This story of Love & autism was submitted by Lisa Porter, mother of a twelve year old autistic girl Daisy. Here is what she wants you to know.
I am Mom to Daisy, age 12. Daisy is autistic and I attended the Love & Autism conference last year. The story I want to share is three fold. The first part is encompassed in this essay that I published a few months back:
Daisy loves to wear wings and fluffy dresses. When she encounters someone that she deems to be filled with interesting energy, she hugs without asking, or requests a hug and invites engagement in a world full of disengagement. She admires beautiful hair, mermaid tails, cute babies, and dresses that are ‘just like a wedding.’ Her conversations are most frequently with an old sewing machine, the ‘dipper’ (stars), and the crows in the fig tree. She doesn’t abide boundaries based on social norms. Daisy is 11. She is one of the most awake beings that I know. Living with her has forced me to be curious about the brain and the concept of plasticity. Because of Daisy, I believe in everyone’s capacity to change, adapt habits, and learn to communicate without words. She has converted me into a missionary, preaching the overlooked wisdom of the sensory system, as I observe her struggle to manage all of the typical sensory input that I unconsciously process.
The disabilities emerged slowly. She missed milestones, started wearing glasses at four months, had eye surgery at seven months, didn’t crawl, and didn’t walk until she was almost two. I remember the day when it really sunk in…the day that she started at a school for two year olds with special needs. We had moved from New York City to San Diego for my academic job when she was a newborn. This change was supposed to open the ‘perfect’ chapter in my life, transitioning from the professional theater to the academic and making room for this baby. Instead, and on the day that she started at a ‘special’ school, sadness took me hostage. I remember thinking, anything other than her intellect. Today, she is officially labeled with an intellectual disability, also known as Autism Spectrum Disorder. In terms of how American society traditionally measures achievements, potential, and quality of life, she is ‘less than.’ All of the words that begin with ‘dis’ sting with the stigma of ‘less than.’ Disappointment, dismay, disparage, disarray, disgust, disrepair, disillusion, disregard, dismantle, disruption.
The completely normal pregnancy, birth, and first few weeks of her life, led me to believe I had a shot at a typical parenting experience. I remember asking at the moment Daisy was born, ‘does she have ten fingers and ten toes?’ And indeed, she does. I knew parenting would change me forever, just not like this, not like this. Nine years after that first day at the special school, my worst-case scenario is now my daily life.
My husband and I took a trip to Berlin when Daisy was about five. Until then, I had never fully understood that during the Holocaust, those with disabilities were killed first and without delay. The Nazis dismissed them as worthless and unsalvageable. I remember that realization as a moment of deep clarity about the intensity of the struggle ahead. This was a time to transform into a warrior who could advocate for my daughter, leading us into the battle.
I plunge into our days hoping that the people we encounter will be filled with kindness and compassion instead of judgment and pity. You, the public sphere, are my catalyst, propelling me toward the fear, a future where she won’t go to college or live independently. When you brag about those cute phrases that your toddler said, or how you explored Paris with your daughter for the first time, or how you chose not to have children, I am mystified that you expect me to understand the experience of parenting a typically developing child or the freedom of being childless. I will tell any twenty something who will listen, make sure you know why you want to have children AND that you are ready to surrender your independence…possibly forever. All of my work on presence (the meditation retreats, the mantras that everything is always okay in the present, learning how to breathe) doesn’t help me in the present when my 11-year old daughter with Autism is completely misunderstood by the outside world.
You dream of your child never growing up and your eyes fill with nostalgia as you recall the first step, the first smile, the first time you heard the words ‘I love you.’ My moments are hard won as I muscle through days with Daisy. I have a little Peter Pan. She won’t grow up. The Autism spectrum can’t be measured or defined, it is a mysterious path, populated with children who languish in various phases of development. The pervasive definition of ‘growing up’ is independence and individuation. I’ve stopped daydreaming of the things Daisy won’t or can’t do.
