Telling Our Story Matters

Recently, I finished reading Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone by social scientist Brené Brown, PhD, LMSW.

Dr. Brown is a researcher, professor, author, dynamic thought leader, and total badass.  She has ignited a global conversation about many topics including courage, vulnerability, empathy, and shame.

Reading Braving the Wilderness was a game changer for me. In Braving the Wilderness, Dr. Brown unpacks her latest research about true belonging and teaches us how to cultivate it. She also incorporates many captivating interviews including one with Viola Davis—famous American actress and the only black woman to win an Oscar, an Emmy, and a Tony. Viola says:

“There is an unspoken message that the only stories worth telling are the stories that end up in history books. This is not true. Every story matters. We are all worthy of telling our stories and having them heard. We all need to be seen and honored in the same way that we all need to breathe.”

Viola has mastered the art of belonging to herself. Her courageous authenticity, vulnerability, and conviction give people like me permission to do the same. So here goes.

Our family isn’t unique. We all face our share of challenges and upsets. The point is that we need to share our stories of hope to help one another when it’s our turn to go through hard things. When adversity shows up, we need to know what is possible; that people make it out the other side in tact with their ass still attached.

Today, my family is going through an exceptional period of transformation and celebration. And yet it wasn’t always easy. My hope is that if you are going through a rough period right now, you might glean a little inspiration knowing what we have overcome as a family.

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Our story is about resilience, love, compassion, and staying in the solution. Our story is about hope; how we stayed together, searched for meaning, connected with our higher power, leveraged love to beat the odds, and how we made fun and gratitude household expectations to overcome addiction, autism, vaccine injury, dyslexia, and a traumatic brain injury.

For the sake of time, I'm only going to share a piece of our story today; the spectacular highlights about John's remarkable recovery--how he beat the odds to overcome the complex challenges of autism. 

John was practically a honeymoon baby. Craig and I read all the baby books, prepared the nursery, bought all the gadgets and gizmos, installed the car seat and we were ready to bring our sweet angel home. But here is the deal, I don’t care what anyone says, nothing prepares you for becoming a parent. Motherhood changed me. Not just the physical, I’m talking about the emotional and spiritual parts of me. I started asking myself tough questions especially related to how I wanted to show up in the world. Soon after John was born, I put my career on hold to take care of him because he deserved my full, complete and undivided attention. And that’s when my identify crisis started. Until then, I didn’t realize that my self worth was tied to a paycheck.

Those hard questions lead to soul searching, which resulted in me getting clean and sober when John was 13 months old. I was no longer willing to live a lie—my life looked perfect on the outside but I was dying on the inside. Getting sober was the best, hardest, most terrifying and courageous decision I ever made. I have been sober for sixteen years and it is my most cherish accomplishment to this day—and I’ve celebrated my fair share of success.

But as I think back to my life in 2002, what I distinctly remember is this horrific feeling of worry and anxiety that bombarded my nervous system. And who wouldn’t be stressed? I was 14 months sober so, my central nervous system felt like it was on fire and I was beyond overwhelmed dealing with the circumstances of my life. I was caring for Alyssa, our precious new born (she had a heart defect and doctors thought she would require heart surgery), Craig was on permanent disability due to a traumatic brain injury he sustained from a motor cycle accident he was in several months prior, and John, just two years old at the time, was about to be diagnosed with full spectrum autism. He was also very sick physically from an adverse reaction to vaccines.

John missed his well visit at 12 months because he was sick, so he had 8 vaccines in one day at his 18 month check up. Within 5 days, we knew something was very, very wrong. He had 105 fever, unexplainable rashes on his stomach and his cheeks. Diarrhea, night sweats, night terrors, and then the tantrums started. Because he couldn’t talk that much, he would hit himself in the face over and over when he wanted something but we didn’t know what he wanted. He would throw himself on the hardwood floor, arch his back, and scream. He would slam his head against the hardwood floor. He had a lot of bizarre routines and behaviors. He would set up toys in a long straight line and lay on his side and get really close to the toys and move himself up and down the line looking out from the corner of his eye about 1 inch from the toys and he would hum “ah-hun, ah-hun” incessantly. He would push the vacuum cleaner around the house for hours, turn toys upside down and spin the wheels over and over, as he looked at them from the corner of his eye. He covered his ears and would scream in pain if the juicer or blender was on but loved the sound of the vacuum cleaner. He would navigate his way through the kitchen opening up all of the cabinet doors to find the lids of pots, where he would get them all spinning simultaneously like tops. He would turn the trash compactor on over and over like thirty or forty times while in stood in front of it bouncing up and down.

On December 11, 2002, John was diagnosed with severe autism—full spectrum autism, which meant he met all twelve diagnostic criteria. He barely talked. He had fifty word approximations, didn't play with or would even get near other typical toddlers--in fact he had no interest in other kids. He didn't really connect with Craig and me in social ways that would be expected. He had really strange, repetitive behaviors, night terrors and night sweats. When I asked the doctor what John’s prognosis was, he said, "We will know more when he is five or six." 

What the heck? That wasn't good enough for this mom on a mission.

All the autism research I did concluded that early intervention was critical. Basically, we were in a race against time to orchestrate an intervention that would catch John up to his typically developing peers. John's recovery is a long, long story that took eleven years of intensive behavioral intervention, speech therapy, occupational therapy, social skills, special diets, sound and music therapy, private schools, and other alternative approaches. 

And then he learned to play the piano when he was eleven years old. As the two hemispheres of John's brain began to sound off and synchronize, the neurons started to fire and wire together. The results of playing the piano were nothing short of miraculous--simply magical. He started to wake up socially and emotionally. He started initiating hugs for the first time, spontaneously telling me "I love you Mom." Miracles happen that is all I can say.

