Like so many of our other interns, Kelly came in a little unsure. She is leaving us a pro, though, and I’m so proud of her. Good luck with your future endeavors, Kelly, and keep writing!
 

A few weeks ago I was looking through Ellen Seidman’s Love that Max blog and came across a post called 5 Love Stories to Celebrate. One of the love stories in particular caught my eye, so I read their story and watched their wedding video. Within minutes, my eyes were glossy and I was sniffling at my desk. Luckily, everyone in my cubicle area was at a conference so there were no witnesses.

Ian and Larissa met in college and knew right away that they were meant for each other. They talked about marriage early on and planned to marry once they were finished with college. After ten months of dating, Ian got in a terrible car accident that caused significant brain damage and left him in a wheel chair. At first he couldn’t communicate and needed assistance to do everything from eating to dressing.

Larissa moved in with Ian’s parents to help out. For four years she stuck by his side, knowing their relationship would never be the same, but also knowing their love for each other would never change either. To Larissa, the only thing the accident changed was Ian’s outward physicality; it didn’t change who he was and it did not alter an ounce of the love she had for him.

For four years Larissa told herself that if Ian reached a point where he could communicate with her in basic ways, she would marry him and continue on the life they had planned before the accident occurred. She knew full well how difficult it would be to watch her friends marry men who could dance with them at their weddings and drive them to church on Sundays, but her commitment to Ian did not let those things get in the way.

Larissa was very honest in a blog post she wrote about their relationship, sharing the real challenges she knew she’d face:

Marrying Ian meant that I was signing on to things that I don’t think I ever would’ve chosen for myself — working my whole life, having a husband who can’t be left alone, managing his caregivers, remembering to get the oil changed, advocating for medical care, balancing checkbooks, and on. The practical costs felt huge, and those didn’t even touch on the emotional and spiritual battles that I would face.

Ian and Larissa were married on a warm august evening underneath her parent’s trees in the mountains, surrounded by their family and friends. “The decision to get married was one of the hardest but simplest decisions we’ll face,” said Larissa. “I’ve heard that choosing marriage for anyone can raise doubts and fears. I think a disability takes those normal fears, and multiplies them.”

Their beautiful and emotional ceremony was filled with tears, both happy and sad. “Even though we chose marriage, we chose it sadly,” said Larissa. “Sorrow has been a permanent resident in our 20s.” Larissa shares with her readers that even though sorrow has been such a big part of their life, they find hope and faith and believe wholeheartedly that they do not walk this road alone.

This story hit a soft, almost liquid spot in me because I recently got engaged. I like to think that the love my fiancé and I share is just as strong as theirs, and faced with this same situation, we would have the strength and enduring love that Larissa and Ian display.

I’m sure it’s much easier said than done and I can’t imagine being in her shoes, but I think she is such a great example of what commitment and love really mean in a day and age where people often throw out what’s broken, rather than try to fix it.

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.

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.”

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!

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.

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.

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.

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!

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.

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.