Inspiring Kindergartners With Cerebral Palsy Compete In Race

October 12, 2012
By Todd Civin 

As I begin to get up in years, having just crossed the half a century mark, it brings me immeasurable joy each time I witness the next generation begin to play a positive role in shaping our future.

As a close friend and fan of famed father and son triathletes, Dick and Rick Hoyt, I often wonder if there is an inspirational team waiting in the wings to carry forth the message of inclusion, acceptance and disability awareness that Team Hoyt has etched into our society over the past three decades.

Despite the fact that Rick Hoyt was born as a spastic quadriplegic with cerebral palsy, he has been pushed, pedaled and paddled to the finish of nearly 1,100 athletic competitions by his father, Dick, to the amazement and pleasure of fans around the globe.

So it literally sent shivers up my aging spine when I learned of the inception of a young running team that has been affectionately referred to as, “The Protégés.”

Unlike the Hoyts, who are now age 72 and 50 respectively, the Protégés barely register on a calendar, at age six and five. That’s right.  The heirs to the inspirational throne are barely old enough to attend grammar school and yet are lacing them up for a mile run together this November 10 in Norfolk, VA.

Like the Hoyts, the Protégés race with one teammate acting as the pusher and the other covering the miles in a wheelchair, taking in the sights and sounds of the adoring crowd, yet every bit as much the athlete from the starting gun to the finish line.

Jayden Nogueras, age six, attends the Peebles Elementary School in Bourne, MA, and despite the fact that he was born with Chromosome Disorder of 1p36 Duplication, Cerebral Palsy and Septo-Optic Dysplasia, he will be serving as the pusher. His five-year-old best friend and racing partner, Elson Martinez, will be enjoying the ride from his specially designed running chair.

Elson was a preemie born at 32 weeks in April of 2007. He was 14 inches long and weighed 2 lbs 15 oz. at birth. Elson spent the first six months of his life in neo-natal intensive care before being transferred to the step down unit where he stayed until December 24, 2007.

He spent Christmas at home, but after only two weeks was readmitted until June 2008. Elson endured 13 surgeries in his first year of life. He had to have half of his intestines removed because they did not form correctly, causing blockage.

Elson had a VP shunt and a VA shunt placed due to his Aqueductal Stenosis not properly forming. He has had several revisions to the shunts. Elson has been diagnosed with Hydrocephalus, Absence of Corpus Calosum, Seizure Disorder, Cerebral Palsy, and Developmental Delay. He currently attends kindergarten at Pembroke Elementary.

“Jayden stated last school year, he wants to be a ‘Team Hoyt pusher’ shared his mother, Mary-Liz, who together with her husband, Jose, recently founded my Team Triumph Cape Cod (mTT-CC), a running team comprised of Captains (riders) and Angels (pushers).

Jayden was the inspiration and motivation for the formation of mTT-CC. “Then jokingly, we asked him who he was going to push because he’s so small and many of the other riders are bigger and older than him. He then responded, ‘Elson is small, too. I can push Elson.’”

Jayden, who stands all of 42 inches tall and tips the scale at a feather-like 36 pounds, began his racing career in 2010 with Team Hoyt Virginia Beach as a rider (captain). It wasn’t until May of 2011, while visiting the Hoyts at their home in Holland, MA that he vacated the chair and traversed a 50-yard dash course on his own.

At that point, Jayden became a “running junky” and began training daily to increase his speed and stamina. In July of that year he entered and completed the One-Mile Allen Stone Kid’s Run in Virginia Beach, VA.

Elson, who is confined to a wheel chair, is currently a “captain” for Team Hoyt Virginia Beach, where he is normally pushed by either his brother Ruben or friend and fellow Angel, Dena Goble.

In preparation for the Norfolk’s Freedom Warrior Trot 1 Mile Run, Jayden’s father, Jose is making some slight alterations to accommodate the diminutive racing team.

“We put smaller wheels on our running chair and we are talking to bike shops about the best way to lower the handlebars,” explains Nogueras, who serves as a Supply Petty Officer 2nd Class in the U.S. Coast Guard stationed at Otis Air National Guard Base in Buzzards Bay, MA.

“Jayden believes that he is now that much closer to becoming a real Team Hoyt pusher. We have to thank Team Hoyt VB’s Dennis Welch for being his initial motivator and inspiration.”

“Jayden motivates me to keep working on my running,” adds Nogueras. “I never ran or liked to run before Jayden. It’s good to see Jayden get excited about crossing the finish line and buying new running shoes.”

Jayden’s extremely proud and supportive mother, Mary-Liz, continues, “Running has played a huge role in Jayden’s self-esteem. He is also learning many life lessons such as goal setting and overcoming adversity. I think running has made him more resilient.”

To encourage and support Jayden and Elson’s run, please visit The Proteges Donation Page. All donations will help support my Team Triumph Cape Cod. Jayden and Elson have established a goal of $2000.

myTEAM TRIUMPH is an athletic ride-along program created for children, teens, adults and veterans with disabilities who would normally not be able to experience endurance events such as triathlons or road races.

