Racing against the clock

by Bob Glowacki

Last week our local NPR affiliate aired a story featuring members of our staff here at Easter Seals Southeast Wisconsin.

The story on WUWM highlighted the need for early diagnosis — followed by services — to give children the best outcomes in life. The stories were told by the experts: families involved in our autism services. Each family has seen great strides in the abilities of their children and, as a result, has great hope for the future.

Here at Easter Seals we’ve been using our spokesperson network, news stories and public dialogue to let people know about our Make the First Five Count initiative, but we still have a lot of work to do. Another recent story that aired on ABC news quoted a study saying that over half of children in there sample were not identified as having autism until age 5. This is precious time lost in giving a child the support he or she needs to succeed in school and in life.

So, please help us to get the word out on the Ages and Stages Questionnaire to help more families monitor their children’s development and, when necessary, get help, hope and answers so they can give their child the best start in life.

The queen of Knowbility

by Beth Finke

Five years ago I sat on a panel with Sharron Rush, the executive director and co-founder of a non-profit in Austin called Knowbility. We’ve been friends ever since, and this week I’m flying with my Seeing Eye dog Whitney to hear Sharron give the morning keynote at this year’s Big Design Conference in Dallas.

Knowbility, Inc. helps make the internet and other technologies accessible to people who are blind, visually impaired, hearing impaired, have mobility impairments and cognitive or learning disabilities. Sharron’s keynote is titled “The Big Umbrella of Inclusive Design” and will focus on a recent challenge — how to design a voting system that works for all citizens, including those with disabilities. From the description on the Big Design web site:

Lessons learned — and those that we are still learning — have profound impact on design effectiveness and flexibility. As we design systems for inclusion, we find that as we remove perceived barriers we also solve unanticipated problems and improve user experience for all.

Here’s an understatement for you: accessible websites can really make a difference in a person’s life. Sharron’s non-profit sponsors a yearly conference/workshop about accessible technology, and I was fortunate enough to attend John Slaten Access University, (Access U) in Austin back in 2008 with two of my colleagues from Easter Seals.

Thanks to the efforts of programmers and website developers who value the importance of accessibility for the blind, speech synthesis allows me to Google to do my research, I’m able to fill out online forms on my own, I flip through websites to find information about events, times, locations, and on and on. All that stuff the rest of you do using your eyes and a mouse? I do that by using my ears and keyboard commands.

Excuse the mixed-metaphor here, but Access U was really an eye-opener for me. It was heartening to be around so many people with an active interest in keeping the web accessible. Now I look forward to heading to the Big Design conference and applauding Sharron Rush’s efforts.

Capturing that moment of joy

by Bob Glowacki

I was going through my twitter feed and found an amazing video showing a father seeing his child walk for the first time. Do you remember when your child first walked, the stages he or she went through? First, learning to stand by, holding an object they might be tempted to walk towards? After they learn to stand, they just think about getting to something they want. As a parent, you put out their favorite item to tempt them to walk and finally it happens like a thunder bolt, they walk. They never stop walking. Your life changes as a parent, now the world is accessible to your child and you must protect them from cords, outlets, you name it.

The first steps in life, whether in walking or in learning to talk, are dramatic moments of growth, and it’s why we believe every child deserves the best start in life.

Over here at Easter Seals Southeast Wisconsin, first steps like these are common, but we don’t always have video to catch that moment of joy in a parent’s eye. It is so special. And oh, did I forget to mention? The Dad in the video I saw was returning from a tour of duty in Afghanistan, and his son lives with Cerebral Palsy. His wife wanted this young father to see his son walk for the first time, and it all happened at the soldier’s homecoming.

So just watch this video, but I warn you: you may need a tissue! This moment reminds me of the tremendous sacrifices our men and women in the military and their families are making for us. Some are unable to see their child’s birth and others miss major moments in their child’s life from first steps to graduation.

With Memorial Day coming up, I hope you’ll put out your flag to salute these dedicated men and women. And if you see a veteran, make sure you thank them. Remember, freedom isn’t free. Someone else paid the price for us. God Bless America, and happy Memorial Day!

U.N. Convention on Rights of Persons with Disabilities is on its way

by Jennifer Dexter

Over 3,000 Easter Seals advocates sent a message to President Obama asking him to send the United Nations’ Convention on the Rights of Persons with Disabilities on to the Senate so that they could APPROVE the treaty. Your voices were heard! On Thursday, May 18, the President transmitted the Convention to the U.S. Senate.

The U.N. Convention on the Rights of Persons with Disabilities affirms that all people with disabilities must have the same rights and dignity as their non-disabled peers. As you can imagine, the rights and independence of people with disabilities varies greatly by country throughout the world. In some countries people with disabilities face unimaginable barriers to dignity and independence. In others, there may still be progress to be made in specific areas addressed by the Convention.

One of the great things about the Convention (which uses many of the same principles as the U.S. Americans with Disabilities Act) is that it would create a base level of rights protection for people with disabilities in all countries that approve it.

More than 100 countries across the globe have added their support of the Convention. The U.S. Senate must approve the Convention before September 2012 in order for the United States to participate in the oversight body of the Convention and influence its implementation. This will allow us to assure that the Convention lives up to its promise.

Thank you all for your on-going support of people with disabilities all over the world. Easter Seals’ Office of Public Affairs will continue to monitor the ratification process and we will be calling upon you to further weigh in as the Senate addresses the treaty. For now, though, let’s enjoy this victory!

Letting everyone in the pool

by Beth Finke

It hurts to hear any story of discrimination against a person with a disability. When the discrimination is occurring right in your backyard, it’s especially painful.

A federal lawsuit filed this week by Illinois Attorney General Lisa Madigan claims the Illinois High School Association (IHSA)is violating the rights of students with disabilities by not allowing them to compete in state athletic events.

The story of a high school junior who is paralyzed from the waist down and hopes to participate in the state’s swimming competition next school year has brought a lot of attention to the lawsuit. Sixteen-year-old Kate Callahan asked the IHSA, which regulates state high school athletic events, to establish a scoring system and accommodations that would allow students with disabilities to participate competitively in the track and swimming state finals. A Chicago Tribune story quotes Alan Goldstein, an attorney with Chicago-based Equip for Equity, saying that “close to half of the country is ahead of Illinois” when it comes to adopting policies aimed at making competition more inclusive for students with disabilities. Attorney General Madigan concurred:

“Every student athlete should have a chance to compete, including athletes with disabilities,” Madigan said in a statement Wednesday. “Many other states give student athletes with disabilities the opportunity to compete. Students in Illinois should have the same chance.”

It’s downright embarassing to think a lawsuit is necessary to make this happen in the state I live in. but in this case, I’m glad our attorney general went ahead and filed.

Small volunteer, big heart

by Rachel Talen

This 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

by Patricia Wright

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

by Rachel Talen

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

by Bob Glowacki

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

by Beth Finke

I 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.