Feeling right at home in the Willis Tower

by Beth Finke

Five years ago Easter Seals Headquarters moved from a smaller office in Chicago’s Loop to the Sears Tower (now called Willis Tower, the tallest building in North America. I’m not always the first to embrace change, and teaching my Seeing Eye dog to thread me through security, find the appropriate turnstile, locate which of the 90 elevators to take upstairs and find our way to our new cubicle was not easy. But hey, five years later, I gotta say: I feel right at home here.

Sounds like Willis Tower likes having us around, too: they’ve invited all the other tenants here to come hear Patricia Wright, Easter Seals National Director of Autism Services, give a lunch and learn at Willis Tower this Thursday, April 18. How gratifying it is to think that all the people working here at Willis Tower will have this opportunity to learn more about all we do at Easter Seals.

But wait, that’s not all. In addition to Patricia’s lunch and learn, Willis Tower has placed stanchion signs highlighting the Easter Seals mission in both the Wacker Drive and Franklin Street lobbies (I’m told they’re beautiful), They’ve placed Captivate ads in all of the building’s 90 elevators, and they’ve sent a message to the Tower’s database of more than 4,000 consumers inviting them to Patricia’s April 18th Lunch & Learn. I’m expecting a full house.

Thanks, Willis Tower. I was skeptical at first, but you’ve made us feel right at home.

Get a haircut, and help Easter Seals while you’re at it

by Beth Finke

Hey, get this: during the month of April you can get your hair cut and help Easter Seals at the same time! All month long, Hair Cuttery will match every donation made in its salons. Customers can donate in any Hair Cuttery salon to support Easter Seals, and Hair Cuttery will match those donations all the way up to $10,000.

Your donations at Hair Cuttery in April will go twice as far to help us Make the First Five Count to support Easter Seals services, early identification, early intervention and screening services.

Dennis Ratner, Founder and CEO of Ratner Companies, parent company of Hair Cuttery, pointed out in a press release that many Hair Cuttery associates have young children and know firsthand how important the early years are for their continued success in life. He’s right. The first five years of life really count, yet every year, more than a million young children with unidentified delays and disabilities enter school with learning and health issues that put them far behind their peers.

That’s why Easter Seals created Make the First Five Count®, to engage parents around the importance of early identification — because children only receive services when parents follow their instincts and take action early if something doesn’t feel quite right. And now, with your donations and Hair Cuttery’s support, Easter Seals will continue to help children and adults with disabilities receive important services so they can live, learn, work and play in their communities.

In addition to awareness … acceptance

by Patricia Wright

If you read my post last week, you know that April 2nd was World Autism Awareness Day and that the entire month of April is Autism Awareness Month.

Awareness is great, but maybe acceptance should be part of the message, too. The Autistic Self Advocacy Network (ASAN) is leading a campaign to emphasize the importance of moving from awareness to acceptance, and labeling April Autism Acceptance Month is part of this movement. From the ASAN web site:

Autism Acceptance Month is about challenging ignorance, prejudice, fear and hysteria about autism and autistic people.
Autism Acceptance Month spreads the word that autism is both a neurological disability and a natural part of human diversity, and centers the voices of autistic people in the conversation about us.

I would like to think that everyone already knows about autism, that we are done with awareness, but I know this isn’t true. I would like to think that acceptance is a given, that our society accepts all people with disabilities, but I know this isn’t true, either. Awareness and acceptance are both important.

Listening to Roger Ebert

by Beth Finke

It took a year for me to go from seeing spots to being completely blind. During those twelve months, my husband Mike and I were determined to keep doing all the things we’d enjoyed doing together when I still had 20/20 vision.

Going to movies, for example.

Early on I was still able to see Prince’s body in “Purple Rain.” I saw Darryl Hanna’s fin in “Splash.” I remember the round hat on the little Amish boy in “Witness.” My eyesight diminished farily quickly, though. Eventually the screen went totally black. Nothing the doctors could do. I gave up on movies.

But then film critic Roger Ebert started his Overlooked Film Festival in Urbana, Ill., where we were living at the time. The before-and-after lectures helped explain what everyone was seeing, making the overlooked films more accessible to people like me. My guess is Roger didn’t have people with disabilities in mind when he decided to host talks and panels before and after films there, but I’m sure he was pleased to know that those discussions turned out being “universal design.”

Roger Ebert’s Film Festival, affectionately known as “Ebertfest” by locals, helped me realize I can still appreciate movies. Among my favorite Ebertfest overlooked films: Murderball, The Secret of Roan Inish, and American Movie.

