Archive for the ‘ Children With Special Needs ’ Category

A Dad Runs A Triathlon With His Little Girl With Cerebral Palsy

Tuesday, October 14th, 2014

Months ago, I heard a wonderful story about an Atlanta family with a child who has cerebral palsy. The father, Pascal Gouteix, likes to run triathlons and wanted to take his three-year-old, Julia, with him. They had just moved into a new home, and the equipment was expensive. Their story has not one but two happy endings. Here, Pascal and his wife, Kelly—who blogs at Where There’s A Wheel, There’s A Way—share what happened.

So, I know there’s a special story behind how you first got the equipment—please share!

Pascal: For a while now, I was thinking about doing triathlons with Julia but did not know the right people nor had enough knowledge about what type of equipment to get. I found someone in Colorado with whom I connected. He does triathlons with special needs kids as well. He made some recommendations but this was all rather expensive. My wife is great at listening and remembering what I say. She answered an invitation to submit my story to a radio show named The Bert Show. When she found out we were going to be invited and was asked info about the equipment, she somehow found the contact info for the person in CO to get the info about the equipment. And that is exactly what The Bert Show/Fragile Kids Foundation provided us with. Such a blessing.

Kelly: I’m never the kind of person that randomly calls radio shows, so when I sent the email late on the Tuesday before Father’s Day, I was not expecting to hear from them. You could have knocked me over with a feather when their producer called me the next afternoon. Their host, Bert Weiss, has a nonprofit that takes chronic and terminally ill kids to Disney World every year, and I think this was just another way to show how these families are close to their hearts.

How did you train for the triathlon? 

Pascal: While at The Bert Show, a gentleman by the name of Brent Pease was invited to speak to me on the phone. He works for a company that provides equipment to triathletes and is one of them himself. He created a foundation in the name of his brother named Kyle (The Kyle Pease Foundation) that raises awareness of cerebral palsy and helps families like ours to help our members with CP to enjoy life through sport. He provided me with a lot of useful tips on how to train and use the equipment. I live in a neighborhood where there is a large swimming pool. I trained early mornings there, along with a good friend of mine who ended up doing the triathlon with us. For the bike and the run, I would do that in the evenings and weekends at the Silver Comet trail not far from our house.

What was Julia’s reaction to the training?

Pascal: She loved it. We found out that being outside, the wind and sun on her face, calms her down and makes her feel happy. We both laughed a lot.

Kelly: It was so neat to see how much they enjoyed their training together. Julia would immediately start smiling as soon as she was situated, because she knew she was in for some quality outdoor time. Pascal tells me that she giggles a lot when he starts huffing and puffing.

What most surprised you about doing the triathlon with Julia?

Pascal: Not necessarily the event itself. But feeling like I was part of a family. The Kyle Pease foundation is composed of families like ours, with special needs children. The wonderful feeling of being understood and cheered on made all of us feel very good that day.

Kelly: By far, the connections we have made with like-minded families in the Atlanta area has been the best part of all of this. It’s so nice to meet other families living with hope instead of fear, and it has been amazing for us to get to spend lots of time with adults who have CP and are living happy, productive lives.

What were you hoping to achieve in doing the triathlon?

Pascal: Make my daughter happy. Also, show our other two children (Emilie, 11, and Jeremy, 9) that doing a sport activity can only be beneficial, and that we are not the only ones living with someone with needs like Julia. These past years have been difficult especially for them since my wife and I have been so focused on Julia. It was good to see them smile, and engage with the other families, creating ties. This was my first triathlon with Julia of a long list, I hope.

What was the most challenging part of the triathlon?

Pascal: The bike ride. Especially because that is the part for which I did the least amount of training. There were a few rough hills and I could feel the weight of Julia and her trailer. I motivated myself by reminding myself how she fought for her life the first few weeks after she was born.

Kelly: As a mother, I was terrified when he took her out for the swim. I was convinced the boat was going to tip over or something. Kyle Pease told me his mom had an identical reaction the first time he raced with his brother.

How did people cheer you on?

Pascal: People were very encouraging, congratulating me for what I was doing. I was particularly touched by a woman who had a beautiful smile and tears while looking at us before we started the swim portion of the event.

Kelly: We had quite a few random strangers take pictures of our family or of Pascal and Julia. There were multiple families from the Kyle Pease Foundation competing that day, and it was fun to see how everyone encouraged each other!

What is your greatest hope for Julia?

Pascal: That someday she can see us, what we look like, our smiles. In addition to CP, she has cortical visual impairment. Mostly I hope that she has a happy and rich life, no matter how physically challenged she may be.

Special needs families: Not so different from other families

Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs
Cerebral Palsy: Challenges and Triumphs

Images courtesy of the Gouteix family

Add a Comment

What Kids Want To Be When They Grow Up: A Fascinating Poll

Tuesday, September 30th, 2014

The number-one job kids would like to have they grow up: superhero. That’s per a new poll of 3910 adults who are parents to children under age 10. Other career aspirations that top kids’ lists (in descending order): celebrity, doctor, President of the United States, teacher, prince/princess, astronaut, chef, police officer and Santa. (Apologies, Santa.)

