2016-08-25 / News

Duo’s tales about autism captivate McArthur crowd

By Ben Meiklejohn
Staff Writer

BIDDEFORD – A Scarborough man and his son told their personal story of how their family has been affected by autism, at a forum earlier this month at McArthur Public Library. Derek Volk, who owns Volk Packaging Corporation in Biddeford, wrote his first book, “Chasing the Rabbit: A Dad’s Life Raising a Son on the Spectrum,” which served as the context for the forum.

Volk said it took a long time for his family to find out what was causing his son, Dylan Volk, to misbehave.

“When Dylan was 5, he went off to day camp, where we sent him off for a couple of days, he loves to swim,” Derek Volk said. “Two weeks into day camp, we get a call in from work. They said, ‘Come get your son, he’s a monster.’ They told us Dylan is not welcome to come back, he was kicked out of camp. It would be one of many places where he would not be welcome.

“We knew something was not quite right with Dylan. Camp counselors don’t generally call and say you’re kid’s a monster.”

The Volks then took their son to a number of different specialists, all of whom could diagnose Dylan Volk as having symptoms of the condition they were knowledgeable about, but none of whom ever identified him as having Asperger’s syndrome or autism.

“To the lady that specialized in OCD, that was the reason for all his problems. The experts in Tourette (syndrome) said that was the reason for his problems,” Derek Volk said. “For a long time, we were kind of cynical, thinking that these people were diagnosing him on whatever they were specialized in.”

Then Derek Volk said he got a letter from his brother with an article about autism, and a note saying, “Could this be what Dylan has?”

One of the descriptions of autism in the article that caught Derek Volk’s attention, was that autistic people can become “very hyper-focused about something.”

Derek Volk said his son gave a 90-minute presentation on birds in elementary school, and then got annoyed when the teacher cut him off.

“And then he spent 45 minutes at dinner telling us everything he couldn’t get to (during the presentation),” Derek Volk said.

Dylan Volk taught himself to read, said his father, and surprised the family one day when he told them he had been reading about birds.

“All he did for a whole year is draw pictures of birds and talk about birds,” Derek Volk. “At one point, if you said something like, ‘Call your uncle, he’s 28 today,’ then he’d say, ‘You know there are 28 different kinds of hawks.’ He’d bring everything back to birds.”

Derek Volk read the article from his brother about Asperger’s syndrome and in the last paragraph, he read that when the subject of the article was a child, he had been obsessed with vacuum cleaners, much like Dylan Volk had been obsessed with birds. And sure enough, he was diagnosed as having the condition.

Derek Volk said his son was the “Lewis and Clark” of Scarborough schools.

“Prior to that, they knew he needed help but didn’t know what to call it. At one point, at an IEP meeting, they said, ‘Pick something,’” hesaid. “He was one of the first they had ever seen as Asperger’s and he didn’t always present the classic Asperger’s case.”

“The way I saw it is, I didn’t have a problem with it at this age, as I had a personal assistant. I was special, but special in a good way,” said Dylan Volk.

“As I got a little older, I felt a little more self conscious. In 5th grade, I started not wanting people to see me go into a special ed group. I would be a little late every day until all the kids filed through the hall, so I could get in there.”

Dylan Volk said he was frustrated when educators tried to discipline him for being late without realizing the reason why he wanted to be late.

“If I’m trying to fit in with kids and I’m on the spectrum, that should be a good thing,” he said.

In the book, Derek Volk wrote about a struggle his son had with the school about where to get picked up by a bus.

“I got to middle school and had this whole big drama, which you can read about in the book,” Dylan Volk said. “I was spending half the day across town in a different school and the bus would pick me up, and it was a short bus.

“I didn’t want a chance for a cute seventh-grade girl to see me getting out of school in the short bus. It’s not going to happen. It was not something they could get their head around, the bus breaking protocol over a basic desire to fit in with my peers in middle school.”

Eventually, Dylan Volk was kicked out of middle school and spent a year with Spurwink Services before working his way back to middle school. Spurwink Services is a nonprofit organization that provides mental health services, including education for children. Derek Volk said when his son graduated from eighth grade, it was emotional for the whole family because they knew what it took for him to get there.

In high school, it was a rough road for the Volks. Dylan Volk would get depressed, say suicidal things and have tantrums and incidents that disrupted the family. The Volks tried sending him to several different boarding schools that specialized in education for autistic children.

“It was a tough time for us as a couple, because Dylan was very difficult,” said Derek Volk, whose wife is Sen. Amy Volk (R-Scarborough). “The divorce rate of parents of autistic children is just below the death of a child. Death of a child is 90 percent (divorce rate) and autism is 86 percent.

