My daughter Rosie was 12 last year when I decided to send her to sleep-away camp. She has autism, and for any parent of a child with challenges as daunting as hers, this is no small decision.
I’d known for years there are many good camps available for children with disabilities. In fact, there are more good camps than there are good schools, because there’s a constant supply of enthusiastic young people who are more than happy to spend a summer working with Rosie’s “population.” A summer is one thing, a lifetime is another.
These camps are also very safe, or the liability insurance would put them quickly out of business. Many have been operating for decades.
But facts don’t stop parents from worrying, and I couldn’t get past my fears, which included “elopement” (wandering away), insomnia, attraction to water and more. Then there’s the simple fact that she’s a girl, although we now know boys are vulnerable to sexual assaults, too. What’s more, she can’t converse well enough to tell me how and with whom she spent her day, and she still has no concept of time.
By far the biggest issue was Rosie’s tremendous fear of being separated from me. Still, our lives had already changed so much since the prior summer, when we moved to suburban New Jersey after 20 years in New York City. The urgent need to find a good school for Rosie pushed me to buy my first car and start a new life.
While I struggled to adapt to super-sized stores and “Life Behind the Wheel,” Rosie struggled to adjust to her new school, new home, new hormones, and new world in general. Her anxiety, which is high in any 12-year-old girl, went through the roof.
Lacking the child care support I had back in the city, I was worn ragged. But beyond my need for respite, I began to see sleep-away camp as an important step towards Rosie’s independence. And if she was going to learn to be comfortable away from me, there was no better place than in a camp filled with activities designed to make children like her happy .
It was a leap for both of us. So many people wrote to ask me how she was doing at camp that I decided to write one letter to everyone, and I share it with you now in the hope that it might speak to others in my situation.
June 26, 2012
Many of you have asked how the camp adventure is going.
Well, in the weeks running up to her arrival day, each attempt to talk to her about her upcoming “adventure” was met with howling at the word “camp.” Despite her limitations, Rosie can clearly communicate what she does and does not want to hear or do.
By Thursday, her anxiety was registering 8.0 on the anxiety Richter scale, and I worried that I might never get her into the car. Then there was the heat. The week before her Sunday arrival our entire region withered in a 100-degree heat wave. Here in our lovely new spacious home in the suburbs…we were completely without air-conditioning. My patience was near non-existent, and you know with Rosie you need lots of patience. The heat had sapped my ability to prepare her for what would be the shock of her 12-year existence. But, I am blessed with her so very, very unconditional love.
So hard, wanting to pack a few of her treasured items, just to hold onto, you know? But then I had to deal with the very real fear that Rosie would hold onto these objects to the point of not being able to participate in activities. Helplessness is one of the most (or is it the most?) dreaded feelings a parent can experience.
She’d never been away from me for more than five nights. And even then, she’d always been in familiar surroundings with people who truly love and care for her (you know who you are). But in this year of the Great Transition, her separation anxiety has only intensified. For me, it was simply unsustainable. Camp was the only viable solution.
When Arrival Day finally came, she was content in the back seat of our Subaru right up until she read the large sign at the entrance. “NO CAMP!”
We’d arrived early, the third car to arrive. The counselor, a friendly, handsome young man instructed us that we had to wait there at the top of the road for 20 minutes before we could proceed to the parking lot. “Hello there what’s your name?” he gamely asked Rosie.
“Her name is Rosie.”
“Hi Rosie, are you excited about camp?”
“This is Rosie first time at camp and she’s a bit anxious.”
“Oh I understand. Rosie, we’ll go swimming..”
“Well, we have a playground..”
“Rosie, tell the man, would you like to go hiking, dancing, shopping or swimming?”
At this point, the friendly counselor walked on to the next car behind us. And I thought,
“She’s nothing if not predictable.”
Up in the parking lot, the camp staff descended upon the cars. I convinced Rosie to step out of the car by telling her I needed her to do this in order to apply her sunscreen. Asking her to turn around so I could get her back, I closed the car door behind her.
It was clear this was NOT going to be easy. I reached into my window and locked all the car doors. She trusted me so much. Guilt was creeping into my gut.
I hugged her hard, “I love you. I love you Rosie.”
When I pulled away in the car I didn’t look in the rear view mirror. It had already taken three female staff members her to pry her off my car. Twice she threw herself against the car window, screaming for me, before I could move the car.
No, I couldn’t look in the rear-view mirror. My mind was flooded with one thought, “What did autism do to my beautiful baby?”
It was unsustainable.
I’ll keep you posted.
Love to all,
P.S. Do you think I should Fed-ex an Angelina Ballerina plush toy to her?
Hard as all this was, on her and on me, I’m telling you this because at the end of the two week stay, Rosie was fine. Everyone at the camp reported she enjoyed herself, especially swimming and a the camp dances, although she’ll never admit it to me. Her swimming really did improve.
I still feel the pain I experienced driving away that day, and I still need a break, since life with Rosie hasn’t gotten any easier. The people who work there are as dedicated to giving the parents some much needed respite as they are to giving our kids a great experience. And this year, Rosie’s going back for three weeks.
Jeannie-Marie McGuire is a freelance writer and non-profit management consultant.