Hi, I’m Chris. My wife, Melissa, and I have an 11-year-old son, Owen Honor Beck. He’s awesome. Owen has an equally awesome twin sister, Jessica.
Unfortunately, Owen and Jessica don’t get to see each other much anymore. That’s because Owen has autism, and an awful lot of communication and behavioral challenges. Some of his behaviors got to be so challenging that about 18 months ago, we placed him in a residential program where he now lives with some other really great kids with autism.
Owen’s truly the cutest, happiest, hardest-working, and most loving kid you could ever ask for. And all of his teachers love working with him (he’s a bit of a charmer). If you have a minute I’d love to share his story…
In most areas, Owen operates at the level of a 24-month-old. In some ways he’s more advanced, and in some ways he’s less so. He doesn’t understand much of the world around him, and his biggest challenge is communication: Owen is completely nonverbal. As a result, he’s not able to effectively express what he’s thinking or feeling.
Over the years, he’s learned a limited number of signs for a few concepts, like “more,” “help,” and “all done.” He primarily communicates with his iPad using a program called TouchChat. It has simple pictures of objects, and when he touches them, the device speaks the word. So he can request items by clicking the “I want” button and then an activity button such as “to go,” which would then bring up buttons like “playground” or “inside” or “home.” His teachers work tirelessly on getting him to communicate better.
Owen’s New Home
As you can imagine, not being able to say what you’re thinking can get pretty frustrating. Owen expresses his frustrations by hitting himself. A lot. And with force. He hits his head with his hand, or with pretty much any object he can get hold of or run into. On average, Owen needs to have a protective helmet put on him about 40 times a week because of his self-aggressive behaviors. And his caregivers recently added a plastic shield on the front because his face hits were causing “an unacceptable amount of tissue damage.”
As Owen got bigger and stronger and more aggressive, he was hurting not just himself, but Jessica and us as well — not out of malice, but out of sheer frustration. So it became apparent that our family just couldn’t sustain this. Owen’s neuropsychologist and our school district agreed. That’s when we made the decision to place him in a residential home, The New England Center for Children in Southborough, Massachusetts, where he lives now. He goes to school six days a week and has care available 24/7, 365 days a year.
After school and on Sundays, they do all sorts of fun things at his residence. They work on life and leisure skills like toilet training, how to use a fork, showering, and interacting with each other. Owen gets to participate in the local Special Olympics, where he loves kicking soccer balls.
Teachers and school personnel take the kids out into the community to places like the grocery store, or out for lunch, where they can each pick out a snack. Owen loves many of the usual snacks most kids do: snack foods, fast food, doughnuts, and the like, but he doesn’t seem to like cold foods like ice cream. And he’ll eat foods that most kids would dodge. When he goes to the store and other kids are picking out bags of chips, he’ll wander to the produce section and grab a bag of lettuce and munch on that — plain. He’s a fairly thin fellow, as you might assume from this habit!
We FaceTime with Owen every night, but only see him in person on the weekends. One weekend we’ll go for a day visit on Sunday, and the next weekend we’ll overnight from Saturday to Sunday. I can’t say that any of us have fully adjusted to this schedule yet, and I still get a bit melancholy sometimes when dropping him off at his home. But life is a lot saner this way, and every one of us needed that.
Autism Activism: Running Marathons for Owen
When we placed Owen in his residential home, it was, of course, a sad time for us. But if you’re able to channel emotions in the right direction, I believe they can be converted into mental energy. On top of that, we suddenly had all the around-the-clock time back that we’d been devoting to caring for Owen
So where did this newfound time and energy go? After having poured herself into caring for the kids for 10 years, Melissa went back to work part time.
I decided to use my newfound energy in a positive way to advance autism awareness. And I got involved with Autism Speaks and Teamup to run a marathon.
Autism Speaks is the world’s leading autism science and advocacy organization, dedicated to funding research, increasing awareness of autism spectrum disorders, and advocating for people with autism and their families. Each year, Teamup sponsors hundreds of walks, bike races, and marathons all over the world involving thousands of people and raising millions of dollars. My initial goal was to run the London Marathon, but upon accomplishing that, my vision expanded.
The Abbott World Marathon Majors (WMMs) is an organized series consisting of six of the largest and most renowned marathons in the world: Tokyo, Boston, London, Berlin, Chicago, and New York. It’s the core of professional marathoning. As of this writing, 837 people have run all six races since inception of the WMMs. But only three Americans, and 18 people in the entire world, have ever reported running all six consecutively in a 12-month period. I know it sounds improbable, but they’ve done it — and I decided to try and be No. 4!
I enjoy running, but not such distances — and certainly not with that frequency. But running all of these marathons for the Autism Speaks cause gave me purpose. I set my mind to it, got a great coach, and set up a Twitter account, @irunforowen, to share my progress. Here’s where I am:
- London, April 26, 2015: Done!
- Berlin, September 27, 2015: Done!
- Chicago, October 11, 2015: Done!
- New York, November 1, 2015: Done!
- Tokyo, February 28, 2016: Done!
- Boston, April 18, 2016: Ready to go!
The Boston Marathon course goes right through the town Owen’s house is in, so he can come watch me — and I’ll see him while I’m running!
As soon as I cross the finish line in any of these marathons, the very first thing I do is send a quick video to Owen telling him how I did in the race and showing him my medal, because it really is his race as much as it is mine.
With the direct support of friends, family, colleagues, and generous people near and far, we’ve raised almost $50,000 for Autism Speaks. We’ve also logged more than 1,000 miles through the app Charity Miles, which sent Autism Speaks $0.25 for every mile we ran.
And most amazingly, through coverage that has built along the way, I’ve been able to share Owen’s story with countless people. I’m bothered by the idea that kids with autism who live in residential settings, like Owen, might be tucked away from society. So sharing Owen’s story is important to me. Despite the fact that he left our home, knowing that many others now know his story has made this the most rewarding year of my life.
Chris has been asked to speak at the Abbott World Marathon Majors (WMMs) this weekend at the Boston Marathon festivities as a guest speaker along with many notable world-record holders. Please cheer for Chris this weekend as he runs the Boston Marathon while he fundraises and spreads awareness.
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