an excerpt from A Regular Guy
It was the first year I would not be with Matthew on his birthday. He was turning sixteen and completing his first year at Camphill Special School across the country in Pennsylvania.
Birthdays since his autism diagnosis had been difficult, and coincided with Matthew’s Individual Education Plan, a yearly meeting that outlined Matthew’s educational and behavioral goals for the year to come. The meeting reviewed the goals Matthew had met, and those he had fallen short of in the past year. There was always a discussion of his IQ and his actual grade level-both low. These meetings were devastating to me. I worried about them for weeks before, cried during, and went into a decline after.
It was difficult to rally for a birthday party, and I felt heartbroken with regret as Matthew blew out his candles. I couldn’t help but envision what the day would be like if he were not autistic.
While I would be spared the trauma of years past on Matthew’s sixteenth birthday, I was despondent that I would not be with him on this landmark birthday. Other friends with sixteen year olds were giddily planning sweet sixteen parties and trips to the DMV, and I told myself that thank God Matthew wasn’t here, aware of being excluded from the parties and the driving. But I wanted to do something special for him.
I decided to treat Matthew and his housemates to dinner at his favorite restaurant, and to have sixteen balloons delivered to him. Matthew loved balloons. They were given to him as a reward for good behavior, and he liked to attach signs to the balloons and let them go, watching them till they disappeared into the horizon. As he watched them, he hopped and flapped his hands, smiling and laughing as the balloons floated upward past trees and rooftops. He imagined who else saw the balloons and where they landed. It was quite an event and, admittedly, a great way to kill time on days that seemed to go on forever.
I called David, who was in charge of the house where Matthew lived with eight other teenage students, and explained my plan for Matthew’s birthday, thinking he would be thrilled with my benevolence. He thanked me for the generous dinner offer, but the balloons wouldn’t be necessary. He’s sixteen years old, he said, and too old for balloons.
Good grief, I thought. He’s autistic. Give the kid a break.
“David, come on. He always gets balloons on his birthday.”
David paused before telling me what I needed to hear. “You have got to stop treating him like a child,” he said. “No more toys and jellybeans. The Pokemon cards have got to go. When he comes home for the summer, put the Legos away and give him chores. Make sure he does them. Take down all the childish posters. He is a teenager.”
David was right. He could tell that I was embarrassed for babying Matthew, and sympathized. It is a pattern that parents of disabled teens fall into while trying to cope with this transition, tough even in the best of circumstances. What better way to comfort a kid who lives with daily disappointment and loneliness than buying him a red balloon, an ice cream cone, or renting the latest Winnie the Pooh movie? David said a better way was to let them give of themselves. They have spent their lives being cared for”¦The power of being able to give in return is as rewarding as it is restorative.
“He is going to have a tough time with this,” I warned, feeling guilty about making David’s work even harder than it already was.
“We know, and we are ready to help him,” assured David.
When Peter and I called Matthew on his birthday, he cried, “You said I would get balloons!”
“You’re a big guy now.” Peter choked as Matthew sobbed. “Too old for balloons.” What we both would have given to snap our fingers and be there to give him a hug.
I called David the day after Matthew’s birthday. He reported that Matthew had cried a lot on his birthday, mourning the loss of his departing childhood and fearing what would replace it.
I called Matthew the following evening, prepared for another heart-wrenching conversation.
“Hi, Mom! Today I was very busy,” he said, sounding exhilarated. “I have a very important job now. I work in the vegetable garden with David!”
He went on to tell me of all the equipment he had used, and how important it was to take care of his garden tools. He asked me to hand the phone to his dad, who could tell that the news was good by the tears in my eyes and the smile on my face.