Archive for the ‘ Down Syndrome ’ Category

Should An Olympic Medalist Play Up His Brother’s Disabilities?

Tuesday, February 11th, 2014

Yesterday, I watched Canadian freestyle skier Alex Bilodeau, 26, win the gold at Sochi. The camera panned to his brother, Frederic, wildly cheering him on, joy and pride beaming out of him. Soon, Alex had pulled Frederic over the security barrier and they hugged. Alex dedicated his gold medal to his big brother.

Frederic has cerebral palsy. It’s legendary by now that he has inspired his brother throughout his career, most famously when Alex won gold in Vancouver. As Alex told reporters, “Whatever I do in my life, my brother is my real inspiration. Just like you or I, he has dreams and most of them are not realizable to him…. Every day I feel very lucky to be a normal person that has the chance to go after his dreams. He does not have that chance. And for respect to him, I need to go after that. With his motivation he would be four-time Olympic champion…. He lives his dreams through me.”

I cried when I watched the brothers hug. And then, I cringed a little when Alex spoke. As much genuine brotherly love as there was, what he said emphasized the “dis” part of his brother’s disability. This is the opposite of what I wish for my son, Max, who has cerebral palsy: I want the world to see his abilities.

When we are around other kids and they ask why Max doesn’t speak like they do, I’ll explain that he does communicate, just in his own way. If his iPad and speech app are handy, Max can show them how he uses it to voice his thoughts. When other kids in the neighborhood have asked why Max can’t skateboard, I’ll say his muscles aren’t yet up to it—but then I’ll point out that he rides his bike really fast. Sometimes, they’ve had races.

People are so used to looking at kids like Max and feeling bad for them. I don’t want the pity; that does Max no good. In fact, it further impairs him. I feel it’s my job, as Max’s mom (and senior publicist), to show the world what he can do.

In a video NBC aired, Alex tears up as he says that if his brother weren’t “handicapped,” he probably would be an Olympic champion—the two used to ski together as kids. Their mother speaks of Frederic’s joy for life. And yet, it is so clear Frederic has ability. He plays chess with his brother. He’s selling his art to benefit the Quebec Cerebral Palsy association.

This mourning of a brother who will never win Olympic gold gets to me. Heck, how many bazillions of people who don’t have disability lack that kind of athletic prowess? How many people are ever Olympic champions? Only a very, very select few.

The entire world has warmed to a story about two brothers, one whose amazing skiing is powered by a brother who will never achieve that. I love that Alex and Frederic have the relationship they do. But I wish this were another story: About two brothers who each have their own special abilities.

From my other blog:

The paradox of disability inspiration and may I admire you, please?

Those special need parent OMG moments

Jobs for people with disabilities, and a flash of hope


Images: Screen grab, 2014OlympicsSochi video; screen grab, NBC Olympics video

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Hooray For Cheerleaders With Special Needs

Thursday, February 6th, 2014

There’s a trend out there worth cheering for: more teens with special needs are becoming cheerleaders. I’ve been reading articles about girls with special needs joining squads, as Rachel Massingale above did at Centennial High School in Boise, Idaho, this year.

Cheerleader Megan Squire, of Verrado High School in Buckeye, Arizona (above), made headlines last year after starring in a video for a Katy Perry music contest. In November, Katy took her to the American Music Awards.

The Sparkle Effect is a nonprofit that encourages teens to include students with special needs—including Down syndrome, autism, and cerebral palsy—in high-school cheerleading programs. To date, there are 122 Sparkle Effect inclusive dance and cheer teams around the country. Unfortunately, schools aren’t always so open-minded. Last fall, the parents of high school freshman Brittany Davila, who lives in Deer Park, Texas and has Down syndrome (that’s her in the center, above), had to put in a special request so she could do her cheer thing; officials wanted to keep her in the stands, citing safety concerns.

Inclusive cheerleading squads are awesome, but I also love the ones out there comprised entirely of people with disabilities. There are the Shining Diamonds (above), a cheerleading team in Helena, Alabama made up of people ages 4 to 31 with special needs who travel to competitions throughout the Southeast (here’s their Go Fund Me page). And the Dakota Spirit Sparklers, an adaptive cheerleading team in Sioux Falls, South Dakota.

Either way, it’s A Good Thing for the world to see that having special needs doesn’t make you any less capable of expressing enthusiasm and getting into the spirit of a game.

From my other blog:

Tracking devices for children with autism and other special needs 

Jobs for people with disabilities, and a flash of hope

Birthday love for my other special child


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Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?
Baby Care Basics: What is Down Syndrome?


Images: Rachel Massingale/screen-grab, KTBV video; Brittany Davila/screen-grab, KHOU video; Shining Diamonds, Go Fund Me

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What A Special Needs Individual Is Worth…According To One CEO

Wednesday, February 5th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at AutismWonderland.

As an autism mom, I have just as many dreams for my son, Norrin, as any other parent raising a ‘typical” kid. One of my dreams for Norrin is that he grow up and be able to care for himself. I want him to have the opportunity to find work that he can take pride in. I am raising Norrin to be a respectful and responsible young man who will become a valued member of society. And I want Norrin to be recognized for his potential and worth.

