Organizations push to help children with autism adjust to everyday eventsST. PAUL – Cathleen Zelinski was eager to visit her family in North Carolina but didn’t know how she would manage the flight with her granddaughter, Aleena. Zelinski and her husband have raised the now 4-year-old since birth. Aleena is on the autism spectrum, doesn’t speak and wanders off. She gets easily overwhelmed by new experiences, and Zelinski worried about meltdowns in the airport.
By: Maja Beckstrom, St. Paul Pioneer Press, INFORUM
ST. PAUL – Cathleen Zelinski was eager to visit her family in North Carolina but didn’t know how she would manage the flight with her granddaughter, Aleena. Zelinski and her husband have raised the now 4-year-old since birth. Aleena is on the autism spectrum, doesn’t speak and wanders off. She gets easily overwhelmed by new experiences, and Zelinski worried about meltdowns in the airport.
On a recent Saturday, Aleena and Zelinski got a chance to practice every-thing grandmother and granddaughter were anx-ious about during a pro-gram offered at the Minne-apolis-St. Paul Internation-al Airport called Navi-gating Autism.
They were screened at a security checkpoint, boarded a plane, fastened their seat belts and then drove with grandpa back home to northern Minnesota.
“This is so much help,” Zelinski said of their dress rehearsal. “This will make it so much more relaxing when we actually fly.”
Navigating Autism is just one example of a growing number of accommodations in public spaces for people – especially children – on the autism spectrum. The Minnesota Department of Education has identified nearly 16,000 children with autism, from infants to age 21. The Centers for Disease Control and Prevention estimates that autism affects one in 68 children nationwide. As more families struggle with the dis-order, businesses and cultural organizations are exploring new ways to welcome them.
These are not the accommodations legally required from a school or workplace under the Americans with Disabilities Act, but voluntary programs that make everyday experiences easier.
“I think this is an issue that’s just beginning to get legs,” says Jonah Weinberg, executive director of the Autism Society of Minnesota, an advocacy and education group that has seen demand increase for its training. “It’s a way to be inclusive and create an environment where every-one can participate, but it also makes good business sense. If a family wants to take their child to a movie, but knows that their child can’t handle sitting quietly, they’re not going to pay to see that movie.”
Accommodations range from the airport program to “sensory-friendly” performances at the Children’s Theatre Company to semi-private photo sessions with the Easter Bunny at Maplewood Mall. The Autism Society has trained stylists at Kids’ Hair salons in the Twin Cities so they can cheerfully give a trim to a child who might scream and kick when someone touches his head. Valleyfair amusement park will host its first autism awareness day in June with trained staff on hand.
“Our families really want to experience whatever other families experience,” says Norah Slawick, moth-er of a 22-year-old son on the autism spectrum and director of education at the Autism Society. “They want to go see the Easter Bunny. They want to go to the theater. They want to go get a haircut. These programs help these families know they’ll have a nonjudgmental experience.”
Autism isn’t a single diagnosis but a collection of neurodevelopmental disorders that range from mild to severe. They often, but not always, include sensitivity to bright lights, loud noises and other stimulating environments. People on the spectrum may have difficulty sitting, waiting in line or adapting to experiences outside their rou-tine.
Riding an airplane involves all the above – plus other travelers who may not be sympathetic if a child starts kicking the seat or acting out. One family on a recent Navigating Autism tour said a previous flight with their autistic son was a “nonstop screamfest” that left them shaken and unwilling to risk another plane ride for several years.
The Metropolitan Airport Commission designed Navigating Autism to make flying less stressful. The first session was offered in 2012, and monthly sessions generally fill with 30 to 40 people. Each family is paired with a volunteer who escorts them through TSA security to a gate where they board an empty plane. The Autism Society of Minnesota helps families prepare with a “social story,” a sequence of photographs that shows each step of an experience in the order it will unfold.
Participants learn about the “family checkpoint” where they can explain that they are traveling with a child on the autism spectrum and jump to the front of the line.
“I didn’t know we could do this,” Zelinski said as she bypassed a line of travelers.
“You can leave your shoes on, but we’ll put your jacket in here,” she explained to Aleena, a quiet, dark-haired girl with big eyes, as she set their items on the conveyer belt to go through the X-ray machine. “Then we’ll put grandma’s purse up here. Remember? Then we wait in line for our turn.”
Aleena was fine, but security can be difficult for some people with autism. In a previous session, a young man became distressed and initially re-fused to hand over a metal helicopter toy because he couldn’t understand he would get it back.
At the gate, Delta pilot Rich Kargel gave tips. The father of a 13-year-old son with autism, Kargel, assured families that their kids’ behavior would not get them kicked off a plane. He encouraged parents to ask permission to board before other passengers or after everyone, so kids wouldn’t get distressed in the middle of a slow-moving crowd.
“We all know that some-times patience is a virtue our children do not have,” he said.
Everyone lined up, and Delta attendants scanned the mock boarding passes.
“We are going to Funville today!” Kargel announced. A boy shrieked in delight and would have sprinted down the jetway if his mom hadn’t caught him.
On the plane, Teddy Sellmeyer, 4, raised and lowered his window shade, over and over and over again.
