Thursday, 22 November 2012
Denise Bianchi is an employee for Autism Speaks, helping in the Family Services Department for the Southeast Region as well as the Communications and Marketing Departments. She is the mother of two children, Danielle, 18, and Andrew 13, who has autism. She and her family reside in Staten Island, NY.
Just the day before Hurricane Sandy, my colleagues, family, and I were participating in the very first Walk Now for Autism Speaks on Staten Island. It was very windy and the news stations were warning us to get ready for a hurricane. However, hundreds came anyway to lend their support for autism. Sandy devastated many New York, New Jersey and Long Island families in varying degrees, whether we lost our electricity, our basements, our cars or our entire homes.
In this post-Sandy world on Staten Island, I'm thankful for many things. My working washing machine and I have welcomed the extra loads from family who lost their basement appliances or still have no power from the storm. I don't even mind waiting in gas lines that tying up traffic. I no longer mind these things because for a very brief period of time, these luxuries were taken away from me. And believe me -- I consider myself beyond fortunate, and have a tremendous amount of "survivor guilt." Because within walking distance from my home, so many friends, relatives, and classmates of my children are still waking up to a cold, dark reality, realizing that “Frankenstorm Sandy” wasn't just a bad dream.
But as a mom, my heart hurts every day for those who lost everything that truly matters. It took me five days to cry after Sandy; I guess I was sort of shell-shocked. And when I tell you what set me off, you'll probably think it's odd.
I thought about AUTISM. My 13-year-old son Andrew has autism. The first few days for him were very upsetting. He couldn’t understand why there were no lights, no TV, why people were at our house upset, and why he didn’t have his INTERNET SERVICE so he could go on his computer as he does every day. I thought of how misplaced he was with no school for a few days and why we were lighting candles to see. I kept telling him we are waiting for the “cable guy” to come. He repeated those two words for eight more long days. When I received a message from my son's school that power was restored; the director said she'd work with families who lost everything in our school.
Until that moment, I hadn't really thought about the kids in my son's class who lived in Zone A (the evacuation area that was hardest hit), and imagined the turmoil those poor families must be going through. Soon after, I learned that fifteen families in my the school alone lost their homes -- their entire homes, gone in a flash.
I then thought about all the families that lost their homes and have a child or children with autism, and I just cried for them. I couldn’t imagine being displaced, can you imagine what a child with autism would feel? Scared? Angry? I know how angry Andrew was waiting for the “cable guy” each day; how would it be for a family to go to the local shelter with a child that has sleeping issues, tantrums, the need for daily routine?
I finally ventured out to the local supermarket, dodging downed trees and power lines for some essentials (everything in our refrigerator was spoiled by then). The devastation you see on television is shocking. But if you're not from here (or Breezy Point, the Rockaways, Coney Island, Jersey Shore, etc.) you probably don't fully understand.
I cried for the lives lost and changed forever by Katrina, but I never really understood until now. You can't fathom what destruction is until you see a familiar faces you see every day on the express bus, faces you know from the supermarket, from your daughter's grammar school or your parish. You won't get it unless you hear the frequent sound of military choppers in the air and have to explain to your frightened kids why your neighborhood looks like a war zone. You haven't smelled devastation until you've breathed in the combination of sewage and bleach when you bring hot coffee to loved ones sticking it out in the still-powerless Zone A where I spent many days volunteering.
We have all learned a lot; beyond just what it feels like to go a few days without an Internet connection or use of the microwave. We realized how lucky we were, and we pray every night for the people who lost everything.
It's nearly two weeks later (although it feels like an eternity) and here's what makes me cry now: The devastation that began with surging flood waters has turned into a calm and steady stream of good will, donations, and neighbors helping neighbors. Volunteer cleanup crews are out in full force, ready for their next assignment with shovels in hand. The marathon runners coming down to help us in their own disappointment, places being transformed into donation centers and having out-of-state friends send care packages and taking up collections. I've turned my blog and Facebook page into a tool to match volunteers with those in need and publicize relief and recovery efforts. Everyone I know is doing his or her part, and it's overwhelming, in a wonderful way!
I've realized that we have been given a great gift this Thanksgiving -- the opportunity to witness the triumph of the human spirit and the power of compassion. Still, I catch myself selfishly mourning the loss of places that were dear to me, like the local bagel store for example along with countless other businesses.
As I watch my community begin its healing process, though, I have tremendous faith and a whole lot of pride for the resilience of my family and my fellow Staten Islanders.
AutismCares is working to provide information, resources and assistance to families affected by autism who are victims of Hurricane Sandy. If you wish to donate to AutismCares, you can do so here.