In the Collaborative Leadership class that I taught last year, one of my graduate students said, ‘There is a rumor that you don’t like the word success.’ I replied, ‘I’m raising a child who will never be successful by the metrics of societal norms.’ Silence. I’m a master at taking all of our fingers off the easily pressed trigger of this topic of disability. Like most people who do not have a deep relationship with disability, the students don’t know the right thing to say and they shut down, saying nothing. In my everyday life, I am grateful when someone outside of the disability circle has the courage to ask me a tough question about parenting Daisy. It’s uncommon. I look around the room at the twenty something women that I teach and mentor. I tell them to consider what the word, and idea, of success means to them. Is it something born of them or ideas that have grown based on expectations of them? I steer the conversation far away from my pain and turn it into a learning moment.
The multiple lists of ‘she won’t’ and ‘we can’t’ bring me to my knees. The promised land of parenthood involved travel, exploration, seeing the world through the eyes of a wondrous little one. My experience has been about surgeries, an early diagnosis of mental retardation, a complete recalibration of my expectations, and a lot of fear. Despite the struggle, Daisy is the most gifted teacher in my life, patiently showing me how to break the cycle of expectation and disappointment.
We are strange bedfellows as mother and daughter. I like things to be organized, somewhat predictable, and I’m really good at work. Daisy is all about relationships, the sensory experiences that she loves, and she has no interest in my ideas about time or order. On my worst days, she has stolen my freedom. On my favorite days, she is a mystical creature who is willing to take a sometimes-awake earthly person on her journey. She is the biggest mystery in my life. And parenting her has brought me face-to-face with grief. I have received her message: this experience is an opportunity to call upon every resource I have ever dreamed about, experimented with, or vehemently avoided.
December, 1981. The Pantages Theater in Los Angeles. I am 11 years old and entering an embodied fantasyland. This is my first time seeing a professional theatrical production. It is Peter Pan with Sandy Duncan. I am in awe of how this musical and visual fantasy unfolds onstage. I want to learn everything about how it works. The moment when the audience is asked to clap to keep Tinkerbell alive is a revelation. It is the first time in my young life when I consider that my level of belief and commitment in something or someone might actually impact that situation or person. My entanglement with theater, and my future career, began on this day.
I was a practical kid, reading Harriet the Spy, Nancy Drew, and Pippi Longstocking. These quirky heroines intrigued me even though I spent most days fiercely committed to adapting to the crowd, unnoticed. I kept a journal, continually searching to understand why. That is how my journey with Daisy began. Why is she different? What did I do wrong in the pregnancy and birth? Why did every medical test come back normal? Why isn’t there any proven way to help her? In my early encounter with Tinkerbell, I experienced a moment of freedom from the why. All these years later, I have moved to acceptance, trusting that the path of unconditionally loving her, supporting her, and believing in her, is the only path. Just like the challenge for any parent. And I keep clapping for my real life Tinkerbell.
Occasionally, Daisy will want to dance with me like we are at a wedding. I grip her little hand and try to find some space around her wings to place my other hand on her back. I hold her close, and we take a deep breath together, swaying back and forth. I feel her relax and regulate and I do the same. I close my eyes, smile softly, and lean into the dance. This moment may be as close as I come to dancing at her wedding. And this connection is good enough for today.
The second part is to share that Daisy has fallen in love with roller skating in the past year and we have developed a strong relationship with Skateworld in Linda Vista (San Diego). The owners of the rink have radically included Daisy and we are piloting a sensory friendly skate in July (in collaboration with the San Diego chapter of the Autism Society.) Skating has given Daisy a confidence that is overwhelmingly positive in her life as well as enhancing her proprioceptive sense. I have attached a video and two photos that will give you a sense of Daisy on skates.
And the third part involves my life's work in the theater. I am a producer and stage manager and a Professor in the Theater and Dance Department at UCSD. I have put my production expertise and parenting experience to work and become a sensory friendly advisor to the Old Globe, Junior Theater, and California Ballet. This work has made a number of production, including the Grinch (now in it's fifth year of sensory friendly performance) accessible to those with sensory sensitivities.