Archive for the ‘ Cerebral Palsy ’ Category

I Doubt Justin Bieber Faked Disability–But What Happened Still Hurt My Kid

Friday, July 25th, 2014

Gossip and entertainment sites were buzzing this week about fan sightings of Justin Bieber at Disneyland last Sunday, in a wheelchair, cutting lines. Fans shared social media photos, including the above, of the star. There was speculation that Justin did this to cut lines. There were other photos posted of him the next day, standing perfectly fine.

Let’s start with this: Celebrities do not need to “fake” disability because they can easily get preferential treatment at theme parks, and pretty much anywhere they go. Justin’s done a bunch of dubious stuff in recent years, but it just seems ludicrous to think he’d need to do this. TMZ reported that he was nursing a knee injury from basketball and only sat in the chair for a short time. They also noted that Bieber gets escorted in and out of the park, to avoid attracting a crowd.

Not that countless people haven’t tried over the years to pretend to be disabled. My husband knew someone, as a teen, who’d rent a wheelchair to cut lines at theme parks. Last May, the news broke that wealthy parents were hiring people with disabilities so they could bypass lines.

That abuse is one key reason Disney recently changed its policies for accommodating people with disabilities to a system that’s similar to Disney’s Fastpass one, in which a park attendant gives you a return time for a ride. So the second, and more key reason, this whole story can’t be true is that people in wheelchairs do not automatically get access to rides, or any additional leeway. Only wheelchair users who have behavioral or sensory issues or other disabilities might qualify for the Disability Access Service Card. But that wasn’t always the word being spread online. As The Wire said, “Everybody knows that Disneyland allows its disabled guests to cut the lines at any rides that can accommodate them, so, you know, congrats to Justin Bieber for FINALLY getting an advantage in life.”

Right. As if having a disability is ever an advantage. If you have a kid with special needs then you know what a constant uphill battle life can be.

The media is ready to jump on Justin Bieber for any move he makes, but it seems like he didn’t deserve this—and neither did people with disability. Bad reporting like this hurts kids like my son, because it spreads the misconception that people with disability “get away” with cutting lines. Some of them, like Max, dorequire accommodations at theme parks. He has cerebral palsy and can’t stand for long periods of times. He gets scared of crowds. I know of other kids with special needs whose bodies can’t properly regulate temperature, and so they can’t wait for long periods in heat.

Make no mistake: Accommodating our children isn’t special treatment—it’s leveling the playing field so they can enjoy parks in the same ways that other kids do.

From my other blog:

What I think when I watch my child sleep

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

Good summer fun: a reading under the stars party

 

Image: Twitter/SwaggyJB3914

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A New Bike Built For Kids With Special Needs

Wednesday, June 25th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

Jyrobike is the World’s First Auto Balance Bicycle that features a patented Control Hub in the front wheel that uses gyroscopic technology to keep riders upright, even when they tip or wobble.

Riding a bike has not come easily for my son, Norrin. After he was diagnosed with autism, we learned that he didn’t have the strength or the coordination to pedal. For years we’ve worked with therapists trying to build up Norrin’s muscle strength and teaching him how to balance. We’ve bought tricycles, big wheels and even scooters – hoping Norrin would be able to master one. Eventually Norrin learned to pedal but he still lacked the focus, tired easily and had difficulty maintaining balance.

Last spring, we bought Norrin his first real bike. And while he showed an interest in riding it, he still needed a lot of work. Even with the training wheels he still had trouble with balance and had difficulty turning. Now that bike is too small and we’re wondering whether or not we should buy another. Norrin will still need training wheels and it may be years before he learns to balance independently.

That’s when I heard about the kickstarter campaign for Jyrobike I knew I had to share it! It’s the ideal solution for kids like mine. “Jyrobike is built on the core principle that bikes become inherently stable at higher speeds because the faster the wheels spin, the more balanced it becomes.” While originally designed for 3 – 8 year olds, “one of [the company's] stretch goal rewards will be very popular with parents of older children.” There are also plans to launch an adult product.

Jyrobike will change the lives of so many families with special needs, especially kids with autism. It allows children to learn to ride a bicycle with confidence and a sense of security. It will provide the physical activity they need to maintain their health and it’s a social activity that can be shared with family and friends. Bike riding is a skill that can lead to a more independent life.

To learn more about Jyrobike visit http://www.jyrobike.com.

