Check out these autism resource toolkits

by Scott Fogo

Remember my blog post about Easter Seals Crossroads delivering important autism resources to local pediatricians? On April 1st we conducted a mass distribution which reached 150 doctors in one day, and we are continuing to distribute autism resource toolkits.

The toolkit is a product of the American Academy of Pediatrics and is an awesome resource for any doctor providing primary care. It includes information on everything from screening and diagnosis to handouts that doctors may give to their families. It even includes sample referral forms and letters that doctors can use to gain access to insurance payment for early intervention, educational, and therapeutic services for people with autism.

The toolkit story got picked up by the Indianapolis Star — last week they ran an article called Pediatricians Getting Help in Recognizing Signs of Autism. The article starts with a story about Easter Seals Crossroads and our medical director, Dr. Chuck Dietzen.

Dr. Chuck Dietzen, medical director at Easter Seals Crossroads, remembers the first child with autism he saw as a medical student in 1986. A mother brought her 6-year-old son, who was slow to develop, not toilet-trained, and non-interactive, to a specialist. Her pediatrician had said he would outgrow his condition, but she was rightfully concerned.

Now, Dietzen and his colleagues at Easter Seals Crossroads are trying to make sure that pediatricians in the community are up to date on autism. They’re in the process of distributing “autism resource tool kits” to about 200 pediatricians and family-practice physicians in the community.

The article includes a Q & A explaining why it is so important to keep pediatricians and physicians up-to-date on autism. Thanks to this article, many others might become aware of autism too.

Video games, bugs and kickball: celebrating Autism Awareness Month with Logan

by Bob Glowacki

Logan is one of the “one in every 110” children diagnosed with autism. He is very special to us here at Easter Seals Southeast Wisconsin, because he’s one of the first participants in our new Applied Behavioral Analysis (ABA) program.

Logan is an energetic eight-year-old boy with a great smile. He loves video games, bugs, kickball, singing and reading books with his older sister. Logan has a new activity he really likes: playing with Easter Seals autism staff members.

The therapy Logan had before coming to Easter Seals Southeast Wisconsin was not as productive or enjoyable. Frequently he would resist or have “melt downs” before daily therapy sessions. His parents, Bridgette and Bryan, knew that they needed to find a new approach.

From their first conversations they sensed that the Easter Seals Southeast Wisconsin staff was knowledgeable, professional and passionate about supporting families. “Easter Seals is different from most providers, they have a different approach and they really care about families,” Bryan told me.

After only a few weeks of ABA therapy, their little boy is “coming out of his shell.” Logan is more sociable, more outgoing and more willing to follow directions. But most importantly, Logan is learning behaviors in a fun way.

Mom and Dad both agree that Logan is having lots of fun and working hard for his therapists. His parents attribute this sudden change in his attitude to the relationships he has built with his team. He has bonded with each of the five who provide the in-home therapy sessions. They help to make therapy more relaxing and productive through a play approach. New behavior modification techniques are introduced gradually, on Logan’s terms, and reinforced with fun activities. Bridgette and Bryan believe that it is through this “new” approach that Logan is improving.

Logan’s story is one we need to remember during April, Autism Awareness Month. If autism is diagnosed early and followed by the right treatments, tens of thousands of Logans across the country can increase their independence and future opportunities.

Shop at Safeway and support Easter Seals

by Michael Pelfini

Here at Easter Seals Bay Area, We are still glowing over the recent launch event for Safeway’s April campaign supporting people with autism and other disabilities. It was a star-studded party at the Alameda, California Safeway store, featuring U.S. Olympic Gold Medal Skater Kristi Yamaguchi and NBA Great Sam Perkins.

Once again, Safeway is conducting its annual April fundraising campaign, which coincides with Autism Awareness Month. Just stop into a Safeway store during the month of April and support Easter Seals by donating at check-out stands. Store clerks will ask if you’d like to make a donation. Your donation will support the exceptional programs that make a difference in our community.

Safeway Inc. is one of Easter Seals Bay Area’s most generous corporate partners. Easter Seals Bay Area is honored to have the support of Safeway, its employees and customers. Together, we are helping children and adults living with autism and other disabilities.

