Review of A&E’s “Born This Way” about teens with disabilities

by Katy Beh Neas

Last week the cable channel A&E launched a reality series called Born This Way. All six episodes of this show follow the lives of young adults who have intellectual disabilities who live in the greater Los Angeles area. I was able to get a sneak preview of this show and was absolutely thrilled to watch it.

Our daughter is a big reality TV show fan, with The Kardashians at the top of her list. Me, I’m more the Love It or List It type — I want to see creative people make old houses into new, updated spaces.

I think Born This Way will appeal to us both.

The first scene set the tone for the whole series. Two handsome young men sitting at a bar drinking beers, talking about girls. These two young men were doing what young men across the country are doing every day. It’s expected, typical. The fact that the young men have Down syndrome does not overpower their basic man-ness.

The show also captures the real push-pull between these young adults and their parents. Their parents love, support, encourage and promote their children’s abilities. They also fear for what the future holds. One of the most poignant scenes is when a daughter tells her mother that she needs to get a life of her own. It was powerful, profound and incredibly honest.

I love this show for many reasons, most importantly because it provides a venue for adults with disabilities to speak for themselves about their lives and their dreams.

Tune in tonight at 10 pm Eastern. I will be setting my DVR, and I hope you will, too. With all of us watching the current six-episode series, we can influence A&E to make an additional 6 episodes.

Check out Easter Seals Thrive’s media hub for more media reviews and recommendations as well as a look at disbaility in media.

These D.C. internships for students with disabilities even pay for housing

by Beth Finke

If I were in college right now, or had just finished college, or was attending law school or grad school, I’d stop everything I was doing and immediately apply for a spot in the 2016 AAPD Washington DC Summer Internship Program for Students with Disabilities. AAPD stands for the American Association of People with Disabilities, and their summer internship program provides college students, law students, new graduates and other graduate and professional students with all sorts of disabilities the opportunity to work in public service for 10 weeks on Capitol Hill and at federal agencies. Each intern is matched with a mentor who will assist them in their career goals, and as if that isn’t enough, the internship also provides the interns with a stipend, transportation to and from Washington, DC, and fully-accessible housing. From the AAPD web site:

At the beginning of the summer, interns participate in a 1-week orientation session to learn about AAPD as well as the disability rights movement, meet the other interns, and participate in a variety of engaging workshops and events. As part of the AAPD network, interns also receive opportunities to attend events on Capitol Hill, conferences, community events, happy hours, and more.

Ah, to be young again. Sigh. So while I may not be able to apply, if you qualify, I sure hope you take advantage of this. The application is available online and is due on January 15, 2016 at 5:00pm Eastern Standard Time.
AAPD asks you to submit all documents to internship@aapd.com.

9 great apps as gifts for kids with special needs

by Beth Finke

About this time last year, I wrote a post about a Toys “R” Us Toy Guide for Differently Abled Kids — a free toy-selection guide they put out every year during the winter holiday season for parents and friends of children with disabilities. Items featured in the guide promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

Well, I just got news that they’ve added another guide to help with gift-buying. The Toys “R” Us App Guide for Differently Abled Kids is available this year to help identify apps that are appropriate for children who have special needs. Toys “R” Us selected the following nine apps, sorting them all by specific skill-building needs:

