Posts Tagged ‘ Down Syndrome Awareness Month ’

Will This Teen With Down Syndrome Win Katy Perry’s Heart?

Thursday, October 10th, 2013

Good Morning America recently held a Katy Perry music contest for high-school students. All they had to do was submit a video set to the singer’s “Roar” featuring fellow students, up to 2 minutes long. This week, one done by teens at Verrado High School in Buckeye, Arizona became one of five finalists. The winning school (to be announced on October 18) gets a Katy Perry concert, which will be broadcast live on GMA.

Cool, right? But the coolest part of all is that the video’s star, senior Megan Squire. She’s been on the cheerleading squad for four years and is now on the varsity squad, per AZ Central. And she happens to have Down syndrome. The video reenacts her tryouts for the team.

Roar, Megan, roar! A whole lot of us are cheering you on.

From my other blog:

17 ways to get a mom break when you need one

What strengths has special needs parenting given you?

And now I know what my child with special needs worries about

Image: Screen-grab/Verrado High School’s ROAR video

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8 Things My Girls With Down Syndrome Taught Me About Life

Tuesday, October 8th, 2013

In honor of Down Syndrome Awareness Month, I’m sharing a guest post from Gillian Marchenko, a mom to four girls including two with Down syndrome. The family lives in Chicago. A blogger, speaker and advocate, Gillian is also the author of Sun Shine Down, a new memoir.

I know a lot of moms of kids with special needs who loved their child right away. That’s not my story. My memoir chronicles my grief process, and ends with me falling in love with my baby. Polly is now seven years old. Four years ago we adopted another little girl, Evangeline, who also has Down syndrome; she’ll be seven at the end of October. My children with Down syndrome regularly teach me things about life I desperately need to learn. These include….

1) Keep trying
I watch Polly work with her occupational therapist at writing her name. Her hand shakes as she grips the number two pencil. She’s frustrated. The letter Y is hard to write. “Take a deep breath, Polly. Try again,” coaxes her therapist. What Polly has accomplished so far in life has taken a great amount of work. Some skills she has yet to master, but she keeps trying. I think about that when I come up against hard things in my life like depression, business and not having enough mental and physical energy to complete all the tasks in my day. Instead of giving up, I try to follow Polly’s lead and push through.

2) Look past the stereotype to the person
When Polly was born, my older girls Elaina and Zoya loved her right away. All three girls taught me to look past the stereotype, to the person. “Down syndrome just means it may take Polly a little longer to learn something, right? But we love her. And we will love her, right Mom?”

3) Be grateful for what you have
Our daughter Evangeline loves her light-up cookie jar. She carries it around the house with her. It makes sense though, because 1) she’s a kid and 2) she spent the first two-and-a-half years of her life in a Ukrainian orphanage. The day we took her home, she left with nothing but the clothes on her back. Watching Evie as she plays with her favorite toy reminds me that there are a lot of favorites in my life as well: My husband, my kids, our home, the life we’ve built. It would do me some good to slow down, pay attention to my favorite things and e thankful for what I have.

4) Communication happens without words
Evangeline is six years old and nonverbal. She is starting to use PECS (a picture exchange communication system) to assert her wants and needs but really, this kid has been communicating since we got her. At first she communicated that she didn’t know us, love us, or trust us by staying away and soothing herself. Now, sometimes when I am in the kitchen or upstairs doing chores there’s a little tug on my shirt. I look down and my child is there, arms reached up to me. Love finds a way to communicate.

5) Education is everything
I’m at the park with my girls, swinging one of them in a swing. The child next to us asks her mom why Evie looks different: “Why doesn’t she talk?” Unsure of how to handle the situation, the mother shoos her daughter away and I sigh. I can’t judge this mom. What we don’t know can be scary. But education is important. If we start with kids, they get to live their whole lives unafraid of people who are differently-abled. That’s why I work to educate those around me about Down syndrome.

6) Honest questions deserve honest answers
I’m at Polly’s first grade class reading “My Friend Isabelle,” by Eliza Woloson. Afterward I ask the children for questions. One kid raises his hand. “Why is Polly different than the rest of us?” I smile, admiring his candor. “Polly isn’t different than the rest of you. But she does have Down syndrome, which means she has one more chromosome than you. Chromosomes are like directions in the body. The fact that Polly has more just mixes up some of the directions for her, which means it may take her a little longer to learn things, but she’ll get there.” The little boy nods. He understands. That’s all it takes.

7) Be a good friend
Polly sees that Evie dropped her favorite snack on the floor. She stops what she is doing, walks over and picks it up for you. “Here you go, Evie. I love you.” Of course, I would like to think that I knew how to be a good friend before my daughters came along. But the difference is this: Evie doesn’t interact with Polly very much yet, and yet Polly continues to be kind and do right by her. That’s what I mean. My kids teach me how to be a good friend for people’s sake, not for my own.

8) Choose positive
Every day I have a choice in life. I can focus on negativity—what’s negative about me, about my kids and our life. Or I can attempt to focus on the posit. My girls seem to seek out the good in situations, others and themselves. It is a lesson I keep learning. Polly’s home from her first day of second grade. She struts around the house, high-fiving her sisters, her dad and me. “Yeah! It’s the last day of school!” We laugh and tell Polly that it isn’t the last day of school, but it is the first. She giggles at herself, shrugs her shoulders and starts towards us again for another round of high-fives.

