Lila was born in January of 2002, 11 pounds of beautiful bouncing baby. Somehow my doctors didn't realize how enormous she was while she was still in my belly, and I pushed for several futile hours before she was taken out by emergency c-section. She had a bubbly hematoma on her crown from the pushing, but her APGARS all rode high and she ate like a prize fighter despite what the nurses laughingly called my "white girl nipples". That first night in the hospital there was a full moon flooding our tiny room with brilliant sparkling light. I watched my baby sleeping peacefully on my chest and ignored the nurse's urgings to lay her down in the crib.
I was in awe. When my daughter let out her first cry in that operating room I experienced a spontaneous healing from every perceived let-down I had known from my parents. I realized in the passing of a moment who they had both been, and what limited tools they had possessed to do this mind-bogglingly important job of raising a child. From the moment she was conceived my daughter held supernatural powers of this type. She made love and forgiveness happen spontaneously. The miraculous was all around us.
When Lila was 4 months old and turning over on her belly, eyes alert, we moved into a darling little craftsman cottage in east Culver City. It had been built and painted in 1926. We and our two devoted dogs were pleased to settle in there and I set up my photography studio across the street at the Helms Bakery. As a single mother I worked 16 hours a day, but we made it, and I was simply besmirched with a love I had never known for this enchanting, gorgeous little girl who had blessed me with her coming.
At a year, Lila walked. Within a month she started speaking in both English and Spanish, the latter being the primary language I spoke to her from birth. Her body moved smoothly through space and she looked at faces and new experiences with wide curious eyes of love. Near the same time, she started to exhibit signs of a gastrointestinal disorder. Explosive and acidic diarrhea began to dominate our daily lives and her stomach distended like a famine victim's. The visit to the pediatrician revealed nothing. The rice and oats I was told to feed her did nothing to end the scourge of hot liquid running through her gut and ruining all her clothes, car seat, toys, whatever happened to be in the way.
At around 14-18 months Lila began a strange jumping and flapping that was almost endearing, and as it came on subtly, I took it as a developmental thing. Then, her words started disappearing. Again, gazing at her with rose colored lenses I assumed her unfoldment was taking its own twists and turns and I was too busy fretting over the intestinal mystery to go much further into investigating these quirky developments. Over and over again the pediatrician told me she was fine. At two and a half Lila joined in a local preschool program. At this moment, I realized something was awfully wrong with my child. The other toddlers screamed in agony when their parents dropped them off. Lila waddled to a corner and sifted sand. I would try to say goodbye to her, and she completely ignored me. I shared with other parents that I was concerned I'd formed no bond with my child.
On October 30, 2002 I had my first parent teacher conference at the preschool. I was wearing tiger-print dance pants and an oversized wool sweater, my hair up in a bun. I remember the dryness of my hands in the chill. The morning was cold and misty and the outline of the oak trees against the sunrise is still burned in my mind. Mine was the first meeting of the day. I walked into the school room and saw Lila's two teachers and the school's director arranged cross-legged on the floor with a box of tissue at the ready. I knew this could not bode well. The teachers looked at me gravely. I saw that one of them had a tear welling up her eye. Gently and shortly they told me they were not doctors but they had seen Lila's behaviors before in other toddlers who were soon diagnosed with autism. They likened my Lila to an older boy at the school who had pervasive autism, the son of a teacher I knew well. They advised me to see a developmental psychologist for a diagnosis. Autism.
This was the moment my life became the journey of autism -the moment my heart irrevocably broke. The instant when every hand flap, every spin, every liquid bowel movement, every lost word, snapped into sharp focus and I felt fully what had happened to my girl.
My mission now is to bring relief to the immense civil rights crisis at large in a world today beset with autism, in an epidemic that has steadily and sharply risen in numbers since its inception, and has never plateaued. As we journey on the road to prevention and liberal treatment of autism, in a battle to achieve unfettered access to treatment for every child born on the spectrum regardless of race, nationality or economic status, I journey with Lila. My daughter has undergone intensive bio-medical intervention over the past 5 years, and a battery of therapies that have monopolized thousands of hours of her young life. The work she has done has not been in vain.
The toxic house that provided the catastrophic load of lead that triggered Lila's autism also took the life of one of our dogs. For the hundreds of parents and grandparents along the way who have mortgaged their homes and given away jobs to undertake the struggle for their children's lives, we begin the journey of a million steps in a documentary film we are making, to make way for the tidal wave of children coming to us in autism. With "The Pilgrims: the journey to a new world for autism", we will explore the tragedies and triumphs of the journey thousands of families world-wide undertake when they learn of this devastating disorder visited on their children. This is where we meet revolution and entreat those who have an investment in their children to join us.
That morning in 2002 when the teachers set me on the road of autism and revolution, another miracle transpired. That word "autism", that irrevocable knowing that you are in possession of a child with untold difficulties ahead of them, brought my love for Lila to a place that transcends words and defies pedestrian knowing. This is the miracle of Lila, the biggest love that could ever be, the most gigantic love I can ever know.
Amanda is a documentary filmmaker and autism activist currently engaged in making a feature film about the world autism crisis.
The Pilgrims: the journey to a new world for autism. Narrated by Aidan Quinn
But yes, after much biomedical and therapy he is improving and learning an growing. I am also a pilgrim in this dark world but I am guided by the light of my son!
Aldyth, how awful that your sister was made to feel guilty for her daughter's autism. The "Refrigerator Mother" myth was so damaging to families and I am glad that we have now moved away from that theory.
Dr Chun Wong
www.newautismcure.com/blog
My niece is 37 and lives in a group home.
God bless you on your journey. It will be a life long one.