Posts Tagged ‘ Down Syndrome ’

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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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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Send Cheer To A Little Athlete With Down Syndrome

Tuesday, May 6th, 2014

This is Macy, age 4. She participates in the Special Olympics’ Young Athletes program for children ages 2 1/2 to 7. She’s loving it—and her parents are, too. When they saw her finish her recent first dash, they realized just how much she is capable of. Check out this video:

In 2012, more than 90,000 kids with intellectual disabilities around the world participated in sports training and Young Athletes programming. It focuses on activities that are important to both physical and cognitive growth; kids participate in games and activities that develop motor skills and hand-eye coordination. Parents say the program helps boost social skills, too. Also: They have a whole lot of fun. Which, after all, is every kid’s quintessential right.

Special Olympics is inviting people to send little Macy notes of encouragement. Just click here, and send her some good cheer. It’s that easy.

Go, Macy, go!

For more information on Young Athletes, click here.

From my other blog:

Finding a caregiver for a child with special needs: 12 key tips

Does the punishment fit the crime for this special needs bully?

When friends don’t get your special needs life: group therapy

 

Images courtesy of Macy’s family

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A Teen With Down Syndrome Goes To Prom With Her Crush

Tuesday, April 22nd, 2014

Here’s a story that made Ellen DeGeneres’s Good News page: A senior at Arrowhead Union High School in Hartland, Wisconsin had a crush on a guy she’d gotten to be friends with on the school bus. Pretty typical, eh? The teen, Stephanie Kaye, happens to have Down syndrome. Her crush, Ed Brandenburg, heard that she had a thing for him.

Ed had never before been to prom, but asked her mom’s permission to take her. Then he approached Stephanie in the school cafeteria with a bouquet of flowers and popped the question. Everyone cheered. You can see Stephanie’s excitement in the video on Yahoo! Shine.

“She’s been asking me to homecoming over the years and I never took her offer very seriously,” he explained. “But this year I decided to make her last memory of me before I go to college special by taking her to prom…. She always has been the important one in the friendship.”

I think this is really sweet. But as a special needs parent, I also felt concerned. I don’t know anything about Stephanie’s social existence, but in the video she was sitting alone during lunchtime. Does she have a good social life? What happened after the prom? Did this guy start hanging out with her at school? Did people start sitting with her at lunch?

One-time bliss hits like this definitely make for lasting memories. And they make everyone involved feel good, too. For my son, though, I dream of more. I want peers who accept Max as he is, not just on special occasions but year round. I want him to get asked out to events not just because people feel it’s a “good” thing to do but because they genuinely want to. I know how lonely being a kid with special needs can be because I see it. My son attends a school for kids with disabilities but when we’re in social settings, like at the local park, kids ignore him unless I initiate conversation.

Kind gestures like this end up being just that: gestures, as sincere as they may be. There is no easy answer, but it starts with parents and teachers helping typically-developing kids understand when they are young that youth with special needs are, in many ways, just like them. Our kids and teens want to enjoy life as much as any others—and, yes, they’d like to go to the prom.

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

From my other blog: 

50 ways kids with special needs are totally typical

When special needs moms know better than the experts do

Parents magazine makes special needs history

Screen grab, Yahoo! Shine video

Image of woman wearing wrist corsage via Shutterstock

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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.

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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

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