Small volunteer, big heart

Watch video of Maya on ABC Action NewsThis story on ABC Action News in Tampa Bay made the rounds at the Easter Seals headquarters office one afternoon. We were all captivated by this adorable 6-year-old volunteer. She wanted to help out, so her mother called several organizations before Easter Seals Florida said yes.

ABC Action News anchor John Thomas talked with Mya, who reads to the kids at Easter Seals with expression in her voice and a smile on her face. She’s collected over 800 books and transformed a storage area into a library where the kids at Easter Seals gather around her in a rocking chair — her feet don’t touch the floor.

I hope you’ll take a moment to listen to Mya’s story and that it inspires you. It’s proof that there’s a way for everyone to give back, no matter how young or old you may be.

 

Employment still seen as a rare triumph

The autism community has long perceived that adults with autism are woefully under/unemployed, and now researcher Paul Shattuck and his colleagues have published a study in Pediatrics that shows our perceptions were correct.

Dr. Shattuck’s study provides data to document that indeed young adults with autism are not transitioning out of high school successfully into the world of work and higher education. More than 50 percent of young adults with autism had no participation in work or higher education in the first two years after high school. Thirty-five percent had no work or education opportunities six years after high school.

Dr. Shattuck shared that “Many families with children with autism describe leaving high school as falling off a cliff.” After graduation, there is a glaring lack of services for adults with an autism spectrum disorder. So much of media attention focuses on children. Dr. Shattuck stressed how important it is for people to realize autism does not disappear in adolescence, and that the majority of a person’s lifespan is spent in adulthood.

There are many stories of success of individuals with autism gaining/maintaining employment — Bob Glowacki published a blog post here earlier this month about Erin, who secured a great job of her choosing at a library. Unfortunately these stories of employment success are too few and far between. For most of us in adulthood, working is simply an expectation. For individuals with autism it is still seen as a triumph.

Easter Seals provides workforce development services across the United States. As a service provider, we are well aware that there is room for improvement in providing services for adults with autism. We will work to do our part, and the publication of Dr. Shattuck’s study should raise awareness throughout the United States that we all have work to do to ensure every student with autism transitions out of school into a meaningful, productive, adult life.

 

London calling

Watch Anastasia Somoza's video A co-worker sent me a link to a post on Indiegogo by a Georgetown grad who’s received a full scholarship to the London School of Economics and Political Science. Anastasia Somoza is looking forward to pursuing a master’s degree in human rights and traveling and making new friends in London. But she is facing some significant setbacks.

Anastasia Somoza’s cerebral palsy requires that she have an aide help her get in and out of bed, get to class, dress, shower and transfer to and from her wheelchair and walker. As things stand, she is unable to attend school in London because Medicaid will not fund her aide outside of her state of New York.

That’s not stopping Anastasia though! Indiegogo is a global platform for crowdfunding that lets anyone anywhere raise money for anything. She put her story up on Indiegogo and set a goal to raise $15,000 by June 15th — that’s the amount she’ll need to fund three community service volunteers to assist her at school.

I love Anastasia’s can-do attitude, and the fact that she’s using her challenges to make a difference for others. She’s actively raising awareness of the obstacles people with disabilities face when trying to access higher education. And along with her mother, she is working on legislation that would enable students with disabilities who need personal-care assistance to take their aide with them if they are enrolled at an institution of higher education. She really wants to help people with disabilities reach their maximum potential and be as independent as possible, which echoes Easter Seals’ mission.

I found her video so inspiring. I hope you’ll watch it … and share it!

 

Erin at work: an employment success story

I visited my local library today. As a father of two, we visit the library about every two weeks. I am not a Kindle guy and have no library at home to store books I’ve read, so the library is my literary hook-up.

So, as I was walking through the aisles to help my daughter find a book about Ireland for an upcoming school project, I ran into Erin! You might remember Erin from a post I wrote last year about her search for employment. Erin has autism and is in her twenties. She graduated with a library science degree and wanted to earn some money before graduate school.

Erin was living at home and unable to find a job, and when she sought job counseling through the department of vocational rehabilitation in Wisconsin, the counselor tried to connect her with a job in reception. Erin is very friendly, but relating to others and to large groups can be draining.

