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My Love Affair with Autism

25 Oct

My introduction to autism was a crash course during four consecutive summers while an undergraduate student at Northwestern University. At the time, I was a journalism major, and I responded to a vague advertisement in the school newspaper about working with kids with special needs. After a phone call and an interview, I was hired to work as a  counselor at Keshet, a summer camp for Jewish children and youth that fully integrated campers with autism spectrum disorders. I was a bit out of my element: A Catholic whose parochial background was without exposure to special education.

I was assigned to Nic, a four-year-old diagnosed with autism. My first meeting with Nic was a blind date. My supervisor and I went to Nic’s house for the purpose of a dual introduction — me to Nic, Nic and family to me. I caught a glimpse of Nic that day but spent most of time talking to his mother and listening to him run around upstairs. I learned about his food allergies, his treatment goals, his family members, and his interests. When I met Nic on the first day of camp, he had never been out of the sight of his parents for longer than 15 minutes, let alone spending a 4-hour preschool camper day with a relative stranger. I helped him out of his car seat, introduced myself, and away we went hand-in-hand. As I buckled Nic in, his mother asked me a myriad of questions, but one stood out, “He will see you tomorrow, right?” I chuckled and responded instinctively, “Where else would I be?” “Well, I need to make sure because Nic has never held anyone’s hand, let alone a stranger’s.”

In some ways, Nic will always be that four-year-old boy who changed my life. I worked with him for four summers, and during the school year, I came to the house to play, laugh, and learn with him. During the fourth and final summer, his parents and I decided that I would live with them because we knew the end was in sight. I would be graduating and moving to Indiana. I stayed in their guest room and, morning after morning, there was a quiet, little tap on my door followed by a whisper, “It’s time to get up, Jeanne.” It was Nic, readying me for my day.

When I moved to Indiana, we found ways for me to visit as frequently as possible, but distance and time were winning. They invited me skiing, we exchanged holiday and birthday gifts, and we tried to stay caught up. Then, I moved even further, to Kansas City for graduate school and Nic was devastated. It had to be short-term in his mind, so I told him, “I was walking my dogs in Kansas.” And, initially, it was short term, but then I opened a practice and time and distance won again.

Last year, I visited Nic and his family. His younger sister, whom I knew well, and younger brother, a new edition to the family, talked my ear off about Nic, which was good because Nic and I were back to our first-date days when he ran around like a flash of excitement. The guest room had been officially renamed “Jeanne’s room” because Nic refused to call it anything else. When Nic was mad, he threatened to move to Overland Park, Kansas. When he was happy, he pressed the button on a musical photo cube that announced “Happy Birthday Nic, I miss you” in my voice. It was apparent how important I was in his life. I was relieved because pictures of us lined my walls, and my friends and family were on a first-name basis with Nic, despite having never met him.

Nine years ago, when I returned Nic to his mother after our first day of camp, I knew there was no turning back — my career path was altered in irrevocable ways — what I didn’t realize was that Nic’s life had been changed, too. Nic is almost 14 and almost in high school, but we still hold a place in our hearts for each other.

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2 Comments

Posted by on October 25, 2010 in ASD in the Grand Scheme

 

2 responses to “My Love Affair with Autism

  1. womanwithaspergers

    October 26, 2010 at 1:53 PM

    Wow. This is amazing and touching. Thank you for sharing.

    -Nicole

     

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