Patricia Stacey, author of "The Boy who Loved Windows: Opening the Heart and Mind of a Child Threatened with Autism," offered insight into the challenges she faces as a mother raising an autistic son. The Thursday evening event marked the conclusion of Disability Awareness Week at Notre Dame.
Stacey read several excerpts from her book, an account of how her family's life changed forever, when their youngest child Walker was diagnosed with autism, at the early age of six months.
Following a traumatic birth, Walker's parents were immediately aware that their son was different. As the first months went by, they found themselves questioning their son's perpetual cold, his discomfort breathing and the Excema covering his body. Even more so, they questioned his inability to look at people, to connect emotionally with his parents, or his older sister Elizabeth. They wondered why their baby wouldn't cry when he felt pain. Why would he recoil when a rattle was put in his hand?
By four months old, Stacey noticed Walker seemed more interested in windows, than the people around him.
"He searched the windows obsessively, compulsively," she said. "What was it about those windows?"
While he experienced boundless joy and energy over a squeaking bath toy, at four and a half months, he continually slipped deeper and deeper from those around him.
"A veil had fallen," said Stacey. "[Walker] seemed to be suffering some disturbance of the soul."
While many parents of autistic children notice similar symptoms, over the years, autism has experienced an expanding definition in the medical world. It is a disorder attributed to genetics, but also the possible influence of toxins and chemicals in the environment and has seemed to involve an increasing number of diagnoses in recent years with an evasive sense of what it really entails.
Stacey's family was able to find a significant amount of help especially from doctors and some forward thinking therapists, including Dawn Smith, an educator, when trying to understand the biological disorder that their son suffered from. Smith told the Staceys about an intervention program developed by Dr. Stanley Greenspan, commonly known as the "floortime method," which was to change their life in a drastic way.
They took their five-month-old son from their home in North Hampton, Mass. to Betheseda, Md., to visit a doctor who would give them hope that they could be proactive in helping improve their son's condition. Greenspan taught them the "floortime method," instructing them on their arrival to "get down on the floor."
He invited them in their three-hour appointment to challenge Walker, to inspire him without telling him what to do, as they played with him on the oriental rug of Greenspan's office.
Up until that point, Walker had been listless, withdrawn, failing to respond to his parents, make choices or express emotion. In that initial session, they found a joyousness in engaging with him, which they had been unable to find before. Following the meeting, they were told that in order to increase Walker's chances of living a more normal life, they would need to spend 20 minutes to a half hour 10 times each day, in playtime and interaction with him, a rigorous commitment for both Walker and his family. However, they were willing to do whatever it took, she said.
Within just a month's time, Walker was communicating more effectively, and the Staceys were seeing that their son was changing so much, and so quickly. It was not an easy road to travel, and it involved an incredible amount of sacrifice and devotion of time, love and energy. However, with the help of student volunteers, therapists, tutors, community, family and friends Walker was able to advance in development, physically, mentally and emotionally.
Today, he is a seven year old, in the first grade and as his mother says "is functioning wonderfully." He has recently tested in the 97th percentile of standardized testing, and is developing friendships at school.