Words of wisdom to your younger self

by Patricia Wright

The Thrive group at its capstone event in Boston last December

Easter Seals has been supporting mentorship programs for many years, and if you read my post about the THRIVE program you know that last year we helped launch a mentorship program based at Easter Seals Massachusetts that is focused on young women with disabilities.

Sandy Ho is the Program Coordinator at Thrive, and now she is cooking-up a new awesome project. She’s gathering letters written from women with disabilities to their younger selves and publishing them on a site called Letters to Thrive:

The letters submitted here serve to empower, to be resourceful, to advise, to empathize, to be honest, to brag, to vent, to celebrate, to be heard, to be role models… but most of all to create community out of our shared life experiences.

There are several letters already on the Tumblr Site Letters to Thrive, and they are a great read. And don’t worry, you do not have to follow tumblr to read or submit a letter. The Letters to Thrive tumblr is available by the public, to anyone who has the link and anyone who searches for the letters online.

One letter on the site is written by a woman named Margie. I’ll copy a few lines from the beginning of her letter here to give you an idea of what the Letters to Thrive can be like. “Dear Margie, I know you recently received your first wheelchair,” she starts. “This process is very confusing to you right now. I’m aware of these things because I am the woman you’ll grow up to be.”

Margie continues, convincing her younger self to keep reading: “Don’t worry, I’m not crazy, and I know what I’m talking about. I’m writing you this letter to give some advice that I think will be helpful to you when coming to terms with having a disability.” I learned so much from reading letters like Margie’s on the Letters to Thrive site that I decided to write this blog post as a shout-out to encourage other women with disabilities to submit your letter to your younger self. Your years have brought wisdom, and hey, maybe it’s time to share that wisdom with the world. Margie chose to use her name in the letter she submitted, but other writers choose to remain anonymous. Many of the letters are simply addressed “Dear Younger Self.” Some end with, “Love from your future self.” So you can rest assured that your name can easily be omitted if that’s what you prefer. Thanks for reading — and writing!

Download our disability awareness program for school kids — it’s free!

by Beth Finke

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

With school starting soon, we’re sharing our free FRIENDS WHO CARE® disability awareness program — it helps parents and educators teach kids about children and adults with disabilities.

Sponsored by long-time Easter Seals partner, Friendly’s Restaurants, LLC, FRIENDS WHO CARE is a fun, interactive program that helps students learn how kids with disabilities go to school, make friends and play. It encourages kids to accept their peers with disabilities as people first, and to find ways to include everyone in school and after-school activities.

Visit our Web site to download the free FRIENDS WHO CARE materials!

Book review: Adiba Nelson’s “Meet ClaraBelle Blue”

by MacKenzie Olsberg

I cut my hand pretty severely last month. Since then, any time I try to wash my hair or make dinner, I hear a line from the children’s book Meet ClaraBelle Blue ringing in my head:

Surprise my dear, surprise indeed! Those are little, tiny things called special needs!

“Special Needs? Special Needs? What does that mean?”

It means it takes her a little bit longer to do every day things.

ClaraBelle Blue’s story reminds young children (ages six to eight) that people with special needs are not all that different except for minor things. The charming main character may have trouble walking, but she still laughs, sings, screams and wins at duck duck goose. That sunny smile, eagerness to play and learn is still there, and having a disability doesn’t hinder it one bit. At the end of the day, ClaraBelle Blue is still ClaraBelle Blue.

This book was written by Adiba Nelson, and it came to be as a personal expression and token of love for her own special needs daughter. You can feel that love on every page. It’s a sweet story with the right amount of silliness (I’m not sure I would ever dine on a sardine and orange marmalade sandwich myself) and seriousness to convey the importance of acceptance of people that may look different, but are really the same mostly.

Indeed, the message seems to be so important to the author that the main characters look similar to her daughter and her, but in a very Disney-style way. The book is illustrated by Elvira Morando and was designed by Ilene Serna. I grew up on the whole princess fad, so their artwork made the book that much more enjoyable.

Pretty art always did lure me into reading certain books as a child. Physically reading it now is a different story. It’s been difficult to do every day simple things since I hurt my hand. Taking a shower has become harder, reaching for things is debatable, and even putting on a sweater takes extra steps. I’m typing this blog post in a different way than I used to do it, too. None of these things are impossible to do, I just do them differently.

