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.
On average, people spend 7 minutes a day waiting for a cup of coffee, 20 minutes a day in traffic, 20 minutes a day waiting for the bus or train and 43 minutes waiting each time they go to the doctor, reports a new Timex survey. In another survey of 3,230 women by Real Simple and the Families and Work Institute, all mothers polled said they spent more than 14 hours a week on child care; 52 percent have less than 90 minutes of free time a day, and 29 percent had less than 45 minutes of time to themselves a day.
Wow. Considering all that, it is amazing that parents of kids with special needs are able to even sleep. Free time? HA HA HA. Also: HA HA HA HA HA. Even after the kids are asleep at night, I am typically filling out forms, Googling information or apps that could help Max, emailing back and forth with his therapists and teachers, you name it. Some days, taking a bathroom break feels like a treat.
I am raising two kids, one who has no particular special needs (other than an occasional ‘tude) and one who has cerebral palsy, and so I know full well how much actual “time” each one takes. The truth is, everything with Max takes more time, from dressing to doing homework to taking a bath. That’s just the way it is—I’m not complaining. Then there’s the time I spend throughout the year taking Max to therapists or special doctor appointments. I’m not griping about that, either: I will do anything and everything I can to enable Max and help him succeed in this world. In the end, the most significant time suck of all is my dealings with the insurance company. And, oh yes, I AM GRIPING ABOUT THAT.
It’s not that a call with an insurance company necessarily takes more time than, say, driving Max to the speech therapist (although I’ve spent as long as an hour on the phone with reps). It’s just that the calls themselves are particularly sucky time sucks because I’m usually calling about yet another claim that has mysteriously gone unpaid, though I have sent in all the required paperwork. Or I’m calling about an appeal that has gone unaddressed. These calls have the tendency to suck the life right out of you.
Typical conversation with an insurance company representative:
Me: “I sent in that information two months ago.”
Rep: “Let me check. Do you mind holding?”
[Insert 10 minutes of not-at-all-relaxing Muzak]
Rep: “Hello. You’re right, that information was in the system.”
Me: “So why did I get a letter stating the information needed to be sent in?”
Rep: “I apologize, ma’am, I’m not sure.”
[Clonk clonk clonk: sound of me banging head against the wall.]
Years ago, when I was with a different insurance company, they assigned a case manager to our family at my request. That meant I had just one person who was familiar with Max’s history, one person to call when I ran into issues, one person who was basically on top of everything.
With our current insurance company I was told that, no, there is no way to assign us one dedicated claims specialist.
Sigh. There oughta be a law. As the mom of a child with special needs, I have so, so, so many demands on my time. (Did I mention I have so many demands on my time?!). It would make my life far easier to have a dedicated claims specialist. I suspect it would also streamline things on the insurance company’s end, too.
Are you listening, insurance companies?
Now you’ll have to excuse me; I’m off to treat myself to a deep breath.