“Mostly we joked that we stayed together because nobody wanted Dylan to himself. We joked that if we ever got divorced, there would be an anti-custody battle. We were both better off with Dylan together than apart.”

“I would get a phone call and hear nothing but screaming on the other end,” Derek Volk said. “He was kicking holes in the walls, breaking things. He never hurt, or was violent to us, but he was very physical and very loud and would not drop anything ever.

“For a lot of years, I was really angry at Dylan, not because of any specific thing that he did, but because of all the things that he did. I had to mourn the child I thought I was going to have so I could love the one God gave me.”

Derek Volk said the family tried to keep TV show viewing to comedies only, because Dylan Volk was good at laughing. And when Derek Volk and his wife would have a date night together, they agreed not to talk about their son.

Dylan Volk said people who don’t understand Asperger’s or autism tend to give bad advice.

“A lot of advice that I would get is that you should just be yourself,” he said. “You should just kick back and expect to be successful by being yourself. That’s easy for you to say.

“That’s like telling a homeless person, ‘Just go home, get off the street. What are you doing here? Go home.’ To say ‘be yourself’ is very misleading and vague and crap advice. If you told me when I was 16 to just ‘be yourself,’ well, I was working in a pizza place and a black guy who looked like Obama walked in and I said, ‘Hey, get a pizza Hawaiian style.’

“I eventually lost the job because of several incidents like that. That’s me being myself. Is that OK? No. Is that me being myself? Yes.

“If you’re not getting jobs, getting dates, then you don’t have to settle for that just because of the concept to be who you are.”

Derek Volk said his son tried to attend college in Florida, but the expectation for a “well-rounded” education was not compatible with how Dylan Volk’s brain worked. Eventually, the son kept finding himself in trouble with the law and getting arrested.

One day, while visiting back in Maine in 2012, Dylan caused a stir in the family when he pulled his mother’s phone out of her pocket and posted as her on Facebook, “Dylan killed himself today. Probably should have seen it coming. Thanks for your prayers.”

Derek Volk said when he saw the number of Facebook notifications that were ringing on his phone and then saw the post, he thought to himself, “Frickin’ Dylan.”

“I was pretty confident my wife was not going to tell me something like that on Facebook. It was pretty much a desperate call for help (by Dylan),” he said.

Eventually, the Volks told their son that he could either go to At the Crossroads, a transitional living program for young adults who face therapeutic challenges, in St. John, Utah, or get dropped off at the homeless shelter. It was something, Derek Volk said, that they would have to stick to their guns about, but ultimately Dylan Volk chose to go to the facility.

“They literally saved his life. He was either ending up in jail or dead. They genuinely like him, which was good because if he worked with a therapist that didn’t like him, he picked up on that and had no interest,” said Derek Volk, “and it was not very hard to not like him.”

At one point, Dylan Volk was arrested in Utah also, but school officials urged the Volks not to bail him out. The son would call his parents and tell them the jails in Utah “are not as nice as jails in Maine but definitely better than jails in Florida.”

“You know you’re not in a good place when your son is comparing jails,” Derek Volk said. “We left him there for three weeks. He learned his lesson, got himself together and started getting in shape again.”

Dylan Volk said he has had trouble keeping jobs because employers aren’t direct with him, even when he asks them to be direct.

“If I told an employer, ‘I need you to be very direct and specific with me,’ it would be an employer’s dream, right?” asked Dylan Volk. “I don’t think neurotypical people are as direct as they claim. They do a lot of reading between the lines. They don’t realize how specific people on the spectrum need things.”

At one job, where Dylan Volk was a counselor, teaching people with disabilities, he got fired for his disability, he said.

Derek Volk said the camp manager told him, “We warned him about X, Y and Z and he didn’t do it. Turns out, what they said is, they came to him and they said, ‘Dylan, you should probably do X, Y and Z and he heard the words ‘should’ and ‘probably,’ so he took it as a suggestion and thought to himself, ‘I’m good, I don’t have to do that.’

“He had medication on his night stand and they said, ‘Dylan, you should probably take those to the nurse.’ What they should have said is, “Dylan, if you don’t take those to the nurse, you’ll get fired.’”

Now however, the father and son travel together to conferences about people on the spectrum, to speak and give people advice.

Dylan Volk said he leads workshops or seminars to help other people with autism to learn how to integrate themselves in a neurotypical world and do things like apply, and hopefully, to keep a job.

“At one conference, a Dad raised his hand. He had a 10-year-old son who really liked animation,” said Derek Volk. “‘I hate animation, how do I get him into something else?’ he asked me. ‘I don’t know how to tell you, but you better find some way to get into animation.’”

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