Today is World Autism Awareness Day. Last year my daughter, Veronica, honored her sister Alicia by writing an article on autism for a local news source. With Veronica away at college, I’m making my own contribution.
When I think of this day, I have a strange, bittersweet feeling. On the one hand, I feel happy that not just one community, not just one state, not just the United States, but the world is recognizing and trying to educate themselves about my daughter’s disease. On the other hand, there’s that sick feeling in my stomach that a whole world of families are affected by this disease. How did things get this far? How could statistics jump from 1 in 10,000 in 1993 when Alicia was born to 1 in 150? Some say 110 or 140, but 150 is sad enough for me.
There is a side to those numbers that often goes overlooked: the caregivers.
Autism, like many other diseases, is creating a nation of caregivers across the globe. There aren’t too many families today where somewhere along the line someone’s not doing their share of caregiving. Whether it’s a child to a parent, a parent to a child, a sibling to a sibling, someone is taking care of a sick family member. The problem with this is that more often than not, the caregivers themselves are getting sick — myself included. I had a malignant melanoma when Alicia was 4 and a half years old, roughly two years after her diagnosis. Thankfully I am fine.
But the constant physical, emotional and mental worrying over an ailing loved ones’ health is not something that one can tolerate on a nonstop basis. If you ask me, there should be an organization set up just for caregivers to take a break – not from their sickly loved ones – but from the disease that is affecting the both of them. A healthy break is what I would call it.
The first vacation we ever took without Alicia was extremely difficult for me. My husband was selected for a game show, Set for Life, and they asked the whole family to go to California to participate. As with any invitation we receive, the reaction goes from excited to deflated. There are always so many things to consider when accepting an invite: Alicia has sensitivity to loud noises, sounds, large crowds, and most things associated with parties and functions. We have to get a babysitter and we can’t have a “whole family” experience that day. And, let me tell you, babysitters are not easy to come by for special needs children.
When my sister found out about the California trip she said, “You’re going, Deb!”
How could I possibly leave Alicia for four days and be all the way in California? I was torn. I so wanted to be there to support my husband and spend time with Veronica in California, but I was a wreck about leaving Alicia.
It was hard for even me to believe, but I said OK. I left Alicia with my sister. My heart is still jumping now as I write this, remembering how scared I was to leave her. You see, when you’re a caregiver, you think you’re the only one who can take care of that person. Alicia has medications, behaviors and certain routines that need to be followed. How could I put that on someone else? But I had to swallow my pride, be there for the rest of my family and accept the help I was offered.
As you might have guessed I was a miserable, nervous wreck for the first 2 days. We had never taken a family vacation without Alicia before so everything we did made me miss her. The day we were scheduled to tape the show there was a crew issue and they told us we needed to stay another four days! There was no way I was staying.
The next morning, I took a van to the hotel, leaving my husband and daughter behind. I called my sister to tell her I was on my way home alone. She must have reassured me a hundred times that Alicia was fine, so I finally changed my ticket and went back to the hotel.
For the next four days, I thoroughly enjoyed myself. I actually relaxed, something I didn’t even think my body knew how to do anymore. We didn’t win, but we had a great time and headed home.
On the plane ride home, I started to reflect on this journey we were on. I wrote down on an airline napkin “A Healthy Break,” my idea for an organization for caregivers to take a healthy break from a disease — not their loved one. That was 5 years ago and I still have that napkin.
I believe that we need to take care of each other. I’m so worried about the caregivers of this county, because if they get sick, who will take care of their ailing family member? I’m grateful, in a strange way, to be touched by this disease called autism. It’s made me much more empathetic and compassionate to caregivers everywhere.
Please show kindness to families dealing with this disease, that is most likely affecting their whole family in so many ways, today and always.
Editor's note: The author is a Mahopac resident.