Posts Tagged ‘ Down Syndrome ’

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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A Teen With Down Syndrome Models For Wet Seal: A Start, Not An End

Tuesday, September 24th, 2013

Karrie Brown, 17, of Collinsville, IL, recently did a modeling shoot for Wet Seal. This wouldn’t be headline-making, except she landed it through social media. Also, she has Down syndrome.

When I first saw the photos of the shoot over at Today.com, I felt happy that another young person with special needs was appearing in an ad. The story started on Karrie’s Facebook page. A note posted read, “Karrie has Down syndrome, but she doesn’t let that stop her from following her dreams, which is to be a model. We recently found out that Wet Seal has started carrying plus-size clothing, which happens to be a great fit and fashion for girls with Down syndrome. Wet seal if you are listening, ‘Karrie fits in while standing out!’ and that’s directly from your mission statement.”

The message made its way to the Wet Seal powers-that-be, who promised “something special” if Karrie’s page got 10,000 likes by the end of the week. Brown got 14,000—and a photo shoot in L.A., with the company treating for flights, a hotel, a new wardrobe and a trip to Disneyland. All this is wonderful for Karrie, an aspiring model. But I think people are getting the wrong idea. A lot of the articles about this gushed about Karrie’s dreams coming true. Buzzfeed called her “adorable,” a patronizing description. Only a few, including ABC News, reported that Karrie’s photo shoot is set to be released on Wet Seal’s website and social channels in coming weeks. It was as if the actual ads themselves were not a big deal.

Companies placing kids and teens with special needs in ads isn’t exactly a trend, but it’s happening more and more. Last year, beautiful Valentina Guerrero—who also has DS—was chosen as the face of a swimwear line. Target, Nordstrom’s and Toys ‘R Us have also featured children with Down syndrome in their ads as well. Whether or not companies are doing this to get  attention is besides the point; this is what companies do, draw attention to themselves. It isn’t “exploiting” kids with special needs, as some naysayers have claimed, any more than using cute, attractive, photogenic kids without disabilities in ads is. Actually, it’s equalizing.

Karrie’s shoot was surely quite the thrill. But this is a young woman who wants to be a model. People should be talking about how this could be the start of her career. People should be talking about how Karrie will fit right in with all the other pretty young women on Wet Seal’s site. People should be talking about whether Karrie could be the first young woman with Down syndrome tapped by a major modeling agency. It’s belittling to say that her “dreams” came true with the photo shoot, because she is capable of achieving so much more.

Think about it this way: If Karrie were any young, aspiring model who happened to have caught Wet Seal’s attention through a Facebook campaign, would everyone be saying that the photo shoot itself had fulfilled her dreams? No, they wouldn’t. I’m thrilled this happened for Karrie, but I have higher hopes about where it could lead. We all should.

Photo: Screen grab, NewsAtUK video

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Baby Prince George Raises Awareness For Down Syndrome

Tuesday, September 10th, 2013

Duke and Duchess William and Kate are purchasing a painting from an established British artist for Prince George’s nursery. That wouldn’t be such headline-making news except the very talented artist, Tazia Fawley, happens to have Down syndrome. This could be an amazing thing for kids and adults with DS, and other special needs.

Tazia’s been painting for ten years, mainly landscapes and seascapes. She is a member of Heart and Sold, a charity supporting and showcasing artists with Down syndrome. Fawley had painted the acrylic Rupert Flies Over the Clifton Suspension Bridge several years ago. The director of the nonprofit sent a letter to St. James Palace asking whether the royal couple would like the painting to honor the new baby. Yes, they did.

I can’t even imagine how many people have no clue that, yes, people with Down syndrome (or other special needs) have artistic talents—just like any people. I know from raising Max, who has cerebral palsy, that people tend to mostly see the disability, not the ability. Or as may be the case, they’re blinded by pity. The news is surely going to open a lot of people’s eyes.

Fawley’s lives with her mother, sculptor Gylda Thomas, and paints in her own studio. As Thomas told a local paper, “I think most people’s attitude toward anybody with a disability is that they feel sorry for them. But it’s hard to feel sorry for Taz when she can do something so well.”

From my other blog:

Your child could change a world 

A Bill of Rights for parents of kids with special needs

The merry-go-round incident: letting our kids flex their independence

Photos: Screen-grabs, BBC video

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Great Inventions For Kids With Special Needs—By Parents!

Monday, July 22nd, 2013

These parents didn’t just think up stuff that would make life better for their kids with special needs—they made them happen. Props to them for inventions that enable all our children.

Dolls for kids with special needs

At 9-years-old, Hannah Feda was flipping through a toy catalog and noticed there were no dolls that looked like her. Hannah has Down syndrome; her mom, Connie, set out to find dolls that resembled her daughter, but didn’t find any she thought were good. So she set out to create her own with help from a sculptor, occupational therapists, and other parents. The result: Dolls for Downs, whose mission is to “represent children with disabilities in an honest, favorable light and give kids with disabilities a friend for life.” The company’s first deliveries will be arriving soon.

