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TCU football family learns to live with autism | Fort Worth Star ... - Fort Worth Star Telegram

Another school year and football season are days away, but Mark and Sarah Cohen would probably rather be at Albertsons.

That’s where they can watch their son.

He’ll bag groceries, load them into a customer’s car, push carts back inside the store and do anything else he can do to help during the course of his shift. It’s perfectly routine for thousands of teenagers, but not for Steven Cohen.

He and his brother Adam, 22, are autistic, Adam more severely.

They’ve grown up either at home with family or at school all of their lives. They were never left to themselves.

So when Steven, 18, scheduled to graduate next year from North Crowley High School, got a job at the neighborhood grocery store in June, it was hard to imagine a more profound feeling for his parents.

“As proud a moment as I’ve had in life,” said his father, Mark, associate athletics director for athletics communications at TCU.

His mother, Sarah, works part time as a data control specialist in the TCU admissions office. Steven’s job meant structure for his life post-school, which provides peace of mind for her as she and her husband look for the same for Adam, who is nonverbal in his communication.

There is not much time.

The academic and athletic calendar at TCU begins Aug. 21. Another full year of work duties will soon be upon the Cohens.

“We have always talked about what the boys will do when they are finished with school,” Sarah said.

That time arrived sooner than anyone can believe.

Old routines

For years, the Cohen family had a routine. Everyone would get up, Steven would help his older brother Adam get dressed and ready for school, the family — which includes oldest brother David — would have breakfast, and everyone would be out the door.

After school, the routines continued. Steven would prepare the food he knows he and Adam like. David, who graduated from TCU two years ago, would be on his homework and helping his younger brothers with theirs. Everyone helped mom with chores, Adam would sit with his iPad watching Disney movies — often, the same scene over and over — then dad would be home for the night-time routines.

If necessary, neighborhood friends or TCU students would help watch Steven and Adam if work duties or other obligations pulled Mark and Sarah away.

It’s routine for many families.

But for the Cohens, the routine was never routine, and the extra help Steven and Adam required was always present. Adam was frequently prone to outbursts, in public or at home, and learning to anticipate, prevent and manage them was a constant part of life.

“Even though I claimed I understood, it still drove me nuts when I was little,” David said. “Why can’t Adam do this? Why can’t Steven learn this? When you get older, you get the full idea. I remember my parents always told me, growing up with this, it’s going to make you so much stronger.

“And yeah, my patience is through the roof right now.”

The advocacy organization Autism Speaks defines the condition as a developmental brain disorder caused by gene or environmental influences. The disorders result in varying degrees of communication difficulty, unusual behavior and social skills and repetitive behavior.

The Centers for Disease Control estimates one in 68 children age 8 are identified as autistic.

New routines

When David moved away, routines changed. He is in his second year as director of communications for the athletic department at Southern Miss, following in his father’s footsteps.

Now Adam, at 22, has “aged out” of the special education program at Crowley and has no more school waiting for him in the fall.

His father is trying to find a job or vocation for him, too. It will be more difficult with Adam’s nonverbal form autism and outbursts, although they have become rare.

“In the past, if a child was screaming, that would throw him off,” Mark said. “Not anymore. We used to take headphones everywhere we went for him. As soon as we walked out of the house, Steven would always say, ‘Do we have the headphones?’ Because that was the routine, to bring the headphones for Adam.

“And now we don’t even need the headphones. Sarah took him to TCU football games last year for the first time. It’s just progress that he’s made.”

Still, the family is wary of the unexpected. Last month, their home lost power unexpectedly, and the loss of Wi-Fi interrupted Adam’s routine with his iPad and Disney movies.

“He was thrown for a loop,” Mark said. “Sarah told me he had some outbursts and was crying. Big tears.”

Steven, higher functioning on the autism spectrum, has always helped his older brother with his daily routines.

“Steven knows exactly what Adam needs, what Adam wants, Adam’s schedule,” Mark said. “Here’s an autistic 18-year-old who takes care of his 22-year-old autistic brother.”

As a child, Steven showed a knack for helping his mother at the grocery store. He’d even stop to straighten out shelves. Last year, he entered the store on his own and completed a short grocery list for his father.

Now he’s got a checking account.

“He gets paid every week, and every couple of weeks, we’ll go to Barnes & Noble — he loves Barnes & Noble — and he’ll look at me and I’ll say, ‘It’s your money, you earned it, get what you want,’” Mark said. “He still loves Thomas the Tank Engine trains. We probably have 150 of them at the house.

“He’ll pick up a train or a little book or some music — the other day he got the soundtrack to “Cars 3” — and he’s got his debit card, he knows the chip, and punches in the four-digit code.”

Still a family

At TCU, the Cohens have long been admired for their patience and dedication in raising their autistic sons.

School officials have always allowed Sarah the time she needed for appointments, unexpected care or emergencies.

“Mark and Sarah, they set such an awesome example to love on your children despite any obstacles or adversity they have to overcome,” baseball coach Jim Schlossnagle said. “For most people, when your child even gets sick when they’re young, you would trade places with them in a heartbeat. For your children to have a condition or an ailment that means a different way of life, it can really paralyze somebody.

“They live an active life, and that’s a great example to set. They provide awesome perspective. None of this athletics stuff really matters, it’s all about how you can provide for and love on your family.”

Mark and Sarah insist on family outings — usually TCU or Rangers games. It’s tempting to leave Adam or Steven or both behind, but they consistently talk themselves out of it.

They are a family, and they are going to act like it.

“We’ve found ways to still be a family, even with some shortcomings here and there,” David said.

They still go to the grocery store as a family.

They carefully choose their checkout line. They’re looking for one particular employee.

“Sometimes, if he’s working, I’ll just go in the store and buy something just so I can go through his line,” Mark said. “It’s the ultimate pick-me-up. There’s no greater feeling than just seeing him at work.”

Carlos Mendez: 817-390-7760, @calexmendez

Facts about autism

Autism refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences.

▪ The Centers for Disease Control and Prevention (CDC) estimates autism’s prevalence as one in 68 children in the United States. This includes one in 42 boys and one in 189 girls.

▪ An estimated 50,000 teens with autism become adults — and lose school-based autism services — each year.

▪ Around one third of people with autism remain nonverbal.

▪ Around one third of people with autism have an intellectual disability.

▪ Certain medical and mental health issues frequently accompany autism. They include gastrointestinal (GI) disorders, seizures, sleep disturbances, attention deficit and hyperactivity disorder (ADHD), anxiety and phobias.

Source: www.autismspeaks.org

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