The Abilities Buzz: May 2012
Christmas Comes Early for a Staten Island Family
By Damon Didler, Ride-Away
No one on the Ride-Away team will ever forget the look on little John Dilgen’s face when, at the 2012 Abilities Expo New York Metro, he was presented with a wheelchair accessible van that will expand his horizons. Though the skin disorder that has plagued this rambunctious 11-year-old since birth has given him a maturity beyond his years, even he could only glimpse the possibilities that were opening up for him. His parents, overcome with emotion, were the ones who truly understood what this amazing gift would mean for their son.
Ride-Away, one of America's leading sellers of wheelchair accessible vehicles, has been a participant in the Abilities Expos in the eastern United States for a number of years. The company was happy to be invited back to this year's Expo, which proved to be the best attended event to date, with a line more than 45 minutes long on opening day. Ride-Away was represented in their own booth as well as the Chrysler Mobility booth with a Fiat 500 outfitted with driving controls installed by our certified technicians, and BraunTaxi, the new transportation department at leading mobility conversion company, BraunAbility. But even with all that excitement, the most memorable experience of the event was our participation in the donation of a wheelchair accessible vehicle with automatic ramp for John.
John was born with Epidermolysis Bullos (EB), a disorder that affects one out of 50,000 people and causes the skin and organs to blister and tear. Because of this disease, people like John have a difficult time walking, sleeping, getting dressed and doing many of the activities others take for granted. Often inundated with blisters on his feet and occasionally his eyes, John cannot walk and has a hard time seeing. This disorder is difficult for his family who spends an hour each day dressing John and covering his little body in bandages.
His mother, Faye, said that having a wheelchair accessible vehicle means, “He will have a sense of freedom for the first time. He can go where he needs to without being picked up.” According to her, John does not let his disease slow him down. He is active in the Cub Scouts and never complains about his sores.
It was John’s Cub Scout pack leader that got the ball rolling after seeing Faye struggle to lift his electric wheelchair into her car. The pack organized a Walk for Wheels event where they raised $5000, enough for a down payment on a wheelchair accessible vehicle. The leader then reached out on Twitter for additional help and found it from Man vs. Food host Adam Richman (@adamrichman). Richman, in turn, connected them with Ride-Away (@rideawayvans), who assumed the balance of the cost of the van.
Hal Compton, Jr., CEO of HASCO Medical, Ride-Away's parent company stated, "Like HASCO, Ride-Away's goal is to provide quality products that can improve the lives of others; the Company's commitment to the community is second to none. Thanks to the help of the Cub Scouts and Adam Richman, we were proud to provide the Dilgen family with a wheelchair accessible van."
It was Ride-Away's honor to equip John and his family with a wheelchair accessible vehicle they can use to transport him to school and his extra-curricular activities. We chose to present the Dilgen family with their van at Abilities Expo New York Metro so participants would have a chance to meet this extraordinary family. On hand were
Ride-Away Vice President Jaime Kuczewski and Ride-Away President Mark Lore. Mary Murphy, Mobility Consultant at Ride-Away said, "The family was crying and teary eyed. Mark and Jaime did a great job with the kids. Everyone was super happy."
“We were thrilled for the opportunity to play a small part in this very special event,” said David Korse, President and CEO of Abilities Expo. “We feel fortunate to be associated with such impressive individuals as John and his family, and such profoundly generous companies as Ride-Away. Abilities Expo is a celebration of what you can do and, thanks to his new accessible van, John will be able to do so much more!”
For more information about Ride-Away, visit www.ride-away.com.
Product Spotlight: Ability Plus Therapy
Ability Plus Therapy will be exhibiting at Abilities Expo Chicago on June 29 – July 1, 2012.
Every parent wants to see their child reach their full potential. Laura Joslin, mother of two boys with Cerebral Palsy, was no different. In 2004, she founded Ability Plus Therapy, a pediatric rehabilitation center in Melbourne, Florida whose mission is to provide the best quality care through the use of innovative equipment, skilled therapists and a friendly, caring environment. Roberta Neves joined in 2006 as clinical director and co-owner and lent her extensive background and expertise in pediatric physical therapy to the cause of helping children with a wide range of disabilities.
Ability Plus Therapy subscribes to and is highly specialized in the intensive suit therapy model, as well as traditional physical, occupational and speech therapies. Parents whose children have plateaued in other treatments have turned to Ability Plus Therapy, even traveling great distances, to experience tremendous success.
