Once upon a time, there was a rather old princess who, despite repeated attempts to become with child, was left without. She wanted, more than anything in the world, to have a baby. She hoped and she cried. She wondered if she was meant to be without the laughter of a tiny little one running around the kingdom. Then, one day, with much fanfare, she was blessed with the news of a child on the way.
The road was treacherous, fraught with danger and a scary illness called preeclampsia. The old princess did everything in her power to protect the tiny baby. She ate right. She rested. She had regular, prenatal care visits. She took her vitamins. She read and sang to the little one.
The old princess became very, very ill. She and the baby were in danger. At the last minute, a fairy doctor came in and brought the baby into the world crying and screaming by a magic c-section.
There was no sleep in the castle. Day and night (and every two hours through the night) there was screaming and crying from the little royal. The old princess and the duke (her husband) were exhausted and confused. Why was the little prince so beastly? Why was he so beautiful and so upset? Was his tummy hurting? Was he hungry? Did he have problems breathing? Pain? What could it be?
Then, when the prince was nearly four years old, the faithful pediatrician finally said the feared words to the old princess – “I want to test him for autism.” What? The fairy tale life she had envisioned shattered in that moment.
Slowly, the old girl, picked up the pieces. She swept many of them aside. She called many experts. First there was the expert from the Regional Center who coordinated an official diagnosis from the finest establishment known as UC Davis MIND Institute. Autism? Confirmed.
Once a confirmed diagnosis was achieved, the experts, satisified with their work, simply backed away. They left the old princess and her child deeply inside the dark, dense and thickly wooded forest with no provisions, save access to the internet. The old princess Googled and Mapquest’ed and took path after path to find a way out into the light.
The experts and doctors had left her with only two magic words, “speech therapy”. The rang hollow in her ears. He had no difficulty with articulation. He could speak. Whatever were they talking about? Where would she find someone trustworthy of the little prince?
She traveled many worn dirt pathways and found a kind little couple who took in the princess and the boy and examined him. The woman was a speech therapist. She was surprised at the level of difficulty of testing the little boy, not yet four years could surpass. She took out testing for ages 5, 6, and 7. The boy continued to pass all the tests. At it’s completion, the woman looked to the old princess and said, “You are lucky.” He will make much progress. You will see.
The woman helped the boy. She placed him with other boys with similar disabilities in a class once a week. As the old princess made her way through the thick woods to her place, the speech therapist left the old princess with other princesses who bestowed their experience upon her and gave her more magic words, “ABA” means “Applied Behavioral Analysis” and it will make the little prince strong.
The old princess went deep into the woods with the small boy looking for the elusive ABA. She met many odd characters along the way. Eventually, through many adventures with Google, she found a wise old man who had studied and become an expert in ABA. He too, tested the boy and found him clever and sneaky. He said the boy would be a challenge but he had promise and he began long and devoted work with the boy.
The boy grew and prospered under the wise old man who had many working under him. The boy learned new words. The boy learned to use words and respond to instruction. The boy learned to use the toilet. The boy learned discipline and it was good.
Interspersed in the speech, she found two additional magic words called “occupational therapy” or OT. The OT was used to help the boy learn where his body was in space. It helped to regulate his constant need for movement and to use the large muscles in his body. It helped him to find focus, strength and concentration.
But the old princess had become spoiled by the ABA, OT and the speech. She became greedy, dissatisfied – everything looked like a frog to her. She sought more and better treatment for the boy who was growing and learning by leaps and bounds. She had begun writing.
She wrote about alternative treatments like oxygen treatment tent, about vitamins and transcranial magnetic stimulation. Others with children with autism listened to the stories of the old princess, some with interest, others with skepticism and others with distrust and warning.
Saving herself from becoming lost deep in the forest once again, the old princess went to see the trusted pediatrician again. The trusted pediatrician who was oblivious to the old princess’ plight in delving repeatedly into the dark and twisted woods, told the old princess of a sage, one wise with years and scientific understanding. She said the path to the wise scientist would be a long, long journey of many months of waiting. The old princess put all the alternatives on hold and for the prince… she waited. And waited. Until the day came that she traveled on a long and winding road to the wise old sage who was not deep in the woods but high on the hill.
(To be continued…)