Thanks to your comments, a new respite program is born

by Bob Glowacki

In my blog post last week I asked for ideas of services you’d like for your loved ones with autism. The post got a lot of comments, and I am sharing them with our leadership team.

I wanted to let you know that already, as a result of some of your comments, I have approved a new respite training program focused just on working with children and adults on the spectrum, called the Give Me A Break program. In partnership with the Autism Society of Southeast Wisconsin and the Respite Association, Easter Seals Southeast Wisconsin will devote over $10,000 of Easter Seals’ resources to make this program a reality in Wisconsin by the middle of 2010.

Thank you for your heartfelt comments, and please keep them coming. Your suggestions and ideas are very helpful to us as we gather to discuss Easter Seals Southeastern Wisconsin’s current status as an organization, survey our community for unmet needs and develop plans for service expansion.

Bay Area to host Autism Community Forum

by Patricia Wright

San Francisco, here I come!

Okay, really, I am going to be in Oakland. But that is so close! I lived in the Bay Area for almost ten years and, much like Tony Bennett, I left (at least a bit of) my heart there.

But next week I’ll be back. Easter Seals Bay Area is hosting a community autism event on February 5 to highlight evidence-based practice treatment strategies for children with autism, and I’m really looking forward to it.

One of the delightful things about this forum is that it will gather multiple community organizations, and we’ll all be there to share information and ideas. Nobody can meet the growing needs of individuals with autism alone, we must work together. Professionals from UCSF Autism Clinic will be at the forum, and professionals from the M.I.N.D. Institute are coming too. The health-related policy consultant for California’s Senate President pro Tem will also be in the mix.

Interest is high for the Easter Seals Bay Area Autism Community Forum. In fact, the forum is sold out: all three hundred available seats have been taken. This is testimony of the desire for quality information on the topic of autism. How wonderful that this is an inclusive event, drawing experts from the local community to meet the incredible needs of individuals with autism.

Happy Birthday, dear Bubble Wrap

by Beth Finke

You spent yesterday celebrating the 50th anniversary of the invention of Bubble Wrap, right? I sure did! Fifty years! It’s a momentous occasion.

Here at the Easter Seals and Autism Blog, we love Bubble Wrap. Two years ago our Celebrating Bubble Wrap post referred to an Autism Vox post by Kristina Chew. In her post, Chew wrote that her son Charlie, who has autism, “took a liking to bubble wrap a few years ago.”

He had long showed more interest in the ribbons and wrapping paper than in the actual presents themselves, no matter how elaborate a Playmobil set was concealed inside. Popping the plastic bubbles seemed to provide a sensory experience in several ways: Charlie could feel the thin plastic flattening beneath his fingers, and he could hear the effects: Pop, pop!

Comments to that post told us that Charlie is not alone. Lots of kids — and adults — who have autism enjoy Bubble Wrap. Further research back then revealed that Bubble Wrap Appreciation Day was just around the corner. Bubble Wrap Appreciation Day is the day Sealed Air Corporation (creator of Bubble Wrap) announces the grand prize winner of its annual “Bubble Wrap Competition for Young Inventors.” Among the 15 semi-finalists that year was a 13-year-old girl who had designed bubble wrap wallpaper to engage and stimulate children with autism. Hannah Haas described her sensory wallpaper like this:

Wallpaper designed to engage and stimulate children with autism through the combination of a textured bubble surface containing large and small bubbles, and a calming, blue wallpaper background.

You can watch a video about Hannah’s invention via MPG format or in Flash format.

When we found out that Hannah Haas was the grand prize winner, we published a post here encouraging everyone to Pop the cork … and the bubble wrap! Autism wallpaper wins!

And then, Just last month around holiday time, we published a post about engaging children with autism in play. Needless to say, the long list of ways to play included a line about Bubble Wrap.

Let your child pop the bubbles on bubble wrap using his hands, fingers and feet.

Happy Birthday, Bubble Wrap!

Tell us — what autism services do you need?

by Bob Glowacki

Here at Easter Seals Southeast Wisconsin we gather annually to discuss our current status as an organization, survey our community for unmet needs and develop plans for service expansion. This is a key dialogue within our agency management team. These discussions lead to new services — our Kenosha Adult Day Services program that opened in 2009 and our Autism services that will begin serving two children in one week through our new Applied Behavioral Analysis program are both results of the discussions we had last year. And this year is special: our recent merger with Waukesha Training Center means we now offer job placement and work opportunities.

