These parents didn’t just think up stuff that would make life better for their kids with special needs—they made them happen. Props to them for inventions that enable all our children.
Dolls for kids with special needs
At 9-years-old, Hannah Feda was flipping through a toy catalog and noticed there were no dolls that looked like her. Hannah has Down syndrome; her mom, Connie, set out to find dolls that resembled her daughter, but didn’t find any she thought were good. So she set out to create her own with help from a sculptor, occupational therapists, and other parents. The result: Dolls for Downs, whose mission is to “represent children with disabilities in an honest, favorable light and give kids with disabilities a friend for life.” The company’s first deliveries will be arriving soon.
A cool way to get around
When DeeAnn and Jason’s son, Zachary, was a tot, they needed something to help him move around the house; Zach has spina bifida, and cannot move his legs. With the help of an engineering friend they came up with the ZipZac chair. Suddenly, Zachary had the ability to move around the house, pick up toys, and play with them by himself and generally be more independent. The chair is now available in two sizes, one for kids up to 3-years-old, and one for kids ages 2.5 to 5.
A safer sleep for kids with autism
Rose Morris had a son with autism who tended to wander in the night, leaving her concerned about his safety (and her sleep deprivation). While staying at a friend’s house, he ended up in a Pack ‘N Play with an afghan on top, secured by bungee cords. And that gave her the idea for developing The Safety Sleeper, a bedframe that turns any mattress into an enclosed canopy bed—enabling both kids and their parents to rest easy.
Educational apps for kids with special needs
British mom Bev Dean, founder of Special iApps, had some very cute inspiration: Her son William, born in 2005 with Down syndrome and other special needs. A former IT specialist, her drive to create engaging, educational apps for William lead her to become an Apple app developer. The apps she’s created include Special Words, Special Numbers, and Special Stories (all available on iTunes, for iPhone, iPad, and Android), with more coming soon.
Drool-proof clothing for kids with special needs
Kids with cerebral palsy often have uncontrollable drooling, and it’s hard to find ways to avoid sopping-wet shirts. Richard Kligman decided to create a line of high-quality, quick-dry, antibacterial, and good-looking clothing for his son, Moishe, an 11-year-old with CP, so “he would not have to wear a bib all day.” He hired a designer and raised $25,000 in funding on Kickstarter. Called Mianzi (which means “bamboo” in Swahili, the material the clothing is made from), the first batch of shirts—with long and short sleeves—are on pre-order.
An easy way to control devices
Phil Weaver began building contraptions for his son Jackson, then 3, a few years ago. Jackson his cerebral palsy and Weaver wanted his son to be better able to play with toys. So he came up with the Switchamajig, which enabled Jackson to easily control movements of switch-adapted toys. Now available, the device allows users to control up to six switch ports on switch-adapted toys and appliances. A new unit, the Switchamajig IR, works with non-adapted devices.
Know of other great inventions by parents of kids with special needs? Please do share!
Max does not currently have career aspirations he’s yet shared with me. I’m pretty sure he’d like to work at Carsland, but given that he is only ten years old and his obsession with all things Lightning McQueen might end before adulthood, I can’t be sure.
I have so much optimism for Max, but I also have realism and so I believe his career choices might be limited by the disabilities he has from the cerebral palsy. Still, I am constantly awed by the accomplishments of others who also have CP. Last week, there were two: a 16-year-old with athetoid cerebral palsy, Natasha Lambert, who crossed the English Channel solo, steering her yacht with a mouth device. Then I read about Steph Hammerman, a 23-year-old who recently became the world’s first CrossFit trainer with cerebral palsy.
As Steph tells it, during college she put on weight and began working with a trainer. Eventually, she got into hand-cycling, racing competitively. Bitten by the fitness bug and seeking to grain strength, she looked into CrossFit and fell in love. Recently, she became the world’s first certified CrossFit trainer with cerebral palsy. As she said, “There’s no reason in this world that people have to say they can’t do something. If somebody really wants to do something, they’re gonna find a way to make it work.”
As much as I love hearing that, as much of a cheerleader as I am for Max, I am not convinced he will be able to do anything in this world. A surgeon? I’d say no, given his fine-motor challenges. A glass blower? Ditto. True, technology is ever-evolving and who knows, maybe when Max gets older there will be robots and machines that perform all kinds of surgery and create glass by pressing buttons. Right now, I feel confident that there will be a growing number of resources as he gets older, optimism that he will find his place, and inspired by others out there with special needs who are blazing trails for him and other kids.
People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.
This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.
His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.
It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.
The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.
I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.
Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.
Today is National Cerebral Palsy Awareness Day, part of a month-long campaign. And there is a whole lot of awareness to be raised, because there is a shocking lack of funding for CP research. (Warning: If you have a kid with CP, the following might make your blood pressure rise.)
More than 800,000 Americans have cerebral palsy, notes the non-profit Reaching For The Stars (RFTS). It’s the most common motor disability in children, and has a higher rate of occurrence than muscular dystrophy, childhood cancer, hearing and vision loss, spina bifida, hemophilia, fetal alcohol syndrome and cystic fibrosis. There is no known cure, or means of preventing it. In more than 80 percent of cases of CP, the cause is unknown. As RFTS notes, “We still do not know much more about the underlying causes for prevention of CP than we did half a century ago.”
More troubling facts:
• Cerebral palsy receives no dedicated federal funding for research at the National Institutes of Health or the Centers for Disease Control. Data indicates that, in recent years, up to four times more NIH funding was dedicated toward research and surveillance of disorders that affect less than half as many people as those living with CP.
• Despite advances in prenatal and neonatal care, one study indicates the prevalence of CP is now as high as 3.7 per 1000 8-year-olds.
• CP is costly. Most children and adults who have it need long-term medical care. The average lifetime additional cost for the care of a person with CP versus one who doesn’t have it is $1.5 million.
What can you do?
Contact your U.S. Representative and Senators and urge them to support funding for cerebral palsy research. You can find your elected officials here.
Many people consider YouTube an endless source of entertainment. I enjoy a good Harlem Shake video as much as the next user, but for me and many parents of kids with special needs, YouTube is also inspiration central. My latest find: Steve Wampler speaking at a TED Conference. That’s him above seated in the chair hanging upside down El Capitan, a vertical rock formation in Yosemite National Park that’s twice the height of the Empire State Building.
Wampler was born with severe cerebral palsy. His parents, he said, treated him the same way they did his four siblings. He had a life-changing moment when they sent him to a wilderness camp at age 9. In 2002 he formed The Wampler Foundation, a nonprofit that is dedicated to providing camp and outdoor education programs for youth with physical disabilities.
A couple of years ago, Wampler set his sights on El Capitan, one of the world’s favorite challenges for rock climbers. He trained five hours a day for a year and a half. And then he climbed that mountain in six days with a partner, moving two to six inches at a time and doing some 20,000 pull-ups. I know of few people with “typical” abilities who could have accomplished this feat, which takes not just physical strength but the extreme psychological kind, too.
Since his climb, Wampler has received thousands and thousands of emails from kids with disabilities saying “Now I know I can do it. I know I can live a full life, and basically nothing can stop me.”
Watch his talk and you’ll believe, more than ever, than nothing can stop your child.