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The Central Oregon Disability Support Network hosts a number of events for children with developmental and intellectual disabilities, their families and community members that provide a welcoming entry point into socialization. It also trains businesses to accommodate people with disabilities. The group’s website (www.codsn.org) and Facebook page list upcoming events and information about community groups for parents.

Pausing mid-sentence, James Carner abruptly jerked his head to the side to get a better view of his 9-year-old son across the room at a crowded indoor play area. Oliver stood silently before of a group of adults, his gaze fixed on them, his fingers dancing over his face and neck.

“Sorry, I always lose my train of thought when I’m watching him,” said the 43-year-old Bend man. “See, right now there is a group of parents looking at him. He’s acting very odd. He’s just standing there looking at them.”

Oliver has autism spectrum disorder, a complex developmental disorder that affects communication, coupled with profound hearing loss. He communicates using sign language, asks kids to play by brushing against them and hugs without notice. Carner is used to taking the defensive: explaining his son’s behavior to concerned parents and diffusing uncomfortable situations.

It’s a common experience for parents of children with developmental and intellectual disabilities like autism, many of whom hesitate to bring their kids to parks, bowling alleys and grocery stores out of fear of backlash or judgment. Some don’t do it at all.

But being around other kids is a crucial part of any kid’s development. Autism experts and seasoned parents agree others should take the plunge and there are ways they can make it easier on themselves and their children. There are also things business owners, community members and parents of neurotypical kids — those without cognitive disabilities — can do to make kids who have disabilities and their families feel more welcome.

“They crave and need those social engagements and though they may not react in the way that society is used to, they still experience it, they still appreciate it, they still want it,” said Makalani Hovey-Vicknair, a 43-year-old Bend mother of two children with autism, “and so it takes a community who is aware and who embraces those differences and who accepts people that are diverse to help facilitate that.”

‘It’s just diversity’

Carner quickly walked over toward Oliver, but stopped when he realized the adults weren’t paying attention to him. They were at Oliver’s favorite place to play: Bouncing Off the Wall, an indoor play area on Bend’s east side with inflated bouncy houses and playground equipment. It’s one of the few businesses Carner said have actively worked to accommodate Oliver. At other places, he’s encountered hostility from staff and parents alike.

Many children with autism engage in repetitive behaviors — often called stimming — such as flapping their hands, banging their head, repeating a word or phrase, or repeatedly touching a part of their body. It helps them stay calm in stressful situations. For Oliver, it’s looking at kids out of the corner of his eye and brushing up against them.

To neurotypical kids and parents, the behaviors can seem strange or even aggressive.

“Sometimes that would scare the kid so they would go to the parent … and it could turn into an altercation because they don’t understand that he’s autistic,” Carner said. “Because usually with a lot of people it’s judge first, ask questions later.”

Stimming isn’t inherently problematic, but it can be if it’s damaging something in the environment or attracting unwanted attention, said Dr. Katharine Zuckerman, a general pediatrician and associate professor of pediatrics at Oregon Health & Science University who studies socialization and autism.

In that case, parents should discern whether something in the environment — bright lights? A noisy grocery store? — is stressing them out. Sunglasses or headphones might help.

Hovey-Vicknair’s 5-year-old daughter is a hand flapper. She’s had kids ask her why her daughter is doing that or even tell her to stop. They’re not being mean, they just don’t understand, she said.

Her 7-year-old son has delayed speech and often can’t respond when others talk to him. Kids get mad because they think he’s ignoring them. He also giggles and curses when he’s uncomfortable. For those reasons and more, Hovey-Vicknair said it’s important for parents of neurotypical kids to explain autism to them.

“It’s just diversity,” she said. “It’s not something that’s lesser. It’s not something to be afraid of. It’s not something to condemn. It’s not an affliction.”

Tips for parents

If parents are nervous about taking their child out, OHSU’s Zuckerman recommends they put together a story board where they lay out pictures and tell a story about what’s going to happen. They could even go to the place and take pictures beforehand.

