Easter Seals-Goodwill Northern Rocky Mountain celebrates a milestone

by Beth Finke

Congratulations to Easter Seals-Goodwill Northern Rocky Mountain on its 65th anniversary! To mark the occasion, “Montana This Morning” (the morning show on the local CBS station in Great Falls, Montana) featured the affiliate on their show earlier this month.

President and Chief Executive Officer of Easter Seals-Goodwill Northern Rocky Mountain Michelle Belknap gave some background on Easter Seals, explained their affiliate’s partnership with Goodwill and described its employment and autism services. “A lot of services we provide are out in the community,” she said. “You see the mission every day and you see the impact that we have on [our clients’] lives.”

Thanks to Easter Seals-Goodwill Northern Rocky Mountain, children with autism who grow up in small towns in Montana have communities that know, love and appreciate them. The children still have challenges that result from their autism, but their local communities are much more successful in addressing those challenges. Happy birthday, Easter Seals-Goodwill Northern Rocky Mountain!

Studying the P.L.A.Y. Project

by Erin Rogers

The P.L.A.Y. Project (Play and Language for Autistic Youngsters) is conducting a two-year, randomized, controlled, and blinded clinical trial on the effectiveness of The P.L.A.Y. Project model of intervention. We at Easter Seals Peoria-Bloomington are pleased to be one of the five Easter Seals affiliates participating.

With research-design guidance from Michigan State University, and community-outreach support from Easter Seals, the study compares the outcomes of 60 children who participate in The P.L.A.Y. Project with the outcomes of 60 children who receive standard, community interventions, making it the largest study of its kind.

Before and after the 12-month intervention, each child is assessed with a battery of tests to measure developmental level, speech and language, sensory-motor profile, and social skills. Year one preliminary results are very promising for the first 60 children involved in the study. Parents participating in The P.L.A.Y. Project reported 15-20 hours per week engaged interaction, and recorded observations demonstrate that the parents:

• were responsive to child’s cues,
• followed the child’s lead, and
• effectively elicited back-and-forth interaction.

An added benefit: parents involved in the P.L.A.Y. project suffered less stress and depression over time. In respect to child-specific progress, scores on the Autism Diagnostic Observation Schedule, or ADOS, showed significant improvement in the intervention group’s severity of autism symptoms. That said, there were little significant differences in IQ scores between the study and control groups.

Year two of The P.L.A.Y. Project study will end later this spring, and additional study results will be available in the next year. Until then, if you have questions about our participation in The P.L.A.Y. study, you can contact Easter Seals in Peoria at 309-686-1177 or Bloomington at 309.663-8375.

What do you end up doing with those grants, anyway?

by Michael Pelfini

All of us at Easter Seals Bay Area are so proud of Michelle Ficcaglia, Jennifer Cowherd and Audrey Niblock for earning their Board Certified Behavior Analyst (BCBA) credentials. As a board certified behavior analyst, each of these professionals brings a wide breadth of experience and expertise to ensure that individuals and families affected by autism and other disabilities get meaningful answers and help.

Michelle Ficcaglia, who serves as the Clinical Director for Easter Seals Bay Area’s Autism Project, and Jennifer Cowherd, Program Manager for Easter Seals Bay Area’s award-winning Kaleidoscope After-School Program, were able to pursue their BCBA certification through a grant from CVS Caremark All Kids Can Program™, committed to supporting children with disabilities and promoting inclusion. Easter Seals Bay Area received the CVS Caremark All Kids Can grant for $20,000 in May of 2009, to strengthen local autism services through Professional Development in Applied Behavior Analysis. The grant was awarded to Easter Seals Bay Area in response to families’ need for greater access to autism services.

The expertise that each of these women bring to Easter Seals is invaluable to our exceptional team of professionals. All of us share our commitment to improving the lives of children in our community, and the CVS Caremark All Kids Can Grants enabled two of our top staff to obtain their BCBA credentials, which will help Easter Seals Bay Area continue to lead the way in providing critical services to those living with disabilities, in particular autism, in the Bay Area. Thank you, CVS, and congratulations Michelle, Jennifer and Audrey.

Love on the spectrum

by Patricia Wright

It’s fun to read a newspaper story about people you have met — especially when it is a good article! I enjoyed this very experience when I read a article called Navigating Love and Autism about the blooming romance between 19-year-old Jack Robison and Kirsten Lindsmith, both students at the University of Massachusetts campus in Amherst.

