Brothers and sisters are special too!

by Crystal Ward

A story in the Daily Herald describes how a grant from the Amicus Foundation will help Easter Seals DuPage and the Fox Valley Region continue providing services to families of children with disabilities.

The grant will fund continued support services for parents and siblings of children with disabilities through a part-time parent liaison, a Summer Siblings Program and a Parent Resource Library.

Our Summer Sibling Program provides children who have siblings with autism or other disabilities with the opportunity to meet other siblings who understand and know what it’s like to have a brother or sister with special needs. The summer program (run by two college interns specializing in the social service field and supervised by one of our social workers) serves as a reminder that as we think of the many, many children we serve who are diagnosed with autism, there are hundreds more who are affected in their family relationships.

A big thank you to Amicus Foundation for supporting this program — the Amicus Foundation has contributed to social services here since 2006.

No more silence — cracking down on abuse in NY

by Beth Finke

Patricia Wright wrote a post here in June about a 13 year old boy with autism who died while under the care of staff from in a residential facility in New York.

Jonathan resided in the Oswald D. Heck Developmental Center near Albany New York. The individuals providing support to Jonathan were not trained properly, nor did they have the aptitude to be providing care to individuals with disabilities. This lack of ability resulted in a tragic death.

Now a story in yesterday’s New York Times reports that the Cuomo administration has made an agreement with the state Police to establish guidelines for reporting possible crimes against people with developmental disabilities to law enforcement authorities. From the story:

For years, the Office for People With Developmental Disabilities, a state agency that runs more than 1,000 group homes and regulates thousands more, has almost entirely policed itself and resisted disclosure. Likewise, some police agencies have been reluctant to investigate allegations of abuse in such facilities, often involving individuals who cannot even speak.

New York state law has long required people to report crimes against people with developmental disabilities, but the New York Times story said relatively few cases are actually reported to law enforcement officials. The new plan could possibly reshape how the state approaches enforcement against abuse of people with autism and other developmental disabilities. Definitely a move in the right direction, but I’m waiting to see how it’s carried out — and what force it has.

Extraordinary fathers, extraordinary sons

by Beth Finke

Loyal blog readers might recall a post I wrote last spring after hearing a piece on NPR about a memoir written by the father of a child with severe disabilities. I ended up buying The Boy in the Moon for my husband as a Father’s Day gift. Mike just finished reading it and is recommending it to just about everyone he knows.

Well, everyone he knows that realizes we have a son, I guess. Gus lives in a group home hundreds of miles away. Like other parents, we love our son. Think about him. Worry about him. But loving a child who has autism or other severe disabilities can be difficult to explain, so we tend not to try.

Mike admits that he wonders what people think of what it’s like raising a son like Gus. He can get angry if he detects pity — or condescension — toward Gus, toward Mike and me, or the unspoken wonder that we could love a kid like Gus. And he can get hurt if people don’t ask — or don’t know how to ask — about our son. And then, when they do, we can tell that sometimes they don’t really want to hear the answer.

Mike says that over time, he has come to understand that Gus, and life with our son, simply had to be a mystery to others. “I mean, c’mon Beth,” he says. “Gus’ life has been — at least in real time — kind of a mystery to me.” Gus lived with us at home for 16 years, and all that time Mike felt like he had no way of telling others what that was like. And he feels like there is little way to explain what it is like having him live away from us now, either. After reading The Boy in the Moon, though, he says he doesn’t have to. He says Ian Brown, a writer for the Toronto Globe & Mail, has done a superb job explaining what it’s like to live with an extraordinary son. Now he wants all our friends and family to go out and buy The Boy in the Moon and read it as soon as they can fit it into their schedules. He insists he’s not asking them to do this just for me and Mike and Gus, but he does admit to selfish motives. He says if our friends and family read this book — which is the author’s account of raising and trying to understand his son Walker, who has a rare genetic disorder that leaves him with multiple disabilities — they’ll know what it has been like raising Gus. While Mike was reading the book, he’d often read Brown’s accounts out loud to me. It was uncanny how similar Ian Brown’s stories about raising Walker were to Mike’s memories of raising Gus — from receiving the genetic diagnosis to the 16 years of sleep deprivation to what it was like to parade around hyper-normal places like Disney World when things are not normal.

Most important to Mike, however, is that readers who finish the book will come out with a better understanding of why raising a son like Gus is worth it. While reading the book, Mike took to quoting one thing the author said about Walker: “Everything about him compels me, unless it terrifies me, and sometimes it does both.”

