Written by Sarah Schneck, senior at Northeastern University and Chair of the 2012 Greater Boston Walk Now for Autism Speaks Kickoff.
Autism is something very near and dear to my heart. After working at an intensive therapy camp for children on the spectrum, I have found my passion in this field. My experience interning for Autism Speaks has only made me more passionate for the kids -- their families -- and the community as a whole. Chairing this year’s Greater Boston Walk Now for Autism Speaks Kick Off Reception was something truly special to me. It was an honor being able to work alongside such incredible people to put together a night celebrating connections.
As I was brainstorming potential themes for the Kick Off, my roommate asked me why I have chosen to spend my life working with individuals affected by autism. I told her it was because I loved making the connections with the kids. I loved becoming a part of their worlds -- and I loved helping them show their true potential as they blow everyone away with their brilliance, their wit, and their endless talents. Then my roommate did the hard work for me -- she told me I had my theme right there -- connecting with autism.
The more I thought about it, the more I loved it. There are so many connections in the world of autism. Anyone who has been in this community for a day, week, a month, a lifetime, knows the validity in some universal truths such as: no man is an island and it takes a village to raise a child. There are connections family members share with their loved ones, which prove to be some of the strongest bonds I’ve ever seen. There are connections formed between teachers and their students when they have that “aha moment!” There are connections between individuals on the autism spectrum with the world around them every single day.
Shortly after I chose this theme for Kick Off, I went out to California to work at a camp for individuals on the spectrum that I work at each year. Sure enough, the theme of “connections” followed me. The connection I saw between two campers will remain my head as my go to image when I hear the word connection for the rest of my life.
Matthew had a really rough year leading up to camp. He was put on various new medications, and due to some side effects of some of those medications, the boy we were used to having year after year, left us as a calm boy last summer -- and came back, after a year of growing taller, bigger, and stronger, as a very powerful, aggressive 16 year-old young man. He was not the same Matt we had remembered.
Throughout the week, we had a few pretty scary moments between Matt and some of the staff members. We saw through these tough moments, finding the smart, competent, kind boy who we had always known. We wanted him to stay at camp, because we knew how much he could grow at camp, and we also knew how much we could learn from the cool kid that he was.
But on the last day of camp, he had lost control of his body. And we, as a staff, full of trained therapists -- who had years of experience with hundreds of clients -- weren’t quite sure what to do next. Luckily, Morgan, a nonverbal 18 year-old girl, also on the spectrum, knew exactly what to do. Morgan had attended camp with Matt for years. During Matt’s tough moment, she was over passionately typing on her iPad -- she typed: “I’m worried about Matt. I want to tell him. I want to tell him I want success for you. I want more for you. It’s easy to get support if you believe. Ease in to art form and dance in it. Really believe. Good boy you are. I ease the pain, then goodbye. Hear my real good hope for you Matt.”
While this time went by, Matt’s family had arrived. He was in the backseat of their car to go home, but still very out of control. Morgan climbed in the back of the car with Matt, but his behavior didn’t faze her. She stared intently at him while the camp director read her words. She then stepped outside of the car, walked around the car, opened up his car door, and rested a hand on his arm. We all watched as Matt’s body relaxed. He walked out of the car, and up into our group room. He grabbed a ball to bounce on and was ready to complete closing group on last day at camp with everyone - something he, Morgan, and the rest of us knew he was fully capable of doing the whole time.
If that isn’t a connection, I’m not exactly sure what is.
It takes a village to raise a child. The village that was in the room the night of Greater Boston Kick Off was just so inspiring. When people arrived, the each took the time to fill out a cut out person with their connection to autism. Once they hung the people, the visual so clearly represented that we, together, form a strong network of people all connected through autism.
Within the village, many people shared their stories throughout the evening as to how they personally are making a difference through connecting with autism. