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By Gina Reed-Rivera
When I first accepted the opportunity to write this article, I was humbled and knew exactly what I wanted to write about: Mindfulness in Autism. But as I found myself struggling with the topic, I realized that, for the first time in my life, I had true writer’s block. In my two decades as a professional writer, this had never happened. Yes, I’ve enjoyed procrastination (it’s our right as creatives, no?), but nothing that was this intensely unmoving. Just one great big boulder sitting on my lap that I couldn’t budge, couldn’t get around and couldn’t stop thinking about.
For several nights I went to bed with the hope that I would wake up inspired. Each subsequent morning, my first thought upon waking was, “I’ve got nothing.” I willed my brain to work through the problem in the way that only your brain can do for you. That kind of background processing that leads to the most amazing aha moments in your life. After several tormenting days, my brain produced. And what it produced was life changing.
My 7 year old boy, the love of my life, has autism. He was diagnosed three years ago during a hospital stay, but we knew well before then that something wasn’t right. Not that there was something wrong with him, but that he wasn’t happy like he used to be. In fact, he was truly tormented and we needed to find a way to help him. Getting the diagnosis, while providing us with a starting place to work from, was a difficult pill to swallow. My knowledge of autism was very limited and often very very wrong. It’s with this lack of legitimate information and a complete misunderstanding of autism that we began this journey.
A solid family, filled with love, we began to seek help for our little boy by scouring the internet. With so much information at our fingertips, it was impossible to know where to start and if you should even travel down certain roads or avoid them completely. And there’s a good reason for this: No master manual for autism exists because no two people with autism are the same. Autism presents differently in every single person living with it. There’s a spectrum of colors and flavors, with the two opposite ends presenting very different realities. But even when digging deeper, the vast differences between even the same flavor of autism provide a subset spectrum. Like fractals, you can drill down and drill down, only to see that the rabbit hole never quite ends. To know where to start looking on the internet then, is an almost impossible task.
And that’s when it hit me: My computer doesn’t have autism, my child does. So instead of going to the internet for answers, the better option would be to take a good look at your child. Live in his environment with him. Be present during all of the moments you are together, not just the good moments or the easy moments. Be present in the most difficult moments because that is where you will find your starting place. Your child will show you what he or she needs; you just need to be consciously available to hear it.
This is where my writer’s block comes in. I love my son so much. He is my world, my everything. But, I often live in a bubble, with the world around me tuned out or at least turned down to a tolerable level. I recognize the importance of mindfulness, yet acting upon it and actually being present isn’t an easy task. As a matter of fact, I fail at it more often than not. It’s this complicated relationship between the need to open my eyes and my innate desire to flee that has been sitting in my lap, preventing me from moving forward.
As things tend to happen for me, as soon as I opened myself up to the fact that I was wrestling with something major, I was presented with an answer that I never expected. I was reading a discussion on Facebook between a group of adults on the spectrum when I realized that, holy cow, I am on the spectrum, too. It wasn’t a far stretch, as both of my brothers, my father, my son, two nephews and a niece are all on the spectrum. But I never thought for a single second that I, too, could have autism. Yet, as soon as my mind opened to the idea, my brain went to work solving puzzles that have plagued me for much of my life. Not just a few things- no, now everything that I’ve struggled with for so long was laid out in front of me with a solution that addressed it all, across the board. The feeling of total isolation from the world around me, the meltdowns that I experienced all the way through my teen years and twenties. The difficulty with friendships- wanting so badly to connect with others but not quite knowing how. The total inability to manage seemingly simple tasks, leaving me feeling weak-willed and broken. Like a light bulb over my head, the realization changed everything. I quickly made an appointment with my psychiatrist and she confirmed what I already knew: I, too, am on the autism spectrum.
This ability to see myself for who and what I truly am; to see what the things that I thought were terrible failures, instead as deficits to be overcome; to reframe my perception of myself, from a person who excels at work but fails at life, to a person who can find ways to overcome those deficits and grow- with this complete understanding of myself for the first time ever… I suddenly understood my son. And I realized that I did know what he was feeling and that I do know how to give him what he needs. By being mindful of myself, of him, of our family and our emotions, I was able to come to this realization that will forever alter the course of our lives. By refusing to flee, by refusing to tune out the world around me, by giving myself the opportunity to really examine myself and my son and my partner and to see the reality of who and what we are, I was able to create a space for us to now grow with a cohesiveness that was never present before. We’re facing a reality that makes sense now. And knowing that we can now find the tools that we need to remove boulders from our proverbial laps and begin thriving, instead of merely surviving, is epic.
I can’t tell you that, through this practice of being present, you’ll discover the same things that I have. But if you are honest with yourself and truly live in the moment, you will begin to see answers to questions that have long been left unanswered. You will see, truly SEE, what your child needs and then go to the internet for answers, instead of the other way around. You’re never going to figure out what your child needs to thrive by looking away from him. The answers are within him and within you. It’s amazing what you will find when you open your eyes and tune in instead of tuning out.
Yes, I still fail at mindfulness every day, but sometimes it works and when it does, beautiful things happen. As for me and my new revelation, I’m just at the beginning of figuring this out and understanding myself better. But the ability to feel connected to my child on such a primal level, provides me with more fuel than I could ever need. I get it now. I know his pain. And I’m going to figure out how to provide him with life skills that will make his road so much less bumpy than mine was.
**Gina Reed-Rivera, lives in Portland, Oregon with her partner and son. In 2013 she founded Project Dear Autism Mama: Letters of Compassion, Hope and Joy and launched the Autism Parenting Social Directory. She is part of the creative hive, Mighty League Moms. BLOG | FACEBOOK | TWITTER
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With a network of affiliates across the United States, the Autism Society is the nation’s leading grassroots autism organization. Their mission is to increase public awareness about the day-to-day issues faced by people on the spectrum, advocate for appropriate services for individuals across the lifespan, and provide the latest information regarding treatment, education, research and advocacy. Contact and join a local affiliate and get involved! To find the affiliate nearest to you, click on your state below.