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Family shares autism story
By ANNA BROWN
For Christmas, Jackson Farr got an X Box One and a complicated Minecraft game that his parents thought would take him a while to master because he is only 7.
“Within the first hour he came in and asked, 'Daddy, what's the password?'” remembers Jackson's father, Tee Farr. “I told him he had just started. He said, 'I've already beaten Level 1.'”
Tee was amazed. Jackson's older brother, Will, who is 10, concurred that he had beaten the level.
“In a matter of a few hours he has beaten that entire game, a complicated game,” Tee said. “He doesn't like to read for leisure, he likes to be active, but he is two or three grades above on his reading level.”
“He's definitely high functioning,” Stacy said. “He's just quirky - it's him.”
Stacy is lay leader at her church, Foster Chapel United Methodist. From time to time in the absence of their minister, the Rev. Glenn Ribelin, she is called to fill the pulpit, either with a speaker or she may speak herself. Coinciding with April being Autism Awareness Month, she recently spoke about Jackson's diagnosis - Autism Spectrum Disorder - which the family received in October of 2015. She tied in Scripture on which the family relies.
“Sharing his diagnoses and our journey is very personal, but one that I want to share with others because in our journey, it is my goal to raise awareness for autism and help community members become better educated about this disorder,” she said. “As a parent, educator and advocate, I am hopeful that this awareness will lead to a greater acceptance and understanding of individuals with autism and help with children being diagnosed and treated at an early age.”
Autism is a brain disorder in which communication and interaction with others are difficult, Stacy said. The symptoms of autism may range from total lack of communication with others to difficulty in understanding others' feelings. Because of the range in symptoms, this condition is now called Autism Spectrum Disorder (ASD). Characteristics of ASD are a delay in motor skills, a lack of skill in interacting with others, little understanding of the abstract uses of language, such as humor or give and take conversations, obsessive interest in specific items or information, strong reactions to textures, smells, sounds, sights, or other stimuli that others might not even notice, such as flickering lights.
Some people with ASD want to be involved with others. They simply just don't know how to go about it. They may not be able to understand others' emotions or read facial expressions or body language well; due to this they may be teased and labeled as “awkward” or “quirky.”
The Farrs are both 33. Along with Will and Jackson, they have another son, Samuel, who is 4. Tee is a teacher at Union County High School who coaches football and baseball at Sims Middle School. Next year he will be an assistant principal at Union County High. Stacy is an assistant principal at Newberry Elementary School.
As Jackson grew and began to develop a personality, Tee and Stacy noticed that he had some “quirks” in his behavior and social skills. She discussed these with the doctor during every checkup. Every time she was told Jackson was normal. He is intelligent and reached appropriate growth milestones.
In April of 2015 Stacy insisted on a referral for testing. The waiting list was so long an appointment could not be made until September.
The diagnosis was a relief in a way.
“We expected it but in that moment, it's reality when you hear those words,” Stacy said. “I realize that I will not always be here for him - to be the mama that can swoop in and rescue him and be there for every little thing. It is definitely my passion to prepare him for the world one day and prepare the world for the differences in not just him but other people and other children with all types of disabilities.”
The Farrs said early intervention is a key for many children with disabilities and a parent should trust his or her instincts when seeking a diagnosis.
“Don't overly listen to the doctor,” Tee said.
In February, Tee and Stacy attended an autism conference where Dr. Temple Grandin was speaker. She is the most accomplished and well-known adult with autism in the world. She didn't talk until she was 3_ years old, communicating her frustration instead by screaming, peeping, and humming. In 1950, she was diagnosed with autism and her parents were told she should be institutionalized. She recounts "groping her way from the far side of darkness" in her book “Emergence: Labeled Autistic,” a book that stunned the world because until its publication, most professionals and parents assumed that an autism diagnosis was virtually a death sentence to achievement or productivity in life.
Tee said the conference was very enlightening.
“What we look at as struggles are normal depending on where you test on the spectrum,” he said. “She talked about different types of intelligence and different gifts.”
Jackson is above IQ in many areas. When Tee took him to a recent checkup, the pediatrician said Tee asked numerous questions about the examination.
“The doctor said, 'He's a thinker,'” Tee said.
Jackson enjoys discussing scientific topics like DNA and one of his dreams right now is to have a lab under his house.