“Stop it, Teddy,” said dad Robert Sellmeyer. Teddy ignored him. Dad pulled him into his lap and Teddy squirmed and whimpered.
“You gotta sit still,” dad said.
“He has a problem stay-ing in one spot,” Sellmeyer said. “I have to hold him so he doesn’t run away. And then he can kick and scream. Basically, if Teddy doesn’t want to wait, Teddy doesn’t want to wait. It’s tough, but it happens a lot. He can’t control himself.”
Sellmeyer said the practice run gave him and his wife ideas for how to man-age Teddy and his younger brother on a flight to a family wedding in Missouri.
A few weeks later, when they took the trip, Teddy opened and closed the window shade during the flight, but did “really, real-ly well,” reported his mom, Anika Sellmeyer. “I think he remembered what you do first, what to expect. He wasn’t anxious.”
Help in the audience
Performances and movies also are difficult for families with children on the autism spectrum. In 2007, a mom in Maryland was asked to leave a theater when her daughter began talking and flapping her arms during a movie. The mom asked the local AMC theater to set aside a matinee for families like hers. Now, 140 AMC theaters across the country, including Roseville and Eden Prairie in the Twin Cities, host a monthly matinee where the lights are up, sound is down, previews are skipped and it’s fine to laugh really loud or change your seat five times.
Live theater caught onto the idea in 2011 when Broadway offered its first sensory-friendly performance of “The Lion King.” This year, the Children’s Theatre Company in Min-neapolis started offering sensory-friendly shows, developed with a $46,000 arts-accessibility grant through the Legacy Amendment, said Deb Girdwood, access and special programs manager at CTC.
About 300 people turned out for the first show, a Saturday matinee in February of “The Very Hungry Caterpillar.” The house lights remained on. But the most important accommodation was simply acceptance.
“One mother described that her daughter got restless so she said she started singing to her to calm her down,” Girdwood said. “It was an environment where you could start singing a song to your child in the audience and that would be OK. There were people moving through the aisles. There weren’t any worries about behaviors because everybody understood that families were coping how they needed to cope. Just having that option relaxed everybody, I think.”
A few people left the theater to watch the show as it was live-streamed in the lobby. The Children’s Theatre had volunteers and trained ushers on hand to support families and pass out rubber toy stars – called “fidgets” in the autism community – for kids who are calmed by squeezing something.
The next sensory-friendly show is a June 7 performance of “Shrek: The Musical.” The sound tech may turn down the volume on the dragon roar and thunder, but that might be the only change.
“We are hearing from families that they want to experience what every family experiences,” Gird-wood said. “So we’re going to choose a few things we can easily tone down, but we don’t want to affect the integrity of the show.”
A few other Twin Cities cultural groups are exploring similar accommodations. In the music world, a violin and bass duo affiliated with the Minnesota Orchestra played what was billed as “Minnesota’s First Sensory Friendly Concert” at the Brooklyn Center library last month in a setting advertised as “free of the social restrictions that come along with a typical concert, such as sitting quietly for an hour or knowing when to clap.”
The Minnesota History Center recently put its staff through autism training and will soon have ear plugs to hand out to noise-sensitive kids. A “mother’s room” previously available exclusively for nursing mothers has been redesignated as a “quiet room” for families whose children need a break.
On a Monday in June when exhibits are closed to regular visitors, the muse-um is inviting families with children with autism to play in the “Then, Now, Wow” exhibit followed by lunch and an opportunity to suggest ways the muse-um could be more welcoming.
“The families we’re talking to have been kicked out of restaurants and theaters,” said museum out-reach specialist Maren Levad, who is leading the effort. “It’s something they get used to. Our role as a public and educational space is to make people feel welcome and to give them what they need, whether that’s a quiet room or a fidget or helping them prepare with a social story. We want them to know that when they come here it can be as stress-free as possible.”
The Easter bunny, too
Families with a member who is on the autism spectrum struggle to find activities that the whole family can do together, another reason the accommodations are appreciated.
Danielle Koller’s 12-year-old daughter, Julia, was born without a corpus collosum, a condition that can produce symptoms similar to autism. Julia doesn’t speak clearly and is impulsive. She sometimes cries and throws herself on the ground in public when she can’t go where she wants to go.
“She doesn’t understand boundaries,” said Koller, who is used to dealing with strangers’ comments. “We saw a pregnant lady in the mall the other day and she ran up to her and touched her belly and says, ‘Baby in there!’ She doesn’t understand that you can’t just run up to a pregnant woman and touch her. The lady was very offended.”
Koller and her husband also have a developmentally normal 7-year-old son, Johnny. But the couple cannot bring the two kids to regular movies or the water park together or, until this year, even to see the Easter Bunny at the mall.
This spring they heard about the Caring Bunny event at Maplewood Mall for special-needs children. They showed up before stores opened to the public and found tables set up with snacks and coloring pages. Instead of waiting in line, families were assigned numbers that were called out.
“We went up there and they gave us all the time we wanted with the Bunny,” Koller said. “It wasn’t like we had to go up and take the picture and leave. Julia loved it. The whole thing was so not stressful, and that is the big thing.”
The Pioneer Press is a media partner with Forum News Service.