“My son has a genetic anomaly that has caused him to be developmentally delayed. He was enrolled in traditional therapy programs but the progress was slow,” recalled one mom. “I cannot say enough wonderful things about intensive therapy. The benefits far outweigh the cost, time and commitment involved. We saw immediate changes in his strength, his interactions with others, and his own curiosity to explore the world increased…If we had never found Ability Plus Therapy, I know my child would not be where he is today.”
The intensive therapy program is tailored to address each child’s specific needs. Offered in 3-4 hour sessions, 5 days per week for 3-4 weeks, the program focuses on repetition of movement and developmental skills to train and retrain the brain. The concentrated therapy helps to make these skills automatic and more normalized and children are able to make substantial progress in just a few weeks.
Though relatively new to the United States, the intensive suit therapy is well-established in Europe. The initial research and development actually took place within the Russian space program before it was ultimately adapted into the TheraSuit by Polish therapists for the treatment of cerebral palsy and other neurological disorders in children.
The TheraSuit, which is expertly utilized by the therapists at Ability Plus Therapy, can accelerate a child’s progress in sensory processing and motor skills through strength, flexibility, endurance, balance, coordination, vestibular and enhanced functional skill training. It consists of a vest, shorts, knee pads, shoe attachments and a hat, which are fully connected by elastic bungies to realign and load the body. Functional activities such as rolling, sitting, kneeling, standing and walking are performed with the suit to facilitate mastery of skills.
The TheraSuit has helped children with a variety of disabilities including but not limited to: autism spectrum disorder, sensory-processing disorder, cerebral palsy, ataxia and athetosis, hypertonia and hypotonia, post-stroke (CVA), traumatic brain injury, Down syndrome and other genetic disorders, and developmental delay.
One family traveled all the way from Virginia so that their son—diagnosed with autism and hypotonia—could benefit from intensive suit therapy. According to his mother, his disabilities
negatively affect his muscle strength, balance, ability to walk without tripping or falling, ability to perform everyday tasks and his overall independence. “Jordan has been in therapy for over 5 years participating in numerous different kinds of treatment, but I feel one of the most beneficial for him was the TheraSuit here at Ability Plus Therapy,” she said. “He learned to ride a bike, his tone and fine motor skills have improved, and his confidence soared. I also feel the staff are very kind and truly care about their patients.”
The active participation of Laura and Roberta in daily operations ensures the highest quality of care for children and their families at every stage of the process. On day one, licensed therapists make a thorough evaluation of the child, establish goals and develop a detailed therapy plan. The equipment is selected based on what will best help the child flourish and could include the Universal Exercise Unit, parallel bars, stairs, ceiling track system, treadmill and Freedom Concepts tricycle. For maximum success, parent involvement is strongly encouraged and each family is trained on a home exercise program on the last day of intensive therapy.
“[My daughter] is a different child because of your therapists and your facility,” said another happy mother. “You have opened up the world to her and I want you both to know what a wonderful job you are doing!”
For more on Ability Plus Therapy, visit www.abilityplustherapy.com.
Push Girls Premieres June 4 on Sundance Channel
Courtesy of Sundance Channel
Get a Sneak Peek and Meet the Push Girls on Saturday, June 30 at 3:45 pm at Abilities Expo Chicago.
In the same way Murderball, the winner of the 2005 Audience Award for Best Documentary at the Sundance Film Festival, took the lid off the competitive world of wheelchair rugby, Sundance Channel is bringing an unfettered look at what it means to be sexy, ambitious and living with paralysis in Hollywood with Push Girls, a new original docu-series from producer Gay Rosenthal (Ruby, Little People, Big World).
And this groundbreaking series is coming to a TV near you on Monday, June 4 at 10 pm on the Sundance Channel.
Taking a matter-of-fact attitude towards their disabilities, Push Girls offers a candid view of these women as they pursue their own claims to happiness at different stages of their lives. Angela is a down-to-earth, stunningly gorgeous model who has recently become separated from her husband. Auti, a dancer, rapper, actress and all-around powerhouse, is crossing her fingers that, at age 42, she can try for a baby with her husband. Reflective and pragmatic Mia is taking stock of her relationship with her able-bodied boyfriend; a onetime competitive swimmer, she is about to attempt to swim for the first time since high school. Flirty, wisecracking Tiphany is doing some deep soul-searching about her sexuality, settling down and finding her calling in life. Along with the four core cast members, the series also follows the story of Chelsie, a 20-year old student who was involved in a car accident that left her paralyzed during her senior year of high school. After meeting the girls through Auti’s ‘Colours ‘n’ Motion’ dance group, Chelsie finds herself looking to Angela, Auti, Mia and Tiphany to help guide her through the adjustments of her new reality.