Stacy and Tee said one thing they would like others to understand is the difference between an autistic child's behavior and a normal child's bad behavior.
“Like a tantrum and a meltdown - those are two different things,” Stacy said. “When a child has a tantrum he is looking for your attention - he is looking for your reaction. He has a goal in mind. Like when a child doesn't get something he wants in the grocery store. They are going to get louder and louder if you aren't paying them any attention. With a meltdown, they can't control it. It's not because they have a goal in mind. It's because something has disturbed them - bright lights, a noise or a sensory issue. Sometimes it is very had to calm them down.”
The Farrs use different strategies to help Jackson overcome a meltdown, including picking him up and holding him, trying to get his mind on something else.
Some parents of autistic children feel judged if their child is having a meltdown in a public place, Stacy said.
“It is important for people to realize people have differences and to be accepting and try to understand those,” she said.
And these differences often come with exceptional talents, Tee said.
“Some of the names that are often thrown out that would have definitely tested on the autism spectrum are Einstein, Mozart, probably Edison, who were late to develop and were socially never there but were brilliant,” Tee said.
The Farrs would like others to understand that those with ASD often have a hard time with figures of speech because they think literally. Jackson will do exactly what he is told to do. Once Stacy told him to “get on the ball,” meaning to hurry up. He became very frustrated wondering what she meant.
“You have to be very specific,” Tee said. “And now that we know that we are way more patient.”
The Farrs noticed early on Jackson did not like loud noises. When Tee would take Jackson riding on his Rhino, Jackson would always get headphones for ear protection. One Saturday morning Stacy was cleaning and had music playing in the living room. Jackson was in his room building with Legos.
“He came in and said, 'Please turn that off. It's making my brain hurt,'” Stacy said.
The Farrs are seeking Applied Behavior Therapy for Jackson. They said they and other parents of special needs children in Union have little access to services like this.
“It is very frustrating for parents in Union,” she said. “People will come from Greenville or Rock Hill and they are not getting travel pay. They come here for two months and say, 'I just can't keep driving here.' Then they have to hire somebody. Since November this is our second therapy company. I have only seen someone one time.”
The Farrs said they are thankful for Jackson's teachers, Kerri Hembree in kindergarten and Jen Roberts who he now has in first grade, for their patience, support and open communication. Jackson plays baseball on the El Poblano team. His coach, Frederick Bates, also is very understanding.
“We want him to grow and experience as much as he can,” Tee said. “That's why we are trying to expose him to as much as we can such as sports and he may be doing music soon.”
The Farrs spend one on one time with each of their three boys. They have taken Jackson to Discovery Center, the State Museum and to Legoland in Florida.
Tee said educators must find ways to find the gifts in all students, but particularly children with special needs.
“His diagnosis has enhanced my perspective as an educator on the services we give students and what they need as individuals,” he said.
Stacy said she and Tee are overwhelmed with all of the information that has been given to us and for all of the support that we have received through family and friends.
“I do not want this to be a secret that we keep, this is a part of who he is and now a part of us,” she said. “Of course, I don't want my child labeled, but autism is now a part of him whether we decided to acknowledge it publicly or not.”
Stacy included this when she spoke in church:
“What does Autism look like? It looks like beautiful brown eyes that sparkle in the light. It looks like a face that lights up with the joy of inventions, trains and Legos. It can also look frightened, nervous and bothered by loud noises. Autism can look like blue eyes, green eyes, brown hair or blonde hair. Autism can look like eyes that never quite meet your gaze or eyes that have learned to make eye contact except when overwhelmed or afraid. Autism can look like flapping and spinning or sitting quietly playing a video game. Have you caught on yet? There is no one look for autism.”
There is no known single cause for ASD, brain scans show differences in the shape and structure of the brain in children with autism compared to neuro typical children, Stacy said. Researchers do not know the exact cause of autism but are investing in a number of theories, including the links among heredity, genetics and the environment.
“Jackson is my son who is comical, caring and thoughtful,” she said. “He loves video games, Legos and television. He enjoys taking trips, making inventions, and eating some of the weirdest combinations of food. Jackson is not the face of autism … but he is one of the many beautiful faces of autism. I am so blessed to be able to take this journey with him; I couldn't have asked for a better pilot.”
(Posted May 16, 2016)