Special dads with special sons

by Beth Finke

David Royko’s poignant Father’s Day post made me think of another loving father I know. Here’s my husband Mike Knezovich with a guest post, an honest and thoughtful tribute to special dads.

by Mike Knezovich

I was walking to a sandwich shop here in Chicago and was stopped in my tracks by the sight of a boy in a wheelchair and a man, presumably his dad, collecting themselves on the sidewalk. They had clearly just unloaded from the car parked nearby, and were readying for a walk.

It wasn’t the kind of wheelchair designed to be propelled by its user. It was, instead, focused on holding the boy—who clearly had substantial physical disabilities—in proper posture, with a headrest, and footrests arranged for that purpose, and with high handles to make it easy for someone else — in this case his dad — to push. Seeing it was a flashback to my own rituals of outings with our son Gus.

A visit with our son Gus at his group home.

The father made a last round of adjustments to the boy’s ball cap, to his seatbelt, and then gathered himself to push his son on a walk.

For a moment, I wanted to walk up to him to say something like, well, I didn’t know what. That it’ll be all right? What the hell did I know about whether it would be all right? And as a frog the size of Alaska grew in my throat, I thought better of saying anything to him just then, because, well, a stranger walking up and breaking into tears might not lift up his day.

By the time I left the shop with my sandwiches, and I was more composed, the man and his son were long gone. For a tiny split-second I wished I’d gone ahead earlier and told him everything was going to be alright. But in the next split-second I realized, again, that I couldn’t, honestly.

Beth and I are better than alright. But it isn’t the all right either of us had in mind. And it was harder than hell to get to our version of all right. That’s what the father and his son on the Chicago street face. Even if they have great friends and family and resources, it’s going to be really hard.

And if I ever see that man and his son again, this time I know what I’ll say to him. I’ll tell him he’s not alone.

Fatherhood with autism in the mix

by Jackie Orihill

It’s my pleasure to introduce David Royko, PsyD, as a guest blogger to talk about fatherhood and his 22-year-old son Ben, who has Autism Spectrum Disorder. Visit David’s personal blog to learn more about his family and books, including The Chronicles of Ben: Adventures in Autism as well as Royko in Love.

Babies Ben (left) and Jake

Fact 1: Nothing changes a guy’s life like fatherhood.

Fact 2: Nothing changes fatherhood like autism.

To be clear from the outset, when I refer to autism, I mean the classic, severe disorder that negatively and profoundly impacts the person for their entire lifespan. That is our son Ben’s reality. I am not referring, necessarily, to higher-functioning individuals who live with, for example, Asperger’s. Many, unlike Ben, can speak eloquently – or otherwise communicate – about autism and what it is for them, often not seen as a disorder at all, but a difference. I am writing only about what it has meant for Ben and for us.

Rocking newborn Ben or his twin Jake as they fussed at 3:00am, almost 22 years ago, I was sleepless, sweaty (it was a hot summer), exhausted, and getting to know the local cop’s overnight schedule patrolling the neighborhood.

Late night feedings are just one of countless little and big parental tasks and challenges – arduous, annoying, mundane, stressful, surprising, and required. They’re ploughed through with eyes (and ears and nostrils) focused beyond. A potentially wonderful, or at least decent and reasonably happy future awaits, we hope — for them and, unconsciously at least, for us too, Mom and Dad, with dreams for them and joy from sharing them for the rest of our lives.

One of those long nights, a favorite symphony of mine came on the radio as I held Ben, and in my drowsy, half-dreamy state, I pictured him growing into a conductor, the top spot in the classical music world, except for being a composer. So I envisioned him as the composer and the conductor. Then I imagined him simply getting to know and love this symphony, of my sharing this with him, discussing it with him, attending concerts with him.

OK, time for some of those changes.

Forget about Ben being a conductor. Or composer.

Forget about Ben talking about music beyond a word or two.

And forget about sitting with Ben in Orchestra Hall with the Mahler 3rd blazing.

But there’s good stuff.

Jake and Ben, December 2013 (photo credit: David Royko)

Ben is a musically perceptive guy, and he has strong preferences and loves. Even buried under his autism, with only little geysers of musical awareness bubbling up, we know for example, based on requests, he likes horns and brass, mandolins, violins, Schubert piano music, and Rafi (oh well). Overall, the guy has fine taste.

