Family weighs options for autistic son

Editor’s note: This is the first part of a two-part series on autism spectrum disorder.

Twenty-one-year-old Zachary Mutnansky wears headphones and bobs his head while sitting at a kitchen table at his Kipton home.

Mutnansky’s music accompanies a preschool teaching program on letters. And he likes it. When he was 4 years old, Zachary was diagnosed with autism spectrum disorder, said his parents, Maria and Pete Mutnansky.

“But there were signs from the time he was 18 months old,” said Maria Mutnansky, 47. “He was missing milestones.”

People learn at different speeds, said 51-year-old Pete Mutnansky.

“Even the doctors said, ‘Well, the older kids are speaking for him,’ ” Maria Mutnansky said. “And back then, it wasn’t as well known.”

April is National Autism Awareness Month, according to www.autismsociety.org.

Autism spectrum disorder affects one in 68 children, according to the website.

Signs to look for include: Lack of or delay in spoken language; repetitive use of language and or motor mannerisms, such as hand flapping, or twirling objects; little or no eye contact; lack of interest in peer relationships; lack of spontaneous or make-believe play; persistent fixation on parts of objects, according to the website and the “Learn the Signs. Act Early,” page on the Centers for Disease Control and Prevention website at www.cdc.gov.

Observances of Autism Awareness Month include wearing a puzzle ribbon, wearing blue or adding blue light bulbs to porch lights or other building lights.

The Mutnansky family works through blocks to understanding posed by autism.

While Pete Mutnansky manages a McDonald’s franchise restaurant in New London, his wife serves her household in a traditional role of mother and caretaker.

A daily quest is to know the mind of a mostly nonverbal child locked in his own literal concrete world.

“It’s challenging but rewarding,” Maria Mutnansky said. “But he’s very loving and very sweet and good-natured.”

The Mutnansky family includes five children from ages 27 to 3 years. Zachary is the middle child.

Maria Mutnansky recalls thinking other parents did not discipline their children well when they behaved poorly in public places, such as a grocery store.

“(The journey) can be kind of lonely,” she said. “Even in my own family sometimes they would say, ‘Why aren’t you disciplining him more?’ It’s hard to know what the comprehension is.

“The comprehension is so different. When we had Linus (now age 9), there was a 12-year gap. When Linus was 18 months old and Zachary was 13, Linus’s comprehension was surpassing Zachary.

“What hit me the most was to be in this growing body and to not have that comprehension.”

Maria Mutnansky paused and cried, and Linus hugged her.

“To be trying to communicate and to not have that ability,” she said.

Meanwhile, Zachary pointed to colors on an iPad and spoke color names, “Red, purple, pink, blue.”

His mother spoke each color back to him.

“It definitely gives you a look into other people’s struggles that you would not be privy to otherwise. He’s very persistent,” Maria Mutnansky said.

“And single-minded,” Pete said.

“We tried to start a support group when he was at Firelands and nobody came,” Maria Mutnansky said. “It was two other moms. It is difficult to not have other people who know the journey, because people cannot understand it if they’re not living it.”

It’s a whole other culture, Pete Mutnansky said, and the people downplay it.

“From the minute we went to our church at Sacred Heart in Oberlin, they were so glad we brought him to church,” Maria Mutnansky said. “They never cared that he was hooting.

“He used to hoot when he was younger. Regardless of how much they understood, they were very supportive. I think at times, people don’t know how much it affects everything.”

If the family considers a vacation trip or visit to a restaurant, considerations about Zachary are weighed.

“How is he going to handle the noise?” Maria Mutnansky said. “He doesn’t like crowds. He can get over stimulated. But he’s always been very loving.”

Zachary is a good hugger and will hug back, Pete Mutnansky said.

He also enjoys music and has always been a music lover, his mother said.

“I didn’t know where to look for lessons,” she said. “You would have to have a special person teach that music class.”

Zachary attends Murray Ridge School at 1091 Infirmary Road in Elyria. Although he may attend there until his 22nd birthday in December, his mother is allowing this spring to be his graduation.

“I get the sense he knows he is loved there,” Maria Mutnansky said. “He has had mostly good teachers, and some that have been phenomenal.”

Zachary asks her to write block letters for a Subway sign, and add arrows.

“Subway sign, yes,” he says.

“Subway sign, yes,” his mother said.

Later, he returns to the table with an iPad.

“Dairy Queen, yes,” Zachary says. “Big Dairy Queen sign, yes.”

“I’m not sure what he’s asking,” Maria Mutnansky said. “I’m not going to tell him I’m going to take him because I’m not taking him.”

“We can’t always successfully redirect him,” Pete Mutnansky said.

Now, the family is faced with what comes next for Zachary, Maria Mutnansky said.

“I’m figuring the end of the school year will be a clean break for him,” she said.

Options include working in the community or attending Lucy Idol center in Vermilion through a self waiver of money through social security.

“My biggest hope for him always is meaningful life experience,” Maria Mutnansky said. “I don’t care if he’s paid, but contributing in a way that makes him happy.

“He’s had several jobs through their Liaison program at Murray Ridge, to see what it’s like to get out in the community. But they’re overseen the whole time. I don’t know. This is all a work in progress. This is what we’re facing now.”

While Zachary played Temple Run, a video game involving a guy running away from a monkey, his parents recalled blessed milestones.

“I remember the first time he called me, ‘Mom,’ and he was seven,” Maria Mutnansky said. “It was a huge, big deal. I didn’t think he ever would.”

“For awhile, if you would say, ‘Good morning Zachary.’ He would say, ‘Good morning, Zachary,’” Pete Mutnansky said. “A couple years ago, I said, ‘Good morning, Zachary.’ And he said, ‘Good morning, Daddy.’”

Maria Mutnansky said milestones are a really mixed bag and they can be emotional for her as a mom.

“There are milestones you would be experiencing, but you’re not, like at age 16 when they would be driving,” she said.

Zachary never learned to ride a bike, his father said.

Autism research has not uncovered why or how it occurs.

“I think there are developments now in therapies that young people can benefit from while their brains are still elastic,” Maria Mutnansky said.

“They still don’t know what causes it.”

She said she suspects childhood immunizations, and refuses to have the youngest two children inoculated.

Regardless, lack of communication remains a challenge.

Pete said, “He only has one reply to this question: ‘Zachary is ...’”

Without hesitation Zachary said, “Happy.”

CAROL HARPER — THE MORNING JOURNAL Zachary Mutnansky, 21, reaches over to take the hand of his mother, Maria Mutnansky, 46, in their Kipton home. Zachary was diagnosed with autism spectrum disorder about age 4 Mostly non-verbal, Zachary is very sweet and loving, his mother says.