Book characters with disabilities — stop the clichés!

by Beth Finke

In my other life, I’m a published author. My children’s book Hanni and Beth: Safe & Sound won a Henry Bergh children’s book award from the American Society for the Prevention of Cruelty to Animals (ASPCA).

I try to keep up with other authors who write about disabilities, so I appreciated it when a fellow writer forwarded a post from the YA Highway blog that spelled out some dos and don’ts when it comes to writing about characters with disabilities, or CWD. Whether you are a writer or not, I thought you might find some of her tips interesting.

The blogger says that just like when you’re writing about any other character, it’s important to have a well-rounded three-dimensional realistic characterization. She reminds writers how important it is to get the research right: read up on your subject and get to know people with disabilities in real life. “I read so many awful unrealistic depictions of CWD, especially characters with autism spectrum disorders,” she writes. “Good research, knowledgeable beta readers, and knowing people who are like the people you’re writing about are all essential!”

The blogger warns writers to avoid going in for the same old tired clichés and lists some of the more wretched clichés she’s seen in books with characters who have disabilities:

• CWD who exists only to teach a very special important lesson to the MC, either by being plucky, dying, or being plucky and then dying. These characters don’t exist for their own benefit, they’re only there to provide Life Lessons.
• CWD who only exists to inspire or motivate the MC but has no goals or desires of her own.
• CWD who is an object of pity, and acts only as a completely inactive idle piece of scenery on the novel stage.
• CWD who is 100% solely about their disability. No one is 100% all about one thing. Why wouldn’t a character with a disability have a whole spectrum of other characteristics — traits, hobbies, interests, friends, and family like any other well-rounded character?
• CWD who is magically cured of their disability in a fantasy novel. It’s a cheapo plot point that only serves to emphasize how undesirable it is to be a person with a disability.

The blogger leaves us with one last important bit of advice: don’t limit the adventure potential of your characters with disabilities. It is the 21st century, after all. “Quadriplegics go skydiving, kindergarteners with cerebral palsy ski black diamond slopes,” she writes. “Every marathon has its own wheelchair division, and a guy with no legs runs faster than almost everyone on the planet.” Her message is simple, really. Writers don’t have to go overboard manufacturing stories that depict characters with disabilities as heroic. People with disabilities are already the heroes of their own stories.

Changing the course of a child’s development

by Crystal Ward

I have exciting news to share from Easter Seals DuPage an the Fox Valley Region: our Make the First Five Count campaign was featured on the front page of the Daily Herald Health and Fitness section this week!

The story said that the National Survey of Children’s Health reports that nearly 25 percent of American children younger than 5 years old are at risk for developmental delays or behavioral problems. Our national Easter Seals Make The First Five Count program is meant to empower parents to ask questions, seek early help and ensure all children have access to early identification and services when needed.

Cara Long, a registered nurse and parent liaison here, was quoted in the story:

“While every child develops at their own pace, certain milestones are important,” says Cara Long, a registered nurse and parent liaison at Easter Seals DuPage and the Fox Valley Region, an accredited outpatient pediatric rehabilitation center with locations in Villa Park, Naperville and Elgin. “These milestones are important because they are good indicators of possible language, motor skill, social/emotional or cognitive delays, autism or other learning disabilities.”

Several children from Easter Seals DuPage and the Fox Valley Region were featured in the story, including Charlie Krupka, Ivy Joy Knight and Charlie Feuerborn. Tara Kehoe, our Manager of Speech Therapy was quoted in the story along with Cara Long.

Cara spoke for all of us when she told reporters that parents should follow their instincts. If a child misses a milestone or if something doesn’t feel quite right, it might indicate a problem and be a signal to call the child’s pediatrician. Cara explained that decades of research show early experiences play a vital role in brain development, and early intervention services can change the course of a child’s development.

Using surveillance data to develop services and supports

by Patricia Wright

One of the primary responsibilities of the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention is the surveillance and the collection, analysis, interpretation and dissemination of health data. NCBDDD has been collecting data on autism for years, and with the prevalence of autism growing and changing, there is a growing need for services and support for individuals on the spectrum. Coleen A. Boyle, PhD, MSHyg, Director of the National Center on Birth Defects and Developmental Disabilities, does a great job explaining the surveillance data In this clip from CNN while also highlighting the importance of early intervention and the effects that early intervention has on long-term outcomes for autism and other developmental disabilities.

Surveillance IS important, no question. To make a real impact, however, the resulting data must be used to develop services and supports for individuals who are identified through the surveillance. Getting word out about the NCBDDD and all it does at the Centers for Disease Control and Prevention is no easy task. Dr. Boyle takes on this responsibility every day and does a tremendous job.