You can find Gillian on Facebook here.

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What People With Down Syndrome Bring To The World: Everything

Monday, October 1st, 2012

October is Down Syndrome Awareness Month, and I’m happy to kick it off with a guest post from Meriah Nichols, a truly exceptional person and blogger. She describes herself as a “travel-hungry pregnant deaf mother of two,” and writes about disability, travel and parenting over at With a Little Moxie. In her spare (HA!) time, Meriah’s spearheading the Down Syndrome Blogs Site and the T21 Writer’s Alliance, both of which help connect bloggers and writers by and for Down syndrome. Stop by anytime. You’ll be welcome. 

As a part of Down Syndrome Awareness Month, I’ve been thinking about people with Down syndrome, the unique gifts that this Tribe with an extra chromosome brings with them, as well as the marvelous contributions they make to the world. There are so many – both people with Down syndrome and unique contributions being made:

Zhou Zhou, the internationally acclaimed symphony conductor with Down syndrome. Pablo Pineda, the charismatic teaching expert, who graduated from a major Spanish university and is now a movie star.  Karen Gaffney with her astounding athleticism. Sujeet Desai, the highly accomplished musician. Michael Johnson and Bernadette Resha, talented artists. Lauren Potter of Glee.  Monica and David , young couple in love. The German dancer, Laura Bruckmann, as photographed by Conny Wenk.

These are fabulous stories of select adults with Down syndrome, busy making stunning contributions to the world. Stories that I grasped and clung to after I found via amniocentesis that my unborn daughter would be coming with an extra chromosome. Stories that helped keep me from drowning when my whole body was submersed in great vats of grief usually reserved for those who have died; not for mothers of babies who haven’t even been born.

These stories settled in a delightful collage, speaking a new truth that people with Down syndrome have everything to offer. That people with Down syndrome bring unique gifts and talents to the world, just as all human beings, each and every one of us, does.

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My daughter Moxie is now two years old. She is a beautiful child. Smart, capable, lively, with a great head of hair.

As I travel a little farther down this road of raising a child with an intellectual disability, I find myself spending less time on the stories of those with Down syndrome who have made unique contributions to the world that are on par with people that have the typical number of chromosomes. What is unique about these stories, after all, other than these accomplishments are being made by people with Down syndrome – an intellectual disability?

Rather, I find myself more drawn to the unique differences that our kids with Down syndrome bring with them by way of the gift of that extra chromosome. I am interested in the “distinctive normal” that our kids create by simply being themselves. The stories that are not on par with the typically developing world, the stories that speak of the remarkable qualities that people with Down syndrome often have.

Like the story about the group of kids with Down syndrome running a race, one kid fell down and everyone stopped and went back to help. And then continued the ‘race’, together. Or the story told to me by my daughter’s physical therapist, of her niece who can walk into a room and immediately sense who is unhappy, and chooses to sit with that person, brighten their spirit.

I am interested in these types of stories, and not just for their heart-warming  potential; I am interested in them because this is a group of people we talk about in such stories – a group. What happens in that gift of the extra chromosome? What is it, exactly, that seems to add with it an extra dollop of care to the recipient? Why do people with Down syndrome seem to care so much about other people?

I admit that I am hesitant to delve too deeply in what appears to be “normal” for people with Down syndrome, not wanting to promote or instill stereotypes. And yet, across the Tribe there appears to be that genuine concern for others.  Across the Tribe, there appears to be a stupendous affinity with music. Rhythm seems to roll from the soul of those with a little extra. Artistic talent, a joyful sense of life that needs to be happy also seems to be ever-present.

Not that people with Down syndrome are happy all the time (check out my daughter when she’s upset for more of that!); not that people with Down syndrome smile all the time either. But I have noticed that when people with Down syndrome do smile, and when happiness is radiated out of them, it’s contagious, it’s delightful, it bright and it’s as sparkly and beautiful as it comes.

And that is perhaps the best gift – the most unique gift – that people with Down syndrome bring: gifts from their heart that have the potential to make the world captivating, caring, delightful. Exquisitely unique.

Image of Lauren Potter via Shutterstock

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Having A Child With Down Syndrome: What Nobody Tells You

Thursday, October 6th, 2011

kayla-michelle-big-blueberry-eyes

October is National Down Syndrome Awareness Month. This week, I’m featuring a guest post by the wonderful Michelle from Big Blueberry Eyes. She’s mom to Kayla, 8, and Lucas, 3, and is an amazing advocate for kids with special needs. I know you’ll like what she has to say.