Gay Rosenthal commented, "Watching the Push Girls tackling life with spirit and confidence is not only inspiring but compelling. The show challenges perceptions about life in a wheelchair, giving the audience an honest, no-nonsense look into their world. It's real, it's outspoken, and it's from the heart. I am delighted to share their story on a network that prides itself on authentic, bold and respectful storytelling.”
The road to Push Girls began approximately two years ago, when a business colleague introduced producer Gay Rosenthal to Angela Rockwood. A quadriplegic since a 2001 auto accident, Angela is a prominent voice in the community of people with disabilities and works closely with a number of advocacy and outreach groups, including the Christopher and Dana Reeve Foundation. She models, acts and holds regular acting workshops at her Los Angeles home. “I’m the little engine that can and will and won’t stop,” she laughs.
Remembers Rosenthal, “As a producer, I’m always looking for compelling personalities and stories that haven’t been told before, and of course I thought Angela was fantastic. As we spent time together and got to know each other, Angela started telling me these incredible stories about these three friends of hers, who were also in wheelchairs. Naturally, I wanted to meet them.”
Angela, Auti, Mia and Tiphany have known each other for anywhere from three to ten years. Their longstanding friendships are rooted in shared enthusiasms and attitudes. Says Tiphany, “We completely understand one another; we basically operate on the same frequency. We have an amazing time when we’re together, whether it’s all four of us as a group or just two of us. We totally would be hanging out if we weren’t in chairs.”
During filming, a small crew followed the cast approximately four days a week. When there is a special event happening in one of the characters’ lives—as in the case of Tiphany’s trip back to Northern California for her 10 year high school reunion and to visit the sight of her accident—that event forms the crux of the week’s production.
The four women welcomed the chance to share the plain facts about life in a chair. Says Mia, “I used to have this boyfriend. He told me people would ask him about me and say: Well, isn’t it sad that she can’t do things? And he’d be like, ‘She can do anything she wants to do. Anything. That includes hiking—she can get one of those special chairs.’ I’ve always thought it would be great to get that across on a mass media level. But not in a preachy way. A show about us living our lives lets people see what it’s like.”
While many aspects of the cast’s lives are typical modern social issues, others are inescapably specific to their individual experience. That is why Angela felt strongly that the series should document her morning routine. “Here’s the thing: this is a show about girls in chairs,” she states. “Yes, we’re over-achievers and we’re all about getting into life and doing things we’re passionate about. But we’ve got to come back to the reality of it all: we are different. It takes us a while to get out of bed. I’m a quadriplegic, so I need more assistance than the other girls. I need someone to come in and catheterize me. I need someone to bathe me. I need someone to lotion me up. I need someone to put my clothes on. I do my own makeup, but I need someone to help me brush my teeth and wash my face. I need someone to transfer me and put me into my chair. But from the moment that you pick me up and put me in my chair, I’m good to go: I can wheel around, I’m independent. This is my reality, and it was important that the show capture that. I trusted the team to do it right. And they did.”
Auti notes that strangers often approach them with pity—well-meaning, perhaps, but wholly unnecessary. “We literally have had people come up to us and say, ‘Oh, you poor thing. You’re so beautiful. It’s too bad.’ It’s not really their fault—a lot of what you see in the media doesn’t paint a positive portrait of what it’s like to be in a wheelchair. Still, you want to say, ‘What’s too bad? That you don’t understand that we have an amazing life? Let me share some things with you so I can change your perception.’”
While facing modern social issues and everyday life challenges, Angela, Auti, Mia and Tiphany push themselves—and each other—to face life head-on and define it on their own terms. Push Girls is an uncensored glimpse into their surprising world—one that will shatter all expectations about what life in a wheelchair can be.
For more on Push Girls, visit www.sundancechannel.com/push-girls. Don’t miss your chance to meet some of the Push Girls in person at Abilities Expo Chicago on June 30, 3:45 – 4:45 pm.
Abilities Expo Goes International
By Phua Thong Chee, Abilities Expo Singapore
On November 2-4, 2012, Abilities Expo makes its debut in Singapore and the Southeast Asian region. This marks the start of an exciting new milestone as this premier event for the community of people with disabilities and their caregivers is staged outside of the USA for the very first time.
This latest initiative—Abilities Expo Singapore—is a collaboration between Abilities Expo (USA) and Image Engine (Singapore). It will benefit from the extensive experience, knowledge and community outreach of the USA events as well as the support from a dedicated local team with expertise in galvanizing the relevant public, private sectors and disability communities.
“I think this is a wonderful development,” said David Korse, President and Chief Executive Officer of Abilities Expo (USA). “I am happy that we can play a part in creating a platform that can lead to many opportunities for sharing and learning for the disability communities, practitioners and even companies involved in helping to improve the lives of people with disabilities from the two regions.”
