The Autism Blog was kind enough to feature my cross country bike ride back on July 23, 2018. At that point I was on day 24 of my 41 day bike ride from Port Townsend, WA to Central Park, NYC in an effort to raise funds, and awareness for autism. Now the Seattle Children’s Autism Center Blog is allowing me to follow up their post with my own. My solo and unsupported bicycle ride was inspired by my ten year old son, Luca who was diagnosed at Seattle Children’s Autism Center with High Functioning Autism. I decided to ride cross country as a way to bring awareness to autism, raise money for Seattle Children’s, and honor my son.
I raised $11, 780 for the center and rode 3,436 miles. I could not have done the ride without the amazing support of my wife Catherine who was a single mother for 41 days. Her and Luca had good days and bad days. I talked to them frequently and as my ride progressed, the phone calls were more and more positive. I sent them tons of postcards and also sent Luca a prairie dog plushie from Montana and a corn plushie from Mitchell, SD. I took great joy in sending him things and telling the post office workers all about him.
I was overwhelmed by the connections I made with people along the way, all of whom were touched in some way by Autism Spectrum Disorder, whether it was a friend or relative. Some of the most important interactions I had were with parents of older kids on the spectrum in their late teens. Hearing about their successes and difficulties made me think of Luca and his future. We work so hard as a family to help him achieve success in things that most people take for granted. Meeting people who have the same challenges is very helpful.
As much as I missed Luca out on the road, he was always with me in two special ways. The first was his pet duck plushie named “Tallish” who he wanted to accompany me on the journey. The other was a small wooden carving of Luca inspired by ancient Rome (soldiers away from their families for long periods of time would have carvings of them that they kept in little leather bags). Tallish was a great companion and a constant reminder of my smart, funny, unique and beautiful boy. He was so bedraggled and road worn when I returned that Luca suggested we give him a bath. Tallish has never looked better after his spa treatment.
I found the challenge of riding cross country a lot like the challenge of parenting a child on the Autism Spectrum. There were moments of intense joy and there were moments where I was pushed to the absolute limit. Finding the strength and determination to overcome the obstacles I faced on the road parallel those I face as a parent. In either situation, giving up is never a choice. I never give up on Luca and I never gave up on my mission to spread awareness. I learned a lot about myself in 41 days. I learned that raising a child with Autism is part of who I am, not just something I do. It takes a village, starting with my wife and continuing with grandparents, aunts, uncles, cousins, and friends.
To say my ride was an emotional and life changing experience is a huge understatement. There were many times out on the road, alone with my thoughts, especially when I had so far to go still, I would get overwhelmed by emotion and shed some tears, thinking about what I was doing and why. I would embrace the tears and be comforted by the love I felt. When I realized how many people were following along and reading my blog, it added another layer of meaning to what I was doing. I received such great feedback and support, the ride was exactly what I hoped it would be, a way to put the spotlight on Autism and the need for research and understanding.
The beginning and end of my trip were the most physically demanding. Idaho, Montana and Pennsylvania had the most challenging terrain as far as elevation gain, heat and humidity. I was incredibly fortunate with weather and only got rained on twice. Wisconsin was probably my favorite state to bicycle through. They had the best and oldest “rails to trails” on my route and their rural roads were rolling and beautiful. I had a visit from my parents in Minnesota, my sister in Chicago, and I reconnected with old friends along the way. As an artist, I made sure to get my cultural fix by going to the Art Institute of Chicago, The Andy Warhol Museum in Pittsburgh and Grounds For Sculpture in New Jersey.
The second half of my ride went very quickly and I was crossing state lines much quicker once I hit the Midwest. Montana and Pennsylvania were the longest states I went through. In Pennsylvania I did a radio interview with “Brad and John in the Morning” on KISM radio, Seattle. It turns out John saw my blog and wanted to highlight my ride and my cause. He has a brother with Autism. It felt good to reach a wider audience on the radio and talk about Luca, Autism and the ride.
My wife and I decided early in the trip that meeting me in Central Park with be overwhelming for Luca. He would fly to New York the day after with his grandparents. As I approached New York, Luca was over the moon with excitement. I think he truly understood the scope of what I had done and why. I rolled into Central Park while I was on the phone with Luca, it was if he was riding next to me. When I arrived at Strawberry Fields, the John Lennon memorial in Central Park, I was filled with an amazing sense of pride and accomplishment. So many of my friends and family were there to greet me, all wearing the “biking for autism” shirts that Luca and I designed. It felt triumphant. It felt as if I made a difference. I succeeded on many levels.