However, wealthy CEO, Peter Schiff, believes that individuals who are “mentally retarded” are worth $2 an hour. Schiff’s comment is not only arrogant but ignorant. And it perpetuates the misconception that individuals with special needs are less than and unworthy.

Those of us who raise, love and know individuals with special needs, know how wrong Schiff is. It is a privilege to recognize a person’s true value. My friend, Jo Ashline, pretty much summed it up in this simple tweet:

I have a 27-year old sister with an intellectual disability. While there are jobs that she cannot do, there are many she can. For the last few years, she’s had a part time job as a greeter at Ikea. She’s able to take the train to and from home independently and she feels good about the money she earns. I am grateful that she works somewhere that values her as a person. That’s what I want for Norrin and every other kid with special needs.

Just because someone has a “disability” doesn’t mean they lack complete ability  to perform a task. Brad Fremmerlid is an amazing example of what can be accomplished when an individuals special talent is put to good use.

As Norrin’s mom, I believe Norrin is priceless. But on the day he is able to work, I want him to be treated equally and paid accordingly. Because regardless of autism, if he’s able to perform a job well – he should be paid fairly. It’s his human right.

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A Bride Shares Her Wedding With Women With Special Needs

Thursday, January 30th, 2014

I try hard not to think too much about Max’s future. Long ago, I learned that it mostly made me anxious, which did me and Max no good whatsoever. And so I do my best to teach, enable and encourage him, and I hope for the best. Sometimes, though, I wonder about whether he will get married. Given that he’s 11 years old, he’s got plenty of time. (Once, I asked who he’d like to marry, and he answered “Lightning McQueen.”) Still, it’s one of those life happinesses you want for your children, and impossible to ignore.

I saw a video the other day that made me wistful. Vantrease Blair helps run a home for people with disabilities in Orlando. After getting engaged and planning her big day, Blair decided to include seven women from the home in her ceremony. “I wanted to give them the wedding of their dreams and, luckily enough, I married someone who was right on with that and said, ‘Okay, let’s do it!’” she said.

The women picked their white dresses, bouquets, flowers, cakes and wedding albums. Some wore tiaras during the ceremony and some, veils, as they watched Blair take her vows. They all glowed. Afterward, the newlyweds held two receptions: One for themselves, and one for the seven ladies.

Watching the women, you couldn’t help but feel happy for them. And yet, I also felt a bit sad. Were they truly incapable of getting married, even if not in the traditional way? In recent years, I’ve read amazing stories about people with special needs falling in love and marrying, including people with Down syndrome and intellectual disability. As the mother of one bride with cerebral palsy said, “There is no disabled love. There is only true love.”

Words to hope by.

From my other blog:

Couples with disabilities: 5 love stories to celebrate

How raising a child with special needs affects your marriage

Disciplining kids with special needs


Image: Screen grab, CNN video

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Clothes For People With Down Syndrome, Designed By A Granny

Tuesday, January 28th, 2014

I’ve got a fashion challenge with my son, and it’s got nothing to do with him wanting to wear his new Lightning McQueen slippers all the time. We need to find clothing that he can put on himself. This is not easy; Max’s cerebral palsy means his fingers aren’t that nimble and he can’t easily move his arms up and down. My husband’s mother used to be a clothes designer, and we’ve recently asked her to consider making pants for Max that he’d be able to open and close.

Turns out another grandmother has already been there, designed that. Karen Bowersox, 65, of Ohio has a granddaughter, Maggie, with Down syndrome. It had long been a challenge finding clothes that fit her body, Bowersox has said.

Her inspiration

As she’s noted, people with DS typically have a short thigh bone and upper arm bone, which can make sleeves and pants too long; because of low muscle tone, they may develop larger stomachs. In 2010 Bowersox found a good designer and launched Downs Designs. Today, there’s an entire line of clothing including jeans with elastic bands so they’re easier to pull up and down, shirts with different sleeve lengths, shorts and capris. Bowersox calls her creations “Down Sizing.” Tags are printed in inner pockets, so there are no itch problems for those with sensory issues.

Other clothing line creators have had similar motivation; the recently debuted Mianzi Fashion line is the brainchild of a father, Richard Nachum Kligman, who has a son with cerebral palsy. The shirts feature quick-drying bamboo fabric and an extra layer of material so they don’t get soaked from drool (an issue for some children and adults with CP). He launched the line with $25,000 in funding pledged on Kickstarter. Last summer, Bowersox won $50,000 worth of digital marketing from Staples’ Push It Forward contest.

Clothing geared toward people with special needs can improve their lives by giving them more confidence—and increasing their independence. There are actually many people out there with fine-motor skill challenges who would benefit from Downs Designs, including ones with CP. Sometimes Max struggles even with elastic waist bands, like the kind on sweatpants, so we’ve been considering ones with big loops he can grasp. I’m doubtful Prada or H&M will be making them anytime soon so meanwhile, I’m showing this to my mother-in-law. Hint, hint.

From my other blog:

Top 20 reasons moms of kids with special needs rock

How raising a child with special needs affects your marriage

15 learning milestones that thrill parents of kids with special  needs


Images: Downs Designs

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