I had the good fortune of spending an evening with Jack Robison and Kirsten Lindsmith at last year’s Autism Society conference. They were delightful in person, and their personalities shine in this great article written by Amy Harmon.

Interpersonal relationships are a lifelong learning opportunity — for everybody. Even folks that have mastered most of life’s challenges (e.g. career, finances, and education) often struggle with how to successfully partner with another person. These two young people graciously provide a view into their world and are a great example of the unique challenges that individuals with autism experience in pursuing a partnership and the success they have had in overcoming some of those challenges. In her article, Ms. Harmon writes about a misunderstanding about individuals with autism:

Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships.

This is not true. Amy Hardon’s article tackles many topics important to relationship, communication, personal preference, and sex — all with an ASD spin. The article informs us neurotypicals about some of the unique aspects of relationships for individuals with autism — but also provides some insight that the challenges in these relationships aren’t that different than the ones the rest of us experience.

A city catches up on needed autism services

by Beth Finke

With so much going on over the holidays, you may have missed an article in the Stamford Patch celebrating the opening of the new autism services center at Easter Seals Coastal Fairfield County.

The article recognized that Fairfield County lagged behind New Haven and Hartford when it came to autism resources, and that while other regions had established programs in the early 1990s, Fairfield County did not.

Dr. Thomas Zwicker was quoted in the article saying that the new center is filling a service gap and offering Stamford area residents the opportunity to have autism evaluation services nearby:

“There’s a gap in the number of providers who can do the evaluations,” Dr. Thomas Zwicker, BCBA-D, Director of the Autism and Developmental Disabilities Center, said. “We’ll have people from Yale who can do them here so parents don’t have to make the trip to New Haven.”

Leslie Chambers, Executive Director of Advancement at Easter Seals of Coastal Fairfield County, told the reporter that Easter Seals Coastal Fairfield County wants this to be an ongoing education center. One of the earliest workshops they plan to offer will help families navigate insurance for treatments. They’ll be working with area schools to create and improve programs for children with autism, and hope that by partnering with local pediatricians they can provide an opportunity to reach families early on. The Autism and Developmental Disabilities Center will educate families, schools, and pediatricians — what a great way to start the New Year!

A vacation in the Big Easy … really?

by Beth Finke

I have been to New Orleans many times, and I’ve always considered the city a blind person’s paradise. The smell of green peppers and onions cooking in butter, the sound of live jazz in the streets, the feel of warm air, the tastes of decadent meals and drinks — New Orleans is the only city I’ve vacationed so far where sight takes a back seat to the other senses.

Our son Gus lives in a group home, and he loves music. Until I read a post on the Daily Kos blog about a family trip to New Orleans over the holidays with three children (one who has autism), though, I had never, ever considered bringing Gus to New Orleans with us.

The post urges parents to be flexible when traveling, avoid overscheduling your child with autism, and take lots of breaks:

A day in New Orleans (our most recent trip) looked like this: breakfast, an activity (aquarium, museum, whatever), break at the hotel. Lunch, activity (Mississippi River cruise, swamp tour, whatever), break at the hotel. Dinner, walk around town shopping or admiring Christmas decorations, back to the hotel early.

The blog author admitted that taking so many breaks can be “annoying and kind of boring,” but it keeps their daughter with autism on an even keel. Their kids are old enough now that they could stay alone in the hotel room for a little while, but the parents were usually pooped after dinner and had no desire to go out without the kids anyway.

The author describes a streetcar trip they had to ditch when their daughter became annoyed with a fellow passenger: “We hopped off the streetcar halfway through the ride and hoofed it back to the hotel. “It turned into kind of a funny little adventure (at least that’s how I encourage the kids to look at it).”

The author ends the post saying their family’s life is never, ever boring. “It is many things, good and bad, but never boring.”

I can believe that — laissez les bon temps rouler!

Book review: Scholars with Autism

by Patricia Wright

I learn a lot about autism from people who have autism. My job provides me with lots of opportunities to talk with individuals living with autism, and I seek out written work about autism too.

Eight scholars with autism have recently collaborated to publish an autobiographical anthology called Scholars with Autism: Achieving Dreams. Each author has achieved significant academic success, and their stories honestly portray their challenges while demonstrating that individuals with autism do succeed in life.