It turns out Erin’s dad knows Sue Russell, the VP of Community Engagement here at Easter Seals Southeast Wisconsin. He told Sue about Erin’s wish to work in a library. Sue told me the story. I have some relationships at our local libraries. I shared Erin’s story with two libraries in my local area. Erin was hired as an intern. A position working at our local library opened up, and Erin got the job!

Erin shared her story at one of our autism awareness events in April and talked about how Easter Seals changed her life. She said she feels like a caterpillar who has become a butterfly. The audience was amazed at her poise, her words and her talents. Until word about Erin got to Easter Seals, though, Erin’s talents were going untapped.

Sadly, 80 percent of individuals with autism and other disabilities are underemployed or unemployed. Erin represents multitudes of people with autism and other disabilities seeking to use their talents and abilities in the workforce, and her story offers hope.

Each of us can pay it forward for someone we care about by using our contacts at work or in our personal lives to open doors for others to a job that gives someone inclusion in our workplace and greater independence.

 

Cooking without looking

Beth and Laura MartinezI was a bad cook when I could see. That didn’t change when I lost my sight. I still can’t cook, but now, I have an excuse.

Or at least I did have an excuse, until a story about Laura Martinez came out in the Chicago Tribune a couple years ago. Martinez was 25 years old at the time and attending the prestigious Le Cordon Bleu culinary program at the Cooking and Hospitality Institute of Chicago. And, oh yeah, she just happens to be blind. From the story:

“I’d never worked with a blind student before,” said Karine Bravais-Slyman, who heads the institute’s general education department, “but Laura did incredibly well in the kitchen. She showed many students that even with this type of impairment, she could still do better than students who have their sight.”

Okay. I admit it. It’s not lack of sight that keeps me from being a good cook. It’s lack of talent. When renowned Chicago chef Charlie Trotter heard about Laura Martinez, he was so intrigued that he visited her at the Chicago Lighthouse for the Blind, where she worked in the cafeteria kitchen. He said he was watching her work and saw how she handled things with her hands, touching for temperature and doneness, and when he ate her food, he thought it was “quite delicious.”

The two of them got to talking, and when she told Chef Trotter about her dreams, he asked her what she might think about working at Charlie Trotter’s.

You read that right. Charlie Trotter asked her to work for him. He also offered to help with her tuition at cooking school. When I finally met Laura Martinez at a speaking engagement last year, she’d been working at the restaurant a year already. Her speciality? Risotto.

On Monday, May 7, the James Beard Foundation honored Charlie Trotter with its 2012 Humanitarian of the Year Award. The Charlie Trotter Culinary Education Foundation works with staff and purveyors to donate time and resources to its fundraising dinners, and 100% of the money raised goes directly to scholarships for worthy students entering into culinary programs and professions — like Laura.

I have no idea who Chef Trotter’s competition was for this year’s award, but I’d say he deserves it. I’m sure Laura Martinez agrees! And talk about paying it forward — in her spare time (!) Laura volunteers to teach a cooking class at Friedman Place, a non-profit Supportive Living Community for Chicago adults who are blind and visually impaired. Congrats on the award, Charlie. We’re proud of you. And of Laura.

 

Meeting my blog hero

Patricia Wright with Kristina ChewReading about people with autism gives me perspective as an autism professional, and stories shared by parents provide fabulous insight, too. One parent that I have followed for years is Kristina Chew. She writes daily about her son Charlie and her family’s experiences with a child with autism in her We Go with Him blog.

Dr. Chew provides a real world perspective of both the celebrations and challenges of parenting Charlie. Her writing is fantastic and her stories are entertaining, real and, at times, downright heart wrenching.

I was in New York for work last month and Dr. Chew graciously agreed to meet me and a couple of my colleagues for lunch in the city. It was like meeting a rock star. I have been reading her writing for years –both her We Go with Him blog, and on other blogs, like Care2.

Dr. Chew was as interesting in-person as she is on paper. Her willingness to share her life experience with such grace is a gift. Check out her work; you’ll want to become a member of the Kristina Chew fan club too!

 

Meet Princess Hannah!

Hannah speaks at the galaMove over, Kate Middleton, Easter Seals DuPage and the Fox Valley Region has its own princess in the spotlight. Our very own Hannah Thompson!

Hannah spoke as the Ambassador for our organization’s 34th Annual Benefit Gala, “A Royal Affair” on April 14th at the Four Seasons Hotel in Chicago. Hannah has been a member of the Easter Seals family for four years, receiving physical therapy services. She comes to Easter Seals to walk on the treadmill to strengthen her body due to Cerebral Palsy and three different movement disorders, but she says her favorite part of therapy is the time she gets to spend with her therapists, Joanne and Celine, having girl talk.