Speaking on how the collaboration came about, Ian Monteiro, Executive Director of Image Engine recalled, “I have worked with David for many years and we are excited to bring Abilities Expo to Singapore and the region. This is an excellent opportunity to showcase products and services previously not seen in the region, and to introduce an international level of expertise and experience in serving the community of people with disabilities. This is an immensely valuable contribution to capacity building and developing social infrastructure for Singapore as we work together for a more inclusive society.”
The timing for launching Abilities Expo Singapore couldn’t be better. Singapore just announced the Enabling Masterplan 2012-2016 to address the needs of persons with disabilities as well as the needs of their caregivers. The vision is for Singapore to be an inclusive society where persons with disabilities are empowered and recognized, and given full opportunity to become integral and contributing members of society.
The event has already received strong support from key local organizations. The Centre for Enabled Living—a national agency that coordinates social care services for persons needing care—has agreed to collaborate on the event. This will provide substantial outreach and participation from the local disability communities and voluntary welfare organizations. Also in the pipeline is an assistive technology showcase area that will be supported by key Government agencies.
If you are keen to participate or learn more about Abilities Expo Singapore, visit http://www.abilitiesexpo.com.sg or contact Ian Monteiro (firstname.lastname@example.org) or Wendy Tan (email@example.com). If your organization is based in the United States, contact David Korse at (310) 450-8831 x130.
Adaptive Biking: Creating a Cycle of Mobility
By Jaydene Reardon, Freedom Concepts, Inc.
Freedom Concepts will present an Adaptive Bike Demo at Abilities Expo Chicago on Saturday, June 30 at 1:45 pm.
There is nothing more thrilling than the childhood memory of riding our first bicycle. The breeze in our faces, the laughter in the air as we ride with our friends and the ultimate feeling of independence was exhilarating. Although some individuals may be faced with physical disabilities, riding an adaptive bicycle can still capture these feelings.
Adaptive bicycles are ideal for individuals with simple balance problems to those more involved cases of Cerebral Palsy, Angelman Syndrome, Spina Bifida, Down Syndrome, Muscular Dystrophy, Autism and Dwarfism. Adaptive bicycles typically feature a three wheel set up, adjustable handlebars for ease of transfer, discreet rear-steer assistance handle, adjustable seat with high or low backs for more support, direct drive and low gear ratios, Velcro straps to keep feet on the pedals as well as safety belts to make the rider feel safe.
There are several benefits of riding bicycles including:
1. Reciprocal Motion – cycling is similar to walking, facilitating the hip, knee and ankle to extend.
2. Physical Activity – increases gross motor control while strengthening and maintaining range of motion throughout.
3. Exercise – aerobic capacity and endurance are increased.
4. Health – ventilation and respiration are improved.
5. Social Skills – everyone needs time to play! Adaptive bicycles boost self-esteem and allow the individual to experience fun and social recreation with their peers.
Working with hundreds of families all over North America, Freedom Concepts hears wonderful feedback directly from parents who have watched their child pedal for the first time. The McCurdy family from Peachtree City, GA has a daughter, Hayden, who was diagnosed with Angelman Syndrome at the age of one. Along with the diagnosis, they were told that their child might not walk in her lifetime. After receiving an adaptive demo bike over the summer at the age of 3, she began taking her first steps just a few months later. Her confidence began to explode and now Hayden owns her very own bike and rides with her sister for almost a mile. Not only has it helped her self esteem, but it also gives the siblings something fun to enjoy together.
When considering the purchase of an adaptive bicycle, it is important for families to choose a bike company that provides a product that is built for the individual’s needs. For more involved individuals, don’t shy away from considering a bicycle! Adaptive bikes are a great way to break up muscle tone and increase flexibility. On the bike, kids forget that they can be viewed as therapeutic tools to reach therapy goals. All they’re thinking about is taking off on their bicycle and forgetting about any differences they may have with their friends. It’s never too late to feel the freedom of a good bike ride!
Jaydene Reardon is an Outreach Specialist with Freedom Concepts, Inc. Working with medical professionals, therapists, and families, Freedom Concepts custom-builds adaptive bicycles to accommodate the needs of individuals with disabilities. All bikes are customized and adjusted to the exact specifications and unique requirements of the rider, ensuring that each bike is a perfect fit. For more info, visit www.freedomconcepts.com.
