Father pens book about raising a child with Autism
"I've come to terms with it but I do not think I have accepted it yet," Les de Villiers said about Autism, the condition that has plagued his now 28-year-old daughter all her life. "I think accepting it means not being proactive."
His daughter's condition is the subject of his new book called "Life with Lauren: An Odyssey into Autism." de Villiers has written more than 12 books but cited this one as his most important work.
"It was the toughest book I have ever written," de Villiers, a New Canaan resident, said. "The problem with Autism is that it covers such a wide range effects. It can affect people as portrayed in films like "Rain Man" or it can affect people like my daughter, where she has not been able to speak one intelligible word all her life."
de Villiers hopes his book will shed some light and bring much needed attention to Autism. He explained that one out of every 150 children in this country are diagnosed with the disease. Just over a decade ago, the incidence rate was at around one in 2,500. de Villiers is dismayed that the fact that other conditions like juvenile diabetes, cystic fibrosis and muscular dystrophy receive more research funds even though they are far less common than Autism.
In his book, de Villiers speaks candidly about what it was like raising an autistic child in New Canaan.
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"Hers is a silent world," he said. "It was certainly very difficult. But when your child needs your help, you do not look the other way."
Still, as strong as his words sound, it was not that simple. In his book, de Villiers details the stress Lauren's condition put on his marriage, his mentality and his fortitude. Yet one of the hardest moments was after the birth of Lauren's younger brother Andries.
"It hits you hardest when you can see the contrast," de Villiers said.
Andries was not autistic and grew up speaking fluently and engaging in typical activities, but he still cared very much for his sister.
"He has been very, very exemplary in his caring attitude with Lauren," de Villiers said. "He is getting married soon."
Andries is now 26 and works as an executive in an IT company in New York. His sister is now 28 and lives in a farming community in Great Barrington, Mass. The community is a place where she can engage in certain farming activities, which she loves according to her father, with 24-hour support from the staff their dedicated to helping their handicapped inhabitants.
"She really likes the farming life," de Villiers said. "Especially riding horses."
The idea of finding a place where Lauren would be happy was a difficult one for Les and his wife Ruth, but one that had to be made he said.
"Living with us where we do everything differently, was not the place that was going to keep her happy," he said. "It was a difficult choice, but it turned out to be good for Lauren."
Lauren was first sent to a 24-hour community called Camphill in Pennsylvania when she was 6 after much deliberation here in New Canaan between de Villiers and the Department of Special Education. The director of the department at the time was Dr. David Abbey, the district's current superintendent.
"In my view, David was the pioneer on showing the way to deal with children with special needs," de Villiers said. "New Canaan was great in that way, and in large part due to David."
Abbey ensured de Villiers that they would do whatever it took to make sure Lauren was happy and even sent two members of the Special Education Department into Camphill to make an evaluation. Needless to say, they were impressed and Lauren had found another home.
"She would come home for holidays and weekends," de Villiers said. "But it was incredibly difficult adjusting to the fact that I was sending my 6-year-old daughter to this place."
He explained how much she loved coming back to New Canaan, specifically Waveny Park.
"She loved walking in Waveny," he said with a smile. "On our drive back here to New Canaan, we would listen to classical music and look forward to a nice stroll in the park."
While Lauren is happy with her life in Massachusetts, de Villiers is still searching for answers. His biggest hope with the book is that it will help Autism research advance to a point that Lauren might even be able to reap the benefits.
"I'm hoping something can soon be done," he said. "I guess you could say I'm still chasing rainbows."