• LumiKids Park by Lumos Labs, Inc. This interactive learning experience engages players cognitively, socially and emotionally! The park is filled with fun, skill-building challenges. Plus, physical activities are hidden within for gross motor practice.
• Wheels on the Bus by Duck Duck Moose, Inc. A musical adventure complete with swishing wipers and spinning wheels! Kids practice vocalizations and verbalizations by singing along, while being introduced to instrument sounds. Hand-eye coordination and isolated finger movements come on board as players spin the bus’s wheels, pop the bubbles and open/close the doors.
• Dr. Panda’s Restaurant by Dr. Panda Ltd Combine mealtime with fun time! Ten delicious, international dishes and 8 animal guests to serve provide the perfect recipe for fun and learning. Kids chop, blend and fry their way to food recognition and ingredient identification as they create the perfect meal for their guests, while feeding their social and emotional skills.
• Doodle Buddy by Pinger, Inc. Fun you can have with your fingers! Aspiring artists can paint, draw, scribble and sketch, add decorative stamps and share their original masterpieces with family and friends via email. This app helps promote isolated finger movements as kids finger paint and place the embellishments. Kids also can practice shape, letter and color recognition and identification.
• Monki Birthday Party – Language Learning for Kids and Toddlers by Monkimum SL. It’s Cowy’s birthday! Help her celebrate by decorating, making the birthday cake, breaking open the piñata and more. Children focus on a variety of language skills as they follow instructions, practice shape and color identification and recognition, and practice beginning math skills such as counting and size comparisons.
• Reader Bee and the Story Tree by Learning Circle Kids LLC. Based on brain research, this app is buzzing with ways to motivate little learners! Children start by identifying and recognizing individual letters and progress to understanding how a combination of letters form words. Best of all, the learning happens at the child’s pace, allowing each player to learn in his or her own style.
• Curious George Goes Camping by Tribal Nova. Thoroughly entertaining, this app helps young children develop receptive and expressive language and reading-readiness skills through animation, personalization and story-telling activities. Kids are encouraged to listen to stories regaling George’s curious capers, ask questions, predict what will happen next and create their own animated stories.
• Super WHY! by PBS Kids. Alphabet Power. Spectacular Spelling. Wonder Words. Story Saver. Kids play with the 4 familiar main characters from the hit PBS TV series with 4 interactive games that help teach essential literacy skills! Vivid colors provide visual stimulation, while the Learning Rewards, music and sounds offer pleasant auditory input. A fun way to keep the principles of the Super WHY! Power to Read available anytime your child wants a reading adventure.
• Sago Mini Friends by Sago. Fix a birdhouse. Play dress-up. Enjoy a snack. Players spend time with their favorite Mini friends! Each friend’s house introduces a different interactive experience that helps children prepare for future play dates as they share, take turns, learn to be patient and develop empathy. This virtual play date features 5 friends and 10 activities for plenty of pretend-play opportunities.
• Tiggly Shapes by Kidtellect Inc Just tap and the screen reacts! The 4 interactive toys (circle, square, triangle and star) have silicone touch points that allow your tablet to react to the shapes as if kids are using their fingers. Three award-winning apps help blend the virtual world with reality as kids incorporate the tactile shapes into play and practice shape recognition, story telling, creative expression and more. Best of all, no Wi-Fi, Bluetooth or batteries required.

With all the apps available to children with special needs, I don’t know how Kids “R” Us managed to limit their list to just nine.You can also check out our list of fun storytelling apps for both nonverbal and verbal kids and other apps for families with disabilities.

If any of your favorite apps for kids with special needs were left off of the Toys “R” Us list and you’d like to recommend them to fellow Easter Seals blog readers looking for gifts for kids with special needs this year, by all means leave your recommendation in the comments section here – thanks.

Did polio have anything to do with Itzhak Perlman’s musical talent?

by Beth Finke

Maybe it’s because I’m blind. I’ve heard Itzhak Perlman perform on the radio and on television, but without being able to see the renowned violinist on stage, I had no idea he has a disability.

Until, that is, I heard Steve Inskeep interview Itzhak Perlman on NPR’s Morning Edition a couple weeks ago.

Itzhak Perlman contracted polio when he was 4 years old, and he’s used crutches ever since. When asked about his disability during the NPR interview, he said it has nothing to do with his performance. “I can’t walk very well, but I’m not onstage to do walking,” he told NPR’s Steve Inskeep. “I’m on the stage to play.”

I thought it was a great answer. Steve Inskeep, however, kept pushing with follow-up questions: Does it make any difference to you that you sit rather than stand during solos? Did polio limit your options, and that’s why you gravitated to playing the violin? So you’re telling me that people expected no less of you because you couldn’t walk?

