Unsettling season: Noisy, bright, busy holidays are challenge for families of children with autism
SANDY —Here's an unforgettable Christmas scene from the past: a younger Brady Cook, agitated because his current obsession, a battery-powered toy drill that was under the tree, is not working. In the meltdown that ensues, he puts his head through the sheetrock wall. Meanwhile, as Robert and Sharon Cook try to calm their son, his brothers, Nick, Christopher and Coby, open their own gifts by themselves and play with them quietly.
When Brady's having a day like that, there's no visiting relatives or friends. Even on Christmas Day.
Brady, 16, was born prematurely, weighing in at a mere pound and a half. He's nearly blind and has other physical problems. But the one that changed the Cook family's lives is autism.
And as many parents of children who have an autism spectrum disorder (ASD) can tell you, Christmas is a challenging time of year.
The holiday season is full of changes and unpredictability, from the lights strung on houses to the blaring Christmas music. There are new sights, new smells, new sounds, much of it unrelenting for someone with autism. A life that has been deliberately structured to cope with ASD may start to unravel.
"It is not surprising that many individuals with autism struggle around the holidays, because the holidays present challenges in areas commonly difficult for those with ASD," says Dr. Deborah Bilder, assistant clinical professor in the University of Utah department of psychiatry, who works extensively with autism. Crowds are hard. So is visiting, whether family and friends come to you or you go to them. And "most families don't travel," Bilder said. "It's always a balance between meeting the need of the affected child and the rest of the family."
"We all have our holiday expectations and rituals ingrained in us from the time we were kids," says Kelly Green, of Monrovia, Calif., whose son Wyatt, nearly 13, stopped speaking as a toddler. "When you have a child that can't have the same ritualistic experiences the way we had it, it becomes kind of weird for the family."
It's hard, especially for the siblings of the child with the disorder, she adds. Her family has coped by making sure Wyatt has an escape when it becomes too much, a quiet place to retreat.
But adapting has to reach beyond the nuclear family — something that is catching on. Malls in states as disparate as Florida, Minnesota, Ohio and Nevada open for an hour extra early one day during the ramp-up to Christmas. They dim the lights, soften the music and tone down the ornamentation so kids of all ages with autism can spend a few moments with Santa Claus without being overwhelmed.
It's a cherished tradition that requires some planning. What is hard depends on the individual. Wyatt does malls OK; Brady has never been to one. It would be too much for him, although the Cooks have worked their way up to visits to a convenience store.
Green says you have to be flexible. At home the Christmas decor is "subtle lights, fewer decorations and less hoopla." She doesn't expect Wyatt to help make cookies or hang stuff on the tree. Sometimes she has to explain to family members one only sees once a year that he's not unhappy, just not interested.
"Don't get upset if he doesn't make a big deal of the present you picked out especially for him," she warns. "And he doesn't care about opening gifts. But once he sees (a toy) working, he may like it and play with it."
Preventing a meltdown
Like many parents who have experienced a holiday-induced brouhaha, Sharon Cook tries to head off trouble.
"The hardest thing is you never know when or what will set him off," she said. "You walk on eggshells. You don't know if you can visit five minutes or an hour or if it will happen when you're halfway there."
Debra Hosseini, co-founder of California-based The Art of Autism, says the hardest part of the Christmas season for her son, Kevin, is that school is out for an extended period. Most children with an ASD need predictability. The transition to time off can be brutal. Still, Kevin, like many with autism, has gotten somewhat accustomed to the Christmas chaos.
Her friend Keri Bowers, whose son Taylor will be 23 on Christmas Eve, experienced that, too. "When he was younger, his autism collided with the holidays, the smells, the distractions, large groups of people, social interactions and his desire to touch if not dismantle the tree, among other things," she says. The Los Angeles, Calif., woman, a filmmaker who created "Normal People Scare Me," has been making recycled cardboard Christmas trees for families who are less experienced with autism. It's an alternative to a real tree an autistic child might be determined to shred.
Bowers has systematically prepared Taylor for Christmas using stories and pictures to remind him of what happens. She includes him in holiday activities, with time limits on how long he has to be present at gatherings. She's not above the occasional bribe: "Stay and share some time with family; I will take you to your favorite movie afterward."
She taught him to make ornaments so "his desire to tear them down was diminished by his buy-in and pride of ownership." She has taught Taylor to give, starting small and building. At 14, he began doing small jobs to buy Christmas presents for the less fortunate.
Help them prepare
Such strategies make the holidays easier, but no two children are the same in either stressors or what relieves them. Degree of disability varies widely, as well.
For the Cooks, family outings have long been challenging, worries intense that someone else would get a toy Brady would fixate on. He once fell in love with a 6-inch-tall porcelain snowman with which, fortunately, a friend was willing to part. He slept with it for six months, in love with the texture. Taking it away, says his mom, would be beyond hard.
So on Christmas Day, the family holds its collective breath. "All the other kids would want to go see their cousins. But if Brady had a horrific day, we didn't dare take him."
One Thanksgiving, she got the best holiday gift ever. She told her brother they couldn't come for dinner. Brady was stressing and she feared he'd put his head through the sheetrock again. "What do you do when he does that?" her brother asked.
"We fix the sheetrock."
"Then bring him out, and if he puts his head through the sheetrock, I'll fix it," he told her.
Strangers can ease the load by suspending judgment, Bilder says. Don't toss them nasty looks or make snide remarks when a child who looks perfectly fine behaves badly. You don't know what's going on.
People wonder why parents of a child with autism can't control him. "You have to make it through a tantrum to teach the child there are limits, but it's hard because there are lots of judgments around them," Bilder says.
Green has friends whose own families don't make them welcome "for fear their perfect party might be trashed. There are some vile reactions, through ignorance," she said. She tells them Wyatt's never going to be like other kids, but he's "a lot of fun to be hanging out with once you understand the kinds of things you can and can't do" with him.
Green, who founded Autismhwy.com, a social network for families with an ASD child, works hard not to shelter Wyatt — or the world from him. "He travels with me. We take a little bag of tricks" filled with things that calm him. "He's sweet, happy, a little oblivious."
The only time she really saw him upset was in a grocery store, where he was twirling and working his hands, same as always. Someone glared at him, obviously angry. "He has no clue about grocery store etiquette. But he felt the bad vibes and started to cry."
"I think it's important, especially around the holidays, to be respectful of people with adult children or younger children who have challenges," says Lisa Goring, vice president of family services for Autism Speaks. "Welcome them into your homes. Ask questions in advance. 'What would be helpful?' "
Her group has tips and tools for friends and family. Parents often find that putting together picture books and talking an ASD child through what will happen helps.
Green thinks people have it a little backward. The Wyatts, Kevins, Taylors and Bradys won't necessarily fit, in social skill terms, into the rest of the world. But the world could try a little harder to welcome them, she says.
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