Parents with autistic children share stories

Published 10:20 am Saturday, April 17, 2010

When Stacey and Dave Bahr got the confirmation that their son, David, had autism, in among the large stack of literature Stacey got was a essay by Emily Perl Kingsley titled “Welcome to Holland.”

In the essay, Kingsley writes that when a person is going to have a baby, it’s like planning a fabulous vacation — to Italy. The person buys guide books and makes wonderful plans to see things like the Coliseum, the Michelangelo David and the gondolas in Venice.

After months of anticipation, the day arrives. You pack your bags and off you go. The plane lands several hours later and the stewardess says, “Welcome to Holland.”

Email newsletter signup

“Holland?! What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of Italy,” you say.

But, Kingsley writes, there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible place. It’s just a different place.

So you must go out and buy new guide books, Kingsley writes. You must learn a whole new language. And you meet a whole new group of people you otherwise never would have met. After a while, you even begin to notice the special things Holland has, like windmills and tulips and even Rembrandts.

It’s not a bad place, Stacey said. Just a different place.

“David is my Holland,” she said.

April is Autism Awareness Month and three families with autistic children share their stories.

What is autism? Autism is a lifelong developmental disability that usually appears during the first three years of life. It’s estimated that 1 in 150 children in the U.S. are diagnosed with the disorder. In Minnesota, it’s even higher. Doctors still don’t know exactly what causes it.

Because it is a spectrum disorder, it can range in mild to severe and everywhere in between.

People with autism have a different way of seeing, hearing and feeling things. Some cannot speak, while others can seem to talk just like everyone else. Some people with autism may act in unusual ways by flapping their hands, saying certain words over and over, having temper tantrums, having little eye contact or struggling with making friends or playing games.

The Bahr family

David Bahr was just over 3 years old when he was diagnosed with autism.

“When he was 6 months old, my mom suspected something,” his mother, Stacey, recalled.

After his diagnosis, David received help from Early Childhood Special Education as well as home therapy, his mother said.

He started kindergarten in the Success Room at Lakeview Elementary School. He’s now 8 1/2 and a third-grader in the Success Room at Lakeview, a room designed specifically to help meet the needs of children with autism.

“I can’t think of a better name for the room,” Stacey said. “This school year, I see a little of this fog lifting.”

While her son still doesn’t speak, he does vocalize a lot. “And I speak David,” she said, giving her son a hug.

Through it all, Stacey has educated herself on autism and reads everything she can about the disorder.

“It’s a far different type of learning experience than I’ve ever had,” she said. “No one is saying why this is happening.”

While the disorder presents challenges, Stacey said she doesn’t love her son any less.

“He has autism. But that’s not who he is,” she said.

“Do I wish he weren’t autistic? Yes. Would I trade him? No,” Stacey said.

She wants people to know that if people see a child acting out in public, it doesn’t necessarily mean that the child is being naughty. He or she simply may not be able to express his or her needs because of autism.

The Sylvara family

Through her correspondence with a woman in Liverpool, England, Sara Sylvara carries business-sized cards with her to hand out to people who may comment on her son, James, when he’s acting out in public.

It states: “Our child has autism,” and explains that he’s not naughty. He just cannot communicate what has upset him or what he needs.

They wish people wouldn’t stare or try to offer parenting advice because discipline doesn’t work with autisic children. They’ve instead learned to re-direct their son and get him to look at something other than what upset him.

Sara and her husband, Randy, didn’t think their son had an issue before James was diagnosed with autism at age 2 1/2. “He just didn’t talk, and we had relatives who didn’t talk right away,” Sara said.

He began working with Early Childhood Special Education at Brookside Education Center and said his first word when he was 3. Now 8, he has been in Lakeview’s Success Room since kindergarten. His parents say his vocabulary continues to grow.

James likes to sneak out, so he wears a locator bracelet provided by Project Lifesaver, since he can’t say his complete name and address.

For that reason, they have introduced him to all their neighbors in Hollandale, so they know to notify them if he shows up at their homes.

His parents also believe James is the reason for the safety latch on his classroom door.

The Sylvara family attends regular Autism Support Group meetings and said there’s always a fresh face each year. They go to support other parents in similar situations.

The couple worries about what will happen to their son when they’re gone.

James’ sister, Brandy, who is 4, is already very protective of him, although they don’t expect her to be his caretaker.

“We just take one day at a time,” Sara said.

The DeRaad family

Lisa and Trevor DeRaad also have concerns about what will happen after they’re gone. They have two sons with autism. But the way the disorder affects them is as different as night and day.

Their older son, Slater, now 14, was 5 years old when he was diagnosed. He’s always been part of regular classes. He loves videos and television history and knows actors and directors.

“He has a memory like an elephant,” his father said. “He recites lines from movies.”

Their younger son, Phoenix, now 10, was diagnosed with autism when he was between 2 and 3 years old.

He attended Early Childhood Special Education classes before entering Lakeview’s Success Room.

“This program is fantasic,” Trevor said. Teachers have worked with Phoenix on making appropriate remarks. His parents said they are pleased with the responses they’re getting to questions they ask him.

“In just these last four months, we can really see changes,” Lisa said.

He still has trouble, however, communicating. “We don’t know why he’s upset or when he’s sick, but we’ve learned how to read things,” Trevor said.

For the most part, Lisa said, Phoenix is easygoing and affectionate. He will say things to get attention. He gets a lot of structure in his classroom, but his parents have found that it’s best not to have as much structure at home.

Both boys like dinousaurs and have trouble with abstract things like time and money.

Slater likes things like meat, cottage cheese and french fries.

Phoenix, however, only eats white and yellow foods.

The couple knows it’s difficult for others to understand that what may come easy for most children — like potty training — is a huge challenge for children with autism. And things like discipline don’t work either.

But that is changing. It’s hard anymore to find someone who has not been touched in some way by autism.

And it’s not bad. It’s just different.