Our listening is done in the car, where he reads the stereo panel’s display to see what’s being played. Sometimes it’s clear, but he often comes up with his own “interpretations” of what he reads.

Like “Freight Train.” We figured out this means Nickel Creek’s bootleg Freight and Salvage disc, because the display’s limited length only gets as far as “Freight and Sa”.

Then there’s “Monkey’s Music,” which was Thelonious Monk’s “Monk’s Music.” It wasn’t obvious since Ben also loves monkeys, but it does suggest how strongly he feels about one of  Monk’s greatest albums.

And when he spontaneously belts out a chorus of something-or-other at the top of his lungs while loping through Target, it’s always in tune.

So Ben’s definitely musical. And I am deeply thankful for that.

The parental task and challenge for me – arduous, and required, maybe especially on Fathers Day, is to avoid thinking about what his musicality would mean without the shackles of autism.

But if I have a philosophy of life, it’s that life is a re-frame. If the glass is half-empty, find a different glass.

Ben’s aptitude for appreciating and loving music will never put him on a podium in front of an orchestra or behind a drum set driving a band (like his dad’s younger days). Or even sitting at a gig, listening.

Those are “what if”s.

What IS, for Ben, is the pure joy he gets from music. The grin that appears when a favorite tune begins on the stereo, or a request for a certain disc is fulfilled, or a favorite ditty is sung to him, or a favorite ditty is sung BY him in McDonald’s at fortissimo…

There has never been a composer, conductor, drummer or songbird who loves music more than Ben.

That makes my own heart sing. And even without the card, there is no better gift on Fathers Day.

Why you should eat this s’mores ice cream

by Beth Finke

At long last, a chance to enjoy ice cream without feeling guilty! This week Friendly’s Ice Cream introduced a new limited edition ice cream, and if you buy a 48-ounce carton to give it a try, Friendly’s will donate a portion of the proceeds to Easter Seals.

Friendly’s new S’mores flavor features toasted marshmallow ice cream with dark chocolate flakes and a graham cracker swirl. Y-U-M. They’re producing 9,500 cases of the s’mores ice cream flavor and will donate $1 from every case to Easter Seals. Based on the projected sales figures of this limited edition flavor, Friendly’s estimates that they will be donating $10,000 to Easter Seals.

For the past 34 years, Friendly’s has supported Easter Seals with its in-restaurant “Cones for Kids” campaign, but this new limited edition ice cream flavor is the first time Friendly’s has created a retail product that gives proceeds to Easter Seals.

So go ahead and enjoy some ice cream – it’ll make you feel good, and it’s good for us, too!

What happened to my guide dog after he saved my life?

by Beth Finke

Service dog who saved a life

A guide dog who saved his blind companion from getting hit by a mini-bus has been getting a lot of attention in the media. And well he should! A story in last Tuesday’s USA Today reports that the driver of a school bus in Brewster, N.Y., told police he didn’t see Audrey Stone and her guide dog Figo crossing the road as they made their way home. After the accident, Audrey was rushed by ambulance to a hospital while the Brewster Fire Department rushed her heroic guide dog to a vet. Both were hurt, but sources say both are recovering well:

Stone, 62, suffered a fractured right elbow, three broken ribs, a fractured ankle and a cut to her head in the accident, said Brewster Police Chief John Del Gardo. Figo’s leg was cut down to the bone, said Paul Schwartz, who manages the Extra Mart gas station at the intersection and ran to the scene.

The lead to the story in USA Today claimed that Golden Retriever Figo’s “protective instincts kicked in” to save his human companion, and while that may be true, it’s only a part of it.

Guide dog schools spend months teaching dogs to pull their blind companions back should oncoming vehicles come too close, and when we humans arrive at the schools to train with our new dogs, we practice over and over and over how to react to the dogs and move backwards with them, away from harm, should something like that happen.

Harper is very happy in his well-earned retirement, living with friends in a quiet suburb and hanging out with a neighbor — a Collie named Beau.

I have received all four of my dogs from the Seeing Eye school. With each one I’ve stayed there in Morristown, N.J., three weeks to learn how to work with that new dog before flying back home to Chicago. After the first week of training, Seeing Eye staff start heading out in vehicles to intentionally cut in front of us, simulating the very real behavior of drivers like that bus driver in New York.

All four of my dogs routinely refused to step into the street if they saw a vehicle barreling toward us, and if a car cut in front of us in the intersection, these dogs knew to pull me back from harm’s way. Otherwise they would never have been placed with a blind person as a Seeing Eye dog. All four of my dogs have saved us from multiple near misses, but the near-miss I had with my third dog Harper was too close for comfort.

Harper and I were at a busy Chicago intersection in 2012, and hearing cars going straight at our parallel, I commanded, “Harper, forward!” We’d taken a few steps into the intersection when a woman in a van turned the corner right in front of us.

Harper pulled us back with such force that I fell backward, cracking the back of my head on the concrete. The woman driving the van said later that she hadn’t seen us crossing the intersection. Harper saved our lives.

My husband Mike inspected the harness later and discovered it was bent. I Suspect Harper was clipped by the car. Seeing Eye instructors told me that after a near-miss like this, guide dogs tend to do one of three things:

1. Brush it off as to say, Hey, we almost got hit!” and just keep working
2. Need a little retraining before they get their confidence back
3. Never feel confident again and have to retire

Harper started showing fear around traffic after the near-miss. Three Seeing Eye trainers came one after another to help retrain him, but nothing worked. Harper trembled around traffic, his head down, his tail between his legs. City life had become too much for him.

The Seeing Eye staff members who’d come to visit us met in Morristown afterward to discuss Harper’s future. Could they bring him back to the Seeing Eye for retraining? Place him with some other blind person, one who lived in a calmer environment?

The head of training phoned me after their meeting. Harper would not be retrained, he said. I could go ahead and find friends to adopt him. I was crushed. So much time, energy and money had gone into training Harper. I’d hoped he could be placed with someone else so that all that effort wouldn’t have to go to waste.

Hearing the disappointment in my voice, the trainer on the other end of the phone assured me that the Seeing Eye’s hard work — and Harper’s training — had not been wasted at all. “Harper took a bullet for you,” he said. “And for that, he’s earned an early retirement.”

100 veterans and counting!

by Randall Rutta, President and CEO

Easter Seals President and CEO Randall Rutta (2nd from the right) at the Padres game (Photo credit: Sandy Huffaker)

Earlier this week I returned from a trip to Southern California, where I had the privilege to connect with Delores and Bob Hope’s granddaughter Miranda Hope and join her in celebrating the 100th veteran to obtain employment through Easter Seals.

Less than two years ago, the Bob and Delores Hope Foundation invested in Easter Seals’ efforts to support veterans with securing employment, creating the Easter Seals Bob Hope Veterans Support Program. In partnership with Easter Seals Dixon Center for Military and Veterans Services, Easter Seals Southern California has in that time helped 100 veterans to secure jobs and supported nearly twice that number with job-readiness, transition to education, and relocation.

This exciting program milestone was celebrated by CVS Health and Easter Seals last Monday, where Mike Brotherton pitched the first ball in a Padres-Mets game. While he successfully threw a fast, straight pitch directly into the catcher’s mitt, things didn’t go as well for the Padres.

Five hundred CVS Health associates attended the game, raising $5,000 for Easter Seals’ veterans employment services. Regional CVS Health executives Hank Casillas and Doug Palmieri joined Easter Seals Southern California CEO Mark Whitley, Veteran Program Director John Funk, Miranda Hope, and me on the field for the check presentation and a shout out to Easter Seals for our work with veterans and their families.

It was a proud night for our CVS Health partners, the Hope Family and Easter Seals, and you can find out more from the local NBC story about Mike and Easter Seals veterans employment program.

My thanks to all of you Easter Seals blog followers for your enthusiasm for Easter Seals’ support of the military and veterans communities. We are truly making a difference for the men and women that have so bravely and selflessly served our nation.

