Posts tagged ‘autism’

Every Day a Struggle, Every Day A Gift

Our November/December 2018 Cover Story

Caring for twin sons with autism has dominated Curt and Ana Warner’s lives for two decades. In a “blisteringly honest” new book, they tell their family’s story in a way that they hope will help other families—and, in the telling, themselves.

By Lori Shontz  ’91 Lib, ’13 MEd Edu WC // Photographs by Michael Lewis


When the invitation appeared in his inbox, Curt Warner ignored it. The National Autism Conference was holding its 2013 annual event at University Park, and the organizers wanted Warner ’83 Lib to speak about his family. He loved his boys so much—but how could he talk about them? For a lot of reasons, that just wasn’t the kind of thing Warner or his wife, Ana, had ever done.

At first, especially, they didn’t know what to say. As toddlers, their twin sons Austin and Christian were nonverbal and energetic and aggressive, far more difficult to handle than their older son, Jonathan. Doctors couldn’t explain why the boys would eat books or string or fabric, or why they’d cry and hit and slap and bite. Shoppers and passersby were judgmental when the Warners took the boys out and a meltdown ensued—whether through words or nasty looks, it was clear they blamed bad parenting.

The boys weren’t diagnosed as severely autistic until they were 5. The Warners then tried a variety of therapies and treatments; eventually Ana began cooking every meal they consumed—gluten-free, dairy-free, no preservatives, organic everything—because it consistently seemed to help the boys’ behavior. Still, they were a challenge. At one point, Curt and Ana had to sleep in shifts to monitor the boys, and for a while Ana homeschooled them.

As a three-time Pro Bowl running back with the Seattle Seahawks from 1983–89, Curt would have been a regular attendee at team events after retirement. But he rarely showed. He couldn’t. He didn’t leave his family except to work at the car dealership he owned in the suburbs of Portland, Ore.

When the boys’ behavior calmed after puberty, Curt didn’t want to relive what they’d been through. It’s never been a 24/7 job to take care of the boys. Says Curt: “It’s 25/7.” He and Ana had automatic locks and alarms installed on every door and window to make sure the boys didn’t leave, because they would have no idea how to get back. Curt learned to hang drywall, because the twins so frequently kicked and punched holes in walls. He rushed home in a panic one day when Austin, then 12, thought he was Pinocchio inside the whale, and he had to light a fire to get out—and he somehow found matches and ended up burning the house down. Everyone got out safe, but the Warners lost everything.

And so, when that invitation hit his inbox back in 2013, Curt at first didn’t respond. He couldn’t envision speaking about those days; he feared doing so would result in one of two things. First, that perhaps people would think he was complaining; he couldn’t abide that. He loves his boys, and in many ways, he believes he has been blessed. And second, the biggie: Curt didn’t think he could make it through a talk without being overcome by emotion. He didn’t want to cry. (more…)

December 10, 2018 at 2:14 pm 2 comments

Football Great Curt Warner Opens Up about Autism

The Warner family at the podium, as captured by Trish Hummer of Penn State Outreach.

The Warner family at the podium, as captured by Trish Hummer of Penn State Outreach.

When the doctor said “autism”—about five minutes after Curt and Ana Warner entered their new pediatrician’s office with their 5-year-old twins, who weren’t developing the way their older son had—they didn’t know what to think. Autism? All they knew of autism was Raymond from Rain Man, and Dustin Hoffman’s character didn’t resemble either of their boys, Austin or Christian.

So Curt and Ana went home and went to the Internet with one question in mind: How do we fix this?

Turns out, they couldn’t. All they could do was live with it—and love their boys. Which hasn’t been easy.

Austin and Christian are 19 years old now, high school seniors with what the Warners call a “medium” level of autism. They’re old enough to shave, but Ana has to do it for them. When they travel, Curt and Ana fly separately, reducing the odds that the twins could be left without either parent to care for them. All doors in their home are always locked—adults carry the keys on their person, even when they’re inside, at all times—and their property is surrounded by a high fence to keep the twins from wandering away.

That’s not to say there aren’t moments of joy. The twins know everything about Disney (name a movie, Austin will respond immediately with the director and producer), so there are movie nights and family trips to the theme park, and Ana records milestones like new words or properly using the bathroom on sticky notes, the better to remember.

“Count your blessings,” Ana told attendees Thursday at the National Autism Conference at Penn State. “It helps a lot. You’re going to have dark days, so remember to count your blessings. Write them down and read them, the funny stories. When you’re sad, you’ll laugh at stuff like that. It will brighten up your day. “

The Warners told their story—for the first time, excepting this short ESPN piece in December 2011—Thursday afternoon at the National Autism Conference at Penn State. (Click here to watch; it lasts about an hour.) Curt, tailback on the 1982 national championship team and a three-time Pro Bowler with the Seattle Seahawks, Ana, and their other son Jonathan, a redshirt freshman wide receiver for the Nittany Lions, stood together at the podium. It was to give all sides of their story, of course, but also to give each other support; it took Curt months to respond to the invitation to speak, he said, because he gets so emotional talking about “the boys.”

The Warners weren’t polished or practiced. Sometimes they rambled. Sometimes they talked too softly to be clearly heard in the back. Sometimes they talked over each other. But they were raw and real and compelling. In the audience, mostly parents and educators of autistic children, people whispered “yes,” or “right,” or nodded as the Warners discussed their ups and downs. As Jonathan talked about how he knows that one day, when his parents are gone, he’ll be responsible for taking care of his brothers’ every need and that he’ll be proud to do it, a woman sitting across the aisle from me went to the back of the room for cocktail napkins and handed some to another woman who needed something to wipe away her tears. (I could have used a couple myself.)