You know what, though? I’m still very much the same as before: I can still sing, do dishes, walk and fight the good fight. Something changed with how I live (if only temporarily), but it didn’t alter who I am as a person. Just how I do things versus the way others do them.

The problems I’ve had using my hand lately have helped me appreciate the everyday struggle people with disabilities go through each and every day. Reading this book in addition to my injury helped me also to gain an even greater appreciation for those who look at their disability and carry on doing everyday tasks. They might do them a little differently, but they get things done all the same

A disability may not go away like the injury on my hand will, but living with the injury while reading this book makes me feel I have a better idea of what living with a disability might be like. Not completely — never completely — but more than before. And now I have a wicked cool scar in the making, too.

Choosing to matter with Olympian Julie Foudy

by Beth Finke

Julie Foudy and Amy Liss via ESPNW

I am so pleased to have Amy Liss back again as a guest blogger. We’ve known Amy since she was a baby — she started with physical, occupational, and speech therapy at Easter Seals Du Page and the Fox Valley Region when she was just 5 months old. Amy is a lovely grown woman now, and she works as a Relationship Coordinator at Easter Seals Du Page and the Fox Valley Region. You might recall the guest post Amy wrote last year after taking her first steps with a new piece of equipment to help her walk — now she’s back with a story about the relationship she’s forged with soccer superstar Julie Foudy.

Julie & Me

by Amy Liss

I met Julie Foudy six years ago when she brought a group of volunteers from the Julie Foudy Sports Leadership Academy (JFSLA) over here to Easter Seals Du Page and the Fox Valley Region to do a day of service. She’s come back with volunteers from JFSLA every year since then, always remembering to bring that year’s t-shirt as a special gift for me.

This year she gave me the best gift of all: she invited me to serve on staff at her camp! In case you don’t know who Julie Foudy is, she is an Olympian and played for the US Women’s National Soccer Team from 1987 to 2004. She served as the team’s captain from 2000 through her retirement in 2004. In 2007 she was inducted into the National Soccer Hall of Fame.

Julie Foudy is a commentator on ESPN now, and she’s one of the founders of the Julie Foudy Sports Leadership Academy for girls from 12 to 18 years old. Julie can teach soccer, but her camp teaches much more than that. It teaches girls how to be leaders both on and off the field. She stresses the importance of teamwork, positive attitude and service. Her camp theme is “Choose to Matter” and girls leave her camp with a contract to go back into their community and make a difference.

My week with Julie and her staff at JFSLA was the best week of my life. I did wonder why she would want me on staff. It’s not because of my soccer skills. I’m not a famous name. I realized that Julie believes anyone can be a leader — even me!

My hope and my goal at her camp was to try to make a difference, bring some smiles and let people get to know me — my abilities, my challenges and my lifestyle. I think I achieved my goal. I had the opportunity to not just meet, but to become friends with some of the most genuine people I’ve ever known. Being asked to speak to her campers and staff was an honor and a life changing experience, and when I got home it was difficult to explain just how awesome it was to family and friends. But then Julie did that for me: she wrote an article about us for the ESPNW Newsletter! Here’s an excerpt:

When the girls ask Amy how she deals with her cerebral palsy in such a positive way, she says she’s lucky; a lot of people have it worse than she does. She’s grateful for all that she has, especially her “team.”

In one week, the girls change one another’s lives. Amy affects them the most, and they are not shy about telling me she’s their favorite part of camp — every single one of them! They’re no longer afraid of approaching someone in a wheelchair or worried about how to handle someone with a disability. They move beyond their fear of the unknown, and instead of shying away from one another, they cling to Amy and the lessons they learn from her. Perspective.

I’ve been awed at the number of positive comments from people who read her article and shared it with others, but I’m not the celebrity. I was just blessed to come in contact with a woman who believed in me and helped me believe in myself. Julie and I are good friends now. Together, we “Choose to Matter.”

Life in a post-ADA world

by Denise Rozell

Intern Jennifer Lee overlooking the Mall, Washington D.C.

Every year the American Association of People with Disabilities (AAPD) runs a summer internship program that brings students with disabilities from across the country to our nation’s capital to work in government, non-profit, and private sectors. This summer we at Easter Seals Headquarters were fortunate to have one of the AAPD interns working with us in our office in Washington, D.C. During her time with Easter Seals, Jennifer Lee’s primary project was to update our Autism State Profiles to reflect new autism services and new legislation across the country.

