BACKGROUND OF HOPE
I began writing my novel, Hope, in 2005 in a notebook with a pen, of all things, 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 minutes a day. So, in 2006, I bought 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.
I rushed through my chores and skipped lunch.
I cannot write when my
daughter, Adrianna, is home. She is profoundly autistic and is much too
demanding of my time. 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 day hours. Also, having a child
with special needs means there are many appointments. I usually find myself at
a school meeting or doctor’s appointment at least once a week. Free time has
become something I value more than anything else. I am very protective of it.
So, jumping back to March 2005, I started jotting down
random ideas in my notebook. The first thing I wrote was “I want to write a
book, but what should it be about? Autism, of course.” Autism saturates every
aspect of my life. I could have picked any topic and autism would have snuck in
and taken over. I wrote blindly, putting down my thoughts and feelings about
autism and how it has affected my life. In the process of doing this, I
recalled a question my sister-in-law had asked me about a news story about a
mother and her autistic child.
“How could someone do that?”
I realized then that even though she knew my daughter all
her life, she did not know autism. If Tammi did not know autism, then people
without a relative with autism were completely in the dark. I had relevant
knowledge to share with the world.
That news story 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.
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. So,
I based a majority of my main character’s experiences upon the true events of
my own life. To get an idea of what that is like, imagine a 5’4, 200 lb toddler.
You are imagining my daughter. 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. Despite the Risperdal she takes to curb her meltdowns, many
nights are sleepless; sometimes for days or weeks in a row. At age 19, and
despite great effort on her parents’ part, she is only partially potty-trained
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 are poorer than we are. They don’t even
have the resources to use to help their children. Autism can be destructive to
relationships. Many 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.
Most books about autism are written for people whose child
has been diagnosed with autism. I wanted to write a book for neurotypical (non-autistic)
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
Thank you so much for the guest post Victoria, a wonderful testament I think to a parent's love and hope...
Victoria Ferrante is the mother of two children with autism.
Hope is her debut novel. It is
available online at http://hopethenovel.com/,
http://www.amazon.com/, and http://www.barnesandnoble.com/
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