

We worked very hard to provide security and a comfort zone for Carson, and we especially wanted him to express his needs and wants to us.

We continued to work with Carson, and hoped and prayed so much for the little things we often take for granted with babies and toddlers. Little things (or so we thought) like affection, silliness, acknowledgement, laughter, etc.

Absolutely nothing we tried would work.

Then we discovered Dr. Solomon, Easter Seals and the P.L.A.Y. Project.

It’s because of the P.L.A.Y. Project that we now have a son who is so affectionate and engageable, among other things. I can’t tell you how many times a day — without prompting — Carson says to me, “Mommy, I need you,” or “Mommy, help me,” or “Mommy, tickle me,” or “Mommy, hug me.” It brings tears to my eyes just typing these phrases.

Carson is truly a happy little boy who has made such tremendous progress with the P.L.A.Y. Project. My husband Rob and I will forever be grateful to Dr. Solomon and his P.L.A.Y. Project and Easter Seals Michigan.

Each day brings us so many heartwarming surprises.”

It’s great to hear stories from people who have benefited from Easter Seals’ services! Julie and I will be back in July to blog about our presentation at the ASA’s National Conference.

Media and myths

by Ellen Harrington-Kane

Recently I saw this article on the ABC News Web site titled “Media Coverage May Perpetuate Autism Myths.” Most of the article is related to the continuing discussions over the role of vaccinations in the cause of autism.

Although the article briefly draws attention to the benefits of treatment, they’re not yet making that next critical connection — to the importance of funding for treatments and further research into effective, evidence-based interventions.

I see that Congress recently funded the Combating Autism Act. It’s my sincerest hope that the federal government finally acknowledges the fact that autism is treatable and that millions of people need treatment. This can be done by spending some of those research dollars on studying current treatment options to determine which ones really are effective.