A.C. Moore crafting a better world for kids with autism

by Katy Beh Neas

What a great day in New Jersey! I was recently able to say thank you in person to the good people at A.C. Moore Arts and Crafts for raising $170,000 for Easter Seals’ autism services. A.C. Moore’s efforts with Easter Seals are part of their Crafting a Better World initiative. I love these guys (and gals)!

The most amazing part was being able to see that our saying THANK YOU mattered to the A.C. Moore staff. We were so jazzed that they beat last year’s tally and are excited to make next year’s efforts even grander. All the funds that were raised go back into the community for direct services. That’s what we do.

As the economy continues to struggle, many of our families are facing tough choices, and whether or not they can pay for all the services their child with autism needs shouldn’t have to be one of them. Thanks to A.C. Moore, we will be able to help more families support the growth and development of their kids with autism.

OK, so I might have been a little crafty in my youth. My mom taught me how to sew, do needle point and knit. I have lost most of these skills as an adult. But, being in the AC Moore store this week made me want to learn something new. I’ll definitely be heading to my local A.C. Moore store this weekend.

Remember to ask the experts for answers

by Beth Finke

Just a quick reminder that this is the week you can ask questions on autism and blindness and get answers from experts free of cost — just use the Journal of Visual Impairment & Blindness (JVIB) Online Comment-On-This-Article feature. The posted questions will be answered by authors of textbooks on the subject.

I just left a question there myself. Our son Gus is 24 years old and doesn’t talk (or at least, not like we do). It’s obvious that Gus has vision problems — he never looks right at his cup when he picks it up, for example, but manages to pick the cup up without spilling the contents. Without being able to speak, Gus hasn’t been able to take an average eye test. Doctors diagnosed him with something ill-defined called “cortical blindness.” I asked the experts on line whether there are any new ways to test the eyesight of people like Gus, and am eagerly awaiting their answer.

The June 2011 issue of the JVIB features a special focus on Autism Spectrum Disorders and blindness. Access to these articles on JVIB Online are free, but just for this week.

So remember to visit JVIB Online before Friday, June 10 to participate like I did. What an easy way to get some of your difficult questions answered.

Summer is here … time to eat cookies!

by Beth Finke

For a while there we were worried it might never happen, but the weather finally did warm up, and summer is here at last. So stoke up the barbecues! Enjoy some outdoor festivals! Eat bags of cookies!

Eat cookies? You read that right. Sweet Tomatoes’ annual cookie campaign has become a summer tradition here at Easter Seals. This year, the promotion has expanded to include three new markets. Sweet Tomatoes Restaurants in Arizona, Colorado, Illinois, Kansas, Missouri, Nevada, Oregon, Utah and Washington are participating in the 2011 fundraiser.

From now until the end of June, select Sweet Tomatoes restaurants will donate $1 to Easter Seals for each bag of homemade cookies sold. And that’s not all — restaurant guests will also receive a coupon for a future visit as a thank you for their cookie purchase.

Sweet Tomatoes has supported Easter Seals for five years and has raised nearly $130,000, making them an Easter Seals National Corporate Partner. Donations collected from the campaign support Easter Seals programs for people with autism and other disabilities.

So go ahead and indulge in a bag of homemade cookies without feeling guilty! Each and every time you and your family visit a Sweet Tomatoes in June, you can help support essential Easter Seals programs in your community!

Hiring at Easter Seals Southeast Wisconsin

by Bob Glowacki

Earlier this year I published a blog post about our search for a new Children’s Services Director at Easter Seals Southeast Wisconsin. One of our goals was to find a candidate who was committed to our early intervention services and brought a strong background in autism treatment. We found that person in Erin Paschke, our new Children Services Director.

Erin has been working with families and children affected by Autism Spectrum Disorders for over 10 years. She has experience creating, developing, and evaluating a variety of programming for early intervention, social skill groups, and parent empowerment courses. Erin has experience in research and in administering standardized assessments. She has served as both the lead investigator as well as researcher in multiple research studies, and she has presented programs and findings to multiple audiences. Erin has a wealth of experience from The Southwest Autism Research and Resource Center in Phoenix where she created and implemented numerous programs in both clinical and community-based settings. Yes, you read that right: she moved back to the Midwest! I guess she missed our winters.

Erin is trained in a train-the-trainer model by the Koegel Autism Center in Pivotal Response Treatment and is seeking ways to provide that training at Easter Seals. Her main focus is not only in furthering the creation of a clinically sound program at Easter Seals, but in equipping parents, family members, and community-based agencies with the knowledge and skills necessary for creating successful environments in which individuals affected by Autism Spectrum Disorders can truly reach their full potential.

We are pleased to have Erin Paschke join our talented staff as our new Children Services Director. Pllease keep in mind that we at Easter Seals Southeast Wisconsin are always looking for individuals who are looking to start their careers in autism as line and senior therapists. Link to the job opportunities page on our web site for more information on how to apply.