I was especially moved by an essay Valerie Paradiz wrote called Deep Thinking on Baseball and Autism. Throughout my career I have regularly described the strong interests of individuals with autism as “special interests.” Dr. Paradiz’s essay (comparing the prejudices experienced by black baseball players in the 1950’s with her own experiences living on the spectrum) challenges my use of the word “special”:

Special needs. Special education. Special interests. I’m a writer, so when certain words or turns of phrase don’t ring true to me, I pay close attention, and I try to figure out why they make me uncomfortable. ‘Special’ reminds me a lot of the word ‘Negro’ and how its usage came into question during the civil rights movement of the 1950s and 1960s.

Dr. Paradiz goes on in detail to provide insight on how the use of the term special is indeed discriminatory. Dr. Paradiz uses terms such as “deep and focused” interest to describe her current areas of study. I will strive to adjust my language to do the same.

The other essays in Scholars with Autism provide additional wisdom and perspective. All of the authors share their personal strategies in navigating the social world and compensating for their social challenges. Social success is imperative for success in life. The professional success of these authors demonstrates that social acumen can be acquired. Dr. Paradiz and her co-authors provide a great resource in this anthology, and individuals with autism continue to provide me with great insight into being a better autism professional.

We scooped the New York Times!

by Beth Finke

Remember last month when we published a post by Ellen Harrington-Kane about SNApps4Kids? In the post, Ellen explained that the SNApps4Kids program was started by a father of a child with disabilities and has now become a part of Easter Seals Greater Houston. Well, one month later, the New York Times published a story called Finding Good Apps for Children with Autism that highlights Easter Seals of Greater Houston and their SNapps4kids.com program:

The site, a program of Easter Seals, lists more than 700 apps but includes about 60 that have been professionally reviewed. The reviews are all done by a special education teacher or certified therapist, many of whom are a part of the Easter Seals network.

The story touted SNApps4Kids for organizing its reviews and categories by the skills individuals learned from the app rather than the disability or diagnosis of the user.

The Apple iPad and its apps have proven effective in helping children with developmental delays, especially autism, to learn, communicate and handle social situations. How wonderful that the New York Times chose to publish a story featuring this terrific program — the more people who know about it, the better they’ll be equipped to choose an app that is right for them and their child with autism.

Teenage social struggles no surprise

by Patricia Wright

Beth Finke wrote a post earlier this month where she said she hadn’t expected study results to show that young adults with autism were even less likely than their peers with intellectual disabilities, learning disabilities and communication disabilities to see friends, receive phone calls or be invited to social activities. Results of that study, called Participation in Social Activities among Adolescents with an Autism Spectrum Disorder, came as no surprise to me, though — when I speak with adolescents and adults with autism they report that they really do want to have friends and social relationships, but the complexities of navigating the social world feel overwhelming.

Paul Shattuck, an assistant professor at the Brown School at Washington University, led the study. Dr. Shattuck is an amazing researcher who uses the National Longitudinal Transition Study (NLTS) data to look at life after high school for those living with autism, including the use of services and (most recently) participation in social activities. The purpose of research and data are to inform and improve practice, and Dr. Shattuck’s work is invaluable in this respect. You can link here to read the full study — as an autism professional I am well aware of the social challenges experienced by young adults with autism, and Dr. Shattuck’s data is a reminder that we have a lot of work to do to ensure individuals with autism get the support they need to make friends and enjoy the rich social life that our culture associates with adolescence.

My job has great benefits!

by Patricia Wright

Last month I attended the Ohio Center for Autism and Low Incidence (OCALI) conference to talk about Easter Seals and the work we do with people who have autism. OCALI uses leadership, training, professional development, technical assistance, collaboration and technology to build state and system-wide capacity and improve outcomes for individuals with autism and low-incidence disabilities. What a great fit for the work of Easter Seals — we’ve been partnering with OCALI for years.

My job involves lots of opportunities to meet people and engage with the greater autism community. I was in the OCALI conference hall when I was approached by a student named Robin who needed to spend time with a non-profit as part of her university course requirements. As an educator I was delighted to be able to support her educational efforts. Robin joined my colleague Lynn and me at our table and was quick to share that she had a direct connection to Easter Seals: she had received speech therapy services at an Easter Seals in the early 1970’s!

Robin had strong memories of being a young child and receiving therapy at an Easter Seals in her hometown in Ohio. She even had her original report from the therapy — someone had come across the documentation while cleaning out old files and they contacted her mother. I’d say that is one of the benefits of living in a small town!

It is so much fun when people share their personal stories about Easter Seals. Meeting people served by Easter Seals, and seeing the positive outcomes is a wonderful bonus of my job.