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!

 

Patient-centered health care around the world

A classic London scene with Big Ben and the Houses of ParliamentI had the privilege of representing Easter Seals at the International Alliance of Patients’ Organizations (IAPO) 5th Global Congress in London last month.

The Congress was titled “Achieving Patient-Centered Healthcare: Indicators of Progress and Success.” It sounds very formal, but the focus was looking at the values that underline patient-centered health care (why do we care?), the methods to ensure that health care providers deliver the care needed (what tools will help us accomplish this task?) and the indicators that might help shape the practice of health care with the patient in the center (how will we know if we are succeeding?).

We looked at and discussed these issues through the lens of the individual, from the perspective of an organization and also from an international perspective. In one of the sessions, I started jotting down the countries that were represented by the people who offered comments. My margins filled up quickly. The countries included Israel, Spain, Germany, Uganda, Malawi, Australia, Ireland, Holland, Croatia, South Africa, Bulgaria, New Zealand, Sri Lanka, Switzerland and Italy. Those are the ones I could identify! The official language of the Congress was English, and the pleasure of hearing all those accents really added to the sense of the geographic diversity of the attendees.

I’ve only been in London once before and that was 15 years ago. The age of the city of London is part of its charm for me, but also a reminder of the perseverance that let the city weather the centuries. Going by Buckingham Palace, even if in a taxi, was a wonderful sight! I couldn’t help but think of the joy I felt watching TV last year and seeing all those people gathered in the circle in front of the Palace for the Royal Wedding. I was there long enough to see them getting ready to change the guard: furry black-hatted palace guards in red uniforms on horseback all made the scene respectful and timeless.

On my last day, I realized that if I looked south from my hotel rather than north, I could see Big Ben, the Parliament buildings and the spires of Westminster Abbey. I’d been totally focused the other direction! A short walk let me see all of those sights up close and watch a protest in front of the Parliament buildings that looked a lot like Lafeyette Square across from the White House here in DC. It reminded me that our roots are English and made me feel like I wasn’t so far away from home after all.

Being surrounded by all that history was meaningful to looking forward through the efforts of the international Congress. Working with people from all over the world to learn more about how best to provide care for people with disabilities and chronic illnesses will help inform Easter Seals’ priorities in the future.

 

Hardly working

Two grad students from IIT’s Institute of Design contacted me about a class project they were working on … they had to come up with a product that helps people who are blind, and they wanted me to help with their research. One of the many, many, many questions they asked during an interview was whether there is one career that is common for people who are blind. Truth is, very few people who are blind have jobs at all. From a story in Forbes:
“Despite the technical advances made to help blind employees, there is still a staggering unemployment rate among that population. Several organizations, including the American Foundation for the Blind, put it at 70% among people of employment age, a number that has stayed constant for many years.”

Pretty grim. This week, however, I read about a poll taken by the Society for Human Resource Management and the Cornell University ILR School Employment and Disability Institute that brings a glimmer of hope. Nearly two-thirds of the 662 human resources staff who answered the poll said that their companies include people with disabilities in their diversity plans and train staff on how to interview people with various needs., in 57 percent of the cases, hiring managers said their companies have relationships with local groups that promote employment of people with disabilities.

So hey, maybe things will start moving in the right direction. We still have a long way to go, though — I also read an article in Disability Scoop this week that says that the U.S. Department of Labor reported that as of March 2012, 15.2 percent of people with disabilities were unemployed, compared to 8.2 percent of the general population.

 

A crafty way to help Easter Seals!

I have a confession to make: I’m a closet crafter. Or maybe I’m more of a wannabe extreme crafter. Either way, it’s embarrassing that I browse every aisle in a craft store, even if I know exactly what I need. My family is a little weirded out that now all their birthday gifts are homemade. And Pinterest has only fueled this fire, my friends!

Crafts are fun to talk and write about, which is why I love working with A.C. Moore during April. For the third year, A.C. Moore is helping Easter Seals by supporting Make the First Five Count and Act for Autism through a register donation program and “Make and Take” crafting event.

A.C. Moore launched this campaign as part of its Crafting a Better World program in 2010, and since then customers and store team members have raised more than $300,000 for Easter Seals!

There are still a couple weeks left to visit your local store and donate $1 at checkout. (And don’t forget to thank your cashier for helping Make the First Five Count!) We also hope you can come to the in-store “Make and Take” craft event this Saturday, April 21st. There, you can buy a t-shirt and then decorate it for free to show your support for Make the First Five Count and kids with autism.

If you love crafting, or just want a fun way to help, check out the event and let us know what you think!

 

War, what is it good for?

Adult and child-sized chairs at the Harry and Jeanette Weinberg Inter-Generational CenterOne of the many things I love about working for Easter Seals is that we truly take an intergenerational approach to our advocacy and services. I have taken many legislators and their staffs to our Easter Seals Harry and Jeanette Weinberg Inter-Generational Center in Silver Spring, Maryland, and have seen their eyes open to the value of older adults and children working and playing side-by-side.

My favorite thing about the center (and one thing I always, always point out) is the chairs. Each full sized easy chair for the older adults has a matching child-sized one right beside it. It is such a nice visual statement about the magic that happens there.

One of my frustrations is that too often the public debate tries to pit generations against one another. You will often hear that older adults are “bankrupting future generations” or that education and children’s services are “draining resources” for needed supports for older adults that are often overlooked. A good example of this is an article in the April issue of Esquire magazine titled “The War Against Youth.

The truth is that we are all stronger when we work together. Generations United is one group that is helping us lead the charge in the effort to end intergenerational conflict in the public arena. I am proud to serve as the co-chair of their Policy Committee. Generations United has posted a response and a call to action in response to the Esquire article and I encourage everyone to read the article and comment.

 

Autism on tour

Finding Kansas on AmazonI’m reading a book by Aaron Likens called Finding Kansas: Living and Decoding Asperger’s Syndrome. It’s so interesting to see the world through the eyes of an individual with Asperger’s. Likens does an incredible job of describing his situation in a relatable way — he says it’s all about finding his Kansas, or his comfort zone.

In addition to being an author, Likens is a public speaker. He’s spreading the message about the importance of early intervention through his National Autism Understanding and Awareness Tour, echoing Easter Seals efforts around early autism diagnoses with his slogan, “Sooner Equals Better.”

Aaron works as an Autism Ambassador and Community Education Specialist for TouchPoint Autism Services, the oldest and largest provider of autism services in the state of Missouri. Easter Seals is partnering with TouchPoint to spread the word about the tour, so check out the media kit (PDF) to see if Aaron is speaking in your city, and please extend our invitation to others to hear Aaron’s inspiring story.