Catch up with last week’s post: How Not To Handle a Public Meltdown

And from my other blog:

 

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Meet The Robot That Could Be Your Child’s Future Butler

Tuesday, June 17th, 2014

Imagine this: Your child wakes up. Because of his physical challenges, he can’t make his own breakfast, but that’s not a problem. Because HERB (Home Exploring Robot Butler) does it for him, setting a kettle of water to boil on the stove, pouring orange juice and then stirring up oatmeal.

HERB has been in development for more than five years at Carnegie Mellon’s Robotics Institute, part of the Quality of Life Technology Center (QofLT). HERB is an exciting advance in the growing field of technology to help people with disabilities with manipulation and mobility. For my son, who has cerebral palsy, reaching up to a kitchen cabinet to get a cup is a near impossible task, ditto for grasping a remote control and pressing buttons. So robots like HERB are his future. As an article for CyberTherapy & Rehabilitation Magazine notes, HERB will provide assistance with meal prep, unpacking and storing groceries, cleaning dishes, light housework and organizing clutter. Down the road, HERB may help with transferring a person with disability from a wheelchair to a seat or helping someone after a fall. This is all accomplished via a range of sensors and advanced computer algorithm programming. You can see HERB in action in this video, along with a different robot in development:

Another robot with a less charming name, PerMMA (Personal Mobility and Manipulation Appliance), has been in the works since 2006 at QofLT. It’s basically a smart powered wheelchair with two dexterous robotic arms. Here’s PerMMA on a shopping trip:

HERB continues to make progress; he’s now figured out how to discover more than 100 home objects including items like foods and plants. Recognizing items based on vision alone in homes, which are filled with countless objects, is a major accomplishment. Not surprisingly, HERB snagged the Most Innovative Technology award at last year’s Robot Film Festival.

These robots aren’t yet available for sale and if they were, they’d most likely cost a bazillion dollars. But it seems very possible that they will inhabit homes in the near future and, as is this case with any new technology, be available (even rentable!) at a reasonable cost. In my son’s 11 years, I’ve already seen his world open up because of technology, thanks to his Proloquo2Go iPad speech app. I’m so, so excited for the assistance the future will bring.

From my other blog:

A thank you to Steve Jobs from a special needs mom

Why we can’t do the morning rush at our house

Max speaks his best sentence ever

 

Image of HERB via Carnegie Mellon’s The Robotics Institute

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A Kid Carries His Brother With Cerebral Palsy For 40 Miles

Wednesday, June 4th, 2014

Like many older siblings, Hunter Gandee, 14, likes to give his little brother piggyback rides. Over the years Hunter has carried Braden, 7, to the grocery store, on beaches and even up mountains. He does it for love, he does it for fun and he does it because Braden has cerebral palsy. Braden uses a walker to get around, but it doesn’t move easily on sand, mulch, grass or snow, or in crowded areas.

This Saturday, at 7. am., Hunter is going to start carrying Braden around—and he’s going to do it for 40 miles, to raise awareness about CP. The boys are calling their walk The Cerebral Palsy Swagger. They’ll leave from Bedford Junior High School in Temperance, Michigan, where Hunter is in eighth grade and the captain of his wrestling team. They’ll be accompanied by volunteers as parents Danielle and Sam drive ahead of them. The family will stop overnight in the town of Milan, and are planning to arrive at around 2:00 p.m. at the Bahna Wrestling Center at the University of Michigan in Ann Arbor.

Hunter got the idea for the walk after he roped in students to sell green Cerebral Palsy awareness wristbands for a dollar each, back in March; they raised $350 for the Cerebral Palsy Research Consortium of Michigan. “Hunter began to wonder how he could reach more people,” Danielle recalls. “A few days later, I had a dream about Hunter carrying Braden to Mackinaw City. We talked about it, decided that Mackinaw was not an option with our busy summer schedule, but agreed that the University of Michigan would be perfect! Braden has participated in studies there and received therapies there, Hunter plans on attending college there, it is a reasonable distance and we just love U of M! And so it all began.”

She acknowledges that carrying Hunter for 40 miles is a “challenge”—Hunter is in great physical shape but Braden is a good 54 pounds. Still, she continues, “it is meant to be difficult, exhausting but not impossible, the same as it is with Braden every day.”

Hunter is driven by a desire to help people get to know Braden—a goal I completely relate to as the mom of a child with CP. People often tend to see Max’s disabilities over his abilities, and it’s up to our family to help them meet the child behind the cerebral Palsy. Hunter is similarly determined, says his mom, “for people to see Braden’s strengths and value his abilities, but also become aware of his challenges and to see that a large part of what limits Braden is the inefficient equipment available today. He wants people to meet Braden, care for him, remember him and develop a desire to help him. Help by creating truly accessible public buildings, schools, playgrounds and mobility aids and equipment that are stylish, fun and work on all kinds of terrain.”