Safeway’s commitment to local communities is coordinated by the Safeway Foundation, under the direction of Larree Renda, who wrote a guest blog here earlier this month. She says, “One of the reasons we’ve been with Easter Seals all these years is because the money we raise stays in local communities. And, Easter Seals is the best in its class at doing things efficiently so that the dollars raised go directly to clients served by the organization.”

Ten questions to ask when choosing a guardian for your child

by Beth Finke

A story on Forbes.com quotes Easter Seals’ good friend Joanne Gruszkos, director of MassMutual’s Special Care Program. The story points out that while one of the most critical decisions facing parents of children with autism is choosing who should assume the role of guardian when they are no longer able to care for their children, the question of guardianship often gets lost in the shuffle.

“Naming a guardian is an important decision for any child with special needs, but especially for children with autism who may have difficulty communicating their own wants and needs,” added Gruszkos.

To help with the process of identifying and naming a guardian, MassMutual developed a list of 10 questions parents can ask themselves.

1. Have you directly and openly discussed the issue with the adult whom you intend to name as guardian? Often, parents become so busy with day-to-day care of their child with special needs that future planning understandably takes a backseat. But failing to have an open discussion with your child’s prospective guardian could create disarray exactly when your child needs continuity.

2. Have you considered all your children — not just the eldest — as potential guardians to ensure you choose the one that is best-suited for the role? Often, parents simply assume that the oldest sibling will assume the role of guardian without discussing the possibility openly. Lack of candor can lead to serious complications. At a crucial time, a sibling might decline to take on the role or be ill-prepared to assume his or her duties. Additionally, other siblings might be temperamentally better-suited to assume the role of guardian.

3. Does the guardian you are naming live in the same state or in close proximity to your child with special needs? Living nearby can be important. The prospective guardian can begin to familiarize himself or herself with the daily needs of the child with special needs and to be involved in decisions that might affect both the child and the future guardian.

4. Is the guardian whom you are naming aware of the specifics of the day-to-day care and routine of your child with special needs? Do you have an outline describing this care in detail, and have you given time for the potential guardian to review it? Providing a would-be guardian with an outline of daily needs and activities can help him or her understand the scope of responsibilities. Additionally, the outline can help the future guardian determine the resources needed to provide this day-to-day care. Request a free Letter of Intent template on CD at Mass Mutual’s Web site.

5. Is the guardian whom you are naming at a time and place in his or her own life to successfully assume the role aware of changes in care that may be required over time for your child with special needs? A prospective guardian who is going through a life challenge — for example, a divorce or the birth of his or her own child — might be ill-equipped to take on the added challenge of guardianship. Moreover, the guardian must be made aware that the needs of the child with special needs could change over time, and that the guardian will need to be able to take on different or additional responsibilities in response.

6. Have you and/or the potential guardian considered the impact or strain the responsibilities of being a guardian may have on his or her marriage and family life? A prospective guardian might have the best intentions at heart, but might not recognize that assuming responsibility for a child with special needs could put stress on his or her own family life.

7. Have you considered the impact or strain the responsibility of being a guardian may have on the finances of the potential guardian? Caring for a child with special needs can be emotionally and financially demanding. An Easter Seals/MassMutual survey of families with children having autism found that more than half say caring for their child drains the family’s current financial resources (compared to 13 percent of parents of typically-developing children) and that 74 percent fear their children will not have enough financial support after they die, compared to only 18 percent of parents of typically-developing children. With specialized planning, families can address financial considerations and ease possible future financial problems.

8. Have you considered naming two guardians — one for the personal care of your child with special needs and one with responsibility for personal property? If a prospective guardian seems ill-suited to caring for both a child’s personal and financial needs, it’s possible to name two guardians to split the duties and ease the workload of each. A family member may be well-suited to carry out the child’s day-to-day care, and an impartial corporate trustee may be responsible for financial matters such as the safekeeping and management of the assets in a special needs trust, periodic trust accountings and accurate tax reporting and filing of tax returns.