The majority of parents, 65 percent, said they would like their children to someday follow in their career footsteps. Parents noted that the top things they believe are influencing their kids’ ambitions are TV shows and movies.

Both my kids think they know what they want to be when they grow up. Actually, with my son, it’s more like an obsession. We are not sure how or why Max decided on a career as a firefighter, but he talks about it all the time—and wears a plastic Fire Chief hat as often as he can (school and bathtime excluded). Max may have disabilities, but who am I to discourage him? Perhaps, someday, there will be a position for him in a fire department. For now, he is content to visit our local fire station every weekend. This past weekend, we took him to the FASNY Museum of Firefighting in Hudson, New York, and it was like he had reached nirvana, so blissful was he.

If I had answered that poll, conducted by Coupon Codes Pro, I would have said that parents are most likely shape their children’s career aspirations. My daughter wants to be a writer and editor when she grows up, just like Mommy. She’s started her own blog, and posts when she feels like it. I have to admit, I love it. I saw it coming: Back when she was little, one of her favorite games was for me to write out sentences that had spelling errors, and then she’d fix them with a pencil.

Whatever my kids do when they grow up is going to be fine with me, because it’s not something I can control. I do not know what the future holds for Max, both in terms of his development and the kind of work options that will exist for people with disabilities years from now. I do not know what my children’s interests will be when the time comes for them to choose jobs. Right now, I’m glad they’re taking an interest in work. Whatever career they ultimately choose, I just want them to be happy. 

From my other blog:

Special needs families: Not so different from other families

Those moments when you feel the weight of special needs parenting

What it’s like to live with a hidden disability

Add a Comment

A Happy Ending For The Sick Baby Facebook Dissed

Tuesday, September 23rd, 2014

Yesterday, a miracle happened: Hudson Bond, 9 weeks old, received a new heart. He and his parents have been through a lot in his short life—including some emotional turmoil wrought by Facebook.

When Hudson was born in July with cardiomyopathy, a type of heart disease, doctors told his parents that he’d need a transplant. So his father, Kevin Bond, did what many parents of sick kids do: He created a Facebook page. Kevin hoped that Hudson’s Heart would spread the word about his son’s need for a new heart and raise funds for expenses. One day, he decided to pay Facebook $20 to “boost” a photo of his son lying in the Pediatric Cardiac ICU at Duke Children’s Hospital. Only Facebook rejected the photo.

As Bond wrote on Hudson’s Facebook page, “Facebook thinks my son is offensive.” He went on to share the message he’d received: “Reason(s): Your ad wasn’t approved because the image or video thumbnail is scary, gory, or sensational and evokes a negative response. Images including accidents, car crashes, dead and dismembered bodies, ghosts, zombies, ghouls, and vampires are not allowed.”

Bond was shocked. Attempts to appeal the decision didn’t work, he said. “Facebook, you should be ashamed of yourself,” he wrote. “Of all the garbage you endlessly pedal all over the Internet, a picture of my son is where you draw the line? Disgusting.”

As word began to spread, a Facebook spokesperson issued a seemingly heartless statement: “This was a mistake on our part, and the ad has been re-approved. We apologize for any inconvenience this caused the family.”

The response wasn’t enough for Kevin Bond. As he said, “Inconvenience was never an issue. Having my beautiful son compared to dismembered bodies, vampires, zombies, etc. hurt me, and my family.” Facebook eventually called and explained that an “automated system” blocked the image, then offered $10,000 in free ads.

Baby Hudson isn’t out of the woods yet; doctors are monitoring him to make sure his new heart is working well, and that no complications set in. But he is a lucky kid. As Kevin Wrote yesterday, “He’s a brave little boy, with a brave new hrart, from a brave family suffering an unspeakable loss. From our family to yours, wherever you are, we love you. Please join us in praying for comfort, light and healing.”

Despite Facebook’s major gaff, ultimately social media has done good: People have contributed $141,960 to date on Hudson’s Children’s Organ Transplant Association page alone, plus additional money through other fundraisers. The family plans to donate any extra money to families of children in need of organ transplants.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

The best bike ride of my son’s life

Exactly how to deal if you think your kid has lice


Images: Facebook, Hudson’s Heart

Add a Comment

When People Named Kanye And Kim Can’t Include People With Disability

Thursday, September 18th, 2014

By now, you’ve probably heard about the recent Kanye West incident. On tour in Australia, he asked his audience to stand up—unless, he said, “You got a handicap pass and you get special parking and s**t.” When a couple of people in the audience didn’t get up, he singled them out until it was confirmed that they did, indeed, have disabilities and could not stand up and dance. Then the concert went on.