Accessible beaches around the world

by Beth Finke

Summer’s here, and for lots of us, that means fun at the beach. But what if you — or the people you travel with — use a wheelchair? Easter Seals is featuring information on accessible beaches in the United States, but I thought I’d share a great post that mentions cities around the world that have great beaches.

It’s a post from a wheelchair travel blog called CurbFree with Cory Lee, in which he suggested ten with, he thinks, have the most accessible beaches in the world:

1. Pattaya Beach Resort, Thailand
2. Virginia Beach, Virginia
3. Rehab Point in Oxnard, California
4. Sirens Resort, Loutraki, Greece
5. Freedom Shores, Isla Aguada, Mexico
6. Hanauma Bay, Hawaii
7. Cancun, Mexico
8. Key Largo, Florida
9. Manly Beach, Australia
10. Tuscany, Italy

The CurbFree with Cory Lee post links to each beach he chose, and the post goes into detail about why they made his Top Ten list. Cory is one tour guide you can trust on such things — he’s a travel expert who uses a wheelchair himself.

Cory concedes that while he thinks the ten beaches and resorts on his list are the best, they are by no means the only accessible beaches in the world. “The only way to find the others is for you to continue traveling,” he says. “You never know what undiscovered gem you might find waiting for you in a small corner of the world.”

Check out our list of accessible beaches in the United States.

Aging out: A young man with autism travels home

by Beth Finke

Ben

I’ve been keeping tabs on a story that I listened to on National Public Radio about the decision David Royko and his wife made to move their son, who has autism, to the Oconomowoc Developmental Training Center (ODTC) in Wisconsin when he was 12 years old. The segment was titled “Unconditional Love” and originally aired on the award-winning radio show This American Life.

Ben aged out of the ODTC when he turned 18 and moved to the Monarch School in Shaker Heights, Ohio. Ben turns 22 on July 30 this year, so now these parents need to transition their son back to his home state. This excerpt from a post David Royko wrote last month on his blog about Ben is an honest account of a father’s concern for his extraordinary son:

We don’t know Ben’s degree of understanding what’s coming. We talk with him a lot about moving back to Illinois, seeing Mom and Dad more often and his brother and his aunts and uncles and cousins, and the long, long drive he’ll get coming back. He seems happy when we talk about it. I just don’t think he really knows what’s coming…

Ben

Later on in the post, David Royko questions what is best for his son. “We don’t know if this will be different, though it won’t be the first time he’s done this, so he might understand a bit,” he writes. “But really, would that be better or worse for him? Always more questions than answers.”

Transitions are emotionally draining for parents and children with disabilities, especially when everything is so unknown — short term, medium term, long term.

Those of you facing a new transition with a child who has autism might find reading these honest assessments from a loving father very helpful. And if 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.

4 fantastic books about disability for your child’s summer reading list

by Beth Finke

If you missed the post Cece Bell wrote for us last month about her reasons for writing her graphic novel El Deafo, by all means, read that post now! CeCe’s guest post is terrific, and so is her book.

When I introduced CeCe Bell’s guest post, I explained that El Deafo is a loose biographical account of her childhood living with deafness, and that the book had won a Newbery honor this year. What I didn’t explain was just how big an honor that is —
El Deafo was one of only two Newbery honor books this year (Jacqueline Woodson’s Brown Girl Dreaming was the other one).

CeCe Bell’s El Deafo is near and dear to my heart. It portrays the strength and confidence that can come with using supports to learn, and it brings a positive message that assistive technology of all kinds – like the talking computer I am using right now to compose this post — can be empowering.

The Schneider Family Book Awards, which honor an author or illustrator for the artistic expression of the disability experience for child and adolescent audiences, were named at the same time El Deafo won the Newberry honor. Recipients of the Schneider Family award are selected in three categories: birth through grade school (ages 0–8), middle school (ages 9–13) and teens (ages 14–18). I’ll list this year’s Schneider winnners here so you can add them to El Deafo on your summer reading lists.

• A Boy and a Jaguar, written by Alan Rabinowitz, illustrated by Catia Chien, won the award for young children. It’s a book about Alan Rabinowitz, a boy who felt alienated due to his uncontrollable stutter. Relief comes when he speaks to animals, and he vows to be their voice and keep them from harm.

