A day in the life of parents of children with autism

Tarryl Zdanky writes two words on a white board—“Good” and “Sick”—then shows them to her 20-year-old son, Danny. “Which one are you?” she asks.

Autism today

Today, 1 in 68 kids are diagnosed with autism, vastly more than the 1 in 150 kids doctors diagnosed in 2000, the year many experts started keeping track.

“We’ve come a long way as far as awareness, and the funding for autism research has increased exponentially,” says Dr. Alan Rosenblatt, a nationally renowned specialist in neurodevelopmental pediatrics, author and member of Chicago Special Parent’s advisory board.

Because of organizations such as Autism Speaks, there’s been a huge emphasis on early identification and a greater acceptance in the community, he says, making for a more compassionate place for all people with special needs.

There’s still work to do.

The headphones Danny always wears to silence the busy, noisy world still allow his mother inside. Danny lifts his head, utters an indecipherable sound and points to “Good.”

But not before he coughs loudly.

“Are you sure?” she asks.

Danny doesn’t respond this time. He buries his head behind her back, gently rocks his body and utters a moan. It’s one of the few sounds he makes.

Danny doesn’t communicate with words, sentences and conversations. He does so with a dry erase board, an iPad or texts. His last verbal words to his parents were “baba,” “dada,” and “dog.” He was 20 months old.

Soon after, he was diagnosed with autism. Since then, he has said nothing understandable. He mostly hums, with rare eye contact. He will sometimes nod yes or no. Or wave goodbye, sort of. But not always.

“Natalie will be home soon,” his mother tells him. Danny doesn’t look up.

Danny’s younger sister, Natalie, attends the Turning Pointe Autism Foundation in Naperville, about 10 minutes from their home. The massive facility offers classes, therapies and compassion to a dozen or so students with autism, though it’s designed for many more. Here, specially trained Intense Behavior Interventionists, or IBIs, make breakthroughs to the autism world on a daily basis.

As a baby, Natalie’s first words were, “All done, all done, all done,” usually after eating dinner. And, while looking out the front door, “Outside, outside, outside.” Those also were her last words.

Now 18, she still doesn’t talk. She wears world-silencing headphones around the clock, just like Danny.

“Natalie, what do you want to say about the mission of the European Union?” asks Cynthia Carhart, an IBI.

In response, she points to pre-written words on a flash card. Without a sound, she points out her thoughts, one letter at a time, then one word at a time. Carhart writes down each word and reads them back to her: “For the betterment of man, this is good because it gives hope to many other countries.”

Natalie looks away, for a moment, to an overhead light that’s shielded with cloth to reduce its brightness. It’s one of many touches here to avoid over-stimulating the sensory-sensitive students.

“You’re awesome, girlie,” Carhart tells Natalie over the indecipherable yells of another student. “Full thoughts and complete sentences. I’m super proud of you, sweetie.”

Natalie, who was diagnosed as a toddler, leans over and kisses Carhart’s cheek.

‘A magic way’

On this typical day in the life of a family dealing with autism, Danny stayed home sick from his job at the Supported Training Experiences Post Secondary vocational program, or STEPS, where he sorts and bags pens, ice packs and jewelry.

The night before, Natalie vomited in the shower, yet still attended school the next morning. She excels there, even being voted the School Council vice president.

Before she started classes and therapies there, nearly three years ago, she couldn’t respond with a yes or no answer. She would violently hit herself or slam her head against something. Her inner world was her only world.

Turning Pointe has been, literally, a turning point in her life.

“They have a magic way with Natalie,” says her mother, Tarryl.

“They treat special needs kids as intelligent people,” says her father, Tom.

When Tarryl first watched Natalie communicate at school, seemingly miraculously, she cried: “I couldn’t believe she could do that. After all these years, we had no idea.”

Today, Natalie’s parents are convinced she hears everything, sees everything, understands most things. Whether she decides to reply is another story. Same with Danny. But her parents are elated at her progress.

The couple hasn’t given up hope for more. They quietly dream of one day communicating again with their children. “Dog” or “outside” would be monumental.

When the siblings were young, the family drove to Yale University for a study on siblings with autism.

“I met a woman at the Ronald McDonald House whose daughter started talking when she was 21,” Tarryl says. “She told me never to give up hope.”

The two siblings have many similarities. Neither of them are potty-trained. Both peel their gums, sometimes until they bleed. Both enjoy watching cartoons. Both want to eat as soon as they get home from school. Both enjoy using the Proloquo2go program on their iPad. Both will shred papers, even important documents, if not “redirected,” a familiar word in the autism spectrum world.

