More selfless than other moms? Really?

by Beth Finke

Over the weekend a friend sent me a link to a post called Top 20 Reasons Moms of Kids With Special Needs ROCK. The post was published on a blog called momlogic. While I appreciate the sentiment, I gotta admit: I don’t really go for stuff that sets moms of kids with disabilities apart (better?) than other moms.

Let’s face it. Just about every mom loves their kid no matter what. So statements like this on this list actually turn me off :

• 10) Because we work overtime every single day.

C’mon. What mother doesn’t work overtime every single day? And then there’s this :

• 12) Because we are more selfless than other moms. Our kids need us more.

Really? Are we more selfless than “other” moms? I don’t think so.

Don’t get me wrong. I do understand it is different to be a mom to a kid with special needs. I just don’t agree that we are better moms. We are moms. And like so many other moms, we love our kids. We want the best for them. No matter what.

I do admit there was one item on the list that made me smile, and made me think of the love I have for our own son, Gus.

• 15) Because we understand our kids better than anyone else — even if they can’t talk; even if they can’t gesture; even if they can’t look us in the eye. We know. We just know.

It’s true! I can tell by the way Gus smacks his lips that he’s thirsty, I can tell if he’s afraid of something by the way he holds my hand. And I can definitely tell he’s happy by the way he laughs.

We had a wonderful time with Gus on Mother’s Weekend. Hope all of you — whether your kids have average or special needs — had a wonderful weekend, too.

Celebrating Mother’s Day with autism

by Beth Finke

My husband and I are taking off this weekend to visit our son Gus in his group home in Wisconsin. Gus won’t understand that it’s Mother’s Day, but as always, it will be great just to be with him.

Children with autism can find it challenging to express their feelings on Mother’s Day without guidance from a parent, teacher or caregiver. That doesn’t mean a family shouldn’t celebrate, though! Children with disabilities can mark the day in small ways that can speak volumes. Sometimes Gus signs a simple card. One year we took a scribble Gus had drawn and transformed it into a pin. This year, Mike and I are treating ourselves to a night in our favorite Milwaukee hotel after our visit with Gus. For us, Mother’s Day won’t be just one day. It’ll be an entire weekend.

If you are looking for ways to celebrate Mother’s Day, a company called Rethink Autism might have an idea for you. From a press release:

In appreciation of mothers of children with autism, Rethink Autism has drawn from its library of video lessons to provide a free online video with a few tips on how to teach a child with autism to appreciate Mom by making a gift or even a meal (using a microwave).

I checked out the video myself — it’s straightforward and easy to understand. The video lessons Rethink Autism produces are consistent with Applied Behavior Analysis
(ABA), a methodology we are a big fan of here at Easter Seals. So enjoy the video — I’m off to pack. Happy Mother’s Weekend!

Arrest My Sister: an adult-with-autism success story

by Paula Pompa-Craven

Autism Awareness Month sure kept us busy at Easter Seals Southern California! We have many services available for adults with autism and other disabilities, and those services were featured in several newspaper articles and radio and television interviews. Several stories featured our day services, residential support, community and recreational activities, financial planning, assistance with job training and finding a job.

Some of the articles and interviews featured adults with autism who were successfully employed, including one young man with autism who is a lead singer in a band. Scott Siegel, front man for the band Arrest My Sister, joined me for several radio interviews where he discussed what it is like to have autism, his relationship with Easter Seals and his success as a musician. You can link to our appearance on the SoCal Experience on ESPN Radio to hear for yourself what a terrific spokesman Scott is. Once you’re done there, listen to Arrest my Sister on YouTube to hear what a terrific musician he is, too!

All in all it was a great month and a nice way to get the information about Easter Seals Southern California’s services and supports out to the public.

Ten thousand copies of Maurice

by Maurice Snell

What better way to celebrate Autism Awareness Month at Easter Seals Metropolitan Chicago than to have a Balloon Launch event at the Easter Seals Therapeutic School and Center for Autism Research.

Simultaneously there was an open house at the school, which made April 23 a very busy day. What was most special about that Friday was that we had a couple of special guests that came to tour the school.

The first guest that came to the school was the honorable Sen. Richard Durbin (D-Illinois). I had the utmost pleasure of giving him and his dignitaries a grand tour of the Therapeutic School and he liked everything he saw. He came just in time for the staff and students to release the balloons outside of the school. Everyone including the Senator cheered as the different color balloons floated in the cloudy sky.

Just a few hours later, another special guest came. This time, it was Illinois Secretary of State Jesse White (note to my Illinois friends: he didn’t bring the tumblers). His office was responsible for helping organize the Adult Vocational Program, a transitional facility for clients who want a work opportunity. He, too, was impressed with the Therapeutic School, but actually he was more impressed with … me! I shared my success story, which was flattering.

He entertained some of the staff and students with his warm personality and smile. In the end, he requested “ten thousand copies of Maurice.” That absolutely made me laugh. I guess he meant that with Easter Seals and early intervention there could be ten thousand more people like Maurice in the world that can be successful and make a difference.

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.