By Joanne De Simone
Last weekend my 14-year-old son went out alone for a walk. Before Sebastian left on this Dunkin’ Donuts pilgrimage, I couldn’t resist a few last minute reminders. “Do you have enough money? Your phone? Don’t talk to strangers. Text me when you get there.” He responded with typical teenage answers, “Yes. I know. I will.” Then he added, “I love you.”
As Sebastian walked from the safety of our quiet neighborhood to the hectic, four-lane 40mph commercial strip a mile away, I thought about how much he’s grown. The first time Sebastian went out alone, he was three years old and took advantage of a door left open while my husband and I carried an air conditioner up from the basement of our Brooklyn row house. I caught him before he reached the corner. The next time, he was seven years old and I had fallen asleep mid-day in our New Jersey home. My husband found Sebastian in a nearby cul-de-sac. Two weeks later, during a trip to Pennsylvania, Sebastian slipped out of our hotel room in the middle of the night. Strangers found him and the state troupers grilled us. I held Sebastian tight that night, frightened by all the “what ifs.”
The world felt too large and unsafe for my autistic son.
About 20 minutes after Sebastian left for Dunkin’ he called me. “I’m here. I bought a muffin and a drink.” I imagined him sitting alone. Did he take too long to order or have trouble paying? Did he speak too loudly? I’m trying to guide him towards greater independence, but I worry. Will the world be kind when I’m not with him? He’s starting to notice when people stare. I can’t set the pace of Sebastian’s progress, nor can I protect him from it. But I appreciate how far he’s come.
When Sebastian was in kindergarten in Brooklyn, he was too high functioning for an autism class, too behavioral for inclusion, and too sensitive for other segregated public school settings. We did find the perfect private school, and lawyered up. We won the case before it even got to a formal hearing, exactly one day after the private school had filled their last open spot and so Sebastian was stuck in the wrong school. After enduring a year of his teachers’ daily feedback—Sebastian doesn’t listen, won’t do his work, doesn’t play with others, ran from the classroom again, hit his aide, Sebastian needs to be in a classroom where they play Cinderella music all day—I had no idea where he belonged. Some friends lured me to New Jersey with tales of their diverse and welcoming school system. In a new state I tried to rebuild, and to refocus. Every day before Sebastian got on the school bus, I’d remind him, “Work hard. Be kind. I love you.”
We’ve been in New Jersey for nine years now. Sebastian has made slow, steady gains in his self-contained special education classes. Some years have been easier than others.
Last year, at Sebastian’s educational planning meeting, he advocated for himself. “I want to take a world language.”
“OK,” I told him. “But you have to do the work, without complaint. And if your behavior tanks, you’re out of there.” He stood strong. “Mom, I’m mature now.” I wasn’t sure if he could handle the work, but he deserved the opportunity to create his own goals. On his last report card, the Italian teacher wrote: Well prepared, responsible, hard working, excellent attitude and effort. Is a privilege to have in class. I never grow tired of moments that prove our move to New Jersey was worth giving up my home and my job.
An hour after Sebastian left for Dunkin’, I started tracking him on my phone. I trusted him, but watching the little green dot moving closer to home was comforting. I wondered if he felt lonely out there. People with autism have higher rates of depression and suicide. When Sebastian was 11 he told me, “I wish I wasn’t autistic. It would be easier to make friends.” He wants to fit in with kids outside of his segregated classes. He’s joined the cross-country and wrestling teams and attends every school dance. He has managed to exchange phone numbers with some kids, but no one texts or calls.
Sometimes I ask him, “Are the kids nice at school?” “Yes Mom. Why wouldn’t they be nice?”
Four years from now, most of Sebastian’s peers will move on to college. I don’t know what Sebastian will choose to do, but I’m afraid this divide will grow too wide and the world will seem less kind. Sebastian is so excited about starting high school. Recently he told me, “The months are going slowly, but I love middle school and I know I have to enjoy this time.” I didn’t learn that lesson until I was in college. Stay present. Enjoy the now. I’m proud of Sebastian. He’s kinder than I was at 14—does chores without whining, and hugs me when my days with his older, medically fragile brother are hard. The day he walked to Dunkin’, his brother was sick. Sebastian told his father, “I’m afraid this is too much for you and Mom.”
I don’t need to tell Sebastian to “Be Kind” anymore when he leaves in the morning, but as I watch him through the window I say it anyway, willing the world to hear it.
Joanne De Simone is a special educator, writer, and outreach coordinator for the Alliance of Private Special Education Schools of North Jersey. She lives in New Jersey with her husband and two sons enjoying Sebastian’s growing independence and the kindness he’s found from the members of his high school cross country team. Follow her on her blog and on Twitter.
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