Editor’s note: The following guest column was written by Titusville area couple Uriah and Jacqui Sampson.
We were blessed to have Jason come into our lives when he was three months old.
At first sight, we knew that Jason was very special, and that he would become a part of our family.
Jason came to us through the foster care system. Anyone who knows the foster care system understands that there are many ups and downs. Our journey led us to adopt Jason when he was 1 1/2 years old.
Since the first time we saw Jason, we could see the special sparkle for life in his eyes. He has been dealt many difficulties, and he continues to overcome every obstacle in his way.
Since an early age, Jason was delayed on all of his milestones and was enrolled in speech, physical and occupational therapy. He takes these therapies in stride and continues to grow physically, mentally and socially.
Through all the therapy, we could see that physically there was something wrong with Jason. We noticed that he was very fussy, could not run, go up and down steps and that his left side began to have a gait.
After many visits to Shriner’s and Pittsburgh Children’s Hospital, Jason was diagnosed with Arnold Chiari malformation at the age of 4.
Chiari malformation is a structural defect in the brain’s cerebellum and spinal column. This is the part of the brain that controls balance. With Chiari malformations individuals have difficulty with dizziness, muscle weakness, numbness, vision problems, headaches, problems with balance and coordination.
Jason was immediately scheduled for surgery following his diagnosis. This is one of the most terrifying things that you can hear — your son has to have brain surgery, and if we don’t do the surgery, there is a very good chance he will be paralyzed or he could die.
Following the six-hour surgery, we entered the ICU recovery room to find a screaming little boy standing on his bed with nurses trying to calm him as he yelled for us. Due to the surgery, his eyes were swollen shut and he was calmed once he heard our voices.
Jason is a fighter, and he continues to battle side effects of the surgery and Chiari malformation. He is constantly battling numbness in his legs, arms and tongue, along with headaches and neck pain.
Although Jason can now run at his own pace, he physically continues to have difficulty with stairs and balance.
During the time he was diagnosed with Chiari malformation, we noticed that Jason was showing signs of autism. As we were seeing doctors for his Chiari malformation, we began seeing doctors to rule out any autism traits. We hoped his delays and autism traits were side effects of his Chiari, but our fears were confirmed when Jason was diagnosed with autism spectrum disorder by Pittsburgh Children’s Hospital.
Autism spectrum disorder (ASD) is a neurologically-based developmental disorder characterized by impairment in social interactions and communication, as well as restricted or stereotyped patterns of behavior and interest.
Many of Jason’s ASD characteristics that you will see are his extreme sensitivity to sound and touch, speech and communication difficulties, impulsively, repetitive behaviors and obsessions.
As with his Chiari, Jason struggles with his ASD daily.
He constantly has heightened awareness of sounds, and deals with the anxiety of — When is there going to be a fire alarm? Who is chewing? Is there a storm? These sounds and others can send him into a panic and have even sent him into a hysterical state.
We constantly reassure him that he will be OK, and whenever we attend an event or go outside the house, we check the weather. Are there any storms in the area? We also keep his headphones in hand and take other precautions.
Also, when at home, Jason has a special area he sits to eat, so that he cannot hear any chewing.
Jason also has difficulty with obsessions. He is obsessed with things like John Deere tractors and monster trucks, and currently wrestling consumes his life. Everything he does feeds his obsession and consumes a majority of his time. When we are in public and he hears different sounds, crowds of people or sees one of his obsessions, Jason will either wander or bolt away. His safety is often compromised and we are constantly on alert with his wandering tendencies.
How will an
assistance dog help?
We hope that an assistance dog will help Jason with his anxieties, obsessions, safety, social interactions and behaviors, and give Jason some freedom.
We are constantly on heightened alert wondering what Jason is doing, where he is and if he is safe?
Jason is full of life, and all we want for him is to live his life to its fullest without barriers.
With an assistance dog, we believe that barriers can be removed and that Jason’s spark for life will be even brighter.
Benefit today to help Jason
PLEASANTVILLE — The Pleasantville Presbyterian Youth Group is sponsoring a “Noodles and Doodles” benefit night for Jason Sampson today. The purpose of the benefit is to help 9-year-old Jason obtain a dog from New Hope Assistance Dogs.
The event will be held at Pleasantville Presbyterian Church, today, from 5 to 8 p.m. “Noodles and Doodles” will be a pasta buffet dinner and art auction.
In addition to the auction of paintings, sketches and photography that will be ongoing throughout the dinner, there will be a chance auction of themed baskets.
Jason is a son of Uriah and Jacqui Sampson. The Sampson family resides in the Titusville area.