Unfortunately, many times, with all we have going on and the limited resources of a non-profit, this is an internal discussion that carries our own thoughts, prejudices and personal interests. This blog allows me to reach beyond our walls and even our state to solicit ideas for services that can support individuals and families.

As a parent, family member or caregiver of someone living with autism or another disability, what are the needs you see in your area? What are some great programs or services we might consider bringing to Wisconsin? What programs or services are needed, not just for children, but adults?

Trust me, your input will be shared with a very talented, mission-driven team that will find a way to make it happen. Our team delivers. That’s why we feel fortunate to work at Easter Seals!

Benefits of music therapy: an old song

by Beth Finke

Like so many other people who have disabilities, our son Gus has always loved music. Gus doesn’t talk (at least not the way we do!) so he communicates by moving to whatever it is he needs. When he wants to hear music, for example, he scoots to the piano and taps (okay, sometimes he pounds) on the lid until I come to play for him. Gus laughs and sings with the tunes, and claps with delight whenever he gets an opportunity to hear music performed live.

A story in the Chicago Tribune quoted music experts saying something we parents have known for a long, long time:

Music is non-threatening, and it is all around us,” said Melaine Pohlman, a Geneva music therapist and president of the Illinois Association for Music Therapy. “We are all able to experience it on some level. Even folks who are severely impaired can experience music.”

The story also quoted Vinod Menon, associate professor of psychiatry, behavioral sciences and neurosciences at Stanford University. Menon said listening to music stimulates the brain in areas involved with paying attention, making predictions and updating memory.

These days parents are signing up children for music lessons who, years ago, might not have gotten the chance because of a disability.

In Hinsdale, for instance, Autumn Voakes, executive director of the American Music Institute said that more parents are seeking lessons for children with autism. She hired two teachers with special-education experience as a result and hopes to expand her programs to specialize in the area, she said.

New NJ laws bring attention to autism

by Kathy Patrick

Two new laws went into effect in New Jersey last Friday that will impact people here who have autism. One is intended to prevent discrimination, and the other allows adults with autism to join a statewide autism registry.

Both new laws take effect immediately. The first one expands New Jersey’s anti-discrimination law, which had previously applied to people with mental or physical disabilities. Now the law also ensures that New Jerseyans with autism and related neurological disorders cannot be denied access to libraries, restaurants, gyms, pools, theaters and other public places. It also applies to equal access to housing and jobs.

The second law allows adults to join the state autism registry. Registering is voluntary, and was initially only open to children. The autism registry was established so New Jersey health officials can track cases and look for possible trends.

I appreciate the efforts of legislators who want to help. Everyone knows that there’s so much more to be done, but every little bit helps. Their interest helps. Their attention helps. And really, any effort to move toward full inclusion, full understanding, and full support helps.

It’s getting warm … let’s surf!

by Beth Finke

Sound the trumpets! For the first time this month, the temperatures in Chicago are above freezing! And get this: it’s sunny out, too. Makes me dream about the warm weather to come, beaches, outdoor concerts, biking along the lakefront …

I’m not the only one pining for summer — a comment to Patricia Wright’s post about nature touted a surf therapy program for children with autism. As it turns out, Patricia Wright lived in Hawaii before accepting her position as National Director of Autism Services here at Easter Seals. That’s right — she moved from Hawaii to Chicago two years ago, and she’s still here. Now that’s dedication!

But back to surfing. “This is a very cool program!” Patricia told me. “They had an event every year in Hawaii. Huge names in surfing would show up and surf with the kids.” There are huge names in surfing? Who knew?

Patricia said she did water safety a couple of times for the event, and it was lots of fun. Who knows, maybe this could catch on in Chicago. I’ve heard that some folks surf right here on Lake Michigan from time to time.

I wouldn’t expect any surf therapy programs to spring up here very soon, though. It may be above freezing and sunny this week, but we still have a ways to go.

Special-needs trusts for special kids with autism

by Scott Fogo

A story in the Indianapolis Star called Special-needs loved ones require special estate planning points out how important — and difficult — it is to plan for the future of a child with special needs.

