The May family copes with four boys' autism as a team

8:19 AM, May 4, 2012   |    comments
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Nicole May reached for her camera out of fear.

She wondered why her 13-month-old son, Nicky, stopped looking her in the eye, even when she was seated inches away. Why he wouldn't talk or respond to his name. Why he constantly flapped his arms.

May shot the movies to share her concerns with Nicky's doctor. Although she suspected the cause of his behavior changes, she was reluctant to face it. "I'd ask, 'Is this typical?' " she says. "We don't know what typical is."

Indeed, nothing about May's life is typical.

All four of her sons - ages 2 to 10 - have an autism-spectrum disorder, which impairs their abilities to communicate and socialize, and predisposes them to repetitive behaviors, such as Nicky's arm flapping.

Though autism can run in families, researchers say, families such as the Mays are rare. Most parents with an autistic child won't go on to have another, says Sally Ozonoff, a professor at the University of California-Davis MIND Institute. Parents with one autistic child have about a 20% risk of having another child with the condition; couples with two or more autistic children have a 32% risk.

May, who had hoped her fourth child would be a girl, says she couldn't imagine that all of her children would be on the autism spectrum. Seeing signs of autism in Nicky, their youngest, was devastating, May says.

"I cry a lot," she says. "I'm not going to lie."

As parents, May and her husband, John, have known little outside of autism. In a quirk of fate, Nicole May works full time as an autistic-support teacher for a local public school system, teaching home-bound students, a job she got before having kids of her own.
At times, she has begged her school principal to reassign her to any other class. Yet each year, she has opted to continue teaching autistic students. "I went to church and I prayed a lot," she says. "I thought, 'Maybe it's my purpose in life.' "

Scientists don't know what proportion of children with autism come from families with more than one affected child. Nationally, more than 1 million children, or one in 88 kids, have the condition.

Researchers are paying more attention to families such as the Mays, Ozonoff says, hoping that what they learn will help them better understand non-familial cases of autism as well.

For example, May enrolled in a clinical trial when she was pregnant with Nicky, allowing researchers into her delivery room to take samples from the placenta and umbilical cord and even vacuum dust from her house in an effort to pinpoint the causes of autism. Although her husband has two relatives with autism - one on his father's side and one on his mother's - they have never been tested for any of the known genetic mutations linked to the condition.

At first, the Mays were slow to recognize that their sons had autism.

Each boy began like any other infant, smiling, cooing and returning his parents' gaze. Each child changed, however, sometime after his first birthday - a common pattern in autism. Its brain signatures appear to be present soon after birth, but it may not cause noticeable behaviors until toddlerhood, new research shows.

At first, 'denial'

By the time their first son, James, was diagnosed, at age 5, their second son, Dominic, already had arrived.

John May says he was "in denial" for years that their children's behavior changes were caused by autism.

Nicole May had trouble, too, letting go of her expectations about "normal" domestic life.

A simple ritual such as dinner rarely goes smoothly, she says. When ordering pizza one Friday night, she's careful to ask that the pie be cut in exactly 16 slices. Any other number could leave James, 10, in tears. Autistic children often notice numbers or patterns that others don't, a trait that may contribute to James' above-average math skills. But people with autism also can be inflexible, becoming upset if their routine changes.

"Getting to eat dinner - that's not a lot to ask," Nicole May says. "But somebody doesn't like the smell of what you're cooking. Somebody's screaming. Somebody needs juice. Somebody's crawling across the table. That's hard."

The Mays rarely start the day fully rested. Three of the children still sleep in their parents' room. The baby, Nicky, doesn't sleep through the night. And Dominic has night terrors. By morning, one or more has made it into their parents' bed.

To calm the children during the day, May says she keeps something in every room designed to provide a soothing form of sensory stimulation: a rocking chair in the living room, a bean bag in another room, a trampoline near the TV.

Yet while her family may not be anyone's ideal, May says they are a team.

The family walks together each year to raise money for autism research, wearing their "Team MayBoys" T-shirts: John, 40; Nicole, 34; James, 10; Dominic, 6; John Jr., 3½; Nicky, 2. Their shirts bear the family's motto: "Awareness and acceptance first, everything else second."

Although autism has a tendency to isolate people - separating parents from the children with whom they're desperate to connect, as well as from the friends and family from whom they most need help and compassion - May says her family pulls together as one.

"We've had our ups and downs. But I told my husband, 'I wouldn't want to go through this with anyone else but you.' "

Gail Stein, a social worker at Children's Hospital of Philadelphia, where Nicky is treated, says relatively few families are this resilient. For many, it takes time to accept that their family life won't conform to their expectations, she says.

Contrary to popular wisdom, research shows that divorce rates are no higher among couples with autistic children than among other husbands and wives, Stein says.
Life with autism is "just different," Stein says. "It might not look the same as every other family, but it's going to be their family. ... Once you wrap your head around the fact that it's not what you expected, it can still be wonderful."

'They're not animals'

Nicole May says she's determined not to let autism limit her children's lives.

Although James receives some special services at school, he's in a mainstream classroom, where he takes advanced math. He even studies violin and is a Cub Scout. When he grows up, he wants to be a scientist.

Yet navigating his school's social landscape remains challenging. His parents had to teach him how to use a phone book appropriately, for example, after he began calling every child listed in his new school directory.

James has been bullied at school, too, Nicole May says, by kids who took his hat and jacket.

A March study from the Kennedy Krieger Institute in Baltimore found that 63% of autistic children were bullied, which makes them three times more likely to be bullied than their non-autistic siblings. Bullies sometimes intentionally try to trigger autistic children into having a meltdown or aggressive outburst, the study found.

Children aren't the only ones who are cruel. Adults often don't understand, either, Nicole May says: "No one wants you around when your kid can't behave."

"People say, 'I don't know how you do it. How do you go out?' But we can't just stay home. They're autistc. They're not animals. They have to learn to live in the world. The world is not going to adapt to them."

Just getting in and out of the grocery store - let alone sitting through church - can take all her patience, May says. "I try to explain why they scream and yell and run. It's not because we don't discipline them. Older people will say, 'In my day, we didn't have these things.' Well, that's because they were in an institution."

Staying home from church isn't an option - for her or the children, May says. Prayer has been a source of strength for her, she says, as has writing poetry. "Autism wasn't a choice for us," she says. But "we have learned to accept it and believe, for some reason, it was a gift from God."

(Copyright © 2012 USA TODAY)

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