A cool way to get around

When DeeAnn and Jason’s son, Zachary, was a tot, they needed something to help him move around the house; Zach has spina bifida, and cannot move his legs. With the help of an engineering friend they came up with the ZipZac chair. Suddenly, Zachary had the ability to move around the house, pick up toys, and play with them by himself and generally be more independent.  The chair is now available in two sizes, one for kids up to 3-years-old, and one for kids ages 2.5 to 5.

A safer sleep for kids with autism 

Rose Morris had a son with autism who tended to wander in the night, leaving her concerned about his safety (and her sleep deprivation). While staying at a friend’s house, he ended up in a Pack ‘N Play with an afghan on top, secured by bungee cords. And that gave her the idea for developing The Safety Sleeper, a bedframe that turns any mattress into an enclosed canopy bed—enabling both kids and their parents to rest easy.

Educational apps for kids with special needs

British mom Bev Dean, founder of Special iApps, had some very cute inspiration: Her son William, born in 2005 with Down syndrome and other special needs. A former IT specialist, her drive to create engaging, educational apps for William lead her to become an Apple app developer. The apps she’s created include Special Words, Special Numbers, and Special Stories (all available on iTunes, for iPhone, iPad, and Android), with more coming soon.

Drool-proof clothing for kids with special needs

Kids with cerebral palsy often have uncontrollable drooling, and it’s hard to find ways to avoid sopping-wet shirts. Richard Kligman decided to create a line of high-quality, quick-dry, antibacterial, and good-looking clothing for his son, Moishe, an 11-year-old with CP, so “he would not have to wear a bib all day.”  He hired a designer and raised $25,000 in funding on Kickstarter. Called Mianzi (which means “bamboo” in Swahili, the material the clothing is made from), the first batch of shirts—with long and short sleeves—are on pre-order.

An easy way to control devices

Phil Weaver began building contraptions for his son Jackson, then 3, a few years ago. Jackson his cerebral palsy and Weaver wanted his son to be better able to play with toys. So he came up with the Switchamajig, which enabled Jackson to easily control movements of switch-adapted toys. Now available, the device allows users to control up to six switch ports on switch-adapted toys and appliances. A new unit, the Switchamajig IR, works with non-adapted devices.

Know of other great inventions by parents of kids with special needs? Please do share!

From my other blog:

18 things special needs moms shouldn’t feel guilty about 

Totally awkward special needs parent moments

8 ways pretend play can help kids with special needs

 

All images are from their respective sites

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Would Police Help Your Child With Special Needs? Are You Sure?

Thursday, April 25th, 2013

People with disabilities are twice as likely to become victims of crime as as those without disabilities, per The National Crime Victim Survey. What doesn’t seem to have been studied: How often people with disabilities are likely to be harmed by police who are not aware of how to handle them.

This is an issue recently thrust in to the public eye with the tragic death of Robert Ethan Saylor, a 26-year-old with Down syndrome. As is widely known by now, back in January Saylor was at a movie theater and refused to leave because he wanted to see the next show. After authorities were called, Saylor resisted attempts to be removed and grew agitated. The officers pinned him down on his stomach and handcuffed him, letting up only when Saylor showed signs of distress. His death was ruled a homicide, by asphyxiation.

His death, and the lack of criminal charges pressed against the officers, has caused an uproar in the Down syndrome community. But it’s also been incredibly unsettling to others who have loved ones with disabilities. It’s made parents like me hyper-aware that adults who are unable to communicate as others can, who get upset by certain situations and who may not be able to follow orders are at risk of being considered disobedient by police, risking harm. Max, who has cerebral palsy, will grow up to be that adult, most likely. And what if, even now, he got lost in a crowd? What if he wigged out? What the average policeman know how to handle him? No, I think.

It was heartening to read that this week, New York State rolled out the first ever sensitivity training for police offers to help them better interact with people who have developmental disabilities. Although the First Responders Disability Awareness Training is not mandated by the state, New York’s Developmental Disabilities Planning Council pushed for funding it. Currently, as seems to be the case in other states, New York has no protocol for arresting and charging suspects with developmental disabilities.

The American’s With Disabilities Act website offers publications that inform law enforcers about handling people with disabilities. How many police officers actually read them, or get any training, is a big, worrisome question mark. Sometimes, decency and common sense alone won’t help.

I have enough concerns about how my son will navigate this world as he grows up. I hope that authorities in cities and states around the country learn from the tragedy of Robert Ethan Saylor and, in the coming years, start training their police to better understand people with disabilities—and do right by them.

Hopefully, non-profits that advocate for the disabled will keep pushing for this. People who have loved ones with disabilities can call their local police precincts and ask for this. Meanwhile, I’ll be holding Max’s hand extra tightly when we’re out.

Image of police hat and club via Shutterstock

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