Archive for the ‘ Down Syndrome ’ Category

6 Things I Learned When I Made A Friend With Down Syndrome

Tuesday, November 4th, 2014

At first, writer Judy McFarlane didn’t know what to make of a friend’s request to help a young woman who wanted to write. “Her name is Grace, she’s 23, and she has Down syndrome,” her friend said. “Would you meet her for an hour or so and help her get started?”

This was in 2005 and, recalls Judy, “My immediate reaction was negative. I’d never met anyone with an intellectual disability. How could someone with Down syndrome think about writing? How would we talk about writing? Or talk at all? What if she became frustrated, upset, even agitated? But Grace had said out loud, I want to write. The words I hadn’t been able to say when I was her age. She’s braver than you were, I told myself. And so, with much hesitation and fear, I went to meet Grace.”

The result of their collaboration: Cinderella-Grace, Vancouver Princess, a modern-day fairytale in which Grace cast herself as a feisty princess who marries her prince, honeymoons on the Titanic, has three daughters and becomes a famous spy. Judy helped Grace edit and revise her writing. “Her parents published her book, her church held a book launch, and Grace displayed her book at the World Down Syndrome Congress held in Vancouver, Canada,” she says. “Delegates from over 30 countries took Grace’s book home with them.”

Now, Judy has written a book about her experience, Writing With Grace. Reviewers describe it as “beautiful” and “absorbing and moving” and “brimming with insight that inspires us to re-examine our attitudes towards both ourselves and those we deem to be different.” Here, some key things Judy learned on her journey with Grace:

A person with Down syndrome is a person, with Down syndrome

Before getting to know Grace, I saw her as Someone With Down Syndrome. It was as if the real Grace was hidden by a dark cloak called Down syndrome, making it impossible for me to see her. But as I got to know Grace, I began to see her for who she is – someone who loves to read, likes learning a new language, someone with a good memory. Someone who is not cheerful all the time, who can get annoyed or angry or frustrated like anyone else. Someone who has dreams. And loves going to Starbucks!

People don’t know how to interact with disabled people

One day, as Grace and I read a speech given by a young Japanese woman about what it meant to her to have Down syndrome, Grace blurted out, “My truth is too scary. I like to hide my real truth.” When I’ve been out with Grace, I’ve seen a variety of looks directed at her—unease, discomfort, and even, once or twice, outright hostility. Others appeared not to see her at all. It’s rare for someone to smile at Grace and say, “Hi, how are you?” Grace always seemed to take these reactions in stride. But after she blurted out her words, I realized she had noticed and concluded that having a disability is a scary thing. And she’s right. It takes courage to go out every day into a world that does not always welcome you, that sometimes gives you the message that it wishes you were not there.

There’s no one-size-fits-all with Down syndrome

There’s a tremendous range of abilities for people with Down syndrome. Some are non-verbal, some are able to hold down a job and live independently, some can drive a car, act on TV, or even graduate from university. All of which tells me how ignorant I was before I met Grace, when I made assumptions about what she couldn’t do.

Inclusion is a nice word, but….

There’s no question we’ve made enormous progress in the treatment of those with disabilities over the last fifty years. Laws now provide for inclusion in many areas, such as education and employment. But real inclusion, I’ve come to see, is not just about legal rights. It’s about whether someone feels welcome, that he or she belongs. And that happens on an individual level. Do we look someone in the eye? Do we smile at them? Do we include them in the conversation? In his wonderful book, The Body Silent, Robert Murphy (a former Columbia University professor forced to use a wheelchair because of a spinal tumor) wrote that those with disabilities often stand outside the formal social system, as if they’re in a strange darkness, like an eclipse of the sun or the moon. When I read that, it struck a chord with me. Before I met Grace, to me it was as if those with intellectual disabilities were shadowy, almost invisible.

Fear is a powerful force of exclusion

Jean Vanier, who founded L’Arche, an international organization that provides support and homes for people with intellectual disabilities, has written that we are frightened of those who are different, that fear is at the root of all forms of exclusion. I recently experienced this close to home. Almost every day, I walk through my neighborhood park. I often pass a man who lives there, camped out beside the park caretaker’s building. In all the times I’ve passed him, he’s never once looked up at me. And I’ve never once said hello to him, although I’ve often wanted to. He always seemed so alone, so unreachable. And I was afraid of him, afraid of how he’d react to me.