I was in the audience at another event that could have just as well been called “Ebertfest,” too: Access Living gave him a “Lead On!” award at their 2011 gala here in Chicago. Access Living is a disability advocacy organization, and the “Lead On!” award recognizes national leaders who have helped reframe the understanding of people with disabilities and who have helped to remove the barriers-physical and attitudinal-that exclude people with disabilities from career pursuits and everyday life.

Roger Ebert represented the very embodiment of what the award stands for. Thyroid cancer left him unable to speak. He had no lower jaw, and friends told me his face could be difficult to look at. Others might have stayed inside, slow down, retired. Not Roger. He kept on doing the work he loved-reviewing movies, blogging, Tweeting, attending film festivals, sending numerous entries into the New Yorker’s Cartoon Contest and continuing to manage his own festival, too.

Roger Ebert used a text-to-speech program called “Alex” to make presentations at film festivals and conferences. “For me, the Internet began as a useful tool and now has become something I rely on for my actual daily existence,” he told an audience at a 2011 Ted Conference, explaining why he considered himself fortunate to be born in this era. “[If this had happened before], I’d be isolated as a hermit; I’d be trapped inside my head. Because of the digital revolution, I have a voice, and I do not have to scream.”

Thank you for your courage and your fortitude, Mr. Ebert. We sure are going to miss you — all of us benefited from hearing your voice.

Easter Seals means “aloha”

by Brandi Salas

I had the pleasure of participating in the Make the First Five Count Spokespersons Network and Affiliate Marketing Partners Meeting in Chicago a few weeks ago. Thirty-degree temperatures and freezing cold Chicago wind might have pushed the teeth-chattering and ear-numbing limits of this island girl, but the warmth of the personalities, and the very intelligent, altruistic people at Easter Seals and its affiliates got me through.

These individuals tirelessly dedicate themselves to the well being of children and adults with disabilities and special needs, and they’d fit in perfectly with my fellow residents of Hawaii. In Hawaii, we pride ourselves on living through “Aloha,” which means “hello,” “goodbye” and, most importantly, “love.”

Many think of Hawaii as a place of paradise, a never-ending tropical vacation. But the truth is my dear island Oahu is becoming over-populated with a growing crime rate and homelessness. The cost of living is rising and we often come across families that do not have the means to afford proper care for their loved ones.

So if the lives of island locals are not what others perceive them to be, where does the “Aloha” lie? The proof is in the way we interact with each other. Our passion and manner in which we come together to help a struggling member of our tight-knit community is “Aloha.” When I see our therapists, social workers, activity coordinators and caregivers interact with our participants here at Easter Seals Hawaii, I’m reminded that it is people like them that uphold and sustain our island values as well as the mission of Easter Seals.

During the meeting in Chicago, we discussed how many know the Easter Seals name but often forget or are unaware of what we do for others. I am confident in stating, “Easter Seals means Aloha.” The people I met at that Chicago meeting are proof that despite economic hardship and limited resources, “Aloha” will always prevail. We help and guide those with disabilities and special needs to reach their full potential. There is nothing more satisfying than being a stepping stone to make that happen.

And so, if you ever walk past Easter Seals Headquarters office in gusty Chicago, expect to be greeted with one of the most powerful quotes I’ve ever known, “Your life and mine shall be valued not by what we take … but by what we give.” That quote comes from Edgar Allen, the founder of Easter Seals. I’m a true believer.

Watch out, world — I’m feeling crafty again

by Rachel Talen

I can’t believe it’s already been a year since I wrote a post here confessing my obsession with crafting and how that obsession created a special place in my heart for Easter Seals’ partnership with A.C. Moore Arts & Crafts. Time sure flies! A.C. Moore’s Make and Take crafting event is back again, and I love the theme for this year: Crafting a Better World for ALL Kids.

From now until April 27, you can support Make the First Five Count and Act for Autism, too, by donating $1 at checkout (don’t forget to thank your cashier for helping Make the First Five Count) While you’re at it, why not bring the kids to your local A.C. Moore store on April 20 from 1:00 to 3:00 p.m. That’s the day of their free “Make and Take” craft event, and the kids can make a Creative Hands® foam name sign to take home.

Since launching the campaign as part of its Crafting a Better World program in 2010, A.C. Moore customers and store team members have raised almost $500,000 for Easter Seals. Today, one in 88 children are diagnosed with autism, and there’s an increasing need for funding, services and support. I encourage everyone, the crafty and non-crafty, to show your support by pinning the image pictured here. You can visit Easter Seals’ Pinterest page to see more, too!