Soon Jennifer will return to her senior year at Brandeis University where she is pursuing a double major in Health, Science, Society and Policy and American Studies.

Because of the ADA

by Jennifer Lee

I was born in 1992, two years after the Americans with Disabilities Act (ADA) was passed. Today I am a young person with a disability, and I have never known life without the ADA.

I left my heart in Kewanee

by Elsa Remak

Teyanna and her escort practice the opening dance

Three months ago, I would not have been able to point out Kewanee, Illinois on a map. Two weeks ago, I left my heart there.

Back in May I wrote a post about the Chicago premiere of the HBO documentary Miss You Can Do It. The event changed my life, to say the least. With tear-filled eyes I vowed to myself that it would not be the end of my work with Miss You Can Do It, and I was not alone. The very next day at the office, two colleagues joined me to plan our trip to Kewanee for the 10th annual pageant.

The three of us drove through cornfields and stormy sky’s en route to the event’s dress rehearsal on Friday, July 26. The Kewanee High School auditorium had been transformed into a replica of the Miss USA stage. Christina Aguilera and Pitbull’s latest song blasted through the speakers, glittering light-up streamers filled the room, and trophies (some nearly as tall as me!) lined the stage. I had to remind myself that I was at an auditorium in the heartland, not in Las Vegas.

We were greeted by pageant creator Abbey Curran, who explained that the older girls, the “Miss” contestants (ages 17-25), were working on the opening number choreography. Abbey encouraged us to have fun and root the girls on, so we cheered with every shimmy and turn they did. We couldn’t resist learning the dance ourselves and mirroring the contestants: I still break out the dance any time I hear the song Feel this Moment. We’ve even broken out the moves at the office.

The contestants came from all over the country, and it was amazing to witness them transform from timid to dancing divas in just an hour’s time. Even more special is the way the girls connect to Abbey. It’s clear that she is an inspiration to them. Abbey’s goal with the older girls was to make them feel like beautiful teens and twenty-somethings, and when you see them grinning ear-to-ear while making their confident moves, it’s clear that she succeeded.

During the pageant kick off. The “Miss” girls were joined by the 40 younger contestants and their families. Abbey greeted the enthusiastic crowd with a video of encouragement from a special guest: Katie Couric popped up on the screen to wish the girls good luck. I think I may have screamed louder than anyone else — I have a minor (okay, major) Katie Couric obsession. Abbey was a guest on Katie’s talk show once and obviously left a huge impression.

Ali and her escort practice the opening number

Next came time for Abbey to introduce the pageant’s staff and this year’s handsome escorts. Each girl, donned in her finest casual attire, had the chance to strike a pose and strut across the stage. After the rehearsal we caught up with a couple of our Easter Seals families: the Alfords from Easter Seals ARC of Northeast Indiana, and the Shanks from Easter Seals Southwestern Indiana. Both expressed what a positive impact the pageant has had on their families. It’s fun for the girls, and it can serve as a positive distraction from the challenging lives these special families lead sometimes.

Miss You Can Do It has had a positive impact on me, too: it’s completely changed my perceptions of beauty. I’ve learned that true beauty is the beaming smile and glow of a young girl who feels pretty for the first time in her life.

On the way home from Kewanee, our cheeks ached from smiling, and our palms were numb from clapping, too. I have Miss You Can Do It and Easter Seals to thank for the two best days of my summer, and I can’t wait to see what next year’s pageant will bring.



Looking at life from the Outside-In

by Rachel Talen

Students in Nairobi, Kenya

A blog post Patricia Wright wrote described a trip she took to China to volunteer for The Five Project. Her volunteer work was part of Outside-In, where Easter Seals headquarters offers its employees paid time off to volunteer. This year, I used my Outside-In time to volunteer in Nairobi, Kenya, with a group from Willow Creek Community Church. There, we visited several schools and a community center and met so many leaders who are working to better their communities. I was able to be immersed in the culture and was challenged to try to look at life through the eyes of others half a world away.

