John played on the playground like any other 9-year-old boy. Today
was "draft day" at recess and the football teams were being picked. It
was an important day for John and the other 3rd graders.
Little did they know that I was there to "write" John’s story.
As an outsider, one would not really have noticed John with all the
boys. But an hour-long interview with his mother brought a different
focus.
This athletic boy on the playground was born with Hereditary Spastic
Paraplegia. His disorder essentially means his "upper motor neurons" in
his brain and spinal cord will degenerate with age. These neurons
control voluntary movement. They deliver signals to lower motor neutrons
in the brain stem and spinal cord, which carry messages to the muscles.
The upper neurons can’t transmit information to the lower neurons
correctly resulting in loss of muscle control. Simply said, John’s brain
doesn’t tell his legs to move when told. Tell that to John.
He ran with his buddies on the playground without a care. He kept up
and out of sheer determination, was just one of the guys. This is the
trait John’s mother says keeps him and the family motivated. His
positive outlook and efforts win the hearts of all of his teachers and a
sense of pride welled in mom as she shared their story. Understandably,
Annamarie is her sons’ biggest advocate.
When her second son was born, he appeared to be perfectly normal.
Thinking that all children develop at their own pace, John was 4 before
a problem was identified. He became clumsy, fell more often, ran into
objects, held onto his mothers hand for support and refused to walk
great distances, requiring a stroller. Annamarie went to the
pediatrician to seek attention and after numerous diagnoses and doctor
opinions, an accurate picture of John’s health emerged. He was only
borderline for needing help at the special needs preschool in Dublin,
but with mom’s prodding; he got into the school. There, he received
Adapted Physical Education, Physical Therapy and Occupational therapy
and his mom learned how to support and help others meet John’s needs.
John learned how to ride a two-wheel bike at nearly 7. Again, it was
the sheer determination and his desire to be like his older brother that
helped propel him to learn. Riding a bike for John required a lot of
effort to get on and off the bike, as his legs don’t bend well. He would
spend a lot of his "bike-riding time", falling off the bike only to have
to pick it up and begin at his special starting place again. John’s
safety and well as his enjoyment for the sport were at risk.
Discouraging as well, when you think the family of 6 live near 29 miles
of bike trails.
Sometime later, Annamarie would pick up a flyer by TAASC, The
Adaptive Adventure Sport Coalition, which
offers a variety of adaptive adventure sport
and recreational opportunities for individuals with disabilities and
their families and friends. A demonstration event was held and John got
the opportunity to ride an adaptive bike. His mother recounted his
response to his therapist when asked how he liked the bike. "He was just
beaming and smiling from ear to ear and said great!" A door had opened
for the young rider. However, the bike would cost nearly 800.00 dollars.
It is fortunate that John and his family live in Delaware County.
Thanks to the help of his case manager the family applied for funding
from an Adaptive Modification Grant through Family Directed Resources.
Delaware County Board of Developmental Disabilities is the grantor of
this money source.
From John’s perspective, he can independently ride his own bike. He
is in control and can even ride "one-handed." In the very near future,
he will be riding his new bike to his neighborhood school along side of
his sister.
From his mom’s perspective, she can relax and enjoy the excitement
her son has for the sport. She no longer worries about him falling and
using his precious energy to start all over.
From society’s perspective, they see a little boy enjoying what
little boys do. Riding bikes and being more and more independent. John’s
enthusiasm for sports is unstoppable. He rides horses with therapy
granted by DCBDD monies, is on the local swim team and is the 2nd
fastest back swimmer on the team and plays the piano along as does the
rest of his family. His determination is strong and his desire
unmatched.
A small investment of public funds made a huge impact on the special
life of this 9-year-old. John is a gift for us all.
