Mizuno: Hi Robyn! Can you begin by introducing your family?
Robyn: Of course! I love to talk about my family. I am the mom of twin adult sons with autism; Alex (Alie) and Jamie. They are 27 years old and identical in looks only, as they have grown to have quite contrasting personalities. As you may know, autism is a neurological and developmental disorder affecting communication and behavior. It is known as a spectrum disorder because there is wide variation in the type and severity of symptoms. My sons are very low functioning and non-verbal which makes everyday life very challenging for them, as well as for us as a family, and for everyone else in their lives. They are unable to express themselves other than single word utterances in answer to a question, such as, “yes”, “no”, or some object identification such as, “apple”, “cookie”, etc. They do not request the bathroom and often times have accidents. They do not ask for food, and if I do not put dinner on the table, they would not eat. So as you can see, their level of functioning is quite limited. However, the flip side is that they are very physically active and love running! So that is where our everyday concentration on running comes into play.
Alie and Jamie face enormous behavioral challenges, including ones that are self-injurious. Their every waking hour is beset with high anxiety, very often with an unknown origin. They both suffer from an extreme obsessive-compulsive disorder, which I sometimes feel is more debilitating than their autism. My husband Allan is my partner in crime as we tag team in caring for our sons on a daily basis, from waking them up in the morning to tucking them into bed and kissing them goodnight.
I am a breast cancer survivor and Allan has been managing his Multiple Sclerosis for over 30 years. We have raised our sons with one premise in mind. That is to do whatever is in our power to keep them safe, healthy and happy, and enable them to live their lives to the fullest. Because they are non-verbal it has always been extremely difficult to know definitively what makes them happy. So we have explored every avenue possible, not leaving any rock unturned, and that’s how we have carried on these past 27 years.
Mizuno: Can you tell us a little bit about your family’s running background? Have you always been a running family, or have certain experiences lead you all to participate in this sport?
Robyn: Well, prior to my sons reaching the age of 15, there was no running at all in our family. As we were busy exploring all sorts of activities and sports for them; including basketball, soccer, karate, gymnastics, horseback riding, and a host of others, a close friend (who at the time happened to be a seven-time marathoner) suggested we consider running. At first, it seemed to be the impossible dream. I thought that my sons could never take up running because they would just run away. But then we discovered a running club called Rolling Thunder. They paired kids with special needs with volunteer seasoned runners. This opened up a whole new world. One that was foreign in our minds, yet intriguing. Both Alie and Jamie had so much excess energy. What if this was the way for them to exert that energy? And to do so in such a healthy and positive way? We remembered as young infants and toddlers they would both run circles around us, and we’d have to chase them down to catch them. Why can’t we try it? So we did. We went to a race to see what it was all about. The music was playing and the air was filled with excitement. As we stood holding the boys’ hands and watched the runners cross the finish line we saw the wondrous smiles emerge on their faces as they bounced on the balls of their feet. Little did we know, but that moment would change our lives forever.
Alie and Jamie started running with the club and were paired with the volunteer runners, based on their abilities. A short time after they began, Jamie started to have behaviors. He couldn’t say if he was tired or wanted to slow down, so he would express himself by throwing himself to the ground that sometimes escalated into a major tantrum. After a few incidents of bloody and bruised knees, my husband Allan decided he needed to step in and run with Jamie. Allan was thinking about running after watching the boys from the sidelines, and this was a way for him to get some physical exercise himself and help manage his MS. Once he started running with Jamie he could better understand his behaviors, assess his needs and knew best as to how to attend to him.
Shortly after this, I was diagnosed with breast cancer. Allan pleaded with me to start running too, for my physical and emotional health. So after my first chemo treatment, I laced up my shoes and haven’t stopped since.
Mizuno: Shifting to Alex and Jamie, what is a day in the life of these twin boys?
Robyn: Alie runs five days a week. On weekdays, he runs in the mornings and then I drive him to the Eden II Genesis Day Program where he enjoys daily outings with a small group; volunteering at various job sites and going on recreation trips. Then he runs on both Saturdays and Sundays.
Jamie runs three days a week with his dad. Jamie has more complex needs. Several years ago he was diagnosed with catatonia-like deterioration. This secondary diagnosis presents itself with very challenging issues. It is a neurobiological disorder that in Jamie’s case, manifests itself in extreme anxiety, regression in skills, slowness in movement, and agitation. He is in a program called Self Direction. This program allows us to develop a daily plan for Jamie based on his individual needs. He has a 1:1 support staff who takes him out daily to places he enjoys.