• Rain Reign, written by Ann M. Martin, won the award for best middle school title. Rose is a young girl on the autism spectrum, and when a superstorm causes a tumult to her life (and the lives of people in her community) she has to make a courageous choice.

• Girls Like Us, written by Gail Giles, won the teen award. Biddy and Quincy, two teens with intellectual disabilities, complete their high school’s special education program and then are placed as roommates – to Biddy’s delight and Quincy’s horror. They find out they have a lot to learn about life from each other — including a sense of family.

Happy reading!

Related Resources on easterseals.com:

We’ve curated storytelling apps that’ll help keep your kids sharp and engaged this summer — and these apps are great for nonverbal children, too!

The best supports I had after becoming disabled

by Beth Finke

DC Matthews @macdoodled left a comment on twitter about a post I wrote last week about visual art. In the post, I’d said “I lost my sight in my 20s, and one thing that helped me adjust was figuring out what I could still enjoy.” DC Matthews @macdoodled responded by asking:

Were you able to get slowly acclimated & not lose housing & safety net? Many injured/other disabled lose all and get less SSI /Medical. I think if we compare experiences we can see how better supports makes people more able and have far less losses.

My answer is yes. I was very fortunate — I acclimated slowly, and was able to do so without losing my housing or a safety net. I received so many services and so much emotional support from friends and family that I could write a book.

Wait a second. I did!

No one was more surprised than I was when my memoir, Long Time, No See got published. I lost my job when I lost my sight. I was depressed, but I couldn’t afford to see a counselor, and writing was therapeutic. So I wrote.

I’d kept journals while undergoing eye surgeries. When the surgeries failed, my husband got a no-interest loan from some of those supportive friends I mentioned above and bought me a talking computer. My husband has continued supporting me both emotionally and financially — we’ve been married 30 years now.

I used my new talking computer to continue journaling, but those journal pieces weren’t initially written with a book in mind. Writing was simply cheap therapy. When those supportive friends of mine suggested I write a book, though, I started checking out the competition.

My blog post last Friday described BARD, the free audio book program the Library of Congress provides for people who are blind or have physical disabilities that prevent them from reading print. I got signed up for BARD while I was still in the hospital recovering from eye surgeries, and once home I started listening to audio books written by authors who were blind.

Most had either found God or performed amazing feats, like sailing across the Atlantic alone. I’d done neither. Was there room for a book by an nonathletic pagan who’d lost her sight?

I decided to find out. A book project, I reasoned, would force me to finally gather my cassettes, floppy discs and other computer journal entries together in one place. And if I managed to get published, maybe I could parlay my literary success into a career of some sort.

I received Social Security while I worked on the book and went to a residential facility in Chicago for free rehabilitative services to learn Braille, daily living skills and orientation and mobility. A few years later I trained for four weeks with a guide dog at the Seeing Eye school in New Jersey for a month, all for the nominal fee of $100 (they let me pay in 20 five-dollar monthly installments). That Seeing Eye dog changed my life, and so did the other blind people I met during the training there. Nearly all of them were working –some of them were professors, attorneys, social workers –and they served as living examples of how life could still be meaningful and fulfilling without sight.

All to say that various supports can make all the difference with transitioning into this, well, this new way of life, and you really can come out okay on the other side. Whether it’s knowing where to learn about programs and resources, or accessing the family and friends who can help, the transition will undoubtedly be hard work. For me, at least, it was well worth the effort.

Related Resources:

If you’re a young women with a disability and looking for support, as Beth was, try logging on to Easter Seals Thrive, an online community for young women with physical and mental disabilities.

This free kit helps kids with disabilities with air travel

by Beth Finke

Memorial Day was so early this year it caught me by surprise. If it’s summer already, I better get ready for vacations!

The Autism Program of Illinois, Have Dreams and The Hope Institute for Children and Families have come together to create aviation accessibility kits they say could make the trip from ticket counter, through security, on to the gate and into the air easier for people with disabilities.

The kits lay out the steps involved in moving through an airport in words and pictures. They were made with the help of the Chicago Department of Aviation but are intended for use at many other airports across the country. The site also has links to a medical accessibility kit and library accessibility kits.

You can download the aviation accessibility kits here for free – check them out!