I know that those of us who have disabilities are in the minority, and it’s human nature to be curious about how and why we do the things we do. But isn’t one or two questions enough? Before asking one of his many, many disability-related questions during the interview, Inskeep acknowledged that the particular one he was about to ask would be “surely an unanswerable question” and then went on to ask it anyway. “Would you have been the same musician that you are had you not been stricken with polio at a very young age?” Perlman’s answer to the surely unanswerable question was just another example of what a gracious and self-aware man he is:

“I think yes. You know, a lot of people like to think that polio was an inspiration in what I do. I think that music has to do with what kind of passion do you have. If I was destined to be a musician, it would have happened.”

So hmm. Maybe the reason I didn’t know that Itzhak Perlman had a disability has nothing to do with the fact that I can’t see him. It’s just that his disability is not the most important — or the most interesting — thing about him.

Social Emotional Wellness for Youth with Autism

by Beth Finke

Rethink is offering a webinar at 4 p.m. EST (3 p.m. CST) this Wednesday, December 9, 2015, called Social Emotional Wellness for Transition Age Youth with Autism Spectrum Disorders (ASD), and one of the experts online is none other than our own Maurice Snell.

Maurice was nonverbal as a child, and it wasn’t until he was diagnosed with autism at age 6 and attended Easter Seals Therapeutic Day School that he learned to communicate with others. From there he went to the high school where his mother taught, and he graduated 13th in his class with a 3.5 grade point average. In May 2006 Maurice received his bachelor’s degree from Saint Xavier University in Chicago.

Rethink is an online platform that places evidence-based treatment solutions in the hands of educators, clinicians, and parents working with individuals with developmental disabilities like Maurice. Their webinar will explore the challenges transition-age youth face when they leave the education system and identify ways we can do better to support these young adults.

Me (Beth Finke) and Maurice Snell

Maurice Snell is 32 years old now and employed as the Development Coordinator at Easter Seals Metropolitan Chicago’s Central Office. For many with autism, achievements like those are beyond reach. “Maurice…exhibits milder effects of the complex neurological disorder,” Rethink’s press release for the webinar says. “Despite that advantage, Maurice’s future was uncertain for most of his childhood.” More from Rethink’s press release:

Anne Roux, Drexel Institute researcher and author of numerous leading studies exploring the challenges and needs of young adults with autism, will discuss current research on mental health in young adults with ASD and the significance of social and emotional development. She will be joined by Dr. Kimberly Smalley, the autism clinical specialist/behavior analyst for the Redwood Coast Regional Center in California who will discuss best-practices in promoting social emotional wellness for this population and Maurice Snell, the development coordinator at Easter Seals, who will share his first-hand experience of transitioning into adulthood as a young man with ASD.

Registration for Social Emotional Wellness for Transition Age Youth with Autism Spectrum Disorders (ASD) is free and open to all. Register now — not only will you have the privilege of hearing Maurice Snell tell his story in his own words, but you’ll also learn about the impact of social emotional learning and ways to help more students make an effective transition after leaving school.

Comcast makes The Wiz Live accessible to all

by Beth Finke

Tonight, December 3, 2015, at 8 p.m. EST (7 p.m. CST), NBC is airing a live production of the musical The Wiz. Without being able to see the actors dancing around stage, musicals aren’t something I typically get very excited about.

But tonight’s presentation is hardly typical.

Easter Seals corporate sponsor Comcast has teamed up with NBC to make The Wiz Live! a special event we can all enjoy – even those of us who are blind or deaf, or have visual impairments or are hard of hearing.

Comcast and NBC are providing closed captions as well as a pilot of live video description (a narrative audio track that describes the show’s key visual elements) to bring Queen Latifah, Mary J Blige, Ne-yo, Common, David Alan Grier and the rest of the cast to life for everyone.

Promotional material says customers who are deaf or hard of hearing can find help and support videos on closed captioning settings with American Sign Language at xfinity.com, and video description will be available in every local NBC market where SAP (Second Audio Program) audio feeds are available – I cannot wait to hear how they put Ne-Yo’s step-touch and smooth glides into words!

Learn more about video description and closed captions on XFINITY at xfinity.com/accessibility.

Giving thanks for caregivers

by Col. David Sutherland

This blog is dedicated to my wife, the greatest caregiver I know.

