Kansas recognizes strong advocate for people with disabilities

Students and families from Easter Seals Capper Foundation were on hand at a program at the Kansas Museum of History earlier this month to hear Arthur Capper, founder of Easter Seals Capper Foundation, named a notable Kansan.

Kansas is celebrating its 150th birthday by naming 25 notable Kansans, and Arthur Capper made the prestigious list. Capper (1865-1951, was a two-time governor and five-time U.S. senator from Kansas, and he was a strong advocate for people with disabilities.

Gov. Sam Brownback was on hand for the announcement, too, and an article in the Topeka Capital-Journal quotes him:

“As we celebrate our sesquicentennial,” Brownback said, “let us celebrate the people who have been world-changers.”

Amen to that!

 

Full-spectrum marriage

I’m blind, and my husband can see. Mike and I have been married 26 years, so we’ve got that down. I hadn’t given much thought to other disability-related mixed marriages, though, until I read a story about a “full-spectrum marriage” on the Autism Support Network web site.

Kristi Sakai wrote the post. Her husband Nobuo has autism, and the two have been married 17 years. She lists some useful strategies they use to keep aware of and manage each others challenges. I especially like her sense of humor in strategy number three :

3. Provide visual supports to enhance communication.
“What do you want me to do? Draw you a picture?!” YES. We know that visual aids work for children on the spectrum. It also works on spectrum spouses. We’re familiar with grocery lists, but we take it further. After repeated explanations about a specific item only to have my husband return home with the WRONG thing again (bless his heart!), we have revised our communication system. First, I buy the item and show it to him so he has a visual reference. Second, I draw a very simple map of its location in the store. While this may sound tedious, as we generally buy the same items over and over, once he’s caught on, no further explanation is necessary, and in the long run it saves time and money — not to mention frustration.

I really do appreciate the way they refer to their marriage as “full-spectrum.” Gee, maybe we oughta start referring to ours as “bi-focal.”

 

AIM to increase your knowledge about autism

Google the word “autism” and take a guess at the number of results …

78,600,000 — that is NOT a typo. More than 78 million hits. I hate to break it to everyone, but not every one of those hits contains quality information.

The University of Google (as I affectionately call a Google Search) has become the go-to source for information in today’s society. Families and professionals type “autism” into Google and then attempt to sort through millions of entries. What a challenge!

At Easter Seals we want to help families access quality resources. My personal favorites :

These three do a great job of sharing information with families and professionals. A fantastic site for deeper learning about all sorts of topics related to autism is the Autism Internet Modules (AIM). AIM has been providing parents and professionals with up-to-date information since 2007. AIM is organized into 35 learning modules, and 35 more are in development. Each module is designed for self-paced learning. Imbedded video and great print resources support the module content, which has been developed by some of the top autism experts in the world.

AIM really is amazing. The self-paced platform makes it accessible to every learner. More than 55,000 learners in 120 different countries use AIM to increase their knowledge and understanding of autism. And get this: AIM is FREE! That’s right. You can take yourself through those 35 AIM modules, increase your knowledge in autism tremendously, and it won’t cost you a dime. So check it out. Log into AIM, choose a module, and know that you are learning from a quality information source.

 

Brothers and sisters are special too!

Summer Siblings group leader Maura Loftus helps Ryan Maude of Palatine with painting while he waits for his siblings to join him after therapy. 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

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

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!

Kate, a marketing intern at Easter Seals HQ, and Rachel, our Public Relations Coordinator, walked in on a dance party at Penguin Project Camp at Timber Pointe Outdoor Center in Hudson, ILEarlier 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

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

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

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.