Hannah, 21, is a senior at Elmhurst College, majoring in communications. When she graduates this spring, she aspires to become a professional speaker. She is already well on her way, having given speeches at the Rehabilitation Institute of Chicago and the American Pediatric Association. She is also an accomplished writer, having been published in Chicago Special Parent Magazine last summer.

Other than being a student and speaker, Hannah is a proud member of her sorority, Phi Mu, and is involved in the Catholic Church. Like most college students, Hannah also can be found socializing in the cafeteria and grabbing a white chocolate Frio at the campus coffee shop. And with everything else going on, she somehow manages to keep up a blog chronicling her college adventures.

Other notable royalty at this year’s “extrava-gala-ganza,” were our generous sponsors Lisa and Fred Barbara, Exelon Nuclear and Schneider Electric. Bob Jank was recognized with the 2012 Carol and Jack Sanicki Crystal Heart Award in honor of his years of service and support.

A huge thank you to everyone involved — the gala was a record-setting event for us, grossing nearly half a million dollars to help children with disabilities receive the services they need!

 

Flowers for my mom, who did what she had to do

Flo turned 96 in April. She’s having her cake and eating it, too.My mother — I call her Flo — just celebrated her 96th birthday, and with Mother’s Day coming up, today’s post is in honor of Flo.

Flo has always been unpretentious and uncomplicated to a fault. I am the youngest of seven, and when I asked her once why she wanted such a large family, she said, “well, really, I always wanted just two children.” Her first-born was my sister Bobbie; the second, my brother Doug. The perfect little family.

“What happened?” I asked.

“Hmmmmm,” she said, thinking, then answered with a laugh, “too many parties, I guess.”

Flo’s grandparents were farmers who emigrated from Germany in the late 1800s, settling 15 miles west of Chicago in a town called Elmhurst. The farms had been replaced with post-war housing developments and expressways to the city by the time I was born. The Elmhurst home Flo and my dad, Eddie Finke, had invested in had been intended for a family of four. By the time I was born, there were no bedrooms left. My crib stood in the hallway until I was two. Not long after seeing to it that all his children were shoehorned into proper bedrooms, my dad had a heart attack at home. My sister Bev, six years old then, remembers him leaning on the closet door in his bedroom and clutching his chest. I slept through it all. I was 3 years old. I remember very little about him and it took years to find out anything else. Every time I asked, someone started crying, so I learned not to ask. Sometimes when we drove by the funeral home I’d call out, “that’s where Daddy lives!”

Eventually, Flo went to work. Daddy had switched jobs shortly before his death and had no life insurance. She got Social Security, but it wasn’t much. Before I started kindergarten, she took a job at a bakery, where I could go with her. I played and ate fresh bread and donuts in the back room while she waited on customers. When I started afternoon kindergarten, one of the other ladies at the bakery walked me to the crossing guard at noon.

My brothers and sisters had already taught me to read, and when my teachers discovered this, they tested me to see if I should skip ahead to first grade. I was tall enough, my test scores were high, and administrators knew my mother would have an easier time of it if I went to school all day. I was promoted at winter break. Flo started taking typing classes in an adult education program and studied for her high school diploma. Shortly after I turned seven, she took her first full-time job as a clerk in a nearby industrial town, a job she’d keep for the next 20 years.

It was during her first summer working that I was diagnosed with Type 1 diabetes. Decades later, the chronic illness would leave me blind. At my diagnosis in 1966, I was hospitalized for two weeks. Flo couldn’t miss work, but every morning and evening she’d stop by to see me on her commute.

So Flo was a single mom and we three youngest were latchkey kids long before those terms were commonplace. Our other brothers and sisters were married or out working by then, so Flo, Marilee, Bev, and I took care of the house, mowed, cleaned out the gutters, did makeshift repairs. Dinner was always ready when Flo got home; we lived what we considered happy, normal lives.

Flo never complained about things being hard or unfair. She did complain when we didn’t do our chores or if we fought over dishwashing duty or messed up what she’d just finished cleaning. But she never told us we were a burden or that we’d worn her out, though plenty of evenings she just went to her room and lay down. When we went in to ask if anything was wrong, she’d say, “no, I’m just resting my eyes.”

