Today's blog comes from Victoria Ferrante, author of "Hope," who shares her story of why she decided to write this remarkable book about her family, autism and the hope that carried them on.
I began writing Hope in 2005, in a notebook with a pen, sitting on my steps as I waited for my daughter’s bus to bring her home from school every day. I had about 45 minutes each day when I started. It probably would have taken me 20 years to write Hope only working 45 minutes a day, five days a week. I convinced my husband, Tim, I needed a laptop and made more time in my schedule for “Hope.” I set my alarm for 4:30 in the morning, weekends included, and wrote while my household slept. Some of those days I was so tired, my writing was a delirious stream of thoughts.
I cannot write when my daughter, Adrianna, is home. She is profoundly autistic and is much too demanding of my time. It is impossible to get in “the zone” when she is around. People might wonder why I didn’t write all day while she was at school. I know a lot of women work during the day and then come home and do chores and errands in the evening and on weekends. I do not have the evenings and weekends. When Adrianna is home, she is my full-time job. So, pressing household tasks eat up most of those school days hours. Also, having a child with special needs means there are many appointments. Free time has become something I value and protect more than anything else.
I had been doing this for several days when I happened on a news story in the Schafer Autism Report. It was a tragic story about a mother and her autistic child. A pathologist suffocated her three-year-old autistic daughter with a plastic bag. I had seen stories like this one before, as often as once a month. Still, the newest story made my stomach knot up and I cried. I remembered another similar story in the local news a few years before. I was visiting my hometown. I remember the total look of shock on my sister-in-law’s face. I realized then that this was the first time she had ever heard a story like that one. Not being a part of the “World of Autism” – being or having an autistic child – she was unaware that this news event was not a singularity. It dawned on me that in each community where one of these tragedies occurred, people for whom autism was not a daily part of their lives might believe it was a one-time event, because, for whatever reason, these stories do not become national news. Tammi insisted she could never kill her own child, especially if the child was disabled. Then she said, “How could anyone do something like that?”
She didn’t know but I did.
Not that I condone it. But caring for an autistic child is difficult. It can drain you physically, emotionally, and spiritually. My husband and I share this task, but, some moms and dads are out there doing this alone. It is a herculean effort. To get an idea of what it is like, I will describe my situation, which is not the worst but probably average for a family with a child with profound autism.
Imagine a 5’4, 200-lb toddler. You are imagining my daughter and, maybe, my life. She is mostly nonverbal. She makes one or two-word demands: “Pretzels!” or “Dance! Yes!” She (and therefore the rest of us) adheres to a strict daily and weekly schedule. Any deviation causes a meltdown, which is not a temper tantrum but a form of panic attack. She screams, beats her head, and scratches and bites her arms or anyone who gets too close. She is unable to think from a point of view other than her own. So, I’ve danced and worked out with her while I had the stomach flu, and, once, a fever of 104. I’ve driven all over town to the library, shopping, and restaurants with a severe migraine. There are no breaks and no vacations.
A few years before I had my daughter in 1993, parents were still receiving counsel to put their young children in an institution and to focus on their other children. Maybe that is easy to suggest when the child you are throwing away isn’t your own. I fell madly in love with Adrianna from the first spell of dizziness and nausea more than six months before she was born and more than two and a half years before a doctor assigned the term “autistic” to her. It did not make her less than her brother in my eyes. My thought about her diagnosis was “What do I need to do to give her the best chance at a good life?” If something happened to Tim and me, Adrianna would end up in an institution. No one in our family is able to take her. I fear for her safety and happiness in a place where no one knows or loves her.
I will always be the caretaker of a very dependent person. I will never gain the freedom that many women do as their children grow up and leave home.
Despite the mountains we climb and the clouds hovering in my daughter’s future, we have managed to be a happy family. We love and enjoy each other, but other families are not always so lucky. Many don’t even have the resources to lose to help their children. Autism causes many relationships to fall apart, leaving a single person to care for a disabled child. The rate of depression in parents of autistic children is more than double that of the general population according to research. Services, which are still too few in number for the needs of these families and children, are being slashed because of the recession.
So, sitting there in front of my computer, I wiped the tears from my eyes. I decided my book would answer Tammi’s question. Obviously, it would be fiction, but I wanted to show the harsh realities of this life. The majority of these murder/suicide stories I read were committed by single mothers, probably suffering from untreated depression, who could not obtain the services and supports their children needed. I decided to place my main character in that situation. Most books about autism appeal mostly to the people who are already a part of the World of Autism. I wanted to write a book for neurotypical people. I wanted them understand what I already knew; how somebody could do that. My hope is those who read my book will have more empathy, will reach out, and maybe even prevent another one of these tragedies.
There you have it. That is how Hope went from being a question aired at a family gathering to a novel held in your hand.
Victoria Ferrante is the mother of a profoundly autistic daughter and a son with Asperger’s syndrome. She is a stay-at-home mom due to the round-the-clock care her daughter, Adrianna, requires. She has been writing poetry, plays, and stories since she was seven years old. She lives with her children, husband, and beagle in Howland, Ohio.
Views presented in this post are those of the author and do not necessarily reflect those of Easter Seals Crossroads. For more information about the autism services we provide, please visit http://www.eastersealscrossroads.org/autism-services.