For more information on Cerebral Palsy please visit:
http://www.cpfamilynetwork.org

The Triumphs and Challenges of My Teenage Years

By Crystal McClure
Writing for the CP Family Network
In my last blog, I wrote about what it was like growing up with cerebral palsy. That story primarily concentrated on my elementary school years. As any adult knows, the middle school and high school years can often be the toughest, especially for children with disabilities. I decided I wanted to share my experiences and the lessons I’ve learned in order to encourage others to persevere through the hurdles they face as a teenager.

Middle School

The transition from elementary to middle school was not as difficult as I had expected it to be. I was going to a brand new school just like everyone else. I reconnected with a few people from my pre-school days at Spring Creek who also have disabilities and use wheelchairs, walkers etc. It was a comfort knowing I “wasn’t the only one.” I became really good friends with Alex Kanavos in the sixth grade. He also has Cerebral Palsy and uses a wheelchair. We still talk to this day.

Near the end of my sixth grade year, I went back to Shriners Hospital in Kentucky, where I had 2 weeks of physical and occupational therapy. I learned how to dress myself, transfer to and from bed, and also how to go to the restroom on my own with someone just there to spot me. This was a big accomplishment in my life and still remains so. It was freeing knowing that I did not have to ask for help to get dressed and that I could do things on my own like any other 12 year old.

However, bathroom breaks proved to be one of my troubling times in middle school. It seemed as though I always had to go at the wrong time. The aides were eating lunch and would ask that I return at a later time, or my teacher didn’t like the time I chose because it was near the end of class. I was allowed to leave class 5 minutes before the bell rang for class change. Sometimes, this still wasn’t enough time to go to the bathroom and get to class in time to get settled. Why? I was not able to use the bathrooms in our wings (each grade had their own hallway). I had to go to the Multi-Handicap room, which was in the middle of the school, to use the restroom. Going into class late was not only an embarrassment for me, but also a disruption to the class as a whole.
Overall, my middle school experience was great with the exception of the bathroom issues. I am grateful that I was able to take those two weeks at Shriners to become more independent. Not only did I learn to do a lot on my own, but it helped shape me into a strong-willed person and gave me high confidence and self-esteem.

High School

High school, on the other hand, proved to be a bit more challenging. I still attended school with many of the same people from both elementary and middle school, but my freshman year we also combined with a school from Chattanooga. I still had the same friends and made many acquaintances along the way. I didn’t have the bathroom issues like I did in middle school, thank goodness.
My main issue in high school was other people. I was bullied. Nothing severe but nonetheless, it is still what I consider bullying. I was trying to go through the cafeteria one day to get to the lunch line and there were students in my way. I said, “Excuse me” three times and no one moved. I then proceeded and blew the horn on my power chair to let students know I needed through. When I did this, a girl got in my face and said some profane words along with telling me I did not have the right to use my horn. There were a couple other instances my Freshman and Sophomore years, but they were addressed by teachers and staff.
One of the most sobering moments of my high school years was not being able to attend my Junior Prom. It was set on a local riverboat which was not handicap accessible. My mother and several teachers I had grown to know well made sure that my Senior Prom was accessible for me. I had my own kind of Cinderella story that night, as in I was home when the clock chimed 12!
My Senior year in itself was probably the one I enjoyed most, but not without some flaws. During the last half of my Senior year I had enough credits to be able to only attend school for half the day. I had no way home in the middle of the day so I chose to attend half-day vocational school. I chose to be in the Graphic Design class there, which ended up being somewhat of a nightmare. I was not able to use the machines to learn anything. Because of this, the teacher just sat me in front of a computer and asked that I write a book about myself. I did this for a while, then quickly realized it wasn’t what I went there for and in essence I was being discriminated against. I addressed this issue with the staff of the school and  they placed me in Cosmetology where I finished the rest of the year.
Graduation day, May 17, 2002, was one of my proudest moments. I am the first person in my family on my Father’s side to receive a high school diploma.

Lessons Learned

Even though there were some rough patches during those seven years, given the opportunity I wouldn’t change them. I learned how to become my own person, and how to persevere and push on through tough times. For this, I am forever grateful.

About the Author

Crystal McClure lives in Tennessee. She owns her own home and holds an Associates Degree in Office Administration. She is pictured with her boyfriend, Mike.

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Sensory Therapies for Children with Cerebral Palsy and other developmental delays

More avenues of hope for children with Cerebral Palsy and other developmental and behavioral disorders! This is a technical article and may have to be read twice to properly soak up all the information. The basics are that children with CP have major issues detecting and reacting to sensation. This can be as simple as knowing when to react when you put your hand on a hot stove. This research hopes to unlock areas of the brain that can be better trained and seasoned to sensation. Through this, the patient can begin to sense things correctly and in turn coordinate their motor functions appropriately.

For more information please read this article:

http://www.cpfamilynetwork.org/in-the-news/sensory-therapies-for-cerebral-palsy