9. Have you considered naming a guardian who is not a member of your family (e.g. a friend or institution) who/which might be better equipped to provide care for your child with special needs? Sometimes, the best guardian is not a member of the family but a non-family member or institution that is better equipped — experientially, emotionally and/or financially — to take on the job. Family members can still play important roles in the child’s care while knowing that the child’s guardianship is firmly established and professionally handled by this third party.

10. Have you considered naming a successor guardian if the guardian whom you name is unable to assume responsibility? Unforeseen circumstances can prevent your first choice as guardian from assuming his or her duties. If so, it’s important to have a back-up choice in place, including a potential corporate trustee, who is fully aware of what will be expected and is willing to assume those esponsibilities.

More information and resources are available on the autism page on MassMutual’s web site. For more details on the survey referenced in #7 of the MassMutual list above, download the Easter Seals Living with Autism Study results and key findings.

Sign our Act for Autism petition

by Beth Finke

We’re halfway through Autism Awareness Month, and Easter Seals is working on our goal to add 10,000 new signatures to our Act for Autism petition before April 30.

Our goal in reaching 10,000 signers by April 30 is to demonstrate that there is a large and engaged community of Easter Seals supporters and friends who are in favor of increasing funding, services and assistance for people living with autism and the families who love them.

When Easter Seals talks to decision-makers, we will use the petition’s response as evidence of the public’s outpouring of support for people living with autism, and as a call to action to do more to help those struggling to find the resources and the help they need today.

Join the fight for families living with autism: add your name to the following petition:

I’m joining Easter Seals to make life better for the millions of people touched by autism.

Autism is treatable, and people living with autism can make significant progress at any age. But for children, getting the right support early in life is critical to gaining the skills they need to be successful.

We must improve the educational and medical services available to individuals and families living with autism. There is an urgent need for increased funding, services and support for people living with autism to lead more independent lives.

Please share our petition with friends and colleagues. Together, we’re building a movement to increase funding, services and support for children and adults living with autism so that they can participate fully in life and realize their dreams.

Easter Seals Bay Area springs into action

by Matt McAlear

The rain clouds have passed and my tomato plants are in the ground, which in Northern California means that spring is upon us. Across the country, Easter Seals affiliates are gearing up for spring and summer programming for the individuals we serve every day.

Here at Easter Seals Bay Area, we are looking forward to:

• Celebrating with the graduates of our Child Development Center as they head off to kindergarten.
• Providing extended school year services at our Lily Learning Center, our school program dedicated to serving students with autism spectrum disorder.
• Enjoying the great outdoors with the Kaleidoscope summer program.

Thanks to programs like these, and the hundreds of others run by Easter Seals across the country, we are providing help, hope and answers to families and individuals living with autism today.

In addition to direct programming, our affiliates are working with local, state and national legislators to develop legislation that directly addresses the issues facing individuals and families living with autism. Here in California, many of our affiliates are members of the California State Senate Subcommittee on Autism Spectrum Disorders. The Committee is focused on addressing four important issues:

• Evaluation and treatment for children at an early age.
• That private health plans are doing their fair share to provide medically necessary services.
• Access to adequate employment opportunities, and
• The development and expansion of appropriate and affordable housing.

These taskforces consist of legislators, consumers, families, advocates and autism experts all working towards a common vision: helping individuals with autism live, learn, work, and play to their full potential.

We know we can’t do this alone, we know that autism is treatable, and we know that by working together we can make a difference in the lives of individuals and families living with autism right now. Autism may not affect every family, but every family can affect autism. For more information on what you can do to help, visit ActForAutism.org.

Creative ways to learn about autism at A.C. Moore

by Patricia Wright

I am pleased to introduce Rachel Talen as a guest blogger. Easter Seals is so fortunate to have Rachel as an intern. Rachel is a student at Calvin College and began interning at Easter Seals last fall.

A creative way to support families living with autism

by Rachel Talen

With April being Autism Awareness Month, A.C. Moore Arts & Crafts stores are providing a fun and creative forum to increase autism awareness. This Saturday, April 17, 2010, from 1:00 p.m. to 3:00 p.m., Eastern Time, A.C. Moore will throw a free in-store Make and Take craft event at all of its 135 locations.