Financial planning is difficult enough. But planning when you have a special-needs child can be that much harder. Sometimes, the children need help managing their finances, well into adulthood. And sometimes, even the adults can make big mistakes, such as giving the children a gift that can push the children over the threshold where they are no longer eligible to receive government care.

I was interviewed for the story, and I told the reporter that here at Easter Seals Crossroads, we often hear from families requesting help with estate planning. Some of them worry they don’t have the funds to allow them to see a specialist, but that’s never the case.

“When it comes to financial planning, you don’t have to be Rockefellers,” Fogo said. “The common denominator, regardless of wealth or absence of wealth, is the concern about the child for the future.”

A person with autism or other special needs has to keep their income level low to continue receiving government benefits. This means that if a well-meaning relative gives a gift directly to a loved one with special needs, that person could lose their benefits.

One way to avoid this problem is to establish a special-needs trust for the child. The family designates someone to oversee the trust, usually a sibling or other relative. Mass Mutual, one of Easter Seals’ national corporate partners, offers helpful resources that explain more about special trusts, and Kevin Clasen, a special-care planner of MassMutual Life Insurance was also quoted in the Indianapolis Star about the value of a special-needs trust.

“If you don’t put it in a special-needs trust and the child inherits money through the normal process, the government is going to come back and say, ‘You inherited $20,000. That takes care of what we would have given you,’ ” Clasen said.

I know it’s hard to add yet another thing to a “to-do” list, but if you haven’t established a special-needs trust for your child yet, please consider doing so — it just might give you some peace of mind about the future.

Here’s the scoop: eating Friendly’s ice cream helps Easter Seals!

by Beth Finke

We’re 11 days into the new year already — time to throw those resolutions out the window! Here’s a chance to enjoy some ice cream without feeling guilty.

Starting today, and all the way up to Valentine’s Day, you can support Easter Seals Camp Friendly’s programs for kids with autism and other disabilities every time you visit a Friendly’s restaurant. Not only that, but you’ll be rewarded with a sheet of Valentine Cards! The Valentine Cards can be redeemed at Friendly’s for 5 free Kids Cones and $5 off any $25 purchase.

Funds raised in Friendly’s Cones for Kids program support Easter Seals Camp Friendly’s in 26 different locations. Camp Friendly’s provides an opportunity for kids with autism and other disabilities to be included in regular camp activities, such as boating, swimming, archery, campouts, hiking and sports. Through the Youth Leadership program, young adults with autism and other disabilities develop their leadership skills and begin to see new possibilities for themselves.

The Friendly Ice Cream Corporation has supported Easter Seals since 1981 with nearly $26 million through Cones for Kids. With the help of generous consumers, 26 Easter Seals affiliate organizations have benefited from this powerful campaign created by Friendly’s Restaurants up and down the East Coast.

So go ahead and enjoy some ice cream at a Friendly’s restaurant near you. Every time you and your family visit Friendly’s between now and February 13, you can help support essential disability camp programs in your community.

Autism, the outdoors, and forestry

by Patricia Wright

As promised in my blog post earlier this week, I am blogging today to share some information about an organization that has gone out of its way to meet the unique needs of individuals with autism — even in the great outdoors.

For years, the Cradle of Forestry has been helping people better understand local ecology through recreation and educational opportunities. Now, the Cradle of Forestry has partnered with the Autism Society of
North Carolina to increase the accessibility of their programs. Cradle of Forestry’s web site describes their specially designed Adventure Zone like this:

… a collective of hands-on activities (indoor and outdoors) that were designed to help children and adults with autism become active in the outdoors and gain a better understanding about the natural world. The Adventure Zone activities were created to be exciting for everyone! The maps and schedules we’ve added were designed to make these fun activities accessible for people on the autism spectrum, but the Zone is open to anyone who is interested in experiencing fun in the great outdoors.

What a great example — an organization stepping up to meet the needs of people with autism. Accessibility for outdoor activities is generally good, but the real world can present with a few barriers (barking dogs, busy traffic). How great that some organizations are attempting to meet the unique needs of individuals with autism — even in the great outdoors. And as it states in their literature, The Adventure Zone is open to anyone.

If North Carolina is on your list of places to visit (or if you are lucky enough to live locally) maybe you should put the Adventure Zone on your list of “must-sees.”