Posts Tagged ‘ Spina bifida ’

Another Student With Special Needs Left Out Of The Class Photo

Monday, October 14th, 2013

Look closely at this photo of the 2014 graduates of Nederland High School in Texas. Can you tell what’s wrong? Hint: See the teen on the right, in the wheelchair. His name is Brannon, and he is completely isolated from his classmates sitting on the bleachers. “Can anyone guess what I would be upset about?” wrote Brannon’s mom, Pam Hendrix McWilliams, on her Facebook page. “Could it be that my son is way off to the side, trying to lean in to be part of the group?….Was my son just an afterthought in the pic?” She posted the photo, she said, “mainly as a teaching lesson to consider the person that is a wheelchair user and don’t push them off to the side. Get creative and include.”

Brannon his spina bifida. It’s actually Spina Bifida Awareness Month, ironically enough. If this story rings a bell, that’s because a similar one made news last spring when a class photo with second grader Miles Ambridge, who has spinal muscular atrophy, made the social media rounds. All of his classmates were seated on a bench or standing behind it; Miles was a good foot to the left of the bench, alone in his wheelchair and leaning as far as he could toward his classmates. It was heartbreaking (his parents never showed him the photo), and the reaction online prompted Lifetouch Photography to do a retake. That child’s mom also blamed lack of awareness.

Brannon, wrote his sister Kammie on Facebook, “was SO excited to take this picture. Please help us stand up for him!” His mom added, “This draws the line. I feel like Brannon has been discounted as a Senior of 2014 as well as a human being. Brannon would never say anything because he is the ultimate peacemaker, but I sure will…. My heart breaks every time I look at it.

Photos like this are a reminder of just how a little—we’re talking speck size—common sense and consideration can help kids and teens with special needs be included, whether in a group photo, group activity or group whatever. It doesn’t take much; people just have to start thinking about it—and seeing the possibilities.

To anyone who says this is just a photo, a panoramic shot, and that this mom shouldn’t take it to heart, here’s Pam’s response: “Let’s sit your child to she side and see how it feels.”

Retaking a photo like this wouldn’t be half of as big a deal as how this teen might feel looking at this photo for the rest of his life.

Retake the photo, people.

Image: Pam Hendrix McWilliams/Facebook

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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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The Awesome Girl On Parents Magazine: Scoop From Her Mom

Friday, January 4th, 2013

Looking at the cover of the February 2013 issue of Parents magazine, you first notice how super-cute the little girl is, what a great smile she has, how fab her clothes are—oh, that frou-frou pink skirt! The fact that she’s holding onto a walker and has foot braces is almost irrelevant… except for the fact that history is being made. I’ve been a magazine editor for more than twenty years, and I can’t recall a cover ever featuring a child of different abilities. I’ve been a parent of a child with special needs for ten years, and I’ve longed to see kids like my son featured in major magazines. This. Is. Huge. HUGE.

The little girl is Emily Kiecher, age 3; she has spina bifida, a condition that affects 1 in 2500 children caused when the spinal column and surrounding tissue and skin fail to close up in utero. Emily, her mom Liz, 36, and dad Christopher, 35, live in Buffalo, New York. Liz is an at-home mom who runs a handmade hair accessories business, The Sassy Damsel (guess who her favorite model is?) and Christopher’s a high school teacher. The couple are active fundraisers for the Spina Bifida Association, and have helped raise more than $20,000.

I recently got the chance to get Liz on the phone—right before she was whisking Emily off to Disney World for a surprise vacay—to talk about her daughter, how she became a cover star and her hopes for Emily’s future. This is what she had to say:

I have to ask, what kind of walker is that? My son, Max, has cerebral palsy, and he had a rather blah silver one.

It’s a Nimbo walker. I actually wanted silver—you can match more stuff to it than gold! But it’s great for a cover!

What was shooting the cover like? What did you tell Emily?