This is National Down Syndrome Awareness Month. Eight years ago I wouldn’t have known this, nor would I probably have cared. Down syndrome wasn’t part of my life and honestly, I just never heard much of anything about it. My only point of reference to Down syndrome was from when I was younger and watched that TV series Life Goes On which featured Corky, who had Down syndrome. Sometimes I would notice someone and think to myself that they had the tell-tale facial features that indicated Down syndrome, but I don’t recall ever having any interactions, or communication, with anyone with Down syndrome

Then I became pregnant. I started reading pregnancy magazines which led me to articles and discussion about prenatal testing. I remember thinking I wouldn’t end my pregnancy for Down syndrome, I could handle that diagnosis – although not ever believing that I would really get such a diagnosis. That sort of thing happens to other people, right? Besides, I was 29, doesn’t it happen to older women?

When Kayla was born and they placed her on my lap and I took that first look at her eyes, I just knew she had Down syndrome.

Even though I could tell by looking at my baby that she had Down syndrome, I really didn’t know what that meant. I didn’t know what that meant for her, for us as her parents, for her future, or how we were supposed to raise her. I didn’t know what to think. My mind went blank as the doctor talked to us about the characteristics she had that indicated Down syndrome. When I called my dad to tell him the news he responded with, “So? What does that mean?” I didn’t have an answer for him. I mumbled something about it was like “Corky, you know, from the tv show Life Goes On that we used to watch.”

I learned that Down syndrome was caused by an extra chromosome on the 21st pair. I learned it happens at conception; a little extra material doesn’t split right and there ends up being 3 copies of the 21st chromosome (which is known in medical terms as Trisomy 21, or T21). I learned there is nothing I, or my husband, did to make it happen. I learned there is nothing to prevent it from happening. I learned it is not related to race, religion, nationality, or socio-economic status. I learned about all the potential medical problems that we might have to deal with as a result of this diagnosis. I learned that developmental milestones will take longer to reach. Everything I read seemed to be a negative.

No one told me I was going to take my baby home and love her and raise her and do everything I would have done had she not been born with Down syndrome. No one told me the Brushfield spots in her eyes would make them sparkle and shine and people would comment on her eyes all the time. No one told me she would act like, and do, all the things other babies did. No one told me how pleasant and easy-going she was going to be.

No one told me she would continue to amaze me and I would underestimate what she could do or think or say or learn. No one told me she would go to school and make friends. No one told me how quickly it seemed everyone in the school knew her name and who she was. No one told me what an integral part of our family she would be. No one told me people with Down syndrome are valued members of society.

No one told me how infectious her giggle is, or how much she enjoys playing dress-up. No one told me how much she would enjoy riding the school bus, or how much fun she would have in a body of water. No one told me I would fall more and more in love with this child of mine the more I got to know her.

Down syndrome is not a death sentence. It is not something to pity. It doesn’t mean kids with it should be discriminated against. It is not a burden. It is not unhealthy. It is not bad. Down syndrome is different, but different doesn’t mean bad, it’s just different. Down syndrome is just an extra chromosome.

Down syndrome is not some foreign race of individuals that can’t be identified with; Down syndrome is part of the human race. People with Down syndrome have wants, needs, feelings, hopes, dreams, desires, and goals just like any other person. They are more alike their peers than people realize. People with Down syndrome are included in school and can graduate, hold jobs, go to college, live on their own, and get married. There are individuals with Down syndrome who are self-confident and articulate self-advocates.

I hope that National Down Syndrome Awareness month continues to grow and get more publicity. I hope that people who have no connection to Down syndrome will become more aware of what it is and what it isn’t. I hope that people will realize those with Down syndrome are  just as deserving of courtesy and respect as any people.

The next time you come across a child, teenager, or adult with Down syndrome, I hope you won’t avert your eyes and pretend you didn’t see them. Instead, make eye contact, smile, and say “Hi.” I’ll bet you’ll be greeted with a big smile and hello back.

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Students With Down Syndrome Named Homecoming Queens: Go, Mariah and Co!

Monday, October 3rd, 2011

Friday night, Mariah Slick was crowned Homecoming Queen at Azle High School in Azle, Texas. This is news because Mariah has Down syndrome, and is the first homecoming queen at her school with DS to hold that honor. Way to kick off Down Syndrome Awareness Month, which started October 1.

Mariah is in excellent company.

The week before, high school senior Emily Niedrich—who has Down syndrome—snagged the homecoming queen title at Birch Run High School in Michigan. Earlier in the month, students at Western Alamance High School in North Carolina voted senior Abbey Martin to be the school’s 50th homecoming queen. She also has Down syndrome. So does Sydney Bloom, the 2011 Homecoming Queen of Tarkington High School in Liberty County, Texas,

And at the beginning of September, Madi Sonju (above) become the 2011 Homecoming Queen at Deseret Hills High School in Utah. Her twin, Macey, the previous year’s queen, placed  the tiara on her head. Both sisters have Down syndrome.

This kind of news revs your heart and gives you a whole lot of hope for your child with special needs. And you know what would be even more amazing? When the day comes that homecoming queens with Down syndrome no longer get lauded for winning in spite of their special needs. And when people do not refer to a win as an act of “kindess,” as one school principal put it.

Someday, hopefully, young women with Down syndrome or other special nominated needs to the homecoming court would be a totally typical occurrence—no more worthy of a national headline than any other popular, charming, pretty girl who becomes homecoming queen.

 

Photo/My Cup Of Koolaid

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