Parents learn to cope with autistic offspring
Last of two parts
By Josh Grossberg
Copley News Service

Their first child was diagnosed with autism at an early age. So was their second. And then their third.

Each time was more devastating than the last, each time a new dream shattered. Greg and Gina Hubert’s three little boys - Zachary, Tyler and Tate, now 12, 10 and 6, respectively - were never going to have the lives the Southern California couple had imagined for them.

So they abandoned what they imagined and started from scratch.
A life raising three autistic boys is a life of endless precautions and planning. The refrigerator must be kept chained and locked or Tyler is likely to raid it while they’re sleeping at night and throw food and trash all over the house.

Something as simple as a visit to a doctor’s office can take hours of deciding who will get his shot first. Something as common as a trip to the dentist means that each boy needs to be sedated at a cost of $1,200 each. Something as simple as a haircut can cause them to cover their ears and rock back and forth nervously.
Once, when Greg took Zachary to a Lakers game, instead of enjoying the game, Zachary was engulfed by all the colors in the arena. He had a miserable time.
Even a trip to the beach can be overwhelming. “We went to the Santa Monica beach and parked several blocks away,” said 41-year-old Greg. “They couldn’t handle it. We had to turn around and come back. You can’t say to them, ‘Only a couple more blocks.’”

There are mean looks from the strangers who will forgive them for having two autistic children, but not three. There is the constant explaining to neighbors that yes, the children are perfectly harmless. Even Tyler, who at 10 weighs an intimidating 160 pounds.

It’s a world of lowered expectations and daily therapy sessions. It’s a world where the only way two of their children can talk is by pointing at pictures of things like beds, hairbrushes and toilets.
And it’s a world where instead of planning for their retirement, the Huberts plan for their children’s future when Greg and Gina are no longer around. “We don’t get caught up on things like fancy cars,” Greg said. “We know they’re not going to Harvard.”

But instead of retreating or admitting defeat - more than 80 percent of parents of autistic children get divorced - the Huberts did something different. They met the challenge head on.

“Most parents are angry and frustrated,” said 42-year-old Gina. “They think their kids were a mistake. But this is the way God planned them for our family. I really believe God is using our family - as crazy as it is with three kids with autism - to make a difference in the world.”

In one sense, Zachary may be less fortunate than his brothers who at least are cut off from the outside world. He knows he’s autistic, an awareness that frustrates him when he has trouble figuring something out. When asked to explain what it’s like having autism, he struggles to find the words.
“It’s definitely hard to explain,” he said in a precise sing-song typical of some autistic children. “I forget stuff easily. Kids call me lots of names, which annoys me a lot.”

But Zachary is able to attend regular classes in school. While he sometimes finds it difficult fitting in, he’s made friends and enjoys playing with other children.
Though he seems perfectly alert, Zachary is sometimes oblivious to the world around him, which means he can’t be left alone. “The house could catch on fire and he wouldn’t notice it,” Gina said.

Both low functioning and nonverbal, Tyler and Tate will probably be spared the sting of insults and uncomfortable situations.
Tyler and Tate both participate in regular sessions to learn basic skills like how to count money. The Huberts hope they can learn enough to have jobs some day. Only through constant repetition do they slowly learn.

“It doesn’t just come,” said Indra Kapur, a resource specialist with the Torrance (Calif.) Unified School District, who worked with Tyler and Tate several times a week. “It never just comes. We reinforce skills we would like them to acquire.”
The Huberts pretty much have things figured out at home. Their children may be autistic, but they aren’t cut much slack. Prayers are said before every meal and nobody leaves the table until they receive permission. And before they do anything else, they know they have to go wash their hands.

“We didn’t give up,” Gina said, recalling milestones. “Sometimes we’d get a glimpse of something they understood. My 8-year-old is potty-trained. Woo hoo.”
There were also moments of blame and questioning and of wondering if their children even loved them. “I believe they do,” Gina said. “They light up when they see us. Sometimes Tyler is looking out the window and he’s looking for me.”
Gina always seems to be smiling and laughs easily. The parents have largely made peace with their situation. But seeing her children struggle through routine tasks still causes her pain. But whatever troubles autism brought, it never shook the family’s foundation of faith and love. In fact, it may have strengthened it.
“For just a second, I was mad at God,” Gina said.

Even before they learned their children were autistic, the Huberts began teaching parenting classes. When their oldest son was diagnosed, they didn’t stop. If they could handle autistic children, surely they could help people with healthy kids. In fact, they said it made them better equipped to help other families, even those without autistic children. “We learned there was a connection,” she said. “Structure is important for autistic kids or normal kids.” The Huberts didn’t charge for their efforts. They were happy to do it and the classes grew. A few years later, in 2001, Gina had a dream that would change not only their lives, but also the lives of many other families with autistic children.

Her idea was to start a camp for families with autistic children. They formed an organization called Friends of Angels, got grants and sold candy to raise money so nobody would have to pay to attend.

“Families like ours don’t get to go outdoors,” she said. “In a place where everyone has the same difficulties, it makes it much easier.” Last summer, the Friends of Angels camp attracted 15 autistic children, but the camp was for the entire family and more than 100 people participated. There were activities for siblings and whole families. And volunteers took turns watching the kids so parents could have a good night’s sleep, a rarity in the world of autism.
“Since we live with it 24/7, we know what it’s like,” Gina said. “I can’t help people who have boys playing hockey or Little League, but I clearly have experience that will help people with autism. The camp was a success for everyone.”

This year, the Friends of Angels’ Escape From the City II camp is expected to draw even more families. Helping them organize the camp was Journey Covenant Church in Redondo Beach, Calif., a new church that welcomed the Huberts when it was formed a few years ago.

The Huberts joined the church and started a ministry for children with special needs, which at the time, included three children - their own. But word got out and now the classes attract about 10 families. While the children are given a chance to play and get some religious training, their parents are attending services nearby. “God brought us the autistic kids and the people who were skilled and gifted in areas to provide for them,” Executive Pastor Wade Kawasaki said. “It’s truly amazing the grace and understanding God has given the Huberts to make it through the day and letting other families know they’re not alone.” In June, Greg Hubert got a new job in Las Vegas, so the family packed their bags, loaded the car and moved to Nevada. They left their friends, family and church behind, but they’re confident they can start over in a new state.

And no matter what comes, they know they’ll be able to deal with it as a family. “People think these kids are a mistake, but this is the way God planned them for our family,” Gina said. “We view them as the perfect kids.”

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