The first half or so of the book covers Brown’s experience as a parent and a husband, but the rest is a look at what people with autism and other disabilities, like Gus and Walker, have to offer the rest of us. What they can teach us. Mike was fully aware that some readers might be skeptical that people with severe disabilities can teach us anything at all, or that readers might expect the book to be saccharine-sweet. “The book it’s richer — and more complicated — than that,” he told me. All of you families and caretakers know that people like Walker and Gus teach us extraordinary things. Mike says this book explains how and why better than he ever could. It turned out to be a perfect Father’s Day gift for Mike, and now, on his recommendation, I hope you’ll read it, too.

Warning: The joy of Easter Seals camp is contagious!

by Beth Finke

Earlier this month Rachel Talen (Public Relations Coordinator at Easter Seals Headquarters)and Katie Pieper (National Database Coordinator, Senior Community Service Employment Program grant ) joined Marketing and Corporate Relations interns Kate Duffy and TJ Spalty to take advantage of an invitation from Easter Seals Peoria and Bloomington-Normal and Decatur to visit their Penguin Project Camp at Timber Pointe Outdoor Center in Hudson, Illinois. I am pleased to introduce them as guest bloggers today so they can describe their experiences.

Rachel

We arrived at camp just in time for a dance party! What a fun way to kick off our time at the Penguin Project! After dancing and chatting with the kids and counselors, we learned these dance parties happen after each meal and in between activities. These kids know how to have fun and completely wore us out! After our dance party, we got to join the kids and counselors for a game of capture the flag and theater practice. TJ jumped right in and learned some lines and dance steps, too. Later on, we all went for pontoon boat rides around Lake Bloomington. Camp is so great — kids can play, dance, run around, be loud and just be themselves, and it brings out each of their unique personalities. I will never forget Wyatt’s toothy grin, Kaitlin’s glitter blue nail polish, Steve’s dance moves or when Jessie grabbed my hand walking to our next activity. I’m so grateful I had the opportunity to experience how fun Easter Seals can be!

Kate

Our experience at Camp Timber Pointe was truly amazing, and we couldn’t have received a warmer welcome. The staff and counselors were so wonderful, and the kids’ enthusiasm for camp was absolutely contagious — Who wouldn’t want to finish every meal jamming with friends?!

The thing I cherish most about our visit is the conversations I had with the campers. Alexa and I discussed the logistics of Build-A-Bear design, I sang “You are My Sunshine” with Wyatt, played “photographer” with Kelsey and heard all about how much Taylor loves The Penguin Project. Camp really seems, for lack of a better word, like a magical place to me. As an intern, I couldn’t have asked for a better first-time experience at an Easter Seals facility. I’m so happy I had this chance to grow more closely connected to the Easter Seals mission and cause.

TJ

After spending over a month interning for the the Marketing and Corporate Relations department at Easter Seals headquarters I felt that I had developed a firm understanding of Easter Seals and its mission. But all the hours spent working in the headquarters office at the Willis Tower in Chicago could never communicate what Easter Seals does the way my two days spent at the Penguin Project Camp did.

The kids had just finished lunch when we arrived, and they moved straight on to dancing. Their positive energy was contagious, and we jumped right up on the dance floor with them. After a few of these high quality groove sessions, I realized it wasn’t just their respect for tradition that made them dance — dancing was the best way to communicate their excitement and joy. These were kids that had so often been ignored, excluded, or forgotten, but in this place they were able to take center stage. Easter Seals’ mission was playing out before my very eyes.

Katie

As Rachel, Kate, and TJ mentioned, the kids were amazing. It was incredibly touching to be able to see them blossom in such an accepting and loving community. Kids perceived as shy back home were asking dates to the dance, sliding along the floor to music and laughing with each other. They sang “Lean On Me” on their last camp night, and defied Gravity during their final performance in front of their families.

Which brings me to one thing I had, admittedly, never really spent much time thinking about: the families of the campers. What a wonderful opportunity for this group of care-takers and families to get the much-needed (and often unavailable) time to recharge and focus on siblings who don’t always get as much attention. It was incredibly touching to see the families arrive at the lodge to get a visit in with their kids before the performance. After a quick hug and hello, most of them sat back with big smiles on their faces, taking pictures and talking amongst themselves. They were soaking in this special opportunity, seeing their children casually and playfully interact with the other campers and the counselors.

The counselors were quick to share how working at the camp has shaped them, and all the tears towards the end of camp made it clear how close the bonds grow between camper and counselor over such a quick period of time. I saw first-hand how cherished the experience is, and what an incredible impact Timber Pointe Outdoor Center makes on the lives of so many different people. Back at work here in Chicago, we couldn’t stop thinking about our camp experiences. All of us agreed: it was a highlight of our summer!