Yesterday, he was standing right beside the path. I don’t know why, but as I passed, I said good morning. He looked up at me, and for the first time, I saw his blue eyes. A half-smile crossed his face before he looked down again. I walked on, and then I cried. For his loneliness, and for all the lost times when I could have spoken up, when I could have looked him in the eye and smiled.

There are unexpected moments of delight

One day, after Grace and I had been interviewed by a local magazine about her book, we were driving home. Grace asked me to sit in the back seat with her, while her mother drove. As we drove along, Grace turned to me. “I’m a famous writer now,” she said. I agreed that she was, in a way. We drove along for a few more moments, then Grace said, “So where’s the black limousine?”

I laughed and broke the news that most writers never get a black limousine. And then we carried on. Grace would always have her book and nothing could take that away from her. And I knew I would find a way to tell both her story and the story of how she changed me.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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A Disney Princess With Down Syndrome: Now That Would Be Magical

Tuesday, October 21st, 2014

Delaney Skye, 15 months old, is fascinated by Disney princesses, as tots tend to be. Delaney has Down syndrome, and her mom decided it would be awesome for her daughter to see a princess who looks like her. So Keston Ott-Dahl started a petition on Care2.com, and it’s racked up more than 37,000 signatures from around the world so far.

“When I see her mesmerized by Disney princesses, it breaks my heart to know she has no role models like herself,” Ott-Dahl told the Los Angeles Daily News. Another goal she has in mind: to help people be more welcoming to kids like her little girl. As she noted in the petition,

“Disney does a great job of depicting right from wrong. It has long provided wonderful moral lessons that teach our children to be good people…. What wonderful lessons of diversity, compassion and acceptance Disney could teach our kids if they promoted disabled characters as heroes and heroines in their beloved movies!”

Ott-Dahl noted that the last Disney character to have a Down-like disability was in the Hunchback of Notre Dame, which came out 18 years ago. There’s also Dopey, in Snow White and the Seven Dwarfs, who does not verbally communicate (although his name sure doesn’t flatter people with speech challenges). Some say that Nemo, with his damaged fin, has a disability.

As a mom of a kid with cerebral palsy, I’ve wondered myself about a potential Disney character with foot braces. Last year, renditions by artist aleXsandro Palombo of Disney princesses who were limb-different, in wheelchairs and using crutches went viral. Ott-Dahl imagines that a Disney princess with Down syndrome would, she said, “talk a little differently” and “look different.”

And that would be a great thing.

From my other blog:

The amazing two words a kid said about my son with special needs

One extra chromosome does not define people with Down’s syndrome

On not letting your kid’s obsessions get to you

 

Image source: Care2.com

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What People Can’t Tell About Kids With Down Syndrome From Looks Alone

Thursday, October 16th, 2014

October is Down Syndrome Awareness Month, although as with any disability awareness month, awareness, inclusion and an all-around welcoming attitude should happen year round. I asked parents on social media who have kids with DS, along with family members, to share what they thought nobody can tell about their children with Down syndrome. These are the amazing responses:

“People don’t realize how smart kids with Down syndrome can be. Nathan has known the entire alphabet since he was two, and at four he knows uppercase and lowercase alphabet, colors, shapes and numbers to 20. He’s an excellent problem solver, and an expert at manipulation (especially with females)! His speech therapist recently told me that he’s so smart he’s figured out how to ‘play dumb’ so he can get away with more!”—Andi Sligh, Bringing the Sunshine

“They have no idea just now much light Dylan, 2, adds to our lives. They can’t see just how amazing his life already is, and how amazing it’s going to be. He’s pictured with his big brother Jackson, who has autism. They’re my superheroes!”—Toni M. 

“How much drive she gives me. This is my sister Amy, we are 18 years apart and our mother is about to turn 65. I have ESRD (kidney failure) but my responsibility to my sister keeps me strong, even when I feel like my illness is overwhelming me. She is my best friend and I live to make her happy.”—April F.

“He’s a great friend and big brother! He may not be able to talk but he has plenty to say! He has feeling, likes and dislikes just like anyone else! He’s also a huge Seahawks fan!”—Heidi F.

“Carly, my daughter with autism, has many friends with Down syndrome, three in particular that she’s closest to. They are all so different. One is quiet and easygoing, one is the class clown and the other one is the boss! They are the three musketeers but when Carly’s around, she’s never left out. They are sweet and kind and they don’t lose interest just because Carly doesn’t answer back all the time when they try to talk to her. They know the true meaning of inclusion!”—Marci R.

“He is paying attention to everything that is going on and watching everyone all the time. He knows when we are talking about him.”—Nechama K.