The holidays are a time of celebration, of family, of homecomings. Every November and December, I watch my wife redouble her efforts to ensure we are comfortable. And that got me thinking about those who do this on an everyday basis.

Surveys report that 16 percent of post-9/11 veterans were seriously wounded defending their country. This means that many more service members are coming home with injuries that require care, returning to young spouses and parents who were not planning to become caregivers.

I learned much of this information last month at the Rosalynn Carter Institute’s National Summit & Training Institute, hosted for two days by former first lady Rosalynn Carter and attended by nearly 150 caregivers, including more than a dozen Elizabeth Dole Fellows.

More than just a conference, this event was a melding of purpose, direction and motivation, designed to inform and inspire influencers in the world of caregiving. That audience is immense. A 2014 Rand Corporation report funded by The Elizabeth Dole Foundation estimates that there are 5.5 million military and veteran caregivers in the United States.

Military caregivers are not who you might typically envision, as their demographics have shifted. According to RCI, more than half are either spouses or parents – not paid caregivers. Almost 40 percent are under age 30. And while more than 60 percent have jobs outside the home, another one-third gave up their job to provide care.

Sadly, more than half of caregivers report that they do not have a support network, which is where Operation Family Caregiver comes in. OFC provides free one-on-one training to military caregivers. It is tailored specifically to the struggles of each family, teaching participants the skills needed to best navigate their personal challenges. By the beginning of 2016, OFC will be serving military families in 12 locations – and it also assists caregivers anywhere in the world via Skype.

Those who end up caring for injured service members and veterans often are so busy taking care of their families that they don’t always take care of themselves. They are more likely to be depressed, exhausted, and have physical health problems. But if caregivers can just get a little help managing the stress that comes with caregiving, a lot of these problems go away. The evidence-based OFC program has shown that after participants complete OFC, caregivers are less depressed and reporter fewer health problems, which children are less anxious.

Know a caregiver? Connect them with one of the above programs or your local Easter Seals affiliate, who can direct them to Easter Seals caregiving resources that offer to restore some much-deserved balance in their lives.

Want a job training guide dogs?

by Beth Finke

Last Tuesday my Seeing Eye dog Whitney and I gave a guest lecture for an animal sciences class at the University of Illinois in Urbana-Champaign. Some of the undergraduates in the audieince came up to the stage afterwards, and I took Whitney’s harness off. I’d mentioned during my talk that when my dog doesn’t have her harness on, you’re allowed to pet her. I didn’t mention that Whitney gives kisses when her harness is off, too.

“I love dogs!” one of the students gushed, thanking me for taking time in my talk to explain what it takes to become a Seeing Eye instructor. “Now I’m thinking maybe I could train guide dogs for a living.” And you know what? Maybe she could!

I trained with my dog Whitney at the Seeing Eye school in Morristown, N.J., and staff instructors there are full-time employees who hold college degrees from all different fields of study. After graduating from college, they have to complete three years of specialized on-the-job training at the Seeing Eye school before becoming a full-fledged instructor. Some of the instructors I’ve met there majored in teaching, others in business, and some in fields like animal science.

Some were in the military and worked with dogs before, and a lot of them started out with jobs as kennel assistants at The Seeing Eye before beginning their apprenticeships to become trainers. The Seeing Eye website says they look for people who “relate well to dogs and people and are physically fit, since their jobs are physically demanding and involve working outdoors in all weather.”

When people ask me about training guide dogs, I always remind them that they won’t just be working with dogs. They’ll be working with people, too. We blind folks are all different ages, and we have all sorts of different backgrounds and experiences behind us. Some of us are newly blind and still adjusting, others have been blind our entire lives. Although some of us might be easy to work with, a lot of us can be brats. We test our teacher’s patience. A puppy-raiser blog says it well :

Guide Dog trainers must work with a variety of dogs within a given size range. A great deal of walking and upper body strength is required to mold hyper young dogs into responsible workers.

In the beginning, when working with dogs alone, this may not seem bad, but soon the apprentice must team dog training with people training. You can’t leash correct your blind student, or give him/her a dirty look and expect the undesired behavior or wrong actions to stop. You must verbally communicate while physically managing to keep up with the dog. Coming out of yourself to work with both dogs and people is a special skill and not one to be taken lightly.