Aging out at 18

by Beth Finke

I emailed a friend in Toronto and mentioned we were heading to Wisconsin to visit our son Gus in his group home. My friend wrote back and said:

I was going to write you about this when I heard it. It was an episode of This American Life — love that show. Anyhow, there was an episode that aired first on September 15, 2006, #317, called Unconditional Love that featured in Act 2, Dave Royko’s story about his son Ben and a decision whether to move Ben into a home in Wisconsin. Ben was a child with autism and this story was about the decision. Have you ever heard of this family and is it the same home where Gus now resides?

Ben doesn’t live in the same group home where Gus lives, but as it happens, I have heard of this family: Patricia Wright wrote a blog post here about them after the Chicago Tribune published an essay David Royko wrote when he and his wife decided to send their 12-year-old son Ben to the Oconomowoc Developmental Training Center (ODTC) in Wisconsin. Ben turned 18 this summer and aged out of the ODTC. In a recent blog post on his own site, David describes his feelings about this next move for their son:

ODTC was the perfect place for Ben and for us, with good programming and a staff that was consistently caring, warm, compassionate, and most importantly, really “got” Ben, and enjoyed him. They were his surrogate parents, and we felt fortunate every weekend when we headed back home knowing Ben was with them.

David Royko’s blog post about Ben’s move to the Monarch School in Shaker Heights, Ohio, includes email updates from staff at Ben’s new school. Those of you facing a new transition with a child who has autism might find these updates helpful. The post ends like this:

So, overall, given the expected ups and downs, Ben is adjusting. We’ll be heading out tomorrow for our second visit. This past weekend felt almost surreal, the first time in five years that both Karen and I were home all weekend without going to see Ben. And we wondered: What was it like for him?

If you’re like me, and you missed the This American Life radio essay about Ben’s original transition from his home in the Chicago suburbs to the facility in Wisconsin, you can still hear it online. Thanks to the recommendation from my friend in Toronto, I’m going to sit down and give it a listen right now.

Professionals and parents working together

by Beth Finke

I swear, sometimes our Easter Seals National Director of Autism Services is just too humble. Patricia Wright wrote a post last week about being at an autism conference in Montana, but what she failed to mention was that she gave the keynote address! And not only that, she was featured in a story about the conference on ABC’s KTVQ News in Billings.

The KQTV story highlighted how The 8th Annual At-Risk Conference: Technology in Action focused on ways people with autism can use technology to enhance their quality of life. The conference provided hands-on training, in addition to informational sessions.

After learning that Patricia had given the keynote, I took a closer look at the conference web site. Imagine my delight to find three different staff members from Easter Seals Goodwill Northern Rocky Mountain listed on the conference planning committee: Paula H. Kitzenberg, Kelly Melius, and Sharon Weatherwax-Ripley. And then, just as cool to see the credentials of two other conference planners :

Laura Simonsen
Brandon’s Mom

Marlene Hauck
Jared’s Mom

All the other conference planners had letters like “MSW” or “MPH” after their names — it was downright refreshing to see “MOMs” listed with equal importance. I have a feeling their input was a great help in making this conference a success.

And so, okay, Dr. Wright may have never told me anything about her keynote or the TV story, but she did alert me to something about the Montana conference that was dear to her heart. “I love going to Montana,” she told me. “Especially since this was one of those autism conferences put together by, and attended by, both professionals and parents interested in learning more about autism.

Spelling out the effects of the deficit reduction plan

by Katy Beh Neas

On Tuesday, August 2, President Obama signed into law debt limit and deficit reduction legislation. White House and congressional staff tell us that the many calls and letters that Easter Seals supporters sent to Congress, as well as the visit by Easter Seals clients to the White House last month, are a big part of why Medicaid was protected in the final deal.

The federal budget process is not over yet, though. Funding for programs that support people with autism and other disabilities continues to be at risk. Tell Congress: Continue to protect services and supports for people with disabilities at all stages of the deficit reduction process.

The debt ceiling deal has several steps. First, the debt ceiling deal specifically protects from cuts to Medicaid, Medicare and Social Security. The deal calls for an immediate cut of $1 to $1.2 trillion in spending spread over the next 10 years. Programs of importance to people with autism and other disabilities such as early intervention, job training and employment will be subject to these cuts. The decisions on the specific funding levels for specific programs will be made by later this fall.

