Living with autism is family struggle
Published 12:00 am Sunday, December 28, 2008
Susannah Heatherly saw the walls crumbling the second time. She felt the ceiling lowering. And she knew the ground beneath her was shaky.
But knowing what was coming didn’t make it any better. It was only that much worse.
Byrne, not yet 3, had symptoms. He wasn’t picking at his hands like Wesley did. He didn’t tear paper into little strips like his then-7-year-old brother had.
Byrne was more social, but still, Susannah knew.
She now had two autistic children.
“When we took (Byrne) to get that official diagnosis, it was like, ‘Yeah, we expected it,’” she said. “Not that it was any less devastating.”
Wesley’s diagnosis didn’t come with such forewarning.
His daycare teachers thought he might have a hearing problem.
A doctor said he needed tubes in his ears. And everyone thought that after his ears healed, he’d simply start talking.
But he didn’t.
A close friend noticed the signs of autism first, and she told Susannah to have him evaluated.
“I can still remember sitting in my bedroom in Jackson and feeling that my whole world was caving in,” Susannah said. “Everybody has all these visions of what their child is going to be … I didn’t know anything about autism.”
The original diagnosis for Wesley was pervasive developmental disorder — a spectrum of disorders that includes autism.
At age 6 he was re-diagnosed with high-functioning autism.
“Early on, it was very trying,” Susannah’s husband Wade said. “There were a lot of tears.”
“And there are still those times,” Susannah said.
Twice?
Three years after Wesley was born the Heatherlys had another child, Carolyne.
Since the root cause of autism — which is still unknown — has been rumored to be early childhood vaccinations, the Heatherlys handled Carolyne’s birth differently.
She left the hospital — at the objection of her doctor — without all her shots.
She later received them on a different schedule than most babies.
Carolyne, now 6, is a happy, healthy little girl with no signs of autism and a fondness for the Fancy Nancy children’s books.
Two years later, Byrne came along.
The Heatherlys repeated the same vaccination schedule they had used with Carolyne.
It didn’t work. Byrne’s autism is more severe than Wesley’s.
Autism is four times more prevalent in boys than it is in girls.
And, because most experts believe genetics are a contributing factor, it is possible that once you have one autistic child, you may have another.
“We knew there was a chance,” Susannah said. “We were more aware. But you don’t ever think lightning is going to strike twice.”
Toy cars
Autism is a communication disorder.
It affects the way children and adults interact socially and often whether or not they speak.
But no two cases of autism are alike, and many of the symptoms aren’t unlike behaviors of a regular child.
In so many ways, the Heatherly family is typical.
Wesley, 9, spends hours in front of his video games.
Byrne, 4, likes to climb on the furniture.
And Carolyne, like any middle child, is always looking up or down to see what her brothers are doing.
Afternoons at the bowling alley come frequently. Summer swimming is a must.
Dad works at the bank. Mom teaches part-time.
And two dogs greet you at the gate.
But normal things sometimes have abnormal explanations.
Susannah and Wade are paranoid about the locks on the doors because of their boys.
Byrne might just decide to open the door and run.
Wesley will open the door to any stranger, Susannah said.
An afternoon at the swimming pool isn’t relaxing at all for mom, not because she fears drowning, but because Wesley may be bothering someone by asking the same question over and over again.
Getting ready for school in the morning could lead to an uncontrollable meltdown if the right color shirt isn’t clean.
And a small, toy car might be just enough to drive a 9-year-old brain into another world.
“Things that are typically kid-related, they may take to an extra level,” Susannah said.
Forcing normalcy
Wesley and Byrne both attend regular classes at school.
They have no physical disabilities. And their bodies are healthy.
Wesley, now 9, has been attending therapy for most of his life and the progress has been amazing, Susannah said.
A series of applied behavioral analysis, occupational and speech therapy sessions have brought Wesley to a highly communicative level, his therapists at Key Rehab in Natchez said.
He verbalizes his wants and needs well and can carry on a conversation.
Wesley’s sessions at Key Rehab now are focused on how to react in social situations and how to identify emotions.
In school, he is a math whiz but he struggles with reading comprehension, Susannah said.
Byrne remains non-verbal, though he will echo words and sounds. His therapy sessions are focused on compliance, eye contact and imitation, speech language pathologist Maria Smilo said.
“The more that you bring them into this world and teach them the things that are required, the better it’s going to be,” Smilo said.
Repetition of skills and rules in therapy and at home are the key to growth, Wade agreed.
“We push them into situations. You have to push them into normalcy.”
Hopes and dreams
Susannah and Wade don’t have a roadmap to follow.
They don’t know how their boys will react to adolescence.
They don’t know whether either son will be able to live on his own.
And they don’t know how they’ll handle what’s to come.
“Sometimes we kind of push it out of our heads,” Susannah admitted.
But that doesn’t mean they don’t have dreams for their children.
“We want them to go through school and be happy,” Susannah said.
“We want them to have normal friends and go to college,” Wade said. “I hope they fall in love and get married.”
“Is that realistic?” Susannah said. “Chances are, no.”
Wesley has already asked if he can continue to live in their family home forever, Wade said.
The answer?
“Of course.”