Schools receive literally hundreds of applications a year from people who want to train guide dogs, so even opportunities to become an apprentice are rare. Most guide dog schools do require instructors to do an apprenticeship, and some apprenticeships last as long as four years. Salaries can start in the $40,000 range for those in apprentice training programs, and salaries for full-time instructors can start as high as $50,000. If that student I talked to Tuesday really does love dogs and wants to do meaningful work, I hope she applies!

If you have a disability or are a veteran and would like help finding a job, Easter Seals has employment resources.

Random acts of kindness for kids with disabilities like Elena

by Bernhard Walke

Elena’s snazzy new haircut

A photo went around the Internet last week of a child with autism who was lying on the floor while the barber lay next to him in order to give the child his first haircut. The image of the barber and child on the floor is touching, but I was surprised at how much attention it received. The barber getting on the floor to cut that child’s hair is not an isolated incident — many, many people demonstrate that kind of love and compassion to children with disabilities. The image struck me because it reminds me of the accommodations our local hair salon makes for our daughter Elena.

When my wife Rosa and I arrive with Elena for an appointment at Lemonmade Style & Snips, Members of the staff greet Elena by name without any prompt from us, and they immediately swing the door wide open so we can bring her wheelchair in. In short, they treat Elena with the dignity and grace she deserves.

Elena cannot yet sit independently, so she sits on her mom’s lap during haircuts. Elena’s neck muscles give out from time to time, so I’m there to steady her head while the hairstylist makes delicate cuts to create a finely sculpted bobbed haircut with bangs. We’ve chosen this haircut because it keeps the hair out of her eyes, food out of her hair, and allows her to be a cute little girl — something we constantly think about.

And I have to say, my daughter definitely is a very cute little girl.

With Thanksgiving approaching, experiences such as this make me truly thankful for the diversity and inclusion in my community. I fear I often take it for granted. We live in Oak Park, a suburb just west of Chicago, that is not only proud to be the birthplace of Ernest Hemingway as well as Frank Lloyd Wright’s career, but also a bastion of progressive politics and diversity.

The representation of various cultures is almost comical: on our short block, there are Hispanic, Caucasian, African-American, African, Asian, French, Spanish, same-sex, Muslim, Catholic, agnostic, atheist families, you name it. Elena herself is Mexican, Peruvian, Irish and German. She understands both English and Spanish, she speaks with a computer, and she also happens to have a disability. I often feel as if everyone is represented on just our block.

Every year when the snow finally melts in Spring and all the kids on our block pour onto the street to play on the sidewalk, they always include Elena. For this I am thankful — they treat her like just another kid on the block. And on this past Halloween, when a 2-year-old girl across the street delivered treat bags to all her friends on the block, Elena’s bag had items that she could eat – our daughter is not very good (actually terrible) with hard candy, taffy, or gum.

When Elena attends story time on Saturday mornings at the Oak Park Public Library, no one bats an eye as she wheels in using her chair. Similar to the hair salon, moments like this give Elena’s life a little more normalcy.

On our last visit to the hair salon, the manager made some casual conversation asking what we were up to for the weekend. We told him we’d been in the fashion show at Easter Seals DuPage and the Fox Valley Region the weekend before and had decided to lay low for the upcoming one. He responded right to Elena: “Honey, every day is a runway,” he told her. “You gotta work it!” Rosa and I bent over in laughter and thanked him for the chuckle.

Between speech therapy, occupational therapy, and physical therapy every week, Elena “works it” indeed. This Thanksgiving, I’m thankful that Elena is part of the diversity in our community and is treated with the care and dignity that every child deserves, whether it be in school, on our block, or simply at the hair salon.

Share what you are thankful for on Easter Seals Twitter or Facebook pages.

BRINGING HELP AND HOPE TO THOSE WHO CARE FOR U.S. VETERANS

by Randall Rutta, President and CEO

My post today, in reflection of Veterans Day as well as National Family Caregivers Month, is co-authored with Easter Seals friend and partner Senator Elizabeth Dole.