The cultural differences took some getting used to. The food, the language, and even the way you navigate the terrain were all new to me. I didn’t meet a single person with a visible disability. Later, I realized it’s because people with disabilities are often unable to participate in social situations there. The roads were unreliable, shops and restaurants were inaccessible and there were no elevators or accommodations for people with disabilities in sight.

My group joked we were operating in African time. We found ourselves waiting longer for things, and it’s common to be late for a meeting. In Kenya, they base time by event, not the actual time. I liked this: it allowed us to appreciate our time with other people more and focus less on our schedules and personal agendas.

Kenyans value sharing and community is the complete opposite of America’s individualism. People who have a little extra give to those who are struggling. You have to be careful who you call your friend because it’s a high honor. There, “friend” means, “I share your burden,” so if I were to call one of the students I met a “new friend,” he might expect me to pay his school fees!

It was so meaningful to see life in a new way. While helping with ESL (English as a Second Language) classes, I met Igra, a Somalian refugee. Igra is learning English for the first time. I thought about how she must feel, displaced from her country, not able to return, but not quite welcome in Kenya. I tried to learn basic phrases in Swahili and I can’t imagine trying to learn English — that seems so much harder.

I tried looking at life through Faith’s eyes. She’s a high school girl living in crowded dorms in the Gurec community in Nairobi. She and her friends have the same dreams and aspirations as American girls (travel, maybe get a scholarship, find work) but fewer opportunities and resources to make them happen.

I saw the eagerness to learn to read and write in kindergarten and first grade students at Eastleigh Community Center. Unfortunately, they live in an environment where pencils, paper, and textbooks are scarce.

We met with a group of homeless teens who grew up as orphans, living on the street. One boy, Stephen, said life is difficult because he doesn’t know where his next temporary job or meal is coming from. We did our best to dive into the culture with the teens by sharing a meal of authentic Kenyan food: ugali (grits), chapati (pancake-like fry bread) and beef—the way they eat it (sans silverware!).

Talking with a coworker when I returned brought the experience full circle for me. We agreed Easter Seals is special because of the people behind the brand: our clients, their families and stories are the core of what Easter Seals is. People are what matter most in life.

When trips like these are over, the locals might not remember what you built, painted or planted, but they’ll remember your name, face and something about you. Across the world, we’re all people who are just trying to do the best we can.

Adults with ASD — Your opinion is important!

by Patricia Wright

Where to live can be a huge life choice for many of us. I have lived in eight different states as an adult, and I can assure you that I preferred some locations over others. I have a strong preference for living in urban walkable environments so I don’t have to rely on a car, and I have many other preferences, too. I feel fortunate that I am able to choose my home and neighborhood to suit my lifestyle, and it goes without saying that I think adults with autism spectrum disorder (ASD) need to be able to make these same life choices as well.

The need for residential supports for adults with ASD has been gaining traction in the media. A story on Fox News highlighted the need for “residential supports” rather than mere “housing.” Residential supports include staff, which is sometimes needed to give people with ASD a higher quality of life by developing independent living skills. An NBC piece reported a shortage of housing for adults with autism.

The National Housing and Residential Supports Survey was recently launched by Autism Speaks to increase the support of both the public and private sectors to expand housing and residential supports opportunities for individuals with ASD. The survey needs to be completed by Friday, August 9 so that Autism Speaks can gather hard data about these needs and leverage that information into advocacy and awareness. The results from this survey will be used to support recommendations on a national strategic plan for housing policy and development.

If you are age 14 or older with ASD, or if you are a caregiver for an adult with ASD, please take 15 minutes to complete the survey before August 9th. Your opinion is important!

Connecting the dots: Reintegrating veterans into civilian life

by Sara Croft

Many soldiers return home with physical and psychological wounds. They face unemployment, families that are not always intact and communities that are unable to meet their immediate and long-term needs.

At Easter Seals Crossroads we recognize the urgent needs facing military families and veterans reintegrating into their communities after serving our country. In January 2013, we launched a Military and Veterans Initiative in which we facilitated a means for area organizations to discuss how, together, we can fill the gaps and reach out to those veterans who need our services.

Colonel David Sutherland, Executive Director of The Dixon Center, began the Initiative with his keynote address to over 400 community leaders, speaking about the crucial needs that veterans who are reintegrating into the public sector rely on but may have difficulty finding. Out of this initial presentation, more than 50 key community stakeholders have continued to meet to develop a community action plan that addresses the critical reintegration areas of housing, employment and training, family support and health.

