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Autism creates family struggles, especially at Christmastime
Holiday crowds bring a potential worry
1224autism3
Mike and Suzanne Holman set up a plate of food for son Will while visiting family Saturday morning for a Christmas celebration. With treats and sweets seemingly everywhere during the holiday season, the Holmans take special care to maintain Will’s diet, which has certain restrictions due to his autism.

When Suzanne Holman takes her two children, Alex and Will, to see Santa Claus, she waits in the line while Will rides the escalator up and down with his father.

Will, 5, is too fidgety to wait so long, so the escalator keeps him entertained without overloading his senses.

Will is autistic, which poses special challenges around Christmastime. The disorder affects the brain's normal development of social and communication skills.

"We usually have to prep Santa and his helpers to make sure he understands this is an autistic child and there may be some issues with that. Santa's scary to him," Flowery Branch resident Suzanne Holman said.

She said there is a saying that goes, "If you've met one autistic child, you've met one autistic child."

Autistic children may react poorly to the bright lights and Christmas carols most people consider vital parts of their holiday traditions. But some handle situations better than others, depending on where they fall on the autism spectrum.

"For most autistic children, their sensory perceptions are distorted. Ordinary sights, sounds, smells, tastes and touches that you may not even notice are painful to them," said Leigh Stallings-Jarrell, a Clarkesville resident.

"We had to go down to a doctor in Atlanta and on the way back, we stopped and had lunch. They dropped a pan in the kitchen and my son had a total meltdown. It just totally bombards them. They hear every little thing, a cash register beeping, a fluorescent light buzzing."

Crowds are another potential issue.

"(My son Jonathan) enjoys Christmas and the family get-togethers, but not large functions," said Stephanie Bogart, a Helen resident who founded the Northeast Georgia Autism Support Group alongside Stallings-Jarrell.

"A weekend of cousins in the house is enough to send him to his room with his door shut. My sister has a more-on-the-other-end-of-the-spectrum autistic child. I think the holidays are very difficult for them. When they come up ... we have a very small window. He has to eat at 12 and if he doesn't he gets upset because it's off his schedule."

Bogart's son, 15, was also not so sure about Santa Claus, but for a different reason than Will Holman.

"He's never liked Santa Claus. I don't have a Santa Claus with Jonathan picture," Bogart said. "He never really believed in Santa Claus because there's no way he would fit down the chimney. I would try things like saying he has a master key to the house, too, trying to keep it alive. But if it didn't make sense and there wasn't a logical explanation, he immediately discounted it."

Jonathan Bogart has Asperger's syndrome, which is on the higher end of the autism spectrum, meaning he can function somewhat normally in society. His mind, though, is focused on the black and white.

"I found it was easier to give him the upfront truth, ‘Jesus is the reason we celebrate but these are the traditions,'" Stephanie Bogart said. "For him and a lot of the other ones, everything is black and white. There's no gray. They want it cut and dry, right or wrong, so explaining gray areas can be difficult."

Family matters
"One of the big problems that families face is a lot of these children have major dietary restrictions. There's a very long story about why that is, but for biomedical reasons a lot of them are not able to eat casein or gluten," Suzanne Holman said. "(Will) cannot have dairy, eggs or yeast. My poor sister, who is having the family over on Christmas night, has called me multiple times to figure out what she can serve so Will can have something to eat."

On Friday, Will attended a holiday party at his preschool. A high-functioning child, he attends a typical preschool with a behavioral aide by his side.

"Both the teacher and the mom who's organizing the Christmas party have called me on separate occasions to run through the menu with me. He can't have the pizza they'll be serving or the cookies they'll be decorating," Suzanne Holman said. "I'll have to bring him a separate lunch and something to decorate so he'll feel part of the group."

Stallings-Jarrell's son, Bobby, 7, has dietary restrictions related more to his specific preferences. For example, if he eats eggs, he likes them flat, as on a bacon, egg and cheese biscuit.

At times, it is also difficult for siblings and out-of-town family to understand the children's needs.

"More family is getting together and you have family coming from afar and they haven't seen or dealt with your child on a daily basis and don't understand," Stallings-Jarrell said.

For example, she said, if an autistic child has a meltdown, family unfamiliar with the disorder might say to spank them and put them in time-out, not understanding the reason behind the situation.

"I don't think about this so much anymore, but over the years they had to be very understanding when they arrived from out of town and Will doesn't run up and greet them the way a typical grandchild or nephew would," Suzanne Holman said. "That's gotten a lot better and we are seeing the smiles and the hugs and the eye contact now."

Tackling traditions
"(Bobby's) idea of Christmas is that it's the time to give," Leigh Stallings-Jarrell said of her son.

And Jonathan Bogart might not believe in Santa Claus, but he is very into the gift part of Christmas.

"The anticipation of his presents about kills him, which is funny because he knows what he's getting," Stephanie Bogart said. "His list is like, four $10 items. It's just waiting for it is very difficult."

She said her son is very particular about his gifts, which can make buying them difficult for family members.

Will Holman is also not easy to buy for.
"My older son is poring through toy catalogs and marking them with post-it notes. I can't communicate well enough with Will to determine what would be on his list. I don't think he understands the question," Suzanne Holman said. "He's very intelligent, he just has auditory processing issues."

Because he can read, it is usually his job to be under the tree distributing presents on Christmas.

She tries to address Christmas and other holidays daily with Will.

"Will doesn't understand, despite all the focus on Santa and the rituals that go on with Christmas, the concepts. He enjoys it thoroughly but I don't think he understands the biblical story about Christ's birth or Santa coming down the chimney," Suzanne Holman said.

In his daily therapy sessions, he works on Christmas crafts, reads holiday stories and sings carols to make him more culturally aware. He participates in his school's performances, with his aide behind him on the risers to make sure he stays focused and doesn't fall.

Suzanne Holman said there are decorations all over the house, including Will's therapy room.

One decoration is the "Elf on a Shelf," a magic elf toy that hides in different rooms of the house every day, keeping a watchful eye on the kids.

"This year he's getting into some very serious mischief. Alex is getting a kick out of it but I don't know if Will just doesn't understand or doesn't pay attention, but he seems kind of oblivious," Suzanne Holman said. "A typical 5-year-old would be very excited about that."

But come Christmas morning, Will Holman will be paying attention.

"He's happy all of the time, but on Christmas morning he will be very excited to wake up and see what Santa's brought him even if he doesn't understand before then that's what's happening," Holman said. "He's an expert at unwrapping presents and he'll be glad to open yours as well."

 

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