Archive for the ‘ Down Syndrome ’ Category

Sisters In Wheelchairs Win A National Dance Competition

Tuesday, February 18th, 2014

Two sisters won the Jamfest Dance Super Nationals this past weekend in Covington, Kentucky. That’s pretty cool, but their story gets even better. Gracie Latkovski, 9, has cerebral palsy and cystic fibrosis, and dances in a wheelchair. Her older sister, Quincy, started the performance in a wheelchair, then she stood up and twirled around the stage with Gracie to the song “Reflections.” They won out over 4500 dancers from around the country. Here’s a video of the routine they did (from another performance):

The girls have been dancing for years at a studio; Gracie started at age 3. People have called the dance “heartwarming” but it’s so much more than that. The girls’ grace and emotions shine through in the video—talented dancers, both of them. Said Gracie, “I love dancing and want to show that I can do anything everyone else can because I believe in my dreams.”

From my other blog:

How to respond when people ask what’s wrong with your child with special needs

7 ways to encourage play for kids with special needs

Jobs for people with disabilities, and a flash of hope

 

Image: Screen grab, The Jam Brands video

Ring Around the Rosie
Ring Around the Rosie
Ring Around the Rosie

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A Boy With Special Needs Discovers A Million People Like Him

Thursday, February 13th, 2014

“Because of Colin’s disabilities, social skills are not easy for him, and he often acts out in school, and the other kids don’t like him,” read the post on the Facebook page Happy Birthday Colin, started by his mom, Jennifer. Colin turns 11 on March 9th. “So when I asked him if he wanted a party for his birthday, he said there wasn’t a point because he has no friends. He eats lunch alone in the office every day because no one will let him sit with them, and rather than force someone to be unhappy with his presence, he sits alone in the office. So I thought, if I could create a page where people could send him positive thoughts and encouraging words, that wold be better than any birthday party. Please join me in making my very original son feel special on his day.”

Reading that, it’s hard not to feel awful for this child. And to totally understand the situation if you are the parent of a child with special needs. Whether a kid has autism, cerebral palsy or Down syndrome, he can lead a lonely existence. We parents do what we can. This mom had a great idea.

The page went up last week, and the outpouring of support has been amazing. As I write this, it has 1,735,835 likes coming in from around the world. A sorority at Indiana University made a Happy Birthday video for Colin. A police department in Texas shared their wishes. People are also sending cards by mail (Colin, P.O. Box 756, Richland, MI, 49083-0756).

I can only imagine how happy all the birthday love will make Colin. The powers of social media are mind-boggling. But I’m hoping for real-life social changes for him, ones that last long after his birthday. Ideally, Colin’s teachers will use this as a learning opportunity. Ideally, parents of the kids at Colin’s school will now encourage their kids to make friends with him and sit with him at lunch—or at least some of them will. And ideally, any parent anywhere reading this will have a better understanding of what life can be like for children with special needs, and teach their children well.

From my other blog:

How to respond when people ask what’s wrong with your child with special needs

Those special need parent OMG moments

Jobs for people with disabilities, and a flash of hope

 

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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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