There is so much more of our story to tell. But I wanted to give you a glimpse before I share John’s college essay with you to give you some perspective of his remarkable journey. We are blessed to have financial resources to secure best practices in autism treatment. We are grateful that the universe worked in our favor to bring us the most talented therapists in the field of speech, behavior, sensory integration, holistic nutrition, homeopathy, and other bleeding edge alternatives. We are grateful to Calvary Christian for teaching John and his classmates how to read music and for grandma Bobby, the inspiration for John’s interest in learning to play the piano. That is when the real changes started to happen for John emotional, socially, and spiritually—when he started passionately pursuing the piano relentlessly three times a day, every day, without prompts or requests of any kind.

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John’s soul woke up when he learned to play the piano and from there his story is simply miraculous. John got accepted to several top universities and he will be studying astrophysics in the fall at UC Santa Cruz—his #1 college pick!

For me the seed of hope was planted with my recovery from alcoholism and addiction, and everything good and worthwhile grew from there including John’s recovery from vaccine injury and the many challenges of autism he overcame since his diagnosis in December 2002. Because I was a sober mom, I was awake and present to seek a solution to help John recover from autism and restore his physical health from the vaccine injury he sustained.

There were so many angels that made John’s college dream come true. One of them is Rick Rollens. He was a board member of the Autism Education Network when I founded that nonprofit in 2003. Rick introduced me to Bernard Rimland -a legend and the founder of the Autism Research Institute. Bernie basically started the movement of looking for biomedical markers for autism instead of blaming mothers for it, which was the modus operand of mainstream psychiatry in the 1950’s. Yes, it’s a part of American history. Look it up. Refrigerator Mother syndrome—blamed bad, cold parenting on mothers to explain a child’s autism. Despicable I know. Getting back to the gift of Bernie Rimland. When John was 3 and I was at odds as to what to do for John—a severely autistic toddler at the time, Bernie told me to hold the bar high and to never take no for an answer. He told me to keep John with typically developing kids and to push him to do what other kids are expected to do. I listened. Bernie was right. I held the bar high and like a badass, John exceeded all our expectations. Bernie Rimland, besides his mark on autism history as the grandfather of biomedical research, was the autism consultant for the movie Rain Man. His advise is what I followed to the letter in my quest to get my boy back from the grips of autism.

John has matured into one of the most incredible people I know. He is an exceptional human being. Bernie passed away some time ago and I believe he is likely still fighting the good fight on the other side. I pray that Bernie knows John made it because of his tireless efforts to help mothers like me! I know Bernie would be proud that beyond overcoming autism, John is using his voice for good! Go John Go! 



*** John’s College Essay ***

I remember sitting in a room full of people, feeling lonely, watching them enjoy each other’s company. I was alone in my thoughts of self-doubt, believing I would never be able to connect with others. Everything that I said felt meaningless, leaving me even further away from true acceptance.

If only I could be loved. If only I had the language to communicate…I would be authentically appreciated for who I am, even popular.

Thank God that I had a loving family that nurtured me and encouraged my thirst for knowledge. My parents were unstoppable and absolutely determined to give me every advantage they possibly could. Alyssa, my younger sister by two years, was a blessing in my life. The unconditional love and support of my family carried me through the challenges of my childhood.

When I was eleven years old, my Grandma Bobby introduced me to the piano, beginning my incredible transformation toward self-discovery and stepping into my power.

My hands knew the language of the keys. The vibrations filled my body and pulsed through my fingers. It was as if I instantly knew a foreign language without ever studying it. Curiosity grew into experimentation. My parents arranged lessons. One year later, I joined the 8th grade jazz band where I continued to develop and improve.

Freshman year my friend, Brendan, told me to watch a YouTube video of Victor Wootan, who made the most profound statement: “Music is a language and every musician has a story to tell.”

Hearing that, I felt inspired, motivated, one might say, unstoppable!

I discovered that music was not just a hobby, but a lifestyle filled with undeniable self-expression. Music was a potential opportunity to tell my story, to share my perspectives in ways I had not previously been able to consider. It was like I was given a key to unlock the mysteries of language so I could join the conversation and feel a part of the crowd.

I began to transition from a serious, disconnected person to an emotionally empathic person with a deeper sense of connection to people. As my piano skills grew in competence, I started to bloom socially and emotionally. Sophomore year was my golden year. I crossed a threshold into a new realm where I finally achieved my childhood dream of being authentically loved and accepted by everyone. 

By junior year, I recognized a new friend in my body: PASSION. I began to experience pure joy as I played the piano. I cannot help but believe there is a direct correlation between this amazing experience and the deepening empathy I was able to feel for others. Now as a senior, as I look back at my journey, I can truly see how playing the piano has revolutionized my life. And as I was voted for Homecoming Court by hundreds of amazing seniors, I felt completely validated socially knowing that my peers truly embrace me for who I am. The universal language of music transcended the barriers of autism with which I once struggled.

Piano turned out to be more than a passion; it enabled me to cultivate relationships with people and realize my purpose. Piano gave me confidence and the ultimate opportunity to find my voice. Without piano, I would not be the individual I am today; I would not be able to express myself and empathize with others. I would be lost in loneliness, trapped in my thoughts, and sulking in the silence of my self-doubt.

Victor Wootan was right. Every musician has a story to tell. My story is one of hope, overcoming adversity, and beating the odds. Music liberated me and I overcame the label. Autism no longer defines me; it is just a part of my story.