By Kim Stagliano
Before you jump down my throat - we have participated in sensory movies and other autism friendly events. I appreciate them. But - at what point will the larger world say, "Hey! How come this ONE population of disability is unable to participate in the general day to day world like everyone else?" Why not "Down Syndrome Day at Sesame Place" or "Cerebral Palsy night at the Bridgeport Bluefish ball park?" There's no "Jerry's Kids movie showing" at the local cinema.
I'd like the media and average Joe and Jane to realize that autism needs action, beyond it's own "Blue Friday shopping event." Autism is a dire financial, emotional, physical, medical and mental drain on families from coast to coast. We get precious little medical treatment, we're told that research into genetics might someday lead from mouse models to oh, say a primate! And then in 100 years, something for humans. We're asked to be patient as millions of dollars in research turn over the Elmo rock, the old sperm rock, the clever parents rock in a flim flam game that helps no one but those whose names are on the grant applications. We watch our children grow into handsome and beautiful adults who can not function independently in society while awareness campaigns sugar coat reality into a thin gruel the nation is willing to digest.
I don't want more ambulances to triage the kids who are getting hit by the autism bus - I want a safe road with sidewalks so that no one gets hit at all.
I know that families need TLC and a mall event to visit Santa without the dirty looks and sneers from those who know nothing of our world. If there was a Sensitive Santa night in our Westfield Mall I'd take the kids with pleasure and be grateful for the opportunity. But in the bigger picture, we need to keep shouting "FIRE! FIRE! FIRE!" so that another generation of kids isn't so badly affected by autism that the world is unaccessible and hostile to them.
Comment on the article below at TulsaWorld.
Christine McClary’s kids are terrified of the mall.
Jacob, who’s 8, and Emily, 7, don’t do well with all the sights and sounds of a shopping center, especially this bustling time of year.
“I can’t take them, ever,” McClary said. “It’s just because everything is over-stimulating.”
Both Jacob and Emily have been diagnosed with Autism Spectrum Disorder (ASD) - Jacob in 2005, Emily in 2006. Neither sibling can talk. Certain textures and colors upset them.
So sitting on Santa’s lap at the mall has never been an option - or, at least, it won’t be until this weekend, when Emily and Jacob will go to Tulsa Promenade for the shopping center’s second annual “Sensitive Santa” event from 8 to 11 a.m. Sunday.
Families who are affected by ASD are invited to the event, which caters to autistic children, allowing each an opportunity to enjoy a moment with Santa, as well as other kids, all in a sensory-friendly atmosphere - low lights, low music, no shoppers and a staff instructed to avoid loud, distracting movements.
“It just sounds right,” McClary said. “I think they’ll be able to handle it sensory-wise so they’re not feeling overwhelmed.” ASD affects an estimated 1 in 150 children, according to information from the Autism Center of Tulsa. No two children with ASD have the exact same symptoms, and the number of symptoms and how severe they are can vary greatly. When Jill Hobbs of Broken Arrow tried to take her oldest son, Gabe, to see a department-store Santa once, “it did not go well, to say it mildly,” she said. So last year, when she heard about “Sensitive Santa,” she was excited. “Oh my gosh, what a godsend,” she said. “That is fantastic. It made all the difference in the world.” The program started in 2008 at the Dayton Mall in Dayton, Ohio. The mall works with various charities annually, but it pays particular attention to a different one each year, explained mall spokesman Dave Casper during a recent phone interview. In 2008, they were working with the Autism Society of Dayton, whose president brought up to mall management how difficult it is for kids with ASD to visit with Santa. All the lights, music and crowds are too much to take. That holiday season, they offered “Sensitive Santa” before mall hours, and 20 to 30 kids showed up, Casper recalled. It went so well, it not only became a holiday tradition for them, it’s offered at other malls owned by Glimcher. Tulsa Promenade is among the company’s 20-plus properties, which are scattered from coast to coast. It was a learning experience for Casper, he said, who has seen the same families each year. “It’s made a difference in these kids’ lives,” he said. “There’s no program that garners more response from parents than this. Nothing we’ve ever done has gotten the thank-you emails.” At Tulsa Promenade, the shopping center will offer each family a free 4x6 photo keepsake through Worldwide Photography to commemorate the holiday activity. Last year, Gabe, who was 5, high-fived Santa. “That was success in our book,” his mom said. When they weren’t waiting in line, the kids could run around in the mall’s play area, Hobbs said. “When you have a child, your special kid, all the other parents kind of help out, watch out for the other kids,” she said. “It’s kind of like your own little family.” This Christmas, he’s going to ask Santa for roller skates, a fishing pole and a Nintendo DS. “He’s ready,” Hobbs said. “He’s been practicing.” For more about “Sensitive Santa,” call Tulsa Promenade, 918-627-2396.
Kim Stagliano is Managing Editor of Age of Autism and author of All I Can Handle I'm No Mother Teresa A Life Raising Three Daughters with Autism now available in paperback with bonus content including recipes, a study/book club guide and additional chapter.