Here at Easter Seals Crossroads, summertime gives me an opportunity to see those same sorts of relationships created for the children who participate in CampAbility or Camp R.O.C.K.S. What’s great about camps through Easter Seals is that they have therapeutic benefits. Both CampAbility and Camp R.O.C.K.S. have physical, speech and occupational therapists working alongside the kids. Easter Seals is also the largest provider of recreation and camping services for people with disabilities in the country.

When kids are separated from their parents for the first time, they gain a sense of independence and start to trust themselves and their own instincts. Camp environment allows kids to participate in teams, discover what they’re interested in and meet a new circle of friends.

Last year I had my first visit to the Camp R.O.C.K.S. in Martinsville, about 30 minutes south of Indianapolis. This two-week overnight camp allows young people on the autism spectrum to meet others like themselves and participate in fun activities such as swimming, hiking, high ropes courses, basketball and outdoor camping. The climbing wall was my favorite outdoor activity. The campers were so brave — I’m not so sure I would have made it to the top!

Camp staff coached the campers as they climbed upward, giving them words of encouragement. Some campers had made strong friendships and were practically inseparable, so they climbed the wall together.

On my drive home from Camp R.O.C.K.S. I reflected on my own camp experiences and related them to the fun and lifelong relationships that these kids are engaging in now. Do you have a similar camp experience you’d like to share? Leave a comment on this blog and let us know!

Meeting Avril Lavigne

by Joy Durkee

I grew up listening to my brother recount great memories from his experiences at camp, and then I began asking my mom when I was going to be able to go to camp, too. She was hesitant at first, but after much research, she came across Easter Seals Camp. That began my 20-year relationship with Easter Seals, leading to many wonderful opportunities and events for me.

I first attended Easter Seals Camp when I was 9 years old. Since then, I’ve talked to groups about Easter Seals and camp, I’ve done radio interviews, I’ve been in training videos for various companies, and I even participated in a sailing regatta in Long Beach.

Camp was my first experience away from home for more than one night, and I’ll be honest: the thought of going away for an entire week was definitely nerve-wracking, both for me and my parents. I definitely dealt with some homesickness, and my parents were anxious all week to come pick me up. Looking back, I am so thankful that my parents didn’t let their fears keep me from one of the most wonderful experiences of my life. In addition to meeting some incredible people and becoming part of the Easter Seals Camp family, I also learned some invaluable skills:

• Taking care of myself
• Being more independent
• Improving my social skills
• Interacting with others

Thanks to what I learned from my years at camp, I was able to go to a four-year college and live independently in the dorms. The people who work so hard to make camp happen every year are some of the most incredible people in the world.

Easter Seals Camp is completely volunteer-driven. Directors, nurses, counselors, and counselors-in-training come from all over the country at their own expense. They work their tails off so that people like me can have a week where we have no limitations.

It never ceases to amaze me (and truly touch my heart) to see how many of those volunteers continue to come back year after year. Many of them have been coming at least as long as I have.

Last year I got the surprise of a lifetime: I got to meet Avril Lavigne! Ever since I heard Avril had created a Rockstar Club for Easter Seals, I thought in the back of my mind that it would be awfully cool if she came up to camp someday. I never thought it would actually happen though!

Meeting Avril Lavigne is a moment I will never forget. I was so touched by her humility and her genuine interest in all of us. She was determined to do whatever she could to help make camp even better and allow more people to experience this amazing place.

The unconditional love and support that I have received from everyone at Easter Seals and at camp is unparalleled. Easter Seals Camp is truly the happiest place on earth!

We’ve already had some pretty creative fundraising ideas this year, including:

• a raffle and ticketed networking event
• an accessible Wrigleyville rooftop night at a Cubs game
• a team of runners who raced from Madison, Wisc. across the Midwest to Chicago.

We only established NAB last summer, and the passion each board member has for Easter Seals grows with every interaction. This is National Volunteer Week, so I asked a couple NAB members what they had to say about volunteerism.

Mike Sandy — Chairman of the Easter Seals National Associate Board
Mike said, “It is an incredible honor to be part of the inaugural group for the NAB and I could not be happier to be involved with Easter Seals as an organization.” Mike met Melissa Hohimer from Easter Seals’ Finance Department when he was in graduate school. “I don’t believe I have ever met someone with more passion around their organization and its mission. She continuously spoke about Easter Seals and the type of work they were doing, which lead me to take a deeper look.” Mike has several friends with children who have autism and says the fact that Easter Seals is a leader in providing direct service to children with autism really resonated with him. ”Several of my friends completed tours in either Iraq or Afghanistan, so counseling and reintegration for returning veterans is also near and dear to my heart.”