When both Alie and Jamie come home in the late afternoon during the week, they rest up, have a snack, and then several nights a week, they go out with home staff. Activities may include horseback riding, a movie, mini golfing, a walk in the park, shopping and usually always out for dinner. They eat out more than my husband Allan and me! On the weekends, it’s running! We often race at least once or twice a month.
Mizuno: Have Alex and Jamie competed in any races recently? Do they have a strict regime with coaches, or is it more relaxed? What distances are they taking on?
Robyn: Oh Yes!! Well, first I must tell you that neither Alie nor Jamie are able to run alone. Ever. Alie has a USATF Certified Coach who trains him for races; from 5Ks to marathons to Ultramarathons. Starting in 2006, we met Kevin McDermott who was the fastest runner in the club.
For eleven years, Kevin set the foundation and trained Alie to become one of the fastest runners with low functioning autism in the country; possibly internationally. He learned about autism and how to best teach Alie, and with tremendous patience and commitment, he paced him through hundreds of races, with a marathon PR of 2:56:20 and an 18:00 flat 5K.
When Kevin moved to Costa Rica in June 2017, Boyd Carrington, one of the fastest runners on Long Island and also a Certified Coach, took the reins. Under his tutelage, Alex’s fitness was elevated to a new level, by increasing his running days and training. He has been setting personal records in almost every race and continues to amaze us. Sal Nastasi, who is also among the fastest on Long Island runs with him during the week while Boyd is in charge of his training and runs with him on the weekends. They are very close friends so it’s a match made in heaven! Boyd and Sal paced Alie in the 2017 NYC Marathon, along with another runner, Philip Lang who we met through the Achilles International, and set a new personal record of 2:50:05, shaving six minutes off his previous marathon.
He then ran the 2018 Long Island Half Marathon in 1:16:30, a PR by four minutes. They also ran in the brutal 2018 Boston Marathon and finished in 2:56:54. And his last 5K was a 17:13. We have lovingly coined the guys #TeamSAlieBoyd! Alex has run 18 marathons including two ultra marathons. He truly lives to run. He is a Zen runner in every sense of the word as we can see how transformed he becomes when is running.
Alie will start training for the 2018 NYC Marathon in the summer. He does not understand anything about competition. When he races, Boyd and Sal must have him run slightly behind and to their sides in order to pace him properly and safely to reach their goal. If he goes out too fast, they grab his shirt and hold him back. Years ago, Kevin did that regularly and ended up with a hernia! Even though they tell Alie where he must stay, he may listen for a few minutes but then sneaks through to get ahead. They are responsible for giving him gels and water, ensuring his safety on the course, checking his laces and taking him to the bathroom. It is definitely a challenge for them, and a huge responsibility, one that takes a great deal of patience and commitment. We certainly hit the jackpot having had Kevin, Boyd and Sal coach Alie. Jamie enjoys running as a recreational runner, mainly with his dad Allan and me. Allan runs the longer distances and has completed eight marathons with Jamie, and I run the shorter races with him. Jamie loves to run listening to his iPod and stopping at the water stops. He sometimes spots a ponytail on a young runner and will want to stay behind her! (whereas Alie, of course, doesn’t stop at all when racing). We take it nice and easy with Jamie, as we are only concerned about him having fun. Jamie’s best marathon is a 6:01:45 and his best 5K is 25:00.
Mizuno: Can you describe the most challenging running event Alex and/or Jamie had to overcome? Any major takeaways?
Robyn: For Alex, I would say the 2018 Boston Marathon. It was a terrible winter in New York and he trained harder than for any previous marathon. Boyd and Sal were shooting for a sub 2:50. The conditions that day were the worst in Boston Marathon history but we were hoping that they would be OK. Little did any of us know just how brutal it really was out there on the course. Headwinds at over 30 mph accompanied with freezing rain and bitter temperatures. What came out of that marathon was our realization of how strong and determined a runner Alie has become. They call him the beast! Tough as nails, and bent on running to his max. This is where his obsessive-compulsive behaviors kick in because all that matters to him is getting to that finish line as fast as he can!
Jamie’s most challenging race was the 2013 New York City Marathon. This was after running at the 2013 Boston Marathon, where he was diverted off the course at mile 22. The bombs had detonated, and Allan and Jamie and another guide, Katie Raab-Reed, were placed on lockdown in a church. Jamie had just been diagnosed with catatonia a short time before this, and this event traumatized him so much that we couldn’t even talk around him for weeks. We don’t know how he internalized all that he experienced, but it affected him deeply, both emotionally and psychologically.