We told Emily we were going to a photo shoot. I take a lot of pictures of her at home although we’ve never even had a portrait of her done at J.C. Penney, so I think the meaning was a bit beyond her. She had a great time–Emily rolls in every situation, she rarely cries or throws a fit in public. At one point on the set, they asked if she liked music. She loves music. She knows the songs on the radio before I do! They asked what she wanted to listen to, and she said “Lady Gaga,” so that’s what they played. She was dancing around, and pointing to anyone who wasn’t dancing! When we left, she gave hugs and kisses.

What do you think her reaction is going to be when she sees herself on a magazine cover?

We’ve made Shuttefly photo books for her. I think she’s going to think, I’m the star of everything!

That’s not a bad way to go through life, right?! OK, can you share a bit about Emily’s history.

Four years ago, when I was pregnant and went for an 18-week exam, the technician stopped and told us we needed to speak to the OB. She said the pictures showed a hole in the baby’s spine, and that it could be spina bifida. I had no idea what that even meant. I was on prenatal vitamins for a year before I conceived, I was physically fit, I led a healthy lifetyle. The doctor sent us to a perinatologist that day, who did a sonogram. She confirmed it was spina bifida. I was hysterical. She told us our baby would have paralysis, would need a head shunt, and could have various degrees of learning disabilities. She wrapped up our visit by asking if we wanted to terminate the pregnancy. We said, “No.”

How has spina bifida affected Emily?

Her hips are dislocated, but it doesn’t affect her gait, which is pretty good. She has a shunt in her head, to help drain fluid from her brain, and luckily she’s never had any problems with it. She has no surface feeling from her waist down, so I can’t put her on a slide in the middle of summer because she wouldn’t be able to feel it’s burning hot. She has low muscle tone on her left side. Every week she get physical and speech therapy, and also gets occupational therapy, aqua therapy, and hippotherapy.

I’ll bet she gets around pretty well in that walker; my son used to zoom up and down the street in his.

Oh, yes, she can walk, turn, run. For a while I had a horn and a bell on it! Long-term, we expect her to be able to walk with forearm crutches. In October, she took her first unassisted steps. The physical therapist was having her go from a table to the floor to do a puzzle. Emily said, ‘Don’t hold me, I’ll do it by myself!’ And she walked from the table to put the puzzle piece in. I get teary thinking about it.

I’m tearing up too! I know exactly what it feels like to see a child you were told might never walk take those first steps. Tell me, what do you think is the biggest misconception about spina bifida?

When I go to, say, a grocery store with Emily and her walker, the amount of people who stare is insane! I realize people have never seen a walker and they are processing and trying to get an understanding, but I think people make judgments and see her as a disabled child–not a kid who happens to be in a walker. This is an issue for any child with disability. Instead of looking at a child, people see the disability. Those kids who say “awwww” in a pitiful way about her–I’m like, “Have you looked at her? She’s happy!” Emily doesn’t realize she has a disability. When people stare I’ll tell her, “Why wouldn’t people stare at you? You’re gorgeous!”

What are your hopes for the Parents cover?

I’m not delusional–I don’t think people will see her on it and think, I’ll never again stare at a kid in a walker! But I hope some people will see that she’s just another kid. I hope it starts a discourse for people, and makes them open to seeing images of kids from all walks of life. And I hope that in the future, when I go to the magazine section, I’ll see three or four more magazines featuring kids from all walks of life!

How are you going to celebrate Emily’s newfound fame?

I’m going to spend the month going to different bookstores and groceries in the area, and taking pictures of the magazine on newsstands. And I’m mailing a copy to every doctor we’ve ever been to!

Love it! Liz, when you emailed me, you mentioned that January can be a hard time for you because it’s the month when you first learned you’d have a child with spina bifida. But this January, it seems like you’ll have much to celebrate, right?

Yes. It’s always been a tough couple of weeks, because I think back to those dark days of my pregnancy when so much was unknown. That was the hardest part. I wish I could have looked down the line and seen just a fraction of what life would be like. This is our normal. And Emily’s on the cover of a magazine showing the world that she defines spina bifida, not the other way around.

A-men.

From my other blog:

An interview with the editor of Parents about kids with disabilities in national magazines

Learn More: What Is Spina Bifida?

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