Children with autism and people with Down syndrome were among the competitors in Sunday’s Kiwanis Equestrian Competition for Special Athletes. Most began riding horses in therapeutic riding programs. Read the LA Times story about the daylong event for riders and their families:
Cathy Sulsona lives in a world where everyone looks down on her in her electric wheelchair. Sometimes passersby look right past her, or have trouble decoding her slurred voice. They see only the cerebral palsy.
But when she climbs on her quarter horse, she rises above them.
“I feel normal,” Sulsona, 43, of Riverside said as she sat next to her horse at Hansen Dam equestrian center. “I’m not looked down on.”
Toronto is crawling with the movie stars you’d expect to see here, from Kevin Spacey to Colin Firth to Marion Cotillard. But there’s always room in the festival for a genuinely new face, and nobody at TIFF 2010 exhibits that quite as dramatically as Evan Sneider.
Sneider, a 31-year-old actor with Down syndrome, is the star of “Girlfriend,” the sweet, beguiling and at times wrenching feature debut from writer-director Justin Lerner about a small-town young man with Down who romantically pursues a single mom.
First-year M.D. students from the UCF College of Medicine received a heart-felt lesson this week on the challenges and hopeful determination of people living with Down Syndrome. As part of their HB1 module, the doctors-in-training spoke with families from the Down Syndrome Association of Central Florida, including the mother of a 7-month-old baby with the condition and a 22-year-old man who wants to be a worldwide advocate for people with disabilities.
Dr. Jane Gibson, professor of pathology, first invited patients with Down Syndrome and their families to the College of Medicine last year to help medical students understand the lives of people with the condition. The testimonies were so inspirational that Dr. Gibson organized another visit this year.
Amy Van Bergen, executive director of the association, talked to the students about the prejudices and myths associated with Down Syndrome and how improved medical care has increased the life expectancy of patients with the condition from only 9 years in 1924 to over 58 years today. Ms. Van Bergen’s son, Wils, has Down Syndrome but has defied many of society’s misperceptions by graduating from high school, attending college classes and living in an apartment at the University of North Florida. She described the devastation of parents who dream for nine months of having a “typical” baby and then learn that their child has been diagnosed with Down Syndrome. “Our role, at the Down Syndrome Association,” she said, “is to help give people the dream back.”
La Taasha Byrd, whose 7-month-old daughter has Down Syndrome, told the students that as doctors they must combine their scientific knowledge with a caring heart. “If you have no empathy,” she said, “your degree is worth nothing.”
Dr. Rolanda Maxim encourages parents and doctors to take a different perspective in helping children with developmental challenges improve their social, gross motor and communications skills. And she thinks Special Olympics is a program that doctors and parents can agree on.
That’s exactly why Dr. Maxim, medical director of the Center for Autism Spectrum Disorders at the Knights of Columbus Developmental Center at SSM Cardinal Glennon Children’s Medical Center in St. Louis, wrote a prescription for Special Olympics Missouri for eight-year-old Morgan Davidson.
“We appreciate Special Olympics because, instead of addressing problems with medications, we can use natural ways of improving someone’s life,” Dr. Maxim explains.
Flamingos will soon be flocking at locations around town as the Plymouth Networking Group and Sunrise Rotary Club of Plymouth team up to raise money to assist families who cannot afford to participate in a new search and rescue program for those at risk of wandering.
Nothing’s more frightening than the thought of a loved one with Alzheimer’s disease, autism or other condition wandering away, according to local nurse Connie Hinds, a member of both the networking and Rotary clubs.
The groups plan to flock a few select locations to help increase public awareness of the new SafetyNet tracking program soon to be offered locally. Hinds said both groups share an interest in protecting local seniors. They suspect that bright pink flamingos on laws will help bring attention to the search and rescue program.
“We want to increase public awareness of the program and have fun, too,” she said. “Flamingos can’t help but get a lot of attention.”
SafetyNet outfits seniors with a personal locator unit worn on the wrist or ankle. If a loved one goes missing, Hinds said, local law enforcement and public safety agencies trained and certified on search and rescue procedures will use SafetyNet search and rescue receivers to track the radio frequency from the locator.