My reunion with Luca at JFK airport was beyond words. He was absolutely beaming with joy. We did our secret handshake and then hugged each other. We spent time in NY with my family and then headed back to Port Townsend ten days later. Being back with my wife Catherine feels so good. We are back to being a family unit. We continue to work hard everyday with Luca. There continue to be ups and downs, but we will never give up. Hard work pays off and love keeps us moving forward.
Luca looks and sounds like a wonderful little boy. Thank you for bringing some more attention to Autism. You said that Luca is “high functioning”, and I would be interested in what he can do, and what his difficulties are at this time. The reason I ask is that my grandson who is 6 years old also has Autism, and was diagnosed at age three as “middle of the spectrum”. He is non-verbal, very bright, very athletic, and is always busy. He can have a melt down that will be so hard; bangs his head flops on the floor, tips over chairs, etc. Sometimes I think he is in pain because he will hold his head with both hands. Since he is non-verbal he tries and tries to make us understand what he wants, but sometimes we just don’t get it. It is HARD. I live with my granddaughter; she is a single parent and has one other son who is 9 years old and has ADHD ; I am a widow, so moved in to try to help with the boys. There are a lot of articles about Aspergers and “high functioning” autistic people – I wish there were more about the lower end too. Anyway, I guess I am just an old Grama who loves her boys so much, and their Mommy, too. Before my little grandson was diagnosed I had no idea of what Autism is, and I think most people think like I did -that parent needs to teach that child to behave!! Boy! I have learned a BIG lesson. Thanks again for your article. God bless Luca and you and your wife.
Thank you for your response and good questions. Autism is a spectrum disorder, which means no two individuals with autism look alike. You may have heard the expression,” if you’ve met one person with autism, you’ve met one person with autism.” The terms high and low functioning can be confusing to understand and often misleading. A person with “high functioning” autism can experience deficits that can impact quality of life such as high anxiety which be quite disabling. Regardless of functioning levels, we know that “behavior is communication” and when individuals who are non or limited verbal skills are unable to express their needs, we sometimes see extreme behavior, frustration, and generally refer to the severity level or the amount of support a person with autism needs. Here is a credible and supportive recommended resources for understanding autism, resources, and support. A guidebook just for grandparents!
A Grandparents Guild to Autism (free download)
https://www.autismspeaks.org/sites/default/files/2018-08/Grandparents%20Guide%20to%20Autism.pdf
I can’t tell you how proud I am of my son for making this journey, for the funds and awareness he raised and for being an awesome dad. Luca is so lucky to have Mike and Catherine as his parents and we are all fortunate to have LUCA in our lives!
Dear Michael,In one of our conversations after you finished your ride you told me of your plan to scrape off the paint of a finished work back home in Port Townsend. You explained that you now had a better idea of what to do with that canvas. I learned later that the new painting was in keeping with your new vision of it. Mom and I have watched in awe as you and Catherine have raised our beloved Luca over these past ten years. Your family is truly an impressive work in progress. There have been peaks and valleys, but always there was great and abiding love. The paint has been scraped off many a canvas as new ideas and visions evolved. And what a work of art has emerged!It hasn’t been easy by any means, but it’s been worth all of the effort. Thanks for helping us to be more aware, more involved, and more loving.Your family is a work of art to be celebrated. God bless all of you,and God bless Seattle Children’s Hospital for the important work they do. Love, Dad xxox
Mike, I was captivated by your love, dedication and commitment to Luca and the Autisim spectrum. I traveled with you, was amazed by your travels, pictures, emotions and sheer joy with the topography and art experiences you encountered. You have changed my understanding of the difficulties of the Spectrum and forever be grateful for your journey. Thank you!
I am so proud to say that my brother rode his bike across the country for such a worthy cause. I was nervous during your trip, but I never doubted you. You are such a strong rider and an even stronger person. I knew nothing would deter you from reaching your goal. Seeing you in Chicago was such an uplifting experience. Luca is an amazing boy with so many talents. You and Catherine have raised him with so much love, and it shows. You have shown us all that nothing is impossible, not raising a child with autism, and certainly not riding a bike across the country in 41 days!!!!!