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.
You may have seen the ABC News report back in November that exposed the Judge Rotenberg Educational Center in Canon, Massachusetts for using electroshock therapy on students who misbehaved. Disability advocates had been fighting the practice for years; now, massive public outcry ensued. This month, state officials are finally attempting to more closely regulate the facility—which is resisting.
Said an attorney for the Center, “There’s plenty of scientific evidence to support (the use of aversive therapies) and the court continues to approve the treatment.” He also noted the the only other alternatives would be restraint or large amounts of antipsychotic drugs.
The school, open since 1971, is considered a last-resort facility for youth with severe behavioral disorders, including extreme aggression and self-mutilation. It also houses children and adults with intellectual disability. Reportedly, this is the last school in the country using electric shocks as a discipline technique, which disability advocates have described as “state-sponsored torture.” There’s nobody regulating what sort of voltage is used; in fact, back in December the FDA sent a warning letter noting that the Center was using unapproved devices.
It’s mind-boggling that this sort of inhumane practice has been allowed to go on. Our understanding of how to help kids and adults with intellectual disability has come a long way in recent decades. There are ways to help control behavioral issues that do not involve frying someone’s limbs or brain. These are kids and adults with disabilities who are getting treated this way, not criminals. Hopefully, authorities will end the practice very soon.
Hearing about stuff like this as the parent of a child with special needs is a shock to the system. It reminds you that there are still people out there who consider kids with disabilities lesser human beings, ones who can only be controlled with cruelty. It reminds us that as parents, and bloggers, we need to continue to help the world understand who are children are—and why they deserve the same respect any child deserves.
I am still bursting with pride over my son’s recent idea for ice-skating. The cerebral palsy gives Max balance issues, and so wearing skates isn’t an option right now. But while we were at a skating center this weekend, he spotted a red walker used to train kids to skate and pointed to it. Aha! And then, Max glided across the ice sans skates, looking happy and very proud of himself.
I was doubly thrilled, too—both because he was having such a good time, and because he had found a way to enable himself. For years now, like most special-needs moms, I have done whatever I can to help Max enjoy the same activities others kids do. I have found a local special-needs softball team for him. I have enrolled him in adaptive soccer clinics. I have found an art therapist who helps him with crafts and who shows me how to help Max.
And so, it is both a pleasure and a relief to have Max reach the stage where he himself is starting to think of ways he can participate in activities. I mean, he has always had massive amounts of determination. I can still picture him as a baby trying and trying to grasp toys (cerebral palsy can make your hands and other body parts tighten up). He’d somehow manage to grab the block or the stuffed animal or the plastic ring, and he’d hold on for dear life. My husband and I wold joke that we couldn’t have chosen a better name for him because he tried to the max to do everything.
And now, that drive is accompanied by the cognition that he can help himself. It’s not a milestone you’d ever read in any of the child development books—but it sure is major to this mom.
Jenna Martin, 12, knows what it’s like to be a kid in a hospital. Born at 24 weeks old weighing 1.7 pounds, she was eventually diagnosed with cerebral palsy. Jenna learned to walk with the help of staffers at Texas Scottish Rite Hospital for Children in Dallas through therapy, braces, injections and surgery. As she writes, “When I was in the hospital I looked forward to the day when the cart came around. On the cart were toys, books and kid stuff they gave to you when you were in the hospital and waiting to be seen by the doctor in the clinics. These gifts took my mind off the pain.”
This year, before she turned 12, her dad asked what she wanted as a birthday gift. Jenna decided she already had enough in her life and that any gifts she received she wanted to give to the kids at the hospital. And that’s when JJ&B’s Gifted Gifts Foundation Inc. was born. The non-profit’s motto: “We ‘gift’ back.” Earlier this month, Jenna organized two local drop-off locations for anyone who wanted to donate presents; check out this video about this amazing young woman.
You’ve gotta love what she’s doing, but it also makes you consider how empowering it must be for her to in turn help others—worth keeping in mind as a confidence booster for a child with special needs.
Live in the Dallas area and have gifts to share? Or want to send some along? Contact Jenna here.