All autism parents feel hopeless and depressed sometimes, even my most-zen friend Jen. But Jen is better than anyone I’ve ever met at seeing the true beauty in everything. Her guest post is a reminder that if we remember to take care of ourselves, focus on our passion and vision, and just ride the wave of our autism adventure we can achieve purpose and joy.
“I can’t see the light at the end of the tunnel,” I said as the wave of depression rolled in.
These were the words that unfolded a cascade of epiphanies for me last week, resulting in me feeling, for perhaps the first time EVER, that I own my own life. Here’s the story in a nutshell.
In the midst of a major aggression fest with Justin, my 19-year-old nonverbal son, I surfed over waves of abandonment as I searched for solutions via the normal social-services routes. His current compulsion was to choke me and caregivers and then lock us in my room. At one point, his awareness of choking with his thumbs in just the right place on my voice box literally caused me to gasp involuntarily. Afraid? Well, yes – but not for the reason you may assume. I often feel alone, against the grain, abandoned and disappointed by the slow efforts of societal progress, especially within the field of autism action. I sense a force field of resistance and lack of urgency around me at all times even though I know deeply that love is the force that is guiding us all. I feel like a walking yin/yang explosion, grasping for hope and help from the outside world.
As a mom of two kids, both on the autism spectrum, and with varying spectrum travels over the past 20 years, I default to my fear for them…their safety…their quality of life…and their connection to a world which does not seem to have many outlets for them to plug in to. Nor does it seem to possess the compassion required to unravel the so-called mysteries of their daunting diagnosis and its effect on the brain. Like so many moms like me, I am on a quest for neuro-endocrine answers. And yes…I am taking the path of most resistance: Western Medicine. A hurdle I am determined to clear with ease…but so far, this path has been like many others I have chosen – full of stalls, roadblocks and bouts with my inner critic.
Recently, my bedroom has become – as it usually does during extreme fits with mania, OCD and aggression – the hub of all things breakable, launder-worthy and dump-out-able in our home. I also keep all of my son’s clothing, all towels, all magic keys to our locked-down-‘Justinized’ home with me as well. He uses his iPhone and proloquo2go app to tell me what he needs and I pass it to him from under my locked bedroom door. He has fits of giggles followed by pooping on all things launder-able or breaking all things that go CRASH against tile. If I come out during higher intensity, he is quick to shove me back inside, pinch my arms (the choking has subsided), lock my door and slam it with me on the inside. “STAY IN THERE!” is what I imagine he is saying to me. I am not sure if I am in trouble or if he is just sick of answering to everyone else’s expectations of him.
Mania has payed us visits during this time of year for the past seven years and is usually triggered by a full moon. Another mystic observation by a currently ‘uneducated’ mother which could and should have more lab-derived evidence IF the funding royalty we bow to would ‘grant’ investigation power for such ‘far-fetched’ research. My sarcasm is a product of my unhealed skepticism, so enter these ideas equipped with a fresh pair of rosy glasses as a shield.
Yes – many geniuses of science wasted years trying to prove to their community of doubters that their hypotheses were valid. Typically, once the avant-garde creators of such ‘hair-brained’ ideas gave up on convincing via words and decided instead to Go Big, it was found that they were right!! Until someone else came along and discovered more of what was right. I too have struggled to convince the masses of the validity and urgency of my hypotheses. I am suffering the collective pain body of the scientists, women and change-makers willingly…HUH?
My point being, for the last month, while spending time in and out of my room – alone, but never off-call – I was able to coordinate the details of the first HUGE event of the nonprofit I founded last Fall, Guru V People. I made flyers, art bios, coordinated banking details, scheduled a follow-up event, ordered art supplies. I fed and nurtured my children, coordinated care for my son, encountered medical hiccups, scheduled labs and associated appointments for us all. I hiked, cleaned my home, and sometimes was forced to pee in a bucket inside my room and empty it into the toilet when my son was asleep or in the shower. I mourned my mother who passed two months ago and grieved the loss of a three-year love relationship…to alcohol of all things. Oh, and I set up the artwork of both my children in two businesses downtown for the HUGE event I mentioned earlier.