Much social media outrage ensued. Disability rights groups in Australia demanded an apology. Kanye’s response: He played the victim. “I’m a married Christian man with a family,” he proclaimed to an audience. “At my concerts, I make sure everybody has good of a time as possible, so all this demonizing me it ain’t going to work after a while.”

Not surprisingly, wife Kim Kardashian had an equally weak defense. She posted a video of his performance on Instagram and wrote, “What an amazing Australian tour! Its frustrating that something so awesome could be clouded by lies in the media. Kanye never asked anyone in a wheel chair to stand up & the audience videos show that. He asked for everyone to stand up & dance UNLESS they were in a wheel chair. #JustWantedEveryoneToHaveAFunNight #TheMediaTwistsThings”

This is hardly about Kanye mistakingly calling out people with disabilities in the audience. And clearly, this isn’t about some well-intentioned singer getting bashed for no reason. It’s about him publicly leaving out people with disabilities. Think about it: How would any one of us feel if we were one of thousands in an audience and everyone was asked to engage except us? Couldn’t he have at least said, “And if getting up’s not your thing, wave your hands in the air” or something like that?

Kanye and Kim are not exactly models of empathy and goodness, but still, their mindsets aren’t uncommon. I’ve seen this as the mom of a kid with cerebral palsy. Forget about people refusing to accommodate Max—they just don’t think to include him, whether it’s kids playing a game at a party or on the playground. It’s often up to me as his mom to pave the road for him. I am always standing by, but I ache for this sort of inclusion to happen naturally.

One good thing to come out of the Kanye kerfuffle: It’s getting people talking about how we treat people with disabilities.

From my other blog:

A kid for just a little longer: The joys of parenting children with special needs

On not hoping too hard that your child will develop

What’s that perfume I’m wearing? Eau de Pee


Image of Kanye West via Shutterstock

Add a Comment

Autism and Birthdays: 5 Ways Elf on the Shelf Can Help

Wednesday, September 17th, 2014

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

We adopted “Elfie” two Christmas’ ago. Our Elf on the Shelf really helped Norrin understand the magic of Christmas. Norrin knows it’s September and he’s already started giving me his Christmas list. I love that Elf on the Shelf has been a part of his understanding of the holiday season.

When I heard about Elf on the Shelf: A Birthday Tradition – I knew it was something I wanted to do with Norrin.

Tomorrow is actually my birthday. When I was talking to Norrin about it he immediately started reciting his birthday wish list. I explained to him that on my birthday, I get presents – not him.

Norrin will be nine in January and birthdays have always been tricky for us. We haven’t had a birthday party since he turned three. It’s easier to celebrate in school. And January is always a hard month to plan for since the weather in New York can be unpredictable. But we still want his birthday to be special and build anticipation to the day. I know Elf on the Shelf: A Birthday Tradition will help!

Now I know some parents are hesitant about Elf on the Shelf and feel the Pinterest pressure. But Birthday Elf is super easy and fun.

The Elf on the Shelf®: A Birthday Tradition tells the little-known story of how Santa’s finest helpers celebrate birthdays at the North Pole—and how you can invite your scout elf to share that tradition with YOU! Each kit includes special instructions for inviting your scout elf for a birthday visit, and a festive birthday outfit for your scout elf to slip into before the big day! Also available—the Birthday Countdown & Game and the Birthday Chair Decoration Kit.

5 ways Elf on the Shelf: A Birthday Tradition Can Help Your Child With Autism Feel the Birthday Magic

Build Anticipation. Unlike the holiday season, your Elf appears only on the day of your child’s birthday. You can use the Birthday Countdown & Game (or any other calendar) to count down the days until your child’s birthday and their Elf arrives. It gives kids something extra to look forward to.

Understand Birthdays. Many kids – including my own – have difficulty understanding that everyone has their own birthday. If you have more than one child in the home, the Elf – along with the Birthday Countdown & Game – can be your family’s way of distinguishing birthdays.

Sparks Imagination. Imaginative play doesn’t come naturally to Norrin. But he is getting so much better! Still birthdays can be such an abstract concept for him to understand.  We’ll read the book, talk about Elfee and birthdays. It all helps to connect the dots.

Communication & Storytelling. While counting down, talk about the days of week, talk about the months and other family member birthdays. Talk about your pregnancy and how excited you were the days leading up to your child’s birth. Talk to them about the day they were born – even if you think they won’t understand. Let them hear the story.

Feel Special on Their Day. I love the idea of the Birthday Chair Decorating Kit along with the Elf because it really makes a kid feel special. We don’t have big birthday parties for Norrin and I’m not the mom to go crazy with decorations. The Birthday Chair Decorating Kit is easy and fun. It’ll be nice that we can do something a little extra to celebrate.    

Catch up with last week’s post: Prompting Conversation and Communication With An Autistic Child

And from my other blog:


Add a Comment