Danielle and her husband have two other children, and describe the relationship of all their kids as “typical.” As she says, “The fight sometimes, pick on each other, intentionally annoy each other, but they are also all best friends. Hunter makes sure Braden does his work. He doesn’t let him slack—he pushes him to be his best.”

Braden can’t wait to get going. He says, “I am excited about the walk, very very excited! I am happy I get to meet all the new people. The band is gonna play at Hunter’s school. And I am very excited to go to the University of Michigan and see the wrestlers! I might even get Kilwins Fudge! And I get to spend so much time hanging out with Hunter. I love my brother. He is Superman!”

He has no worries about the distance. “I like to be on his back,” says Braden. “I don’t have to get tired and he is very fast!”

They say you can’t know a person’s situation until you’ve walked a mile in their shoes. In walking forty miles, Hunter is going to help a whole lot of people better understand Braden’s world. Happy trails, boys.

You can follow the Cerebral Palsy Swagger on Facebook and Twitter.

Life with Cerebral Palsy
Life with Cerebral Palsy
Life with Cerebral Palsy

From my other blog:

The kindness of a neighbor that I will never forget

A note to the mom who stared at my child

10 things I didn’t know about cerebral palsy—until I had a kid with cerebral palsy

 

Images: Courtesy of Danielle Gandee

 

 

 

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Should Special Needs Moms Have Their Own Mother’s Day?

Wednesday, May 7th, 2014

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs  over at Atypical Familia.

With Mother’s Day approaching and Father’s Day next month, I am reminded of something my friend, Jessica, posted on Facebook. Jessica was having one of those up-and-down days only a special needs parent can understand. The mom of three kids, Jessica’s 9 year-old son has autism.

As I direct my son to pick up his chewed up and spit out pretzels from around the house for the umpteenth time today and have my sleeve tugged on yet again before I prompt him to tap and say excuse me, and hold him tightly to get him to stop hitting his own head, and then bathe in the sweetness of his beautiful smile when he tries to climb his 9 year old sized body into my arms, I do believe there needs to be a mother’s day specifically for moms of kids of special needs. Yes…parenting all kids is challenging. But sorry folks, on a day to day kind of level, it’s just not the same thing.

I don’t like to play the “hardship olympics.” But when I think about all the ways parenting a child with special needs is different…it makes my head spin. At the same time, I am still a mother and I’m celebrated on Mother’s Day.

I reached out to other special needs moms for their thoughts on whether or not special needs parents deserve their own day. Here’s what they had to say:

…Sometimes you feel like no one in your life acknowledges how much extra effort you have to put into everything, how much has been handed to you that you’re not able to do, and all the additional worries you have about your child’s future. It would be nice to have a day set aside to acknowledge that just once. [But] I don’t want my kids to feel that their differences are a reason we should be singled out as a family, whether it’s them or me. I am still trying to learn how to walk the fine line of celebrating what makes us unique and not focusing too much on what makes us different. — Jessica, Don’t Mind the Mess

I have mixed feelings on this. I do think we deserve props for all that we do as special needs parents–and we do a LOT. And then some! But I hesitate because there are times when I feel a gap between me and parents of typically-developing kids, and I’m not sure I’d like to further distinguish ourselves. One thing’s for sure: Our families should totally kiss up to us on Mother’s Day–and Father’s Day too! — Ellen, Love That Max

Being a mother to children with and without special needs, I definitely believe we deserve a day of our own. As a special needs parent you are faced with so many obstacles. A simple trip to the local park requires special planning and strategizing. A special needs parent has very little ”me” time. I think it would be great if there were a day to celebrate our hard work and accomplishments. — Lizette, Diary of a Loving Mom

I do not think it is necessary. We already have a general mother’s and father’s day. Let us continue to celebrate [special needs parents] in our own unique ways. There is really no need to have separate days. Right now my son can’t tell me I love you or Happy Mother’s Day, so I have to think outside the box on Mother’s day and remember that he loves me regardless. – Kpana, Sailing Autistic Seas

Whether or not you agree, this Mother’s Day (and Father’s Day), be extra nice to the special needs parent in your life. April was Autism Acceptance month – a time to raise awareness and acceptance for individuals with autism. Special needs parents need acceptance too. Just like we celebrate our kids for all that they do, sometimes special needs parents require the same recognition from their family and friends.

From my other blog:

Tell mom you love her this Mother’s Day with an “I Love You” bookmark.

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

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