Posts Tagged ‘ cerebral palsy ’

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:

 

Add a Comment

Caroline’s Cart: Shopping Made Easier For Kids With Special Needs

Wednesday, February 19th, 2014

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

Before I was a mom and before my son, Norrin, was diagnosed with autism I used to side eye the mothers who had their ‘too big’ kids stuffed into the seat of a shopping cart. I thought the kids were lazy and assumed the moms had no control. Now I know better.

I remember what it was like shopping with Norrin when he was younger and first diagnosed with autism. If I were with my husband, it was easier. If I was by myself, I’d either hoist him up and squeeze him into the shopping cart seat (knowing he had exceeded the limit) or struggle while shopping, holding his hand and navigating crowded store aisles.

Even now, at eight years old, we hold Norrin’s hand or stay close by. And those few seconds if/when he runs away and out of sight and I’m yelling his name scanning the aisles, are agonizing. I wish he could still fit in a shopping cart seat so that  I can run in and out without me having a heartache or him a meltdown.

The moment I saw Caroline’s Cart in my Facebook feed, I knew how important it was for special needs families. The cart was specifically “created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping, without simultaneously having to maneuver a wheelchair and a traditional grocery cart.

Some of the features of Caroline’s Cart includes:

  • The seat back has a five degree tilt for increased comfort for low muscle tone children
  • The seat faces the caregiver, so eye contact is easy to maintain, children with anxiety issues can watch the parent during the shopping trip, and children prone to seizures can be monitored
  • The platform below the seat provides a footrest for the child
  • An abductor in the seat helps keep the child upright
  • A harness helps to secure the child so parents have hands free to steer the cart and shop

While Norrin doesn’t require the use of a wheelchair, we could still benefit from Caroline’s Cart. Sometimes shopping can be overwhelming for kids with autism. Stores are sensory overload – people talking, kids crying, loud speakers crackling, shopping carts banging into displays. Caroline’s Cart would be especially helpful while at check out. It can be difficult to keep an eye on Norrin while I’m  trying to unload my purchases and pay.

I haven’t seen Caroline’s Cart in any of my local stores, but I’ll be looking. And I want you to look too. If you don’t see it and you need it, don’t be scared to make a call or send an email. Because it never hurts to just ask. It worked for this mom, it could work for you.

For ideas on what to do with the food after you get home from the grocery store, sign up for our weekly recipes newsletter!

Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect
Baby Care Basics: When a Baby Has a Birth Defect

image: screen shot Caroline’s Cart

Add a Comment

God Isn’t Healing My Child With Cerebral Palsy

Tuesday, July 30th, 2013

“Daniel Thomas suffered from Cerebral Palsy and seizures for most of his life, but he always believed God would heal him. Then one day God did.”

That’s the description for a popular video about a man born with cerebral cerebral palsy, created by the Christian Broadcasting Network. Daniel Thomas grew up with epilepsy, speech issues and fine-motor challenges. He met his wife, Cecile, at church and together, they prayed that God would heal the cerebral palsy and seizures. He says he began to “talk straight” and use his hands better.  Today, the video says, “Daniel is able to do things he only dreamed of before.” There’s no mention of whether he still has seizures and epilepsy. Here, see for yourself:

The video shows a “before” shot of Thomas struggling to pick up a glass of water. The “after” shows him strumming on a guitar. I remain unclear on whether that “before” was a recreation; they randomly happened to have footage of him picking up a glass of water?! More importantly, why does the video not make any mention of the doctors and therapists who have surely helped this man?

Skeptical: Oh, yes, I am.

I am all for prayers for our children.

I am not believing that this man’s cerebral palsy was healed by faith.

Messages like this may give parents hope, and we so need hope. That said, cerebral palsy isn’t a condition that’s medically curable—something parents like me who have kids with CP are acutely aware of.  Messages like this ignore (and even undermine) all the hard effort parents, therapists, doctors and teachers put into helping our children develop and work around their challenges.

My son, Max, had a stroke at birth. Doctors told us he might never walk or talk, that he could have hearing and vision problems, that he was at major risk for cognitive impairment. My husband and I prayed, but we also went all out helping him. “Get him as much therapy as possible,” the world-famous pediatric neurologist told us, and we did. We looked into enrolling Max in Early Intervention while he was still in the NICU. He started getting  physical therapy at one month old. We tried alternative treatments, including hyperbaric oxygen treatment and craniosacral therapy. At six years old, Max got a stem cell infusion at Duke University.

Perhaps Max is doing as well as he is in part because of a Higher Authority. We are definitely blessed that he has a whole lot of determination. But I know that Max is thriving because of the countless hours I have spent doing therapy with him, training him, encouraging him and coming up with ways to enable him. He walks pretty well because he learned how using a gait trainer; now, every morning, I strap his feet into orthotics and every evening, I strap his feet into night braces. He is finally feeding himself because I’ve repeatedly coaxed him to grasp the spoon and guide it to his mouth. He is putting together words on his speech app to form sentences because we practice all the time. This is all also thanks to Team Max—the doctors, teachers and speech, occupational and physical therapists who help him and show me how to best help him.

It is no miracle that Max is walking, communicates, is learning to read and is gaining independence; it’s years and years of work and dedication.

Me, I have never looked to God to “cure” my son’s cerebral palsy. I trust in the powers I possess as his parent to enable him and do what’s best for him. I have faith in Max’s can-do spirit. I believe in God, yes, but I also believe in us.

From my other blog:

Max gets his stem cell infusion

If my child could wake up without special needs

Top 20 reasons moms of kids with special needs rock

Image of “Miracle” sign and “Trust in You” sign via Shutterstock

Add a Comment

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

Add a Comment

What Will My Child Be When He Grows Up?

Monday, July 8th, 2013

Max does not currently have career aspirations he’s yet shared with me. I’m pretty sure he’d like to work at Carsland, but given that he is only ten years old and his obsession with all things Lightning McQueen might end before adulthood, I can’t be sure.

I have so much optimism for Max, but I also have realism and so I believe his career choices might be limited by the disabilities he has from the cerebral palsy. Still, I am constantly awed by the accomplishments of others who also have CP. Last week, there were two: a 16-year-old with athetoid cerebral palsy, Natasha Lambert, who crossed the English Channel solo, steering her yacht with a mouth device. Then I read about Steph Hammerman, a 23-year-old  who recently became the world’s first CrossFit trainer with cerebral palsy.

As Steph tells it, during college she put on weight and began working with a trainer. Eventually, she got into hand-cycling, racing competitively. Bitten by the fitness bug and seeking to grain strength, she looked into CrossFit and fell in love. Recently, she became the world’s first certified CrossFit trainer with cerebral palsy. As she said, “There’s no reason in this world that people have to say they can’t do something. If somebody really wants to do something, they’re gonna find a way to make it work.”

As much as I love hearing that, as much of a cheerleader as I am for Max, I am not convinced he will be able to do anything in this world. A surgeon? I’d say no, given his fine-motor challenges. A glass blower? Ditto. True, technology is ever-evolving and who knows, maybe when Max gets older there will be robots and machines that perform all kinds of surgery and create glass by pressing buttons. Right now, I feel confident that there will be a growing number of resources as he gets older, optimism that he will find his place, and inspired by others out there with special needs who are blazing trails for him and other kids.

From my other blog:

Totally awkward parent moments

Top 20 reasons moms of kids with special needs rock

When your child is finally able to entertain himself

Image: Screenshot/kltv video

Add a Comment