Posts Tagged ‘ cerebral palsy ’

Would Police Help Your Child With Special Needs? Are You Sure?

Thursday, April 25th, 2013

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.

Image of police hat and club via Shutterstock

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Why Doesn’t The Government Care About Curing Cerebral Palsy?

Monday, March 25th, 2013

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.

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Climb Every Mountain: Special Needs Parent Inspiration Of The Week

Thursday, March 14th, 2013

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.

Image: Screen grab, TedX Talks

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Shock Therapy For Students With Special Needs: Is This 1913 or 2013?!

Monday, February 25th, 2013

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.

Image: Flickr/otisarchives4

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Sometimes Special Needs Kids Are The Mother Of Invention

Thursday, February 21st, 2013

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.

From my other blog:

Adaptive skiing for kids with disabilities

Couples with disabilities: 5 love stories to celebrate

Mac and cheese mania continues!

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