Send Mom a special Mother's Day gift -- $10 of your purchase will support Easter SealsFlo was still working when I graduated from college, fell in love and got married. She had retired by the time our son Gus was born, and when he was diagnosed with a genetic defect, she became the cheerleader for him that she’s always been for me.

I was visiting my son’s special ed classroom when another young mother struck up a conversation with me. Eventually we got around to what my family had been like when I was growing up. “Oh, so that’s where you get it,” she said after I described Flo.

“Get what?”

“Your courage,” she answered.

I was flattered, but had to chuckle. Flo would have been embarrassed. She didn’t believe she was being courageous. She saw her life in simple terms: she did what she had to do. And I realized that I look at my own life that way.

And so, in honor of Flo, we’re keeping this Mother’s Day celebration simple — taking her out for dinner at her favorite local diner in time for the early bird special. I’m adding a little pizzazz this year: having ProFlowers deliver a flowering plant, too — she’ll appreciate that $10 of the purchase will be donated to Easter Seals, an organization she’s known all her life. I can picture Flo caring for the plant day-to-day, marveling at how it grows. Under her simple, methodic care, her Mother’s Day plant will blossom and thrive — just like we all have.

 

Lessons learned in Sunday school

The last day of April? For real? Seems only yesterday that The National Baptist Convention, USA, Inc. H.O.P.E. Ministry promoted “Make the First Five Count Sunday” on April 1! This is the first time Easter Seals partnered with national Baptist churches across the country to raise awareness for Make the First Five Count.

Baptist Convention, USA, Inc. H.O.P.E. designated April 2012 as Easter Seals Awareness Month to stress the importance of early intervention to its more than 7 million members. What a good feeling it is to broaden our reach so that more families can access the Ages and Stages Questionnaires and help monitor their child’s development.

I couldn’t help thinking about Make the First Five Sunday earlier this month when I volunteered at an inclusive Sunday school. While on the floor racing cars and building block houses, I loved thinking Easter Seals might be reaching these very kids and their parents! I learned so much by watching typically developing kids and kids with disabilities play together, I just wish I’d had the chance to experience this type of setting when I was younger.

I hope that through The National Baptist Convention, USA, Inc. H.O.P.E. Ministry and churches, we can spread the message of early intervention so that many more young kids have access to early intervention services.

 

Here’s your two-minute Twitter lesson

Share the infographicWe need your help! Join our Make the First Five Count Flash Mob on Twitter tomorrow, Friday, April 27 at 10 a.m. your time.

The Week of the Young Child, sponsored by the National Association for the Education of Young Children (NAEYC), focuses public attention on the needs of young children and their families. We’re spreading the word out there through our Make the First Five Count initiative with a couple of “firsts” for Easter Seals.

This week, we released our first-ever infographic that visually tells the Make the First Five Count story: every year, more than one million kids with unidentified disabilities and developmental delays enter school with learning and health issues that put them far behind their peers and have a lasting, negative effect on their ability to meet their full potential. You can view the infographic on the Easter Seals’ Facebook page and get the full story.

The other “first” is the first-ever Easter Seals flash mob on Twitter. If you’ve fallen in love with Twitter (as I have!) you’ll be excited about this! Here’s how it works: we want the public to know how important early intervention is for kids with disabilities, so if we all tweet the exact same message on the same day, Make the First Five Count and the infographic can really get out there.

To join the Make the First Five Count Flash Mob on Twitter, tweet this message tomorrow, Friday, April 27 at 10 a.m. your time:

We’re in crisis! Every minute 8 babies are born, 2 of them are at risk of developmental delays. Get the facts http://owl.li/aoG3Y #MFFC #FF

If you can’t make the flash mob, you can still help:

Here are some key people to follow:

But I’m not social media savvy,” you say? Well, here’s everything you need to know about Twitter in two minutes or less.

Two-Minute Twitter Lesson:

Tweet: A message in 140 characters or less.
Handle: Your “username.” e.g., @Easter_Seals.
Hashtags (#): are a way to categorize tweets so that other users can see tweets on the same topic.
Direct Message (DM): Private tweets. Talking offline.
Follow: “Friending”. You’ll see these tweets on your homepage!
Mention & reply: Use the person’s handle (@PersonYouWantToReplyTo).
Retweet (RT): Forwards a tweet to your followers.

See you at the flash mob!