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Why We Walk: Parker's Journey and the Amazing Race

By Robin Bierly

Editor's note: The opinions expressed herein are those of the author exclusively.
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Things have never been easy for our son, Parker. Born 11 weeks early and weighing in at a whopping two pounds, Parker spent the first 13 weeks of his life in the NICU and the first year of his life on oxygen. Developmentally, he was behind his peers in that first year, but it was assumed that it was due to his prematurity. After enlisting the help of an amazing team of early intervention specialists to help with these delays, we started paying more attention to behaviors that were keeping him from relating to the rest of the world. By the time he was 18 months old, the flapping of his arms, the spinning of objects, the

lack of eye contact, the lack of verbalizations, the loud noises he would make when exposed to uncomfortable situations, the repetitive movements he made with his legs, the un-responsiveness to his name, his inability to properly play with toys, and the need to constantly be in motion were full blown. We decided to look up learning disabilities on the internet and we stumbled across an autism checklist. Our hearts sank as we realized that Parker demonstrated almost every behavior on that list. We arranged an appointment with a developmental pediatrician and Parker was diagnosed with autism at the age of two.

If you saw Parker today, you would never guess the difficulties he faced early on in life. Most of the behaviors described above are gone or are much more subdued. After three and a half years of intensive ABA therapy, occupational therapy, speech therapy, physical therapy, a gluten-free/casein-free diet, a regimen of nutritional supplements and a lot of love from so many dedicated individuals, Parker is a happy and healthy six year old kindergarten student. He greets his teacher and his classmates with a giant smile each morning when he arrives and he can't wait until library day on Thursdays to pick out two new Dr. Seuss books to read. He participates in all kinds of after-school sports and activities; he laughs at the goofy jokes that his sister tells; and he loves inviting friends over to his house for play dates. A light has gone on inside of him and he has let the world in.

To say that things are easy for Parker now would be incorrect (he still has to work hard to make these social connections and he still needs a Therapeutic Support Staff to help him in the classroom), but we definitely consider ourselves to be an extremely lucky family. We have heard our son call us “Mom” and “Dad,” we get hugs and kisses on a regular basis, and we have even heard our son tell us, “I love you so much that it makes my heart so happy when I see you.” Unfortunately in the world of autism, Parker's case is the exception and not the rule. There are too many families out there trying all of the things that we have tried (and more) and are still not hearing their child utter a word or recognize them as a parent or spontaneously embrace them. Reasons such as this make the research being funded from events like the “We Are … Curing Autism Now 5K Race/3K Walk” so invaluable. There is still so much to learn about autism, but we feel much more confident that the answers will be found because of the research money that is being generated by events like the one on the Penn State Campus.

We were lucky enough to get involved in the “We Are … Curing Autism Now 5K Race/3K Walk” at Penn State during the first year that it was held. We and two other families with little boys on the spectrum decided to band together and create a team called the “Penns Valley All-Stars.” It was one the most fulfilling and energizing decisions that we have ever made. After we sent out e-mails and letters to family and friends asking them to participate and/or donate to the race, we were shocked and touched by the outpouring of love and support we received. Most of these people had wanted to help us out through the years, but they had never known how. Many of them wanted to ask questions or encourage us as we struggled through the daily challenges of autism, but they didn't know what to say. When the race came about, though, it seemed as if they finally had a way to help, they finally had a way to broach the subject of autism, and they could finally ask the questions they had always wanted to ask.

What was also very touching to us about the “We Are … Curing Autism Now 5K Race/3K Walk” was the work being done by hundreds of college students who had no ties to autism. Most of the brothers and sisters of Beta Sigma Beta, Pi Beta Phi, and Sigma Delta Tau didn't have loved ones on the spectrum, they weren't being paid to do this; they were just doing good to do good. The thought of that still brings tears to my eyes today. We were fortunate enough to get to know the college organizers of the PSU race and our kids were lucky enough to get to know them, too. The students wanted to know our ideas about how to get the whole community involved, they held a couple of functions to get to know our kids (and celebrate them!), they worked hard to get the State College Borough to let us take over the streets (not just the sidewalks!) during the walk, and they continue to work tirelessly for the fourth year to raise the money that is helping out people with autism all over this country and all over this world.

The “We Are … Curing Autism Now 5K Race/3K Walk” at Penn State is starting to become a staple and something that people look forward to each year. We know that we certainly look forward to it. You just can't describe the feeling of seeing thousands of people take over the streets of your community to raise money to help kids just like yours. You just cannot describe the feeling of watching your child (and children who face the same daily struggles as him) be the center of attention for a day. For the last three years, the feelings of hope, change and the promise of answers lingers in the air on a Saturday in April in a small town in Pennsylvania. For that reason, it's exciting to know that many other communities are going to soon benefit from this same experience. The creation of “Autism Speaks U” will not only bring this experience to other college campuses and their surrounding communities, but it will also raise the money to fund the research that might make life a little easier for kids like Parker in the future. It might just give a voice to those kids who still don't speak; it might give a child the skills to make a friend or it might allow a parent the chance to hear their child say, “I love you,” for the first time.

On April 4, you will be sure to find Parker and the rest of the Penns Valley All-Stars parading through the streets of State College. Some of us will be running; some of us will be walking. Some of us will be pushing strollers, pulling wagons, and some of us will be riding our Big Wheels, but we will all be moving with the same goal in mind - to win the fight against the complex disorder known as autism. Thank you to the students at Penn State University who are working so hard to make this a dream a reality; we appreciate it from the bottom of our hearts.

For more information about the Penn State event and other Autism Speaks U events, visit events.autismspeaks.org/u.

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