ANAHEIM, Calif. — On top of the usual luggage for four, the Behuras pack extra things for 10-year-old Maximillian.

Special food, easy-to-use plates and utensils, medication, iPads and tablets, light-up toys, an oversized stroller.

Traveling with a child with autism can be real tough, but the Yorba Linda family refuses to miss out on vacations.

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For years, Alexander Behura, 17, has helped his parents plan ahead for trips with Max, who has autism. From this brotherly love grew a major Anaheim hotel’s desire to help those like the Behura family.

Best buddies

Max has soft eyes and the gangly arms of a young boy tall for his age. He’s friendly and energetic. He likes to hold and be held; often clutching someone’s arm in a friendly manner, even a stranger’s.

Alexander is a straight-A student at Valencia High in Placentia who speaks four languages. He plans to be a cardiovascular doctor. Born with a congenital heart disease, Alexander has a five-inch scar like a zipper on his chest. He’s had two open-heart surgeries and a third is expected.

They play video games together, old games such as Mega Man and Super Mario Bros. Max calls him Dada, Bengali for older brother.

Some nights when Max has a hard time falling asleep, he sneaks into Alexander’s room and boinks his brother on the head with his own before plopping on top of Alexander and falling asleep.

“I don’t really mind it,” Alexander said. “He only does it to the people he loves. Max likes to hold onto someone.”

Last year, while the family stayed at the Sheraton in Palo Alto scouting colleges, Max ran out of diapers. He wanted to swim, too, but Alexander and his parents didn’t know where they could buy diapers and a swim vest.

And that’s when an idea struck Alexander: “Wouldn’t it be great, rather than having to pack up all this stuff, if the hotel had these items?”

It was a wish from experience, from more than 30 family trips around the world, dealing with Max’s extra luggage and a lack of understanding by others.

In China, Alexander typed a letter with a few phrases in Mandarin about his brother’s condition that his parents carried around to offer explanations.

At a tour stop in Norway, Max threw a mini-fit; Alexander held his brother’s hand to calm him, but two women spoke ill of Max’s behavior in Italian. Alexander and his parents turned around and — in Italian — explained Max’s condition.

“After 7,000 times you see it, or hear it, and come to expect it, but it still hurts,” Alexander said. “I’ve grown numb to it. I expect them to not know what it is.”

Oftentimes, said the brothers’ mom, Sylvia, “Families like us don’t want to travel.”

Larry Landauer, executive director of the Regional Center of Orange County, a nonprofit providing services and support for individuals with developmental disabilities including autism, said traveling does present special challenges for many on the autism spectrum and their loved ones because of unpredictability.

At home, many live a life based on a regimented routine.

“Sensory challenges and extreme hypersensitivity can be magnified in new environments, and special diets that many follow can be difficult to replicate on the road,” he said.

“There can also be behaviors related to (autism spectrum disorder) that fellow travelers may not understand, so that can make it difficult for families to really relax and enjoy a vacation.”

But the Behuras push on, on the road.

“We love to travel and see it as a learning experience for our children,” said Sylvia Behura, a math teacher in Whittier.

Still, Alexander thought, traveling should be easier.

A letter campaign

“You could tell, it’s something he was already thinking about it,” said Alexander’s dad, Nathaniel, president of an engineering consulting firm. “We encouraged him to write letters.”

The letter took months. It wasn’t so much a letter, but an audacious business proposal to create an autism awareness and support program. The teenager sent his five-page missive to autism organizations, airlines, cruise ships, elected officials.

He waited, for months.

One organization said it was too bold. A congressman wrote back the office didn’t support individual causes. Others didn’t bother to reply.

Alexander persisted.

With his parents’ help, he shortened the letter and focused on a hotel near Disneyland — a popular destination for families with children with autism.

Dear Mr. Gee …

“It’s so rare to receive a personalized letter, something that you can hold, as opposed to something you just read on a screen,” said Ian Gee, general manager of the Sheraton Park Hotel. “There was a lot of detail and passion in the letter. He presented his family and the challenges his family faces and how they overcame them. But what I liked about it was it wasn’t a complaint; he offered suggestions.”

Gee invited Alexander and his father in to present the ideas. Gee liked what he heard. He asked Alexander to make a presentation to Sheraton Park’s managers.

“It was intimidating,” Alexander said. “They were all wearing suits.”

They liked what they heard, too.

“I did not realize how prevalent autism is, how it affects people in different ways, and never thought how it impacts their travel plans,” Gee said. “The staff wholeheartedly embraced it.”

So over the last six months, Gee and his staff worked with Alexander and his family to make changes. The hotel spent about $8,000.

A behavioral therapist was brought in to train the staff. The hotel’s restaurant menu added gluten- and casein-free offerings and was stocked with special adaptive plates, utensils and sippy cups.

The front desk now offers, for free, iPads and tablets, a weighted vest and exercise balls. In the gift shop, adult diapers, swim diapers, floaties and other supplies are available for purchase.

Prior to checking in, the hotel surveys families with children with autism for their needs and room preference. Accommodations are made so they don’t wait in long lines. The hotel also offers oversized stroller rentals and a sitting service that specializes in autism spectrum disorder care for parents who want a date night.

Drew A. Nguyen, CEO of Behavior Functions, a Costa Mesa-based company specializing in behavioral therapy and training for autism and special needs, said he hasn’t seen a program like this at a hotel before. Nguyen, who estimates nearly 3.5 million people in the country live with an autism spectrum disorder, was brought in to train the staff.

“These families face so many barriers, either staff not understanding autism or (viewing it as) a stigma. Some don’t go out at all,” Nguyen said of the families. “This is really a big project, and we are hoping this program can allow many of these families to go out into the community and be in a comfortable area and enjoy life and make memories.”

Gee said if the pilot program is successful in Anaheim, Sheraton’s parent company, Marriott, may implement it in more of its hotels.

“I did this for my brother,” Alexander said.

The program is called Member of Autism Care Services. For short, the hotel employees call it the MAX Program.

© 2017 The Orange County Register
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