As another Veterans Day passes, and the nation honors the brave men and women who have worn the uniform, we also pay special tribute to the many who returned home with life-changing physical or mental wounds, injuries and illnesses.

Yet, as we recognize these heroes, it is imperative to remember that behind every wounded warrior stands a family that also has been changed forever. These families — spouses, parents, siblings and children – become caregivers, shouldering the support their veterans will need, in ways little and large, not just on November 11, but every day, and sometimes for many years.

Though the caregivers often shy away from the spotlight, they are all around us. According to a recent study by the RAND Corporation, some 5.5 million people are caregivers to a current or former service member. An estimated 19.6 percent of these caregivers are supporting a veteran with a disability who served after the September 11, 2001, terrorist attacks, when the tempo of deployments increased dramatically compared to previous years.

The choice to care for a wounded warrior at home is a loving and compassionate one. It often comes at great personal expense to the caregivers while relieving our nation of a tremendous cost. America’s caregivers provide just under $14 billion in uncompensated care annually.

As invaluable as these caregivers are, many carry their responsibility largely alone. There is no one-stop shopping for the training caregivers need to handle the array of challenges they may encounter. Whether it is the daily care of a person with mobility impairment, the complexities of a traumatic brain injury, or the needs of a veteran with post-traumatic stress, caregivers feel as if they must figure it out for themselves.

Caregivers must navigate the byzantine healthcare and veterans benefits system. They must provide in-home therapeutic and nursing services and locate appropriate medical devices. As time goes by, they may have to address the long-term challenges of an injury, such as depression.

Military caregivers tend to experience more family strain, workplace problems and health issues themselves than non-caregivers. Post-9/11 caregivers, who are younger, less connected to a support network, in newer marriages and more likely to fall prey to depressive disorders, fare worst of all.

This is a silent crisis, one in which those most in need of help are too overloaded, stressed or reluctant to ask for it. We want to give these military caregivers the voice and the support they need.

The Elizabeth Dole Foundation was created to bring attention to the critical issues facing military and veteran caregivers. Nearly 100 active caregivers have been named Dole Caregiver Fellows, providing them a voice in the media, on Capitol Hill, and with senior leaders in every sector. The Foundation also acts as a catalyst for organizations that can provide caregivers with support, training and resources, and in 2014 the Foundation launched a National Coalition of such organizations that has grown to 308 members.

Partnering closely with the Foundation, Easter Seals, long a champion for those with disabilities and the people who care for them, is providing key training and resources for military caregivers. Through a contract with the Department of Veterans Affairs, Easter Seals Dixon Center offers an array of training to caregivers, including home safety, veteran personal care, management of difficult veteran behaviors and depression, and caregiver self-care. Since early 2011, more than 30,000 caregivers have received this training.

In conjunction with the Foundation and other leading caregiving and military service organizations, Easter Seals has launched a series of free, practical webinars on topics important to caregivers, such as maintaining employment while caregiving. More than 2,500 caregivers have already benefited from this new program. Easter Seals affiliates around the country are also offering other services including in-home respite care, group therapy and models for problem-solving for military caregiver families.

Together, Easter Seals and the Elizabeth Dole Foundation are leading a national movement to bring about change, but much more is needed to reach caregivers who need assistance. We need to increase high-quality training, strengthen proven caregiving resources and ensure that our military families have access to as much assistance as they need.

Abraham Lincoln might have been talking about today’s service members and military caregivers when he said, “Honor to the soldier, and sailor everywhere, who bravely bears his country’s cause. Honor also to the citizen who cares for his brother, and serves, as he best can, the same cause.”

If we are to honor our wounded warriors, we need to come together at every level—governmental and nonprofit leaders, employers, educators and healthcare and wellness experts—to produce lasting change for our military caregivers. Please join us in honoring and supporting these unsung heroes.

Randy Rutta is president and CEO of Easter Seals. The Honorable Elizabeth Dole, former United States Senator (NC), is founder and CEO of Caring for Military Families: The Elizabeth Dole Foundation.