For all their obvious similarities, Danny and Natalie are quite different behind their societal label of low-functioning autism.

Danny is more agreeable and affectionate. Natalie is more of an independent spirit.

Danny is an early riser. Natalie has trouble sleeping. Danny enjoys playing on a computer, often getting so excited he wakes the family. Natalie enjoys listening to Beyonce and will only sleep on a sofa. (Because of this, in part, the family cannot travel anywhere overnight.) Also, Natalie has little patience, while Danny has always been more laid back.

“He’s just kind of chill,” says Evan Staley, an IBI at Turning Pointe who sports a tie-dyed shirt, mop of hair and easy smile.

A couple of times a week, Staley picks up Danny for field trips to the library, arcade and fitness center, among other places. Their affection is mutual and it shows.

Similar to Natalie, Danny is able to keep an eye on everything without literally keeping an eye on everything.

“Danny and Natalie are both smart and intelligent, but it’s not always obvious with their emotions and behavior,” Staley says. “They absorb more than most people think.”

Takes a toll on a marriage

At home, Natalie and Danny are not always the friendliest of siblings. He turns off TV shows Natalie likes. She is determined to get what she wants from Danny, sometimes taking two family members to stop her.

“They’ve had their battles,” their mother says.

The couple also has a 17-year-old daughter, Karisa, who started talking late. The couple instinctively thought she, too, had autism. She didn’t. She’s a standout traditional student, taking advanced classes in high school while volunteering at Adler Planetarium.

“She’s the glue between Danny and Natalie,” Tom says.

As a family, they enjoy watching “American Idol,” taking walks in the park, and playing the classic board game Trouble. Karisa often watches her older siblings while her parents are at work.

Transitions during the day, every day, are the most difficult challenges for Danny and Natalie. From bed to school to bus to home, even waking up to walking to the bathroom is a major transition.

Both siblings are constantly “stimming,” which describes stimulatory behavior. The method changes frequently, from ripping papers and waving things to rocking their bodies and biting their hands. Danny gets easily overstimulated by noise, paralyzing him.

Natalie will need to have her teeth removed from picking at her gums. Both gorge themselves eating, so much so that they steal food from the kitchen cabinet if it’s left unlocked.

The family needs more in-home personal support staff, similar to Evan Staley from Turning Pointe. “They are blessings for families like ours,” said Tarryl, who works at the local Whole Foods Market.

Tom works long hours as a railroad telecommunications supervisor. He’s typically up by 4 a.m. and out the door before dawn for his long commute into the city. On the weekends, he wakes up early to spend time with Danny. It’s their time to bond.

Tarryl is the one who juggles the homefront duties, activities and responsibilities. Each weekday morning, she wakes Danny and Natalie, cleans them, dresses them, makes their lunches, writes notes to teachers, and gets them on the school bus. If the bus is late, Natalie will take off her coat, shoes and socks for her mother to put them back on.

On her days off from work, she makes doctor appointments, runs errands, performs housework, and works on her business project, “Tarryl’s Teaching Tools.”

It’s a “Shopxplore” program designed to help parents with special needs children learn common activities, such as tasks in the home, grocery shopping and schedules for community outings. Along the way, it promotes independence and more familiarity with transitions. (For more info, visit kickstarter.com/profile/tarrylsteachingtools.)

“I would like to make a difference in the lives of others,” says Tarryl, who also has a 32-year-old daughter and two grandkids.

The difference she has made in the lives of her children has taken a toll in her marriage. “It takes a toll on any marriage,” she says.

Over their 21-year marriage, she and Tom have taken only two vacation trips: One for their honeymoon and the other to Yale, with their young kids, for the study. Even their recent wedding anniversary had to be postponed, again. All their time gets invested into Danny and Natalie. This will continue until death do them part. Or until Tom and Tarryl can physically no longer care for them.

They have no complaints. No regrets. No apologies.

“We love these kids more than anything, and these situations have made our family stronger than I ever thought possible. We’re enjoying getting to know them better. Who they are and what they want in life, their life,” Tarryl says while checking the clock for Natalie’s arrival.

Danny appeared oblivious to such societal trappings. In his world, clocks mean nothing. Repetitive routines stitch together the siblings’ tapestry of time. Their world is within the moment. This moment. Right now. And then it’s gone. Until the next moment arrives, as if unexpected.

“Some parents say they take things one day at a time,” Tarryl says. “Here, we take things one hour at a time.”

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