“How unique her personality is and how smart she is. She’s not interested in all this princess stuff. She declared yesterday, ‘I queen!’”—Tricia D. 

“How much he’s impacted so many lives in such a positive and amazing way.”—Kristy H.

“That she is just one of the gang when it comes to the family. She’s changed our whole perspective on life.”—Laura T.

“People can’t tell how much she loves drama—I mean the good kind of drama, acting in plays!”—Michelle Beausoleil Helferich, Big Blueberry Eyes

“They cannot tell that he is really The Flash in his everyday clothing! Honestly, that he is not always happy.”—Vesta R.

“That while she looks all sweet and innocent, she can be a stubborn little thing. Ellie is one spunky girl who loves to climb and dance.”—Anna. T

“That he has a hilarious sense of humor…owns my heart…makes life so much better! And he can work technology about a million times better than most adults!”—Ashley B.

“How strong he is. Both physically and mentally! At six he always amazes people with how strong he is when he’s fighting for something he does—or doesn’t—want. And he has overcome more obstacles than most people do in a lifetime yet still his spirit and joy for life shine through. I love this kid.”—Kristi D.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

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The Bill That Could Better Our Children’s Lives

Tuesday, July 29th, 2014

If you are an adult with disabilities, you are not allowed to have more than $2000 or you surrender your government benefits. I’ve known this fact for years, after I went to a rather depressing seminar about the future of benefits in our state. But there’s legislation in the works that would allow people with disabilities (and their families) to save up to $100,000 to pay for health care, education, transportation and other expenses, without losing Medicaid coverage. The act is called Achieving a Better Life Experience (ABLE), and a U.S. Senate hearing last week kicked off the bill’s progression through Congress.

Reports say that the bill is likely to pass in September, with hundreds of sponsors from both houses of Congress. Sara Wolff, 31, who has Down syndrome, testified before the Senate panel, noting how the ABLE Act could improve her life; per current laws, she is only allowed to earn up to $700 a month.

As she’s said, “Just because I have Down syndrome, that shouldn’t hold me back from achieving my full potential in life. I can work a full-time job, be a productive member of society, and pay taxes—but because of these outdated laws placed on individuals with disabilities, we hold people like me back in life.”

You can add your signature to the online petition to pass the ABLE Act.

Life With Down Syndrome
Life With Down Syndrome
Life With Down Syndrome

From my other blog:

The shocking realities of raising children with disabilities, and why society needs to know

What I think when I watch my child with special needs sleep

Let It Go, like you’ve never heard it sung

Image of piggybank via Shutterstock

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This Girl Will Stop People From Aborting Babies With Down Syndrome

Tuesday, July 22nd, 2014

No matter whether you are pro-life or pro-choice, it seems like there’s one thing to be agreed upon: Parents-to-be who find out their baby in utero will have Down syndrome deserve access to solid information and support.

Thanks to Chloe Kondrich, 11, and her father, Kurt, that’s going to happen in Pennsylvania. The two are behind new legislation known as Chloe’s Law that requires health care experts to provide women who get a prenatal diagnosis of Down syndrome with factual and supportive information from the Pennsylvania Department of Health.

A former policeman, Kurt Kondrich has been a dedicated advocate since Chloe’s birth in 2003, when he and his wife learned that she had DS. He went on to get a masters degree in Early Intervention, and now works full-time on the Interagency Coordinating Council for Early Intervention. Chloe, meanwhile, is quite the media star—her dad notes that she’s been in magazines, books and newspapers, and regularly mingles with politicians.

Between 60 to 90 percent of women who receive a prenatal Down syndrome diagnosis end the preganncy, according to a 2012 meta-analysis of 24 studies in the journal Prenatal Diagnosis. The evidence suggests that termination rates have actually decreased in recent years. It makes sense that worried parents who get support may be less likely to abort a baby with Down syndrome.

Chloe, who attends Boyce Middle School in Pittsburgh, reads at the same level of her sixth-grade peers. She stood with Governor Tom Corbett as he signed Chloe’s Law. As State Rep. Jim Marshall (R), the prime sponsor for the act, said, “We hope this will raise awareness to parents who may get the diagnosis and be initially afraid of what the result will be. I think it will raise awareness that their kid is going to be different, not imperfect. There really isn’t anything more perfect than a happy child.”

From my other blog:

8 ways to include kids with special needs in programs, events, classes, camps, wherever

Let It Go, like you’ve never heard it sung

The shocking realities of raising children with disabilities, and why society needs to know

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

Image: Kurt Kondrich

 

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