Out of all of these tasks, the most important task was caring for myself. I was told by someone close that my son is my life. I responded immediately with a resounding visceral NO. I have my own life and he has his. My daughter, she also has her own life. The best way I can serve all of us right now is to create the vision from wherever our circumstances place me so that we ALL have the highest quality of life. I am committing to this short-term situation to enable the big picture. Currently, it is as the Executive Director of Guru V People and from the isolation of my home…and my room. I tell people who work with my family two things: Put on your inner surfer and ride the waves and whatever you need to learn, you will learn it here. Be ready for anything.
Stolen from the movie Pretty Woman is the phrase my best friend and I used to say to each other, “Take care a you.” Only last week did I really grasp what that meant. In a desperate attempt at salvaging my emotional stability in the midst of accomplishing all that I needed to under such adverse circumstances, I listened to audio books, read conscious communication books, started an exercise regimen and sought out people equipped to listen to me – and I realized one thing. I am a freakin’ BADASS and, in a pattern of self-doubt, I have constantly put hurdles in my way in the form of asking people and society to give me permission to live my Vision…or to provide the resources I insisted on prior to stepping forward.
IT WAS ME ALL ALONG who didn’t believe in me…
And this doubt is what likely triggered the barrage of paths I chose that seemed filled with the road blocks and barriers I often let stall my momentum. Because my vision is filled with concepts that experts and intellectuals cannot possibly fathom, that’s a sign that it is TOO LEGIT TO QUIT (haha – I had to sneak in the MC Hammer reference…cause it’s always “Hammer-Time” at our house).
I am AMAZEBALLS and I AM WILLING TO RELEASE ALL RESISTANCE. I wrote this on my mirror three days ago and the epiphany cascade continues as I stroll through the beautiful discovery that I am here to bring forth MY TRUTH and so is everyone else. There is enough truth to go around and surprisingly, we are NOT at odds with one another…we are simply unfolding the layers of conditioning we unconsciously agreed to along the way. I now see the light and it isn’t at the end of the tunnel; it is in my own reflection and in the eyes of everyone I meet.
“Conscious awakening enabler” and “paradigm shift engineer” are the hats I choose to wear now…and although a hurdle or two (or fifty) may appear in my path in the future, at least I will recognize them as the figments of my own imagination that they are, so that I can swiftly dissolve them prior to trippin’ over them.
As ‘Go Big or Go Home’ crashes against the waves of my resistance, I hop up to my feet, bend my knees, look ahead with exhilaration and ride the wave of life as it comes at me. Occasionally I BITE IT but if I relax, the ocean of experience will toss me around and let me back up for air…and I’ll vigorously paddle back out for more learning with a contagious, self-compassionate, mondo smile! See you out there.
I leave you with my favorite quote and the hope that you will know that you don’t need anyone’s permission to believe in anything…no matter how ridiculous it seems to the masses. My life, my adventure and my vision…
“The big question is whether you are going to be able to say a hearty yes to your adventure.” -Joseph Campbell
Peace and Love,
PS. The HUGE event was this past Saturday…and it was lovely. I learned so much…mostly that our family is loved and supported just the way we are.
Zen Jen is an autism adventurer & outdoor fantastical magic dragonfly whisperer. She is the single mom of two Gurus on the autism spectrum who loves words, dance & neuro-endocrinology! She is the Founder & Executive Director of Guru V People, a 501(c)(3) that is Going Big to improve the lives of those affected by autism. Guru V People helps families say YES to their autism adventure by providing the support required to facilitate maximum engagement with life despite the challenges they face: Autism is the Adventure, Feelin’ Guru V is the goal. Learn more at Guru V People’s website and facebook page.