We were going on vacation. That’s not unusual. Most families go at least once a year. We’re going on vacation, what’s the big deal?
Well, with us it is. My beautiful boy has autism, and being on vacation doesn’t mean you’re on vacation from autism. Not only the usual roadblocks stand in your way, like waiting, costs, and safety. But we are entering the “normal” world, leaving our safe cocoon. And who knows what will happen?
A few vacations ago, boy, did we ever find out what could happen.
It was only three years ago that we left for JFK airport. We’d flown before. Joey was fine, we knew the routine, and brought lots of toys for the plane, treats and books. A little extra clodine to calm him. And off we went.
That year, we got to the airport excited as ever. Nicholas, my typical boy, 12 at the time, was so thrilled he could barely handle it. We were going to Bush Gardens, in Tampa Florida.
We also had front-row tickets for a Yankees spring training game. We don’t go to the stadium often, and unfortunately most times we do, we can’t bring Joey. If he loses patience, it’s hard to leave when the seats cost so much. And to do that to my typical boy is not fair. But spring training would be perfect. We’d be right up close, which would give Joey a lot to look at. It’s more informal than a “real” game, and would cost less.
Our plans were made. We were going to the game and Busch Gardens—acting like a normal family.
They called our flight and Joey seemed fine. We showed our tickets and headed down the tunnel-walkway to the plane. All of a sudden, right at the plane doorway, Joey stopped. No no no, he said. We were shocked. Joey has three words and doesn’t use them often. Loudly, he said, no no no! He would not get on the plane. We tried to coax him with chips and soda. The captain even came out to offer his hat in bribery, but Joey would not budge. When we tried to push him and physically manipulate him to get him in the plane, my beautiful boy wet himself and started screaming. At that point we realized we couldn’t do this to him. We left the airport without going to Florida.
You could have heard our hearts beating in that car on the way home. We couldn’t speak. My son Nicholas was heartbroken, sad, and angry. My husband, the fixer, couldn’t fix this. And me, the mom, who was supposed to have all the answers, had nothing. In my head, all I could hear was, You have to make this work. Or else you will lose vacations to autism, too, and more important, so will Joey.
I got to work with our school district, and with their help and Joey’s home therapist, we tackled a new mission: to get Joey on a plane. And that we did. Everything from going to Westchester Airport (left) at least once a week to see and hear planes, to coloring planes, writing about planes, watching planes on the TV and computer, wearing headsets that made plane noises. Anything that could have to do with planes was done.
That was three years ago.
Just last month, we went to Florida again. Yes, on a plane. And as tears streamed down my face, I called Joey’s school class from our seats and told them, “We’re on the plane.” The yells and screams from that classroom were overwhelming. They acted as if I’d just told them they had won a million dollars.
Thank goodness for these people who worked so hard to help my boy. And Joey–he amazes me. He grows and learns and fights to be part of our world. And works so hard at it, while always staying happy. He can’t complain to anyone about his day or his shirt being too tight. He is silent. And I try so hard to understand him and know what he needs without him saying a word. But I know that I don’t always get it right. My heart is beyond breaking when I think of the loneliness he must endure, the silence.
But not last week. Last week, Joey fought the demon of autism and traveled with us. We went to the beach, we swam, and we were together.
In fact, he’s becoming a pro. He’s even mastered coming back to our lounge chair each and every time after leaving the swimming pool. That has always been a bit of an adventurous moment, because Joey used to think all the towels, seats, and food near the pool were his to take. This time, he came to us—every time. It was nothing short of miraculous. My back actually hit the lounge chair. I relaxed and bathed in glory of success. It was magic.
This vacation, we were somewhat, yes, “normal.” Joey even taught the bartender how to say ‘soda’ in sign language, and had him serving him soda on cue. How great is that? Next year, I might just have Joey teach him Mai Tai, for me.
I never thought it possible to achieve this quality of life. It was sheer bliss. And as we sit in the house on a cold New York afternoon, home from school because of yet another snow day, Joey and I look out the window. He turns to me and signs “plane.” Yes, Joey, I’d like to go on a plane too, I smiled, and thanks to your bravery and hard work, with God’s love we will go again someday together. And in a small way, leave autism behind.
Phyllis J. Lombardi is a mother of 2 beautiful boys one with autism, wife of her childhood sweetheart and special needs advocate. Phyllis has spent the last 15 years helping others in the special needs community while working towards giving her son the best opportunity to a happy, successful, and rewarding life. Phyllis is very passionate about, and dedicated to the special needs community in Westchester County. Thirteen years ago, Phyllis began her advocacy in the area with the creation of the Ardsley Special Needs Committee for the Ardsley School District, which continues to thrive under her leadership. She is a board member, and has been for the last 13 years, of the Hudson Valley Family Advisory Council, as well as Special Education Region Chairperson of the Westchester East Putnam Region PTA, and Westchester ARC, and is the administrator of one of Westchester’s most active Facebook pages, the “Special Mom’s Network”. Phyllis has also worked with the Westchester Institute For Human Development as a L.E.N.D. fellow family mentor for 12 years and helped create and launch their building bridges program. Phyllis also distributes information to our communities through a powerful email distribution list of hundreds of special needs advocates and families.