This July we were awarded a $267,580 grant from the U.S. Department of Labor to provide homeless veterans with job training aimed at helping them succeed in civilian careers. The goal of the program is to help homeless veterans in the Indianapolis metro area achieve economic self-sufficiency and stability through long-term employment.

Building on Easter Seals Crossroads’ extensive employment service experience and the Community Action Planning coalition, the Homeless Veterans’ Reintegration grant is aimed at addressing the complex challenges that homeless veterans confront. Working in partnership with a multitude of community organizations allows us to extend our services to offer veterans job search and placement assistance, on-the-job training, career counseling, life skills, mentoring, as well as help in finding housing.

Due to the nature of the grant, we are in the process of hiring qualified coordinators and recruiting volunteers with a service background. Coincidentally, a gentleman who volunteered in our Adult Day Center asked us if he could get involved with us in other ways. His background in human resources, experience working with people with disabilities and his status as a veteran made him a perfect fit to work with this new program.

“We know that understanding the culture of veterans is just as important as providing the services,” Marjorie Mansfield, Manager of Employment Services at Easter Seals Crossroads, said about this volunteer. “Besides being a subject matter expert in human resources, he has the understanding of the culture of being a veteran himself,”

Receiving this grant means that we can continue to improve the lives of individuals in our community who need vital employment and rehabilitative services.

I look forward to writing another blog as we start working with veterans so that we can share the good news of how this grant is affecting our community.

Run. Drive. Repeat.

by Beth Finke

I am so pleased to introduce Amy Richmond as a guest blogger today. Amy is a member of the Easter Seals National Associate Board (NAB). She and other NAB members recently ran in the Ragnar Relay and raised $3,000 for Easter Seals.

Jumpstarting my Easter Seals fundraising efforts

by Amy Richmond

I’ve always enjoyed volunteering. It keeps me grounded, and helps me separate the important things in life from the trivial. I love being able to redeem a stressful, corporate day by doing something that makes a positive difference (wine also helps, but the benefits of volunteering endure much longer).

Until this year, my volunteer roles had primarily been in direct service. But I reached a place in my life where I felt I could also contribute in an organizational leadership capacity. When my friend Mike Sandy told me about the opportunities on the Easter Seals National Associate Board, I jumped at the chance to be part of the group.

Easter Seals is a world-class organization that helps people from all walks of life through a broad spectrum of services. I’ve found that the majority of people in my social sphere are aware of Easter Seals, but are surprised when I tell them about all of the great work the organization does for children and adults with disabilities, people with autism, veterans and seniors.

It’s easy to support an organization that supports so many people in so many important ways. And I’ve found that others are happy to join the cause once they become aware of all that Easter Seals provides for our community.

My friend Mike Sandy serves as the NAB president, and he suggested I jumpstart my Easter Seals fundraising efforts by running the Ragnar Relay (a 195-mile relay race from Madison, Wisconsin to Chicago). My first response was, “uh, no.” I’m not a runner. I’m more like a jogger. I will participate in the occasional 5k fun run if the weather is nice and there’s beer at the finish line, but being part of an intense, long-distance race with a team counting on me to perform seemed out of my league.

Mike assured me that it wouldn’t be competitive, that the race would include runners at all levels, and we could create a lot of buzz about the Easter Seals mission. So I said I’d do it. And as I was explaining the race to my husband, who I was sure would tell me I was crazy for agreeing to this, he said he’d run it too!

The Ragnar Relay is a race comprised of teams of 12 runners who travel in two vans, running day and night until they reach the finish. One of the 12 is always running. The remaining 11 are traveling in the van to deliver the next runner to the hand-off point and pick up the one who just finished. It’s basically: run, drive, repeat. You may have noticed that “shower” and “sleep” were not listed in the steps. I had some serious concerns about those omissions, but I stuck with it.

Way to go, Amy! She sure enjoyed her experience in the Ragnar Relay, and here’s some good news for people like me, who are a little less energetic than Amy: you don’t have to be a runner or a jogger to participate in the Chicago Walk With Me event in October. People of all abilities can support Easter Seals at Walk With Me, and anyone interested can join us for a kickoff breakfast on August 14, too — meet you there!