“They can rehearse it virtually before they actually do it, so that way when the child gets there, they’re not surprised by what it’s like,” she said, adding it’s a good idea to bring the story board along.

It’s a good idea to call or visit the business ahead of time to explain the child’s condition and see whether any accommodations should be made, Zuckerman said. For example, it might be better to visit an indoor playground when it’s less busy on a weekday morning. Some businesses, such as the Portland International Airport, offer tours for kids who have autism so they won’t feel so unfamiliar in the future.

Carner told Bouncing Off the Wall’s management about Oliver’s condition when he started taking his son there about seven years ago. The manager once brought him over to other kids to help him mingle, and on a busy day the owner — with Carner’s permission — got on the intercom and explained that Oliver has autism and can’t hear.

“The more and more and more I kept taking him there, the more he started to kind of understand that he’s diverse and different and that’s OK,” Carner said.

It’s easier to begin exposing kids to new environments when they’re younger, Hovey-Vicknair said. That way when they’re older, they will have developed more tolerance and coping mechanisms for dealing with the outside world.

Before going to a new place, Hovey-Vicknair always makes sure her kids have their coping tools on board. When her son was younger, that was his blankie. For other kids, it’s chewing gum or sunglasses or headphones. She always suggests researching a place first and even going ahead of time to scope it out.

And don’t get frustrated if your kid can only stay 5 minutes the first time, Hovey-Vicknair said.

“You can’t have these expectations that they’re going to have an all-day adventure and they’re going to absolutely love it,” she said. “You have to know that there are going to be limitations and just giving them the exposure is a positive and necessary thing.”

Tips for businesses, parents

The Central Oregon Disability Support Network, a nonprofit that connects families with peers and resources, trains businesses to accommodate people with all levels of disability. It often involves bringing in a panel of young people or adults with disabilities to talk about their struggles, said Dianna Hansen, CODSN’s executive director.

Hansen and her team teach businesses to use person-centered language, which means putting people’s names first, not their disabilities. They teach them about potential triggers, like loud speakers, whistles or bright lights. Bouncing Off the Wall, a business Hansen said is particularly welcoming, even started stocking noise-canceling headphones for kids who find the loud fans overwhelming.

Business owners can even try navigating their property using a wheelchair or black-out glasses, Hansen said.

Hovey-Vicknair said the best way for a business to show its support is to host special events for people with disabilities to show they’re welcome and respected. Zuckerman suggested also displaying signs with similar messaging, such as, “We welcome your special needs kids. Please tell us how we can accommodate them.”

As for parents, Zuckerman said it’s important that they teach their kids that disabilities are normal parts of the environment and they’re OK.

“Every child is different and every child has different behaviors and just because it’s a little different than what most kids do, if it’s not bothering anybody, that’s alright,” she said.

Sondra Marshall, director of St. Charles Health System’s Programs of Evaluation, Development and Learning (PEDAL) clinic, which serves kids with developmental disorders such as autism, added that if a parent seems to be struggling with a child who may have a disability, she recommends simply asking them how you can help.

Don’t assume to know what could be helpful, as some children with autism might be triggered by a simple touch of a hand on their back to calm them, Marshall said.

“Really it’s deferring to that parent and acknowledging, ‘Hey, I see that things look challenging right now. I feel really comfortable around you. What would feel supportive to you right now?’” she said.

Over the past year, Oliver has started going to the bathroom on his own, washing his hands and feeding himself. He even experiments with different kinds of foods. Carner and his wife credit Bouncing Off the Wall with helping Oliver develop. He even started an online fundraiser for the business when he learned it was having financial trouble and might have to close.

“It’s been a breakthrough for us,” Carner said. “When I find that Bouncing Off the Wall is having issues, I’m like, ‘You know, that place has helped me raise my son. I’m going to do everything I can to help them out.’”

—Reporter: 541-383-0304,

tbannow@bendbulletin.com

17442015