Toys “R”Us, Inc. has released the 2010 edition of the Toys”R”Us Toy Guide for Differently-Abled Kids, an easy-to-use toy selection resource that can help parents of children with special needs select toys that develop skills through the power of play.
This year, actress, author, philanthropist and mother of a son with autism, Holly Robinson Peete appears on the cover, along with Tommy Austing, a 6-year-old boy from Los Angeles. Released annually, the guide is available in Toys”R”Us and Babies”R”Us stores nationwide and online, in English and Spanish, at Toysrus.com/DifferentlyAbled. The largest edition ever, this year’s guide has increased to 60 pages and features an expanded assortment of online offerings that are available through the company’s website.
For nearly 20 years the guide has assisted parents, family, friends and caregivers by providing qualified toy recommendations to help aid in the skill development of children who have physical, cognitive or developmental disabilities. To help parents select the perfect playthings for their children, all toys featured in the guide are associated with icons that show parents which skills can be developed during playtime.
The tidy apartment near Constitution Avenue and Union Boulevard has it all: washer and dryer, stove, microwave and refrigerator, a TV and sitting area, a furnished bedroom and a handicapped-accessible bathroom.
All that’s missing are the 24 teens and young adults expected to occupy it — not as tenants, but as students.The apartment is one of several real-life teaching rooms at the Foundation for Successful Living, a new center that aims to give autistic and developmentally disabled people ages 14 to 21 the social and vocational tools they’ll need to transition from classrooms into their communities.
At the apartment, the students will learn to do laundry, make a bed, clean, plan meals, cook and keep a budget. In the room with the ersatz bank and post office, they’ll get lessons in handling money, keeping a checkbook and sending mail. The grocery store is where they’ll shop for canned goods and other ingredients for the meals they’ll prepare in the apartment, and the bakery is the place where they’ll practice ordering from a menu, paying for their food, counting change and beefing up their social skills.
Ben De Young has been going to watch, and help direct, the Friesland Community Band since he could walk. The 26-year-old with Down syndrome “directs” each show behind director Rose Kramer. Ben also has a Band-Aid on his baton, because he also wants to be an EMT some day.
Dr. Roger Ladda, a pediatrician and clinical geneticist at Penn State Milton S. Hershey Medical Center, said many families who have a child with Down syndrome find it is not the devastating event they expected.
“There is the recognition that the perfect baby they were expecting didn’t arrive, but our experience is that parents rapidly adapt,” he said. “Fundamentally, that general perception about Down syndrome is founded on misinformation of the ancient past leading to anticipation of a much worse condition. The outlook for children with Down syndrome is really quite positive. Their survivability and quality of life has been transfigured in the last 40 years.”
People with Down syndrome are living longer now — to age 50 and well beyond — thanks to advances in medical technology that can repair many of the congenital malformations they were born with, Ladda said.
“The heart is the major issue,” Ladda said. “Forty to 60 percent of Down syndrome babies have heart problems, and it’s essential that they be evaluated in the newborn period.” Often the babies suffer from an atrial septal defect — a hole between chambers of the heart, which can usually be repaired with surgery, he said.
Nine-year-old Abby Bauleke found what she was looking for in a most improbable spot. She had tagged along, following her older brother and sister to their basketball, football and soccer games — waiting for her time to come. Then leukemia and a paralyzing infection threatened to put a damper on this bundle of energy and enthusiasm, who lives in Savage.
On a recent afternoon, Abby slipped effortlessly out of her wheelchair and into an indoor swimming pool tucked into a nondescript industrial maze of warehouses in Eden Prairie.
“I feel free when I’m swimming,” Abby said. “And my teammates are great.”
As she pulled herself through the water, lap after lap, Abby was surrounded by other children swimming, splashing, kickboarding and laughing. The Clownfish Swim Club was at it again, a unique team comprising more than two dozen kids with autism, Down syndrome and other disabilities that all melt away once they break the water’s surface.