Curt Warner retired after the 1990 season, but he looks almost fit enough to play.

Curt Warner retired after the 1990 season, but he looks almost fit enough to play.

Curt opened the talk by giving what he called “three disclaimers”—that he and Ana were speaking only of their own opinions and experiences, that they are not politically affiliated with any group, and that he wanted to “commend the front-line people,” parents and educators, who deal with autism every day.

“I assure you that I’m in the same boat with you,” he said. “I don’t want this challenge. I tell people that—I don’t want this, I don’t want to deal with it. Let somebody else deal with it. Well, sorry—you got picked. Whether you like it whether you don’t like it, you’ve got to deal with it. We choose to deal with it from an optimistic standpoint. We are never going to give up on our boys.”

This brought applause. Curt added: “Never give up, never give in. But you learn to pray quite a bit. Learn to pray—this will force you to your knees.”

Then he stepped away from the podium, unable to continue. He took a few deep breaths. “Excuse me,” he said, softly.

Ana took over as the family discussed everything from the twins’ educational options to how to make other siblings feel included to the importance of date night, even if that’s just popcorn from Target and a movie. And she told the story that I’m sure no one in the room will be able to forget.

The twins—particularly Austin—are obsessed with Disney. They can rattle off the director and producers of every Disney film, and they often call people by the names of Disney characters. (Ana, who laughed as she called herself “the sergeant,” is often addressed as Evil Queen or Evil Stepmother or Cruella. Curt is Scar, but sometimes he gets Cruella, too. The twins called a teacher Rasputin.) Sometimes, Ana told ESPN, the twins “think they are in a Disney movie.”

One day in 2008, 12-year-old Austin thought he was Pinocchio, trapped in the belly of a whale. Pinocchio got out by setting a fire, so Austin followed his father, discovered where the matches were hidden in the garage, and later returned to get them and set a fire in his bedroom. Ana found out when she saw Austin creeping up the steps with a glass of water to put out the fire. Jonathan—who was home sick from school that day—helped her get the twins out of the house, and they piled in the car and waited outside for Curt to race home from work.

Their home was destroyed, along with many mementos from Warner’s career. As ESPN put it, his AFC Rookie of the Year and Player of the Year trophies melted.

The Warners rebuilt their home—with extra-thick walls. (That said, hormones made the twins so destructive during puberty that Curt had to learn to hang dry wall.) They found a school where the twins are learning, although they’re not being challenged as much as Curt and Ana would like. They adopted a daughter, Isabella. They watched Jonathan help to lead his Camas (Wash.) High School team to the state semifinals. They are thrilled as they see more options and more support become available for autistic children and their families.

And they are beginning to talk about their experiences.

“I think the most important thing in this whole situation comes down to having faith,” Curt said, wrapping up the talk. “I will say that again and again and again: You’ve got to have some faith because this is a struggle that doesn’t end. … It’s an ongoing process; it’s not something you volunteer for. You’re picked; you’ve got to deal with it. So God bless all of you.”

Ana had the last word. “Count your blessings,” she reminded the audience. “Write them down—it makes life easier. And the numbers (of autistic children) are now huge. So society better get used to us. We’re not going anywhere.”

She raised her fists. The audience stood and applauded.

Lori Shontz, senior editor

August 2, 2013 at 2:22 pm 4 comments

Crowd-funding Autism Research

We got an interesting email recently from Elisabeth Whyte, who’s a post-doc working in the Laboratory of Developmental Neuroscience (part of Penn State’s psychology department) on what seems like a cool project: developing a game that would help children with autism get better at identifying faces and making eye contact, two things that can make it difficult for people with autism to connect with others. Whyte, who plays and blogs about World of Warcraft, is trying to use elements of video games to make the intervention more fun and more effective for the participants. She’s working with faculty member Suzanne Scherf.

The problem: Getting enough money. Whyte is between grants right now, so she’s organized a crowd-funding project as part of the #SciFund Challenge. You can click here to watch a video about the research, get some more information on how crowd-funding works, and get details on what the money will be used for. In this case, the money will help pay for MRIs of the brains of people participating in the first phrase of the project—the MRIs cost $500 each—and prepare for the second phase. She’s looking to raise $10,000 by Dec. 14; the project is more than a third of the way there.

The project has a blog, as well, which has some information about the project and some general information about autism, too. And you can read an in-depth interview with Whyte, in which she talks about both the project and the possibilities (and limitations) of crowd-funding, by clicking here.

Crowd-sourcing as a form of funding for research seems to be a growing trend. For more background, check out this 2011 piece from the New York Times and a more recent blog from The Huffington Post.

Lori Shontz, senior editor

December 7, 2012 at 2:27 pm Leave a comment

The Blue Band on YouTube

Vince Verbeke ’82 called my attention to the fact that you can now watch WPSU-TV’s excellent one-hour special, Making the Blue Band, on YouTube. Or, if 58 minutes is a little longer than you like to spend in front of your computer monitor, you can watch the five-minute trailer for the show.

It turns out that WPSU (which some of you may remember as WPSX-TV; they changed the call letters a few years back) has a whole channel on YouTube, where you can find everything from full-length specials on autism, Alzheimer’s, and other topics, to episodes of the high-school game show Scholastic Scrimmage, to three- to five-minute gardening pieces on such topics as composting, growing blueberries, and creating a butterfly garden. I also noticed an interview from last football season with Sean Lee, who was taking a medical redshirt at the time while rehabbing a knee injury.

Lots of good stuff here.

Tina Hay, editor

May 22, 2009 at 2:51 pm Leave a comment

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