At Easter Seals, every day is World Autism Day!

by Patricia Wright

The United Nations declared April 2nd World Autism Awareness Day back in 2007, and now, six years later, Easter Seals is embracing UN Secretary-General Ban Ki-moon’s message for World Autism Awareness Day 2013:

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide. The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services.

There continues to be a growing demand for services and supports to ensure individuals with autism experience a high quality life. Having high profile organizations such as the United Nations taking an interest in autism increases visibility to the needs of those living with autism.

April 2nd is an important day for autism, and Easter Seals will continue to send the message every day that individuals with autism deserve to experience life to the fullest.

From “non-verbal” to “social butterfly”

by Beth Finke

The story below was featured in our April eNewsletter. We love sharing Easter Seals stories like this, so if you’d like to receive our eNews every month, sign up here.

At 28 months, Kai couldn’t walk, speak, or make contact with others. His parents were told he would be non-verbal and would probably require long-term care. They looked to Easter Seals for help.

Kai began autism services and showed amazing progress after only nine months. Talking was his first noticeable change. Because he was able to communicate, he had more meaningful interactions with family and other children, and began to enjoy activities. No longer isolated, Kai is now a social butterfly! He enjoys playing games and is also on target with spelling, counting, reading and writing.

When young children with special needs and developmental delays are diagnosed and receive early intervention services, they are able to build lifelong skills and achieve their dreams. That’s why Easter Seals is fighting to get children at risk the support they need to build a foundation for a lifetime of learning. Visit our Make The First Five Count site. Read stories about other kids like Kai and access our free developmental milestones screening tool.

Keeping up with Ben

by Rachel Talen

I was very moved to hear that Easter Seals’ 2012 national adult representative Ben Trockman had written a post on his own personal blog on the anniversary of the motocross accident that caused his spinal cord injury. After I read it, I asked if I could excerpt parts of Ben’s post here on the Easter Seals blog. Ben graciously said yes.

I was introduced to Ben at Easter Seals Celebration of Giving in San Diego last May and was immediately struck by his positive attitude, not to mention his wit. And his charm! So now I’m one of the lucky ones to call Ben a friend. There’s no doubt his personality is magnetic: he wins over every crowd he speaks to. My grandparents attended the event in San Diego, too and had the honor of meeting Ben. They were so taken by him that they asked me for his photo. One year later, it’s still on their fridge!

I highly recommend you join me in regularly reading Ben’s blog: he is so active that it’s the only way to keep up with him.

In the post about his accident, Ben writes that when he was a teenager, he and his brother rode dirt bikes with their dad just about every weekend. On race weekends, their mom would come too, joining other motocross moms to set up tents, get the food together and eventually help strap up a boot or two.

Ben was 17 years old on March 19, 2006, the day his family traveled together to Poole, Kentucky for a race. “The track at Poole was extremely poorly designed,” Ben wrote. “We as a family had always said we would never race there because of the quality of the track. But, for some reason, that weekend we decided to go ahead and race there.”

Race officials cancelled the race after realizing there weren’t enough racers to fill the track, but after a little lobbying, the officials changed their minds. The race was back on.

Most of the people in the race that day were either family, friends of Ben, or guys Ben knew from previous practices or races. He recalls that “after a little stretching, some warm-up starts, and chugging an energy drink, I competed in my last motocross event.”

Ben doesn’t go into details about the accident, only saying that he was unable to breathe on his own immediately after the wreck. His father performed CPR for nearly 30 minutes before LifeFlight arrived to fly him to Deaconess Hospital in Evansville, Indiana, where it was determined that he’d broken his C1 and C2 vertebrae and suffered a spinal cord injury.

Ben was eventually transferred to the Shepherd Center in Atlanta for three months, and then after a short stint at home he shipped off for three months of rehab at the Kennedy Krieger Institute in Baltimore, where he worked with the same doctor who treated Christopher Reeve. From Ben’s post:

Since the day of my injury, so many things have changed. I’m not that cocky, stubborn 17-year-old boy anymore. I am now a 24-year-old man living with a disability in a much different world than in 2006.

I cannot pop out of bed every single morning and do what I please. It takes somewhere around an hour and a half, and two nurses to get me up. Then, I have to have someone who knows exactly how to take care of me, drive me to where I need to go. Whether I am going to class, where I am now a junior at the University of Southern Indiana, traveling to therapy, or driving to a speaking engagement.