We were determined to have Jamie continue to enjoy running, so Allan trained him to run the 2013 NYC Marathon seven months later. It was a very hard race for him. Overwhelmed by the crowds, noise, and sirens, possibly reminiscent of Boston, he walked part of the marathon. It was pitch dark as they approached mile 26 but Jamie and Allan triumphantly crossed the finish line in 7:58:16. ABC’s Good Morning America featured our story on marathon morning, and later that night, they appeared on World News Tonight with David Muir crossing the finish line. It was heartwarming and quite emotional for us all.
Mizuno: If you could tell readers anything about non-verbal autism what is something they should know, and how have your sons shaped your involvement in the autism community?
Robyn: It is with a heavy heart that I can tell you about my life for the past 27 years. Autism is life changing. And low functioning, non-verbal autism is the worst diagnosis, not talked about very much or at all for that matter. What most people see and hear about autism is typical of those who are verbal, higher functioning; those who are able to have a conversation, are able to work, even with supports, and many that may even have friends or girlfriends. Even the new television series, the Good Doctor, which I happen to enjoy, depicts someone who has savant skills. Although I will say that there have been some segments of the show when Dr. Shaun Murphy’s anxiety and obsessive-compulsiveness displays the characteristics of those with low functioning autism. Like the scene when he could not find his special screwdriver. He was obsessed with finding it to fix his leaky faucet, and no other screwdriver would suffice. He had a severe anxiety attack; heart racing, sweating profusely and literally tearing apart his apartment. Multiply that by one million, and that is what our sons’ lives are like every day. Unfortunately, hidden away and not seen or read about are those on the low end of the autism spectrum like my sons. They will always need intensive behavioral and emotional support. They will never be independent. They will always need 24/7 care, today, tomorrow and forever.
Mizuno: You wrote a book about your family’s journey called Silent Running-Our Family’s Journey to the Finish Line with Autism. Can you tell us more about it and how it could be a source of inspiration for others?
Robyn: When I received the double diagnosis of autism, which was when my sons were 21 months old, it was as if my life as I knew it abruptly stopped. My new life had begun and took on an entirely new meaning. After the initial shock, followed by denial, anger, and depression, which I can honestly say lasted so briefly, I became obsessed and driven to find a cure for their autism. There was no time to waste. Unfortunately, autism is a lifelong disability, and when they reached the age of five I faced that reality. We sought the best educational consultants and programs, and along with a group of other parents, we founded a school for children with autism on Long Island called the Eden II Genesis School. We then concentrated on simply making our sons happy.
Once we discovered that Alie and Jamie loved to run, and saw the transformation right before our eyes, we recognized the power of running and were grateful. Running has not changed Alie and Jamie’s autism. They are still very severely affected by autism; they have meltdowns and monumental needs. And it takes so much out of my husband and me to manage every day yet keep their running front and center for them as well as us as a family. Now, it is running that defines them, not their autism.
I created a website for the world to see and our story has been featured in countless media outlets; including the New York Times, Runners World, the Boston Globe, USA Today, Competitor magazine and many more. The site is www.autismrunners.com.
I wrote my book, Silent Running to share my journey with others and as a personal tribute to my sons. I know they will never be able to read, understand or appreciate the words, but it is with the deepest satisfaction and joy for me to know that their story has been told and that it has touched the hearts and inspired so many people around the world. Silent Running is the gift of love and hope, perseverance and strength, and the passion of never giving up.
Mizuno: Thank you for taking the time to share your family’s story! Is there anything else you would like readers to know?
Robyn: Actually, yes. I’d like to thank all the runners all around the world who have embraced my sons and celebrated all their accomplishments. Thank you for accepting them into your warm and wonderful running community! They face such enormous challenges to be able to step foot on that starting line. Thank you for the respect and all the cheers along the way!
I’d like to end with one of my favorite quotes from Christopher Reeve. “So many of our dreams at first seem impossible, then they seem improbable, and then when we summon the will, they soon become inevitable.”
Thank you for allowing me to share my story with the Mizuno family!
Robyn Schneider, Autism Mom
Robyn spent over 30 years as a VP in non-profit human services management and later in legislative affairs. She advocates for improving outcomes for children and adults on the autism spectrum as well as promoting the benefits of exercise for individuals with autism and other medical conditions. Robyn lives in Great Neck, New York, with her husband two sons.
Published: June 2018