After graduation, Mike was interested in putting his new found free time to good use. “So it seemed only natural that Easter Seals would be a perfect fit. The fact that the timing coincided with the establishment of the NAB couldn’t have worked out any better.”

Maria Mazza — Vice Chair of the Easter Seals National Associate Board
Maria said she decided to become involved with Easter Seals because of a long standing desire to give back to the community and her interest in working with an organization making a significant impact in the lives of children. “I’ve reached a point in life where I felt I had the time and resources to put my skills, energies and enthusiasm to use for an important cause,” she said. Maria is particularly interested in Easter Seals’ initiatives in the areas of early intervention and therapeutic services. “With such services facing increased demand, Easter Seals is playing an important role in helping children reach their potential. All children deserve in equal opportunity to succeed and Easter Seals is striving to help children in this regard.”

As a board member, not only has Maria had the opportunity to see how children and adults are benefitting from the extensive services provided by Easter Seals, but she has also had the opportunity to personally contribute to one of Easter Seals’ initiatives. “I recorded a PSA in Spanish about Make the First Five Count and the online screening tool created by Easter Seals for the assessment of potential developmental delays. I was truly honored by the opportunity and am excited about the upcoming events the NAB has planned for this year.”

Carrying his son in his arms

by Kelly Zatlin

During Monday’s terrible bombing at the Boston Marathon, many at Easter Seals and around the country were immediately concerned about the condition of Team Hoyt, the famous father and son marathon duo in which the father, Dick runs with his son Rick, who has Cerebral palsy. Being new here, I wasn’t aware until this week that The Hoyt Foundation is a partner with Easter Seals.

Thankfully, Team Hoyt remained unharmed. Just one mile from the finish line, they were told to stop because of an explosion. Not knowing what to do or where to go, the father and son were helped by a stranger who took them back to their hotel in his SUV. Dick had to carry his son into the hotel because Rick’s wheelchair got lost in the chaos of everything.

The Hoyts and the 30 other members running in support of Team Hoyt remained unharmed at the race. This was Team Hoyt’s 31st run in the Boston Marathon, and they are quick to say it won’t be their last.

While what happened in Boston taught us that there are some awful people in this world, it also taught us that there are some really fantastic people who want to help, serve and be there for others. Even now in this sad time after the 2013 Boston Marathon, Team Hoyt and the good that they do can be an inspiration to people around the country. The events of this week aren’t going to stop Team Hoyt from running marathons, and it’s not going to stop other athletes with disabilities from taking part in marathons and triathlons, either.

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.

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.

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.

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.”

The Living Our Values award recognizes staff members that go above and beyond in living the values of our affiliate: welcoming, humility, respect and integrity. The award is one I created within the first month I became CEO/President here in Milwaukee, and I was especially moved by the way each one of this year’s four award-winning individuals lives our mission.

One therapist in our early intervention services connected two families together because each had twins with special needs. Her goal was to help them learn from each other and feel less isolated. One of our management team has grown and expanded our workforce services so that in 2012, 17 individuals now are employed in community employment. She was also responsible for expanding our Project SEARCH to a new hospital in 2013. The growth of our job placement has been phenomenal over the last two years. We started with just a handful of success stories in 2010, and now 90 individuals are moving toward community employment.

Another staff member dealt with a family who had been evicted from their home and was living in their car. The children could have been taken from their mother, but this staff member found housing and the family remained together. Another individual started a knitting class at our Workforce Training Center, and the hats, mittens and scarves were donated to a local agency to help those in need.

These staff members represent the creativity, dedication and compassion of Easter Seals staff members across the country. Our awards mark a year in the life of Easter Seals, but the impact of caring staff like these last a lifetime.

Coleen Jennison is the consummate volunteer and has woven her way into our hearts, reading books to the preschool children we serve.

Our Business Support Center is a mail production site that provides full and part-time work for people with disabilities. The Business Support Center offers a variety of services to meet the needs of the business community by providing professional, quality products and services, and the article In Topeka Business highlights the work that adults with autism at Capper Foundation do (spending time organizing and assembling toys and kids’ meal components) to support Kid Stuff Marketing for restaurants all over the world. We appreciate all that Tara Dimick (editor of Topeka Business magazine) and Melissa Brunner (author of this article and WIBW TV news anchor) do to create awareness of our Adult Services program and in engaging community members.

Coleen Jennison (Easter Seals Capper Foundation’s Board Vice-Chair and chair of the Greater Topeka Chamber of Commerce Board of Directors) is on the magazine’s cover, and she’s interviewed in the story as well. Coleen Jennison is the consummate volunteer and has woven her way into our hearts reading books to the preschool children we serve. We are truly blessed by the caring, generous members of our community.