Living with Autism: Part 1
By Jennifer McBride / Leader Staff
What would you do if something was wrong with your child?
Decker Cote is, in many respects, an ordinary boy. He's three months shy of his third birthday. He loves watching Thomas the Tank Engine. He enjoys helping his father, Will, feed the cows and chickens on his family farm. He roughhouses with his older brother, Carter, and baby sister, Timber. And when he sees his family's new puppy, Smuckers, Decker's face lights up with a 100-watt smile. In fact, Decker does almost anything a typical boy would do. Except he doesn't talk.
Charlie Cote said it was obvious that something was wrong with her son at a very young age. He developed normally for the first year, jabbering like any child. Then things started to change.
"The language he had developed at that point went away," Charlie said.
He started behaving oddly in other ways, like avoiding eye contact. Decker also needs to smell and to taste everything. When he goes out to do farm chores with his father, he licks the tractor tires, the snow on the ground and the steps on a ladder. Most children go through a phase of learning with their mouth, but they usually grow out of it. Decker hasn't.
At first, Charlie said she blamed herself for being judgmental. She already had one son, and she wondered if she was holding Decker up to an unfair standard.
"Everyone says 'don't compare your kids,'" Charlie said. "I wondered if I was being a bad mother."
But Decker kept behaving oddly. He started walking under the ceiling fan, arching his back over and over again in a way Charlie calls "repetitive" and "obsessive." He never showed emotion on his face, even when he was in pain. And he still didn't talk.
Charlie had always told her family doctor that Decker was "different," but it wasn't until she took him to an audiologist that she heard the word "autistic." He was finally diagnosed with autism spectrum disorder when he was 29 months old.
Charlie had been expecting the diagnosis, but it still stung.
"Just the idea that there's something not right with your child," she said. "That hurts from the get go."
Hurt but never crying
Charlie said she got up one morning to find blood covering Decker's bed. His ear drum had burst during the night and, unlike a normal child, Decker didn't scream or run to his family. That's because Decker, like many autistic kids, has an unusually high threshold for pain. Charlie said she also once watched her son put his hand on a hot stove without changing expression. When she later saw Decker picking at the white blisters from the burner, he giggled, almost like he was being tickled. The National Autistic Society website said autistic people often respond oddly to pain: by laughing, humming, singing or even taking their clothes off.
Because of his high pain threshold, Decker's parents have to watch him constantly to make sure he isn't injured. Charlie sent Decker out in the yard one summer and, when she looked again, he was playing with a wasp, picking it up and putting it down. Charlie rushed out and stopped him, but his wrist was already covered with red bites. What struck Charlie about the incident was that Decker didn't cry until she grabbed the wasp. Then, she said, he sobbed "like I was taking away a favorite toy."
Decker's longest tantrum, Charlie said, lasted 17 straight hours. On one of his bad days, Decker would throw himself against the floor, pull him hair out and pick his nose until it bled. There were other moments when Decker would go into "seizure-like activity," Charlie explained, collapsing and flailing. According to a 2005 study published in the Journal of Child Neurology, 20 to 30 percent of kids with autism spectrum disorders have seizures. Charlie said that, in Decker's case, nothing wrong has shown up on any of the scans he's been put through, and after six months of therapy the seizures have vanished. Charlie blamed them on his frustration with not being able to communicate.
A hard night
Sleep disorders are another symptom of autism in 60 to 80 percent of cases, Charlie said. Decker often goes to bed at 8:30 p.m. only to wake up two-and-a-half hours later. He'll stayed up for days with little more than cat naps, his father explained, exhausting his parents and waking up his baby sister.
"There's been nights when everybody's up when Decker's up," Will said. "We haven't slept for a year-and-a-half."
Charlie said she's tried everything — making Decker lie down for naps, letting Decker fall asleep naturally and giving Decker a warm bath. The Cotes said they've tried every homeopathic remedy they can get their hands on. Nothing works. Medication, Charlie explained, is a last resort.
"Nobody wants to drug their kids," she said.
On one particularly hard night, Carter, Decker's older brother, went to Decker's bed and laid down with him, calming his brother until they both could sleep. Charlie said she lay awake wondering about the impact on her other child.
"What are we doing?" she asked herself. "Our five-year old is raising our autistic son!"
But that's one thing that Charlie thinks a lot of people don't know about autism. She explained, "when one child is diagnosed with autism, your whole family and other kids are diagnosed with autism on that day."
NEXT WEEK: Treating Decker