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Severe Autism Didn't Stop My Sons From Finding Their Joy

Alex and Jamie Schneider
October 8, 2019
From the WebMD Archives

By Robyn K. Schneider, as told to Jennifer Clopton

When my identical twin boys, Jamie and Alex (Alie), were both diagnosed with autism at 21 months old, my husband and I felt lost and overwhelmed. It was the early 90s, support and educational information was scarce, and I’m not sure that either of us fully understood exactly what the diagnosis meant or how severe it was going to be.

But there was no real time for despair. We had two children to take care of, so we just moved forward, determined to find as many resources for them as possible.

In the beginning, we focused on education and therapy. But after a couple of years, we pivoted in our thinking. Our boys are severely autistic, low on the spectrum, and non-verbal, and we soon realized their lives couldn’t just be full of structured education and therapy.

As important as their education was, we wanted them to have fun.

So, as they grew, we tried it all - basketball, horseback riding, karate, gymnastics, swimming, and more. Since they weren’t able to tell us how they felt about different experiences, we observed their behaviors and demeanor to figure out what they liked best and then added those activities into their lives.

When a friend who ran marathons suggested we add running into the mix, truthfully, we thought she was crazy. I couldn’t imagine my sons running off without us – they had never been even more than just an arm’s length away from us at any time.

But then one day, when they were 15, we went to watch a race. As our boys stood at the finish line with the music playing, the crowd cheering, and runners streaming past us, we saw something ignite inside them. They began jumping up and down and were so excited and enthralled in a way we’d never seen before. It was magical. Their passion was born in that moment, and we knew it was something we had to pursue for them.

We found a running club that catered to special needs athletes by pairing them with seasoned runners who helped with the things they didn’t understand - pacing, hydration, directions, and even how to tie their shoes. An indoor track didn’t hold the same allure for Jamie and Alie as being outside, so three times a week they would team up with coaches and take off running in our community - enjoying nature, reveling in the feel of the wind in their faces, and getting to explore new routes and trails.

Our goal in the beginning was simply to fill their time with something they loved, and we succeeded on that front from the start. But pretty early on it also became evident that Alie has a special gift for competitive racing. Luckily for us, one of the coaches took Alie under their wing and began to train him privately.

In 2010, when they were 20 – they both ran their first marathon. We had absolutely no expectations other than hoping they would enjoy the experience.

Jamie ran the race with my husband and finished in 6 hours, 13 minutes, and 41 seconds. He was smiling as he crossed the finish line. We knew it was an amazing accomplishment for him.

But Alie shocked us all. He finished his first marathon in 3 hours, 27 minutes, and 47 seconds. He was in his glory. With each year, he has become faster, now having competed in 19 marathons, and setting a personal record in the 2019 Boston Marathon with a time of 2 hours, 48 minutes, and 3 seconds. He has run in hundreds of races and most often wins his age group.

My sons’ love for running has not abated through the years. Now 29, they are still just as excited to run today as they did when they first started. That sort of excitement is contagious – not long after the boys started running, my husband and I thought, Why are we standing on the sidelines watching them? We want to do this too!

We have become a running family, and it has transformed us. We are linked in a love of a shared activity. We all experience the health benefits of it. Knowing we found something that makes my children this happy is truly one of the greatest gifts of my life, and finding this outlet and becoming a part of our local running community has been extremely special for all of us.

When we are at a race, runners approach the boys, eager to give them high fives and cheer them on. Our sons seem to enjoy those interactions, and it’s been incredible as parents to witness that and see the opportunities that have grown from those moments. My boys have been profiled nationally and internationally in newspapers and on TV. I wrote a book about them, and we regularly hear from people from all over the world about the many ways Alie and Jamie inspire them.

Seeing our boys respected and recognized for their accomplishments in the face of all of their challenges and admired for the way they love what they do has really helped us get through our hard times. And the truth is, every day for us is still a struggle. At home we are dealing with self-injury and very severe behavior. My boys aren’t developmentally advanced enough to have a job, make friends, or drive a car. So the only thing we can focus on is making sure they enjoy getting up in the morning and look forward to what they will do that day, and because of running, we are able to do that.

I am asked by parents of special needs children – how did you find this passion for them? The truth is, it was simply perseverance.

We just kept looking. It can take some time; it took us 15 years. It also can come in different forms. I’m equally as proud of Alie for his “quasi-elite” running status as I am of Jamie for running his 6-hour marathon because both of them are out in the world, living their passion.

Each and every one of us has something that sparks joy in our lives, and our special needs children deserve to discover that just as much as anyone else. And the truth is - when you find that source of joy and contentment for them, you’ll find it for yourself too.

Schneider familyRobyn K. Schneider lives in Long Island, New York with her husband and sons. She is an autism advocate and the author of Silent Running - Our Family's Journey to the Finish Line with Autism. You can learn more about her at https://www.robynkschneider.com/ and more about her sons at https://www.autismrunners.com/.

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