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.”

Celebrities cross a line when they suggest therapies

by Debbie Smith

A story in USA Today asks whether or not celebrities are crossing a line when suggesting therapies for fans. The article says doctors and public health groups say they struggle over the best way to respond to celebrity claims.

Many doctors say they’re troubled by stars who cross the line from sharing their stories to championing questionable or even dangerous medical advice.

This hits such a nerve with me in so many ways. I applaud celebrities that support causes and want to help out, but it crosses the line with me when they want to give advice or tell individuals how they should live their lives or provide treatment to their own family members. The article says that maybe we get “comfort” knowing celebrities have medical issues, too, but I’m not so sure about that.

“It helps people to realize that health problems they have affect even celebrities,” says pediatrician Aaron Carroll, director of Indiana University’s Center for Health Policy and Professionalism Research. “Knowing that a rich and famous person can have the same problem as you or me makes it seem more fair, maybe.

“It also can make it easier to talk about your own problem, because a celebrity has the same issue.”

Celebrities have access to more funds and a wider array of resources than the general public, so to state that their circumstances are similar is far from equal. Celebrities have a host of others to support them when they are raising any child, but then, a child with special needs, well, they can afford the additional resources and time to implement a new fangled diet or whatever. Was it the diet that helped the child, or was it all the attention given to the structure that has been added to the child’s life that did the trick?

Each individual diagnosis of autism is an individual diagnosis of autism. Not all children have the exact same needs. There are so many other variables. What scares me is that parents are so eager for a solution that they will read these celebrity endorsements and follow their advice without medical intervention and then possibly cause greater problems for their child, either medical or behavioral. This makes it even harder for treatment professionals to really assist the family, creating a cycle of confusion/disillusionment and frustration for the parents and the child.

A case in point — the article calls out Jenny McCarthy and all of the attention she has received:

Actress Jenny McCarthy, who has an autistic son, has written several books linking autism with childhood vaccinations, even though a host of scientific studies show that vaccines are safe and not the cause of increasing autism rates.

Celebrities are not professionals, and if they truly understood autism they would not be making such broad statements.

Again, I think it is great for celebrities to be engaged in awareness campaigns, but treatment campaigns … no. They are causing more harm than good.

The great outdoors — inspired by Charlie

by Patricia Wright

A blogger I follow (and really like) is Kristina Chew. Dr. Chew is a Classics professor and the mother of a 12-year-old with autism. She blogged at My Son Has Autism/Autismland from 2006 to 2008, at Autismvox from 2006 to 2008, at Change.org from 2008 to 2009, and now she’s at We Go With Him.

And so, okay, she’s moved around a lot the past few years, but trust me, she’s worth keeping up with! Her willingness to provide a glimpse into her family is very generous, and her posts are typically insightful, sometimes heart breaking and always well written.

Dr. Chew frequently shares that her son Charlie has a great appreciation for the outdoors. For example, here’s a bit from a post she wrote for Change.org:

I like the idea of Charlie working on a farm. He likes being outdoors and the kind of work one does when gardening strikes me as combining many of the things he’s drawn to do.

And here’s one from a post she wrote for We Go With Him:

The ocean is the great equalizer for Charlie — he’s a 12-year-old boy first and foremost, diagnosed and diagnosis-less, straining for his independence and annoyed to no end to hear his parents placing limits and saying “be safe.”

Charlie is taller (far taller) than most of the children on the beach. When I see them, I can’t help thinking of my boy when he was all skinny limbs and clamored for us (both of us — this was when he was 6 and under) to carry him. Charlie was fascinated, absorbed, obsessed with the waves and quite reluctant to venture into them without Jim and me supporting him. Then we thought it’d be enough if Charlie could learn to hold onto his board and stay atop it. We knew we’d feel beyond joyous if could learn to swim so he could jump and splash in the waves like the other laughing kids around us.

Charlie did learn to swim, and that post features a photo of Charlie out in the waves while his mom and dad watch from the shore.

Outdoor activities can include kayaking, bike riding and the beach, to mention just a few. From my days as a classroom teacher, I remember well many students who really appreciated their time outside of the classroom. Kristina Chew’s posts about Charlie’s love of nature have inspired me to do some research on organizations who have gone out of their way to meet the unique needs of individuals with autism — even in the great outdoors.

Look for my next post to find out about a forestry organization that has partnered with the Autism Society of North Carolina to increase the accessibility of their programs. Stay tuned!

Autism Dog Blog

by Beth Finke

A lawyer named Matthew Stoloff keeps a blog about disability law that I check out from time to time. In his end-of-the-year post for 2009 — called The Year of the (Service) Dog — he links to some of the posts he’s written this year about children with autism and other disabilities bringing service dogs to school. Service Animals in the Schools provides readers with a list of objections to prepare for when administrators are leery about allowing service dogs in schools. A post called Are IEPs Necessary for Service Animals? mentions a case we blogged about this year. The case involves a child with autism here in Illinois who wants to bring his service dog to school. Among other things, the school district is arguing that the child cannot bring his service dog to school because it is not in the child’s Individualized Education Plan.

While I don’t always agree with Stoloff’s views, I always find his posts informative and full of links to go to for further information. He ends his Year of the (Service) Dog post with a prediction of what the new year has in store for service dogs:

Undoubtedly, more discussion, more debates, and possibly more litigation across the country regarding service animals. There will be more discussion about how to distinguish between service animals and companion pets. There will be more debates regarding whether exotic creatures can be trained to be service animals and whether dogs can “smell” an oncoming seizure or be trained to help autistic children from harming themselves. There will be more talk about whether service animals should be certified. We will likely see more service animals in the schools, on the streets, and in other places where the public is invited. This issue is not going away.

Here at the Easter Seals and Autism blog we’ll do our best to keep you posted. In the meantime…happy New Year!

Maurice rings in the new year

by Maurice Snell

As we prepare to celebrate the new year, I want to tell you about something special we did this month to close out 2009.On Friday, December 18, the folks at Easter Seals Metropolitan Chicago were hard at work raising money in the first annual Easter Seals radiothon. Citadel Talk WLS-AM/Chicago teamed up with Easter Seals Metropolitan Chicago to air a 13-hour radiothon to raise money and awareness. Award-winning host Pat Cassidy broadcast live from the phone bank located inside the Starbucks store at the Hotel Intercontinental, and People from Easter Seals Metropolitan Chicago volunteered their time answering lots of phone calls and taking pledges from many callers. The phones were ringing off the hook!

Cassidy featured local celebrities during the radiothon, he offered facts about autism, and he interviewed families affected by autism. I was fortunate enough to make my voice heard throughout the radiothon. I was interviewed by Pat Cassidy numerous times about this spectacular project we have going on at Easter Seals. My mission was to encourage those willing to donate their dollars towards a new therapeutic pool and fitness area for students and clients at the Therapeutic School and Center for Autism Research. My story of inspiration at Easter Seals encouraged thousands of callers to donate money to a worthy cause.

After that, I was willing to brave the elements of Chicago weather to encourage those outside the hotel to donate money, Salvation Army style. Which means I was Santa Claus, ringing a bell with a bucket for people to donate money. Sure it was cold along the Magnificent Mile, but we were fortunate to raise money needed for services.

In the end, we got on the radio to thank those who contributed in any way for Easter Seals. Cassidy also let listeners know that :

One hundred percent of the proceeds of the Radiothon will go to Easter Seals Therapeutic School and Center for Autism Research and related services. No administrative costs!

Thank you, WLS Radio. Happy New Year!