Either way, things just are not as effortless and simple as what they used to be, but I am still living and breathing.

Ben uses his blog post to thank all of the people, friends, family, nurses, therapists and total strangers who helped him along the way. “I would not be here, living my life happily, not living in regret, without the people who have supported me along my travels,” he says, adding that at age 24, he’s accomplished more with his life than he ever imagined before his injury, including his year as a national adult representative for Easter Seals. “During my travels as the local and national representative, I have met some incredible people that are destined to be lifelong friends.”

What color am I wearing?

by Beth Finke

People stare at my Seeing Eye dog and me sometimes. Who can blame them? We’re an unusual pair! But as long as they’re watching, I want to look good.

So when I heard that the Segal Design Institute at Northwestern University was looking for projects to help people with disabilities, I suggested they have their freshmen engineering students try to come up with some easy way we blind folks could keep track of the color of our clothing. Right now I put a safety pin in the tag of anything I own that is black, and a paper clip on anything white. I wear other colors, too, and I memorize what color those other things are by the feel of the clothing.

My proposal got a thumbs-up, and after my Seeing Eye dog Whitney and I visited Northwestern to explain what I needed, one engineering class there divided into four different groups to tackle my problem. They visited our apartment a couple of times to take a look at the way I arrange my clothing now and to ask questions that would help with their research. Freshmen in other Design Thinking and Communication class sections were working on other projects for people with disabilities at the same time. Here are some examples

• A man who uses a wheelchair wanted an easier way to fold up the footrests when it came to transferring into a car or a regular chair
• A man with cerebral palsy was looking for a more efficient way to pull his trousers up on his own
• Occupational therapists asked for a device that might encourage their clients with Parkinson’s disease to do finger exercises on-the-go
• The Rehabilitation Institute of Chicago hoped a class could figure out a way for clients with visual impairments to know how fast (and at what speed) they were walking on exercise treadmills
• a woman who uses a wheelchair and enjoys outdoor concerts was looking for a way to slide from her chair onto the lawn, then get back into her chair again on her own when the concert was over.

Whitney and I traveled to a Design Expo at Northwestern to hear all of the students present their completed projects. When the students working on my color identification challenge had visited our apartment in February with prototypes, they ranged from carabiners to iron-on tags to QR codes that my talking iPhone could read to me. Seeing (okay, touching) what these four teams had come up with in the end made me glad I’d come out of the closet about my wardrobe woes! All four teams had expanded on my tried and true safety-pin method, each team inventing different things to hang from the pin to correspond to the color of the item.

The “Fantagstic!” team came up with acrylic shapes on cloth tags. They reasoned that cloth tags would be lightweight, so I could use two or more at a time to identify multi-colored items. The tags another team came up with were laser-cut acrylic shapes called “Depindables.” The “Code of Many Colors” team used small glass beads on the safety pin: one bead means black, two beads mean white, and so on. “Tag Team” was the only team to use traditional Braille code on its tags — the other teams learned from research that a majority of people who are visually impaired do not read Braille. The tags that all four teams came up with had all been tested to withstand high temperatures in the washer and dryer.

Judges from engineering firms were on hand to decide on winners for each proposal, and the winner for mine was … drumroll, please … Tag Team!

The Tag Team system is more than a label to safety-pin onto my clothes. It’s also a way to organize my closet and laundry. Tag Team includes a laundry hamper that holds a number of mesh bags, each bag with a tag attached that corresponds with a single color. They figure doing laundry will be easier if I don’t mix all my clothing in the hamper, only to have to resort it all again when the wash cycle is over. “All you do is put your clothes in the bag it belongs in, take the bag out, tighten the string, and throw the bag in the washing machine.”

I had to hand it to ‘em. But if you ask me, all the teams at the design expo were winners. These kids are just freshmen, and not only have they learned about design process, but also how much it can mean to work together to help people with unusual, unique, and unmet needs. I was the biggest winner of all, though: I got to work side-by-side with these talented and thoughtful young people, and when design expo was over, I walked out with custom-made prototypes of all the tags!

Folks I talked to from the Segal Design Institute at Northwestern University told me they’re always looking for new project proposals from people with disabilities and organizations who work with us. If there’s something you need and you live in the Chicago area, submit a proposal soon. If you don’t live near Chicago, I strongly suggest you encourage a college near you to start a similar program. Working with this one at Northwestern was, well … fantagstic!