Access to quality intervention

by Patricia Wright

A lot of autism interventions have great outcomes, and these outcomes are published in quality, peer-reviewed journals. Most of these interventions are happening in highly controlled, resource rich settings. Universities, for example. Easter Seals strives to provide quality service and seeks professional development in best practices, but replicating interventions developed within a highly controlled setting like that can be challenging.

Implementation Science (also known as Type 2 Translational Research) is an emerging science that attempts to get those great research practices out into the field and conduct research in a manner that ensures that the practices can be conducted in the field. One of my favorite researchers interested in Implementation Science is David Mandell. Dr. Mandell presented his current research at last month’s International Society for Autism Research meeting in San Diego, and while he was there, Dr. Mandell took time out to film a video discussing Implementation Science with Alex Plank. Alex Plank founded WrongPlanet.net (a popular community for individuals with Asperger’s Syndrome and Autism) after being diagnosed with Asperger’s.

Access to quality services and supports that promote the best outcomes must be available to all individuals living with autism. The field of autism interventions is rife with practices that have no evidence. Maybe if quality interventions were easily accessible, individuals with autism pursuing intervention wouldn’t be as distracted with those spurious claims made by so many. I so appreciate Dr. Mandell and Mr. Plank taking the time to discuss this topic. We all need to advocate for access to quality intervention.

Moving out of state for autism services — Illinois gets an ‘F’

by Beth Finke

With all the talk in the news lately about states cutting programs due to high budget deficits, it was interesting to read an article in the Chicago Tribune last weekend about families with disabilities leaving the Chicago area to move to other states. The story says there is no statistical study about why families with disabilities might leave one state for another, but anecdotal evidence suggests that many parents of children with disabilities here in the Chicago area plan to leave— or have already left — because of the lack of funding for human services here. The writers interviewed the mother of a seven-year-old named Jeffery who has autism:

One week after Patrice Evans’ preschooler was diagnosed with autism, her Grayslake Illinois home was on the market and she was headed to Kenosha for Wisconsin’s generous funding of intensive therapy.

My husband and I have known for years how poorly the State of Illinois ranks when it comes to funding programs for people with disabilities. Despite Wisconsin’s battered economy, the state allocates more resources than Illinois does to children like our son Gus. The Tribune story confirmed what we knew already, reporting that United Cerebral Palsy ranks Illinois 48th out of 50 for providing services, and University of Colorado’s Coleman Institute of Cognitive Disorders puts Illinois near the bottom for funding autism spectrum disorders.

Perhaps that is why about one-third of the parents in the Kenosha-area autism support group are Illinois refugees, said Farrah Sonnenberg, Geoffrey’s service provider.

When it came time for our son Gus to move away we placed him in a group home in Wisconsin. It’s difficult to visit him regularly from faraway Chicago. We would rather have him close to home. Just like the families in this Tribune story, though, we feel more confident about services in Wisconsin, and we often talk about relocating there ourselves.

Easter Seals has prepared a state-of-the-states report on autism services that is a comprehensive and objective resource on how the fifty states, District of Columbia and Puerto Rico are responding to the needs of individuals living with autism spectrum disorders, including the 23 states that have passed autism insurance legislation.

The profiles highlight the number of children with autism who have received the state’s special education services, state insurance coverage for autism if available, Medicaid services specific for individuals with autism, educational programs provided to students with autism or training that focused on autism, special education criteria, other state-led resources, and sponsors of autism legislation. I encourage you to give our State Autism Profiles a look. The profiles are a very helpful resource when you’re thinking about making difficult — and life-changing — decisions for you and your family.

Autism and blindness: your chance to ask the experts

by Beth Finke

Here’s a topic that’s right up my alley: I just found out that the June 2011 issue of the Journal of Visual Impairment & Blindness (JVIB) will feature a special focus on Autism Spectrum Disorders and blindness. In conjunction with this issue, JVIB is offering readers an opportunity to have their questions answered by the expert writers whose perspectives will appear in the journal.

Shirley Cohen, Ph.D., is a nationally known authority on autism spectrum disorders and the author of three books on disability, including Targeting Autism. Marilyn Gense, M.A. and Jay Gense, Ed.S., are the co-authors of Autism Spectrum Disorders and Visual Impairment: Meeting Students’ Learning Needs.

During the week of June 6-10, 2011, readers are invited to post comments and ask questions using the JVIB Online comment-on-this-article feature. The posted questions will be answered by the authors themselves. Access to these articles on JVIB Online will be free during the week of this special event. The press release about all this says they’ll be discussing a range of issues: everything from a modified core curriculum for learners with autism spectrum disorders and visual impairments, to the possible relationship between autism spectrum disorders and optic nerve hypoplasia, to the best ways to provide services to students. Remember to visit JVIB Online June 6-10 to participate and get some of your questions answered.