Allie's Kids Brings Out the Equestrian Within
By Allison Ligorano Sipple, Allie’s Kids
When I started Allie’s Kids almost two years ago, my intentions were clear. I wanted to have a fully integrated horseback riding program in which individuals with special needs and their typical siblings would be able to experience the full world of horses in a safe and non-judgmental environment. Basically, I wanted to teach people good horsemanship which includes everything from riding skills to barn maintenance (a fancy term for picking up poop and feeding the animals) to grooming and caring for the animals. I guess I had pictured a sort of equine utopia where everyone, regardless of any preconceived limitations, would be working together towards the common goal of becoming equestrians. So far, I think it may be working.
The first thing people always say to me when they hear I run a riding program that includes individuals with special needs is, “Oh, so you do therapeutic riding.” My response is always no. While I could easily make the argument that all horseback riding is therapeutic in and of itself, I know that this is not what they are really saying to me. As soon as they hear the words “special needs” and “horseback riding” in the same sentence, people assume that we either do hippotherapy (physical, occupational or speech therapy utilizing equine movement) or belong to a larger handicapped riding association. Neither is true for Allie’s Kids. We have no licensed therapists of any kind on staff, nor do we intend to in the future. We are also not the traditional handicapped riding facility.
When a new student comes to Fancy Me Dandy Farm to begin riding lessons with Allie’s Kids, the first thing that I have them do is fill out a waiver and a registration form. The waiver makes my lawyer father and lawyer husband happy and the registration form gives me a little background information, such as medical conditions, physical limitations and any other challenges the student may have. I generally read the form over once, and then file it away for future use. I will very rarely look at the form again. I have found that all of my students perform and advance with the most progress when I do not have any preconceived expectations about their limitations or potential for advancement.
For example, last May I had a new student start with my program. She was a ten year-old ball of fire named Courtney. Her mom had told me that Courtney had been in a therapeutic riding program for about two years, but that they were not completely satisfied with the program and were looking for something new. From the first moment I put Courtney on our program pony, Sammy, I was impressed by both her confidence in taking control of such a large animal, but also by how quickly she picked up on new skills. To be safe, I start ALL of my students riding on a leadline (a kind of leash for horses). Then depending on how confident the student is and how their skills progress, I gradually start giving them time off the line until they are completely independent. By the third week of lessons, Courtney was walking Sammy around the ring by herself with me standing in the middle giving directions.
It is always in the back of my mind that people who do not ride horses themselves may not fully appreciate just how difficult each new skill is to learn. I never want anyone to think I am holding their child back or advancing too slowly. So as Courtney was making her pony halt and change directions completely independently, I turned to her mom and pointed out how hard Courtney was working and promised she would be able to advance to a new skill sometime in the near future. Courtney’s mom gave me a funny look, then informed me that in the two years that she had been riding with the old therapeutic riding program, Courtney always had a leader and two side-walkers with her and was never allowed off the leadline. I was floored. Here was a student with seemingly unlimited potential that had, instead, been made to participate in a glorified carnival pony ride.
Later that year, in October, Courtney and another of my students participated in the Special Olympics horse show. When it came time for the obstacle course section, I was a nervous wreck. As the coach, I was not allowed in the ring with my students and had to watch from the outside of the ring while my volunteers walked with Courtney through her course. A she approached a group of poles on the ground, I held my breath. We had been practicing jump position at home and I had reminded Courtney before she went in the ring that she should use it when going over the poles, but I wasn’t sure she would remember in all the excitement. She did. Courtney went into perfect jump position right before the poles and held it to the end. She was the only student in the class to do so, earning her a first place ribbon. We will be going to the Special Olympic again this year and I am hoping for a repeat performance. I just hope I am up to the challenge of keeping up with Courtney.
Here at Allie’s Kids we consider ourselves to be a “typical” horseback riding facility that happens to have a number of individuals with special needs who participate. In practice, this means that every person that sets foot on Fancy Me Dandy Farm is treated the same as every other person. All of my students have private lessons so each lesson is individualized to a student’s particular needs and abilities, but the goals are all the same. When a student masters a certain set of skills, they then advance to the next set. Each student is expected put their best effort in and to work to the edge of their abilities so that they may continue progressing. As the head trainer, it is my job to make sure that every student is being given the information in way that they can both understand and are able to accomplish. If a student is not progressing, I assume that it is because I am not teaching the skill correctly, not that the student is not able to learn it.
After hearing about my program, someone once said to me, “You don’t let the autistic kids jump, do you?” My answer, no one gets to jump before they can canter on their own. In other words, when (notice I say when and not if) my students with an autism diagnosis can canter independently (off the lead line), they can start jumping. The same standard applies to my “typical” students. Allie’s Kids have set their expectations high, and I believe all of our students will surpass them.
To learn more about Allie’s Kids, visit www.allieskids.org.