Another key element of the deal is the establishment of a congressional “Super Committee,” to be made up of 12 members of Congress who will be equally from the House and Senate and from the two political parties. All parts of the federal budget spending and revenues are on the table. The committee must form a set of recommendations by November 23, 2011 and final legislation must be sent to the president by December 23, 2011.

If the Committee’s legislation is not finalized and enacted, an across-the-board cut to all federal programs would automatically go into effect. Medicare, Medicaid, Social Security and other programs serving low-income individuals are exempt from this across-the-board cut. Congress is also required to hold a vote on a balanced budget amendment.

Office of Public Affairs staff will continue to work vigilantly to assure that cuts at any stage in this process do not negatively impact people with disabilities.

Kids with disabilities more likely to be victims of bullying

by Beth Finke

A conclusion to a study reported in the latest issue of the journal Pediatrics might sound like an unfortunate “no-brainer” to those of us who have children with disabilities: being the victim of bullying is more common among elementary school students with disabilities than among children without disabilities.

The study published in Pediatrics surveyed more than 1,450 students in fourth through sixth grade. Parents were surveyed, too, and when researchers from the University of Pennsylvania, Johns Hopkins and Marshall University matched the survey responses up with school records they found that children with disabilities missed more days of school and had lower grades. These kids also reported higher levels of bullying and were less likely to feel safe in school. Students with special health care needs were less likely to report that getting good grades mattered to them.

The authors of the study wrote that these problems threaten the well-being of these kids and their future flourishing as adults.

Health and school professionals will need to work together to identify these children much earlier, ensure that they receive appropriate supports and services and monitor the effectiveness of services.

Ever since we launched our new Make the First Five Count campaign here at Easter Seals, I’ve been paying more attention to stories that emphasize the importance of early identification and supports and services for children with autism and other disabilities. Before reading this report, though, I hadn’t put it together that early identification and supports could prevent bullying.

Small town life has its advantages

by Patricia Wright

I was lucky enough to spend some time with my colleagues in Montana last week at the 8th Annual Autism Conference at Montana State University in Billings. Rural is a way of life in Montana. It’s not uncommon to hear people here saying things like, “I drove 400 miles to be here,” or “We live on a ranch.”

I used to think that children living in a rural area would not have quality services. I assumed their lives would be impacted negatively. But that was years ago, before I took a job with the Special Service Agency of Alaska.

When I was working in rural Alaska, I’d see children with autism playing after school with their cousins who lived in the village, attending school in the village alongside classmates they had grown up with since birth, fishing with their grandfather who was an elder in the village. These children may have had to take a plane in order to see a neurologist somewhere, but they were able to spend every day with an incredibly supportive community.

While at the conference in Montana last week, I heard stories similar to ones I heard in Alaska. Children with autism growing up in small towns in Montana have communities that know, love and appreciate them. The children still have challenges that result from their autism, but their local communities are much more successful in addressing those challenges: they view the child as part of the community.

My time in Montana was a reminder that rural doesn’t necessarily mean lack of quality. Being in a big city might mean that you have your choice of health care providers, but I think children living in rural communities have lots of opportunities, too.

Thanks to the Avril Lavigne Foundation!

by Jim Leiker

Great news from Easter Seals Capper Foundation! Earlier this year, Easter Seals affiliates from across the U.S. and Canada were invited to apply for an Avril Lavigne Rockstar Club at Easter Seals grant from the Avril Lavigne Foundation, and we just found out that Easter Seals Capper Foundation received one of the grants!

Avril Lavigne, a young, talented artist, actively demonstrates her passion about sharing a message of inclusion — that kids and young people with autism and other disabilities want to laugh, have fun with their friends, and just fit in — like all of us! We’ll use the grant for our ARTSTAR Camp — many families seek specialized programs like our camp for children with disabilities and their siblings or friends. Some children with autism and other disabilities require round-the-clock supervision. Our camp provides a fun morning of learning and creating for these young Rock Stars, and it also provides a brief respite for their parents.

The grants’ initiative evolved from the collaboration between Easter Seals and The Avril Lavigne Foundation originally announced in September 2010 to identify and support recreational programs for kids with disabilities and their families and communities. Thirty affiliates applied for grants to fund a program, and we are truly honored to be one of the four chosen to embody the Avril Lavigne Foundation’s R.O.C.K.S. mission: Respect, Opportunity, Choices, Knowledge, and Strength.

It’s just so exciting that Easter Seals Capper Foundation is one of the national affiliates selected to partner with Avril Lavigne, her foundation and Easter Seals — it speaks highly of our organization, Topeka, and the northeast Kansas community.