BROOKLINE — While raising his disabled son, Gary Dietz discovered that the male perspective on being a parent to a child with special needs is often lacking, and he has embarked on a project to give these fathers a voice.
Dietz, who lives in Brookline, has been the primary caregiver for his son Alexander, 14, who was born with a rare genetic disorder. The condition left Alexander with multiple disabilities and, at times, Dietz found himself looking for other voices that were sharing his worries. But while exploring chat rooms and bookstores in order to figure out how other dads were coping, Dietz found that it was mostly moms doing the talking.
"I noticed the supports are focused primarily on the female, mother point of view," he said.
And sometimes, he said, he found himself a lonely voice in a chat room full of women who were not particularly happy with the men in their life.
"There was a lot of men bashing," he said, "and when a 17,000 member online community only has 3,000 male members, the men don't really speak up."
He also discovered that men faced a kind of reverse-sexism when it came to caring for disabled children. When Alexander was six months old, he had to have a serious operation at a Boston hospital. Dietz went to his boss and told him he would need to take the day off to be with his son and was told that he didn't need to go to the hospital because the child's mother would be there.
"Your wife does that work," Dietz said the boss told him.
When Alexander was placed in a residential community last year, Dietz said he found himself with a hole in his life where caring for his son had been. Though Alexander comes home on weekends, the weeks were long, so Dietz started thinking about how he could help make a difference in other people's lives.
He realized that with his marketing and writing background, he could help give fathers of disabled kids a voice, and he is now working on a book called "Dads of Disability."
In order to create the book, Dietz has reached out to men around the country and asked them to share their stories either through essays or poetry. Women have also participated in the project, offering the father's perspective through their eyes. Dietz will compile some of the selected works he's received into the book, due to be published in May.
"Dads of Disability" isn't meant to tell a single story, but rather explores the many different faces of the challenges families of disabled children endure. The guilt of not being able to help a child, the urge of a father to run away from the situation, and the anguish felt when a mother leaves the father and child are all subjects that are explored through the book.
The hope is that men will be able to draw strength and inspiration from the stories, and to feel less alone as they navigate the difficult waters of raising a disabled child. The book is being funded through donations Dietz received through a crowd-funding network, and he has reached his financial goal. The deadline for submissions of written work is today at midnight.
For more information, visit www.dadsofdisability.com.