Make an outing of it! Your family can come into the store to decorate an Act for Autism jigsaw puzzle together. Completing a project together can be a great opportunity to spend time with your family and to talk about autism.

Can’t make it out to one of the A.C. Moore locations? You can also go online for instructions to create a puzzle at home (PDF). It’s a way for you to play with your kids, decorate a jigsaw puzzle, and to learn about autism all at the same time.

A.C. Moore Arts & Crafts store is also helping out Easter Seals from March 1 through April 17 — shop now and you’ll be able to donate $1 to Easter Seals’ Act for Autism campaign at checkout. The money raised will support Easter Seals autism services in local communities.

Different, But Not Less: Temple Grandin

by Patricia Wright

This past Tuesday was Temple Grandin Day in Fort Collins, Colorado. The mayor of Fort Collins proclaimed April 6th “Temple Grandin Day” to recognize the Colorado State University professor’s contributions to the understanding and treatment of autism — and to improving conditions at large livestock processing plants.

Dr. Grandin truly is a remarkable woman, teacher, author, advocate and a revered person in the autism community. She has inspired individuals with autism, their families and countless professionals through sharing her success story.

That’s why Easter Seals is pleased to be able to welcome Dr. Grandin to our symposium in Fresno California this Sunday, April 11th. The symposium, Different, But Not Less: Strength-based Strategies Toward an Independent Life, will provide a forum for Dr. Grandin to share her strengths-based approach to life and how this approach has led to independence.

For those of us fortunate to be in the audience I’m sure the content will be riveting. Dr. Grandin has agreed to answer a few questions posed by those who may not be able to attend. If your question is selected, Dr. Grandin’s answer will be captured on video and posted on YouTube. Stay tuned to this blog to find out where the answers will be posted. Don’t miss this opportunity to submit your question!

Spreading hope and action with Parents Magazine

by Patricia Wright

Easter Seals is part of some great efforts surrounding autism this spring. We’re particularly excited about working with Parents Magazine to spread the word about the importance of autism services — and give families a way to help during Autism Awareness Month!

Be sure to check out the April issue of Parents Magazine — this month’s four-page spread highlights Easter Seals’ Act for Autism® campaign, providing information on early intervention, ways others can spread hope for families living with autism and why supporting early intervention services for young children is so important.

Parents Magazine has also offered Easter Seals another opportunity to spread hope and action for autism: the Parents Online Community. My Act for Autism group blog addresses autism topics and questions and comments regarding individuals with autism. I plan to spread the message that every child with autism (and their parents!) should have access to autism resources and care, necessary services, support and guidance at every life stage.

Parents Magazine is also supporting Easter Seals with the opportunity to receive a one-year subscription to its sister publication, Family Circle, with a $20 or more donation to Easter Seals. Just fill out the online donation form for a great way to support families living with autism during Autism Awareness Month.

Have a question for Temple Grandin? Ask her here!

by Patricia Wright

Temple Grandin is such an inspiration for so many individuals and families with autism. Her willingness to share her story with the public has given a vision of what is possible.

I still remember when I first read Emergence: Labeled Autistic in the 80s. Yep, over 20 years ago! Reading this book gave me hope that the children with autism in my classroom would grow up, lead meaningful lives, contribute to their communities — be successful!

Dr. Grandin has published additional books and given numerous lectures on the topic of autism. Most recently her biography was an HBO movie starring Claire Danes.

We at Easter Seals feel so fortunate that Dr. Grandin has agreed to join us at an event in Fresno, California this Sunday, April 11: Different, But Not Less: Strength-based Strategies Toward an Independent Life is an event that will focus on the strengths of Dr. Grandin and those with autism; strengths that can contribute to an independent life. Who better to tell this story than Dr. Grandin? This remarkable woman championed her strengths into an esteemed career in animal science.

Dr. Grandin has also graciously agreed to address questions at this event. If you would like to pose a question that focuses on strengths or independent life please post your question in the comment section below. The presentation and question-and-answer session will be videotaped. If your question is selected, Dr. Grandin’s answer will be captured on video and posted on YouTube. Stay tuned to this blog to find out where the answers will be posted. Don’t miss this opportunity to ask your question to Dr. Grandin!