Never too early to start planning for summer camp!

Campers tackle the challenging climbing wallWhen I was a kid, going to summer Camp brought me out of my shell. I learned there were other kids out there with interests similar to mine. I loved to play piano and practically any musical instrument you put in front of me, and camp was a great way for me to meet fellow budding musicians. Many of them are my friends to this day.

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!

 

Siblings Matter

Share your sibling story!You might remember my post about the Siblings Study, which helped us better understand the challenges adults who have siblings with disabilities face.

Well, Easter Seals long-time corporate sponsor MassMutual really wanted to dive into this issue by raising awareness about siblings with disabilities and offer ways to help with financial planning for caregivers.

To celebrate siblings and provide financial and educational resources for those who are caring for a sibling with a disability, MassMutual is speaking out over social media.

They’re encouraging everyone to share what their sibling means to them. It can be on Facebook, Twitter or Instagram — just use the hashtag #siblingsmatter any time from April 30th to May 31st. Even if you don’t have a sibling, you can still post about friends and family who are like a sibling to them.

And, it gets better! Once the hashtag has been used 10,000 times, MassMutual will donate $25,000 to Easter Seals to supports its mission of providing help, hope and answers to the more than one million children and adults living with disabilities and other special needs each year.

If you have a sibling with a disability, they can find helpful information, connect with others in similar situations or access help from a MassMutual SpecialCare expert by visiting facebook.com/massmutual or massmutual.com/specialcare.

 

A summer camp recommendation from an expert!

Joy and friends meet Avril at Camp OakesHere’s a guest post by camper Joy Durkee about one very special time at Easter Seals Camp in Southern California.

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!

 

Making the arts accessible

Beth and Whitney in Vermont -- photo by Susie CroninSound the trumpets! Here’s something I never dreamed would happen to me: I’ve been awarded a writing fellowship from the National Endowment for the Arts and am spending the month of April with 50 other poets, visual artists and writers at the Vermont Studio Center.

News about the fellowship got me wondering whether the National Endowment for the Arts has a history of working with people who have disabilities. I checked out their web site, and wow! Do they ever! an entire department of the NEA is dedicated to making the arts accessible.

The National Endowment for the Arts’ Office for Accessibility does a lot of things to accomplish its goals. When I checked out their web site their Careers in the Arts for People with Disabilities program really stood out. The program partners the U.S. Department of Education, Health & Human Services, and the Social Security Administration with the Kennedy Center for the Performing Arts to sponsor artists and arts administrators with disabilities, You can contact the Kennedy Center for more information on that program, and while you’re at it, why not check out a series of state-wide forums on Careers in the Arts, organized by UCLA’s National Arts and Disabilities Center, too.

I plan on taking a look at (okay, a listen to) these and other NEA programs for people with disabilities once I get a little more settled in here at my artist retreat in Vermont. What a privilege this is, I am truly grateful.

 

What it means to be a volunteer — Associate Board members weigh in

It’s no secret I love volunteering. So I jumped at the chance to be involved with Easter Seals National Associate Board (NAB). Each member of the NAB makes a personal financial commitment to Easter Seals and then fundraises through their personal pages, social events and the companies they work for.

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 SandyMike 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 MazzaMaria 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.”

 

Tell Congress — preserve funding for early intervention

The 2013 Make the First Five Count Petition Drive starts this week on the heels of some good news! In his most recent budget, President Obama recommends an increase of $20 million for the federal early intervention program. We now need to convince Congress that this program, Part C of the Individuals with Disabilities Education Act, needs to be a high priority for our country.

Congress decides the funding level for this program each year, which means we need to sign the Make the First Five Count petition each year. So, if you signed the petition last year, you need to sign it again for it to help this year. Let’s break last year’s record of 40,000 signatures!

It’s very easy. All you have to do is link to our Make the First Five Count page and scroll to the bottom. Hit the “sign the petition” button and fill out your contact information. In less than two minutes, you can make your voice heard. Thank you — your voice really matters!

 

A view from the top

Eli ReimerEli Reimer is on top of the world. Late last month, the 15-year-old from Oregon made it to base camp on Mount Everest along with his father and friends. That’s 17,600 feet high, and Eli is the first teenager with Down syndrome to make that climb.

He and his team hiked through rocky, snowy terrain in below-freezing temperatures for 10 days to accomplish something really amazing. Eli’s father was at his son’s side on the 70-mile trek, and he reported Eli actually led the way at times. “We were dragging. We were experiencing our own sense of disability as we went up into the mountains,” he said. “He led us all the way to base camp.

Over 2,000 people from all over the country signed a card Easter Seals sent to congratulate Eli on his achievement, and we want to congratulate his family, friends and experienced guides here as well. Support like that is crucial for any person to achieve their dream, whether the dream is climbing the world’s tallest mountain or taking a first step during physical therapy. Way to go, Eli, and way to go, team!

 

Team Hoyt will keep doing marathons

Dick and Rick Hoyt. Image courtesy of Team HoytHere’s Kelly with another guest post.

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.

 

Parent-to-parent support on My Autism Team

My Autism Team logoIt has long been documented that parent support groups can benefit families raising a child with a disability. Social networking has moved these support communities to the web. The opportunity for parents to connect on the internet is providing one more avenue to garner the help needed to best support a family member with autism.

An online support group called My Autism Team describes itself like this:

A social network to make it easier for parents to connect with each other and exchange insights about providers. Our philosophy is to make it easy for all parents to get to the answers they need.

I’ve found My Autism Team to be a fantastic resource to parents raising a child with autism. Their site features four main sections:

  • 1. Find Providers
  • 2. Find Parents
  • 3. Question & Answer
  • 4. Activity

With more than 40,000 parents on the My Autism Team site, there is a wealth of expertise from other parents. Parent-to-parent support is important, and social networking provides another opportunity to build connections and a community of support. Check out My Autism Team and see if it’s a site that works for you.

 

Feeling right at home in the Willis Tower

Image courtesy of Willis TowerFive 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.