Autism: For families, a daily struggle tempered by acceptance
Autism: For families, a daily struggle tempered by acceptance
March 26, 2015 06:18AM
By ANNA MARIA LEMOINE
Sun Staff Writer
STONINGTON — Crystal Wilcox, a 49-year-old, lifelong resident of Stonington, has a piece of jewelry she wears almost every day, an Alex and Ani bracelet with the words, “It is what it is.”
It took a while for her to get there, she said: The place where she could deal with what life handed her: a son, Billy, whose autism was diagnosed when he was a toddler.
“I remember sitting there and saying in my head, ‘Do I cry or throw up?’” she said. “Then I thought, neither one of them is going to do any good. So I asked, ‘Am I dealing with someone who’s going to sit in a corner and rock back and forth, or Rain Man?’
“For the next two weeks, I would look at him and just start crying. Then I thought, again, this isn’t helping him. I have to deal with it.”
Billy, 17 years old and a junior at Stonington High School, is considered in the middle of the autism spectrum, a developmental disorder that recent research suggests may originate in the womb.
“To look at Billy you wouldn’t think anything was wrong,” Wilcox said. “But autism manifests itself in so many ways. I’m dealing with a small child the size of a grown man.”
Wilcox takes it upon herself to educate everyone she can on the disorder and takes advantage of platforms like the month of April, which is Autism Awareness Month.
On Wednesday, local communities will participate in Light It Up Blue, a global initiative. Buildings will be lit in blue and the second annual local Light It Up Blue event will take place at The Twisted Vine in Westerly from 5 to 10 p.m.
“I sit back and I listen to parents talk about their kids going to prom and getting ready for college and the parents say they don’t know how they’re going to deal with it,” Wilcox said. “I would kill to be in their position.
“My son won’t go to college. He won’t get married. He’ll always live with Mommy and Daddy.”
‘YOU CAN’T JUDGE’
The Centers for Disease Control and Prevention last week raised its estimate of the frequency of autism to 1 in 68 children in the U.S. But despite a growing number of diagnoses, there is little understanding of the disorder, said Wilcox, who works at UBS and is the director of religious education at St. Michael Church.
Routines are crucial in her son’s life, and if there’s a break from routine “all hell breaks loose,” she said.
A year ago, Billy stood outside the family’s home near a senior housing complex in Stonington. He became visibly upset and started yelling because the family — Wilcox is married to Bob and also has a 13-year-old daughter — was going out to dinner that night. Dinner out was a break from routine Billy wasn’t expecting.
“He was throwing a temper tantrum outside like a toddler would,” Wilcox said. “A lady came out of her home and asked if she needed to call someone. I told my husband to go take care of that, and I would take care of Billy. I was talking to him and he was winding down. Another woman came out, and I had to tell her, ‘My son has autism.’ She said she didn’t care.
“Next thing I know, a Stonington police car is coming down the street toward our house. Someone had called the police, and that started a whole new tantrum. Billy flipped out, screaming, ‘They’re going to take me away.’ People judge. The toughest thing about having a child with autism is people don’t understand. They think your child needs discipline. That’s not what it is. My son has autism.”
Billy loves videos and carries around two bags full of Walt Disney videos wherever he goes, as long as his parents allow it. He likes to put together 1,000-piece puzzles and color.
If the family eats dinner at home, he eats grilled cheese and Tater Tots every night. When they go to one of his favorite restaurants, it’s one slice of pizza on one plate and French fries on another.
“You have to be on when you have a child with autism,” Wilcox said. “For example, he is obsessed with videos. If we’re somewhere and he sees something with videos, he’ll want to get up and go straight to it. He’ll cross a street without looking for cars just to get to where those videos are.”
The autism estimate that the CDC released Thursday reflects a 30 percent increase compared with 2012. In the United States, 1 in 42 boys is estimated to have autism, and 1 in 189 girls.
“People say autism is an epidemic,” Wilcox said. “It’s not an epidemic, we just have better diagnostic criteria.”
Billy is one of 48 students identified on the autism spectrum in the Stonington School District, said Lori Liguori, a school psychologist and coordinator of the Autism Parent Support Group. “As a school district, we provide a great deal of support for parents in terms of involving them in the educational program designed for their children,” she said. “We also link parents to outside agencies for a variety of services when needed.”
Billy is mainstreamed in classes at SHS, but also works one-on-one with a paraprofessional.
Wilcox calls the district’s response to her son’s needs “phenomenal.” When he was in elementary school, a social worker spoke to his classes about autism.
“Children are afraid of what they don’t understand,” Wilcox said. “Teaching other children to be understanding helps them, and in turn, Billy learns to accept cues from his peers.”
Through a work-study program at SHS, Wilcox also has reassurance that the episode involving the police car wouldn’t leave Billy afraid of police officers. On Fridays, he helps clean the Stonington Police Station.
“It’s been really good for him,” Wilcox said.
LIGHT IT UP BLUE
The Westerly Public Library is lighting up its landmark building in blue lights for Wednesday’s event. Downtown dress boutiques are dressing up their windows in blue, and many restaurants and bars will have their staffs dress in blue and offer blue drink specials.
“This event is all about public awareness about autism,” said Julie Holland, one of the organizers. “It’s all about supporting these amazing children and their incredibly supportive families. I don’t walk in their shoes, and I can’t imagine what their day-to-day life is like.
“But I can try to support them and teach and encourage my children to be supportive and loving to their fellow students.”
It’s all Wilcox is asking for.
“For the general public, my advice is don’t judge because you don’t know the situation a family is in,” she said. “And for parents who have children with autism or think they may have autism: don’t be afraid or embarrassed. Be as open as you can possibly be about autism because when you’re open you’re educating others.
“You’re making this small town better for your child. You have to be your child’s advocate.”