And the best Video of the Year Award goes to…”Ob-La-Di, Ob-La-Da,” as sung by my son and his music therapist, Amanda. You read it here first!
Watching Max sing with her is always a treat. This past year the two of them rocked “Let It Go” and “For The First Time in Forever.” But when she got him to do a Beatles song, well, I melted. It is such a thrill to hear Max belting out a song I grew up with and loved.
As a special needs parent, you often have to give up on dreams that your child will savor the same childhood pleasures that you did. I’m talking about things big (like swimming) and small (holding and licking a lollipop). Early on, this can really bum you out. Eventually, though, you come to understand—and accept—that your child will enjoy stuff in his own way. Or he’ll do different things and have fun, too. Max may not be able to swim, but he’ll walk around the pool in knee-deep water, crouched over and pretending to swim, and that makes him happy. Max may not be able to hold and lick a lollipop because he doesn’t yet have that coordination, but this kid has gotten darn good at clutching a cupcake (chocolate, please).
And so what if Max can’t say all the words in the song? He’s carrying the tune admirably, and he’s a charming performer. So, without further ado, Best Video of the Year. Sorry that Beyoncé was not available to present it.
Angelique Bedwell, a single mom, used to have an SUV that she used to transport her 13-year-old, Jason, who has cerebral palsy. Then it got stolen from their apartment complex in Grand Prairie, Texas. When police found it a day later, it had been stripped.
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.
Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy. Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.
One woman leading the charge: Cynthia Frisina, executive director and founder of Reaching for the Stars and mom to a daughter with CP. Her non-profit recently co-funded research at Kennedy Krieger and Johns Hopkins that showed the brains of kids with CP have more plasticity—and potential for recovery—than previously believed. In March, Cynthia testified before Congress to push for more funding for CP research. Now the 2015 Committee on Appropriations is urging the National Institutes of Health to develop a five-year strategic plan for CP prevention, treatment and cure, and pushing the Centers for Disease Control to build on research methods. As Cynthia says, “Never before that we know of have the words ‘prevention, treatment and cure’ ever been used in conjunction with cerebral palsy in U.S. federal legislation. This is a tremendous step forward.”
Also on the frontier of the research landscape: The CP Genetic Research Network. Principal investigator Michael Kruer, a pediatric neurologist and CP genetics researcher, answered some questions:
Dr. Michael Kruer
In a nutshell, what’s known so far about the genetic component of CP?
Genes are the DNA “recipe” that contain the instructions needed to build a human being. Some control things like hair or eye color. Others are critical for brain development. Cerebral palsy genes fall in this latter category. If a gene is missing or if the genetic code is incorrect, (a “mutation”) this can alter the blueprint and affect that gene’s function, disrupting neurodevelopment. Mutations can arise in many ways. Most participants in our study do not have a family history of CP, but some do.
To be quite honest, there is more that we don’t know about CP genetics than we DO know.
• We do know that out of the 25,000 or so genes in the human body, mutations in just one gene can cause CP in many cases. Current estimates indicate that literally dozens of genes that cause CP are waiting to be discovered.
• Another thing we do know is that of the handful of CP genes known, several map to the same pathway. Our studies indicate that these genes control the way brain cells connect to and communicate with each other. In the laboratory we have begun testing compounds that can improve these connections with very promising results.
What are you still hoping to discover about the genetic component of CP?
The goal of the CP Genetic Research Network is to transform the state of the science in CP. Our efforts will allow us to discover new genes as the cause of CP in our participants. For any participant, if we discover the cause of their CP, we can share that information with them if they wish. Some genes are likely to map to the CP pathway we have already identified. Others will point us in exciting new directions.
Could this prevent cerebral palsy down the road in unborn infants?
We’re not yet at this point with other offers, but other research in CP is aimed at this.
How will pinpointing genetic causes of CP be of help to future generations of children?
Through these efforts we seek to develop completely new ways to treat CP, not by treating symptoms but by targeting the underlying neurobiological problem. We will be able to develop completely new medicines, targeted to treat what goes wrong in cells rather than symptoms. We will accomplish this by better understanding the biology of the disorder.
How could knowing the genetic causes of CP help kids who currently have the disorder?
For many families, there is a sense that there is SOMETHING that caused their child’s CP, even if no one has been able to able to identify what that is. Some might even think that the cause is known, but in retrospect, there might be more to the story. Our studies are hoping to bring closure to what for some has been a long journey, filled with many office visits and tests. So, we may be able to offer answers as to WHY. Some parents have told me such answers can help them shake off years of unfounded guilt.
I know you’re recruiting for your study. Can you share more about it?
We want to understand what causes CP, and we are targeting those with CP of unknown origin—no premature, no known stroke—with the belief that many of the participants, children and adults, will have a mutation in a single gene that lead to their CP. We will provide an individualized, state-of-the-art evaluation of their genetic code and compare their code with that of their healthy mother and father. On an individual level, for many participants this will allow us to determine the cause of their CP. On a larger level, we think that many people will have mutations in the same genes and that these genes will converge on common pathways that shed new light on brain processes that lead to cerebral palsy when something goes wrong.
In order to enroll, both parents and their child with cerebral palsy need to participate in order to get the most information possible. There is no age limit as long as all three participate. Participation is simple. We send a study kit directly to your home and a swab is brushed on the inside of both cheeks. The samples are then simply dropped in the mail. To get more information, those interested should contact our study coordinator Jessica at firstname.lastname@example.org. There is no cost to participate but enrollment is limited to the first 100 parent-child trios. Those who enroll by October 3 will receive a free gift card for their time.
Head on over to the World CP Day website and post an idea for something that could change the world for your child with cerebral palsy or others who have it—think a product, technology or service. I encourage you to nominated Reaching for the Stars as your charity/organization, because the organization whose supporters share the most ideas before October 31 2014 will win $10,000.
The bio for 2014 Eastern Colorado Roundup Queen Skyler Baker reads like one for any teen who’s a ring master: Skyler Baker has been rodeo-ing since age three. The 16-year-old enjoys traveling to shows and meeting new people. She’s learning how to rope. She has a 3.6 GPA. She’s enjoyed representing Colorado as Queen; she’s learned that children look up to her, and that it’s important to be the best she can be to set a positive example.
What her bio doesn’t mention: that she has cerebral palsy. And I loved that, more so than reading about how her town says there’s no one better to represent their “grit.”
Too often, the press plays up the accomplishments of people with disability as inspirational or who, as the caption on a video about Skyler notes, “show what tough really is.” To be sure, parents like me who have children with cerebral palsy admire the accomplishments of adults with CP because we hope our children grow up to achieve their own maximum potential. To be sure, kids like Max have to work harder at doing stuff. Yet in general, the portrayal of people with disabilities as being exceptional because of their abilities does them an injustice. They may have challenges to overcome, but like anyone they have their own special talents and, as in Skyler’s case, athletic abilities. Skyler is an amazing equestrian, period, cerebral palsy or not.
As Skyler says, “I don’t feel different. I’m unique, just like everyone else.”
This cowgirl’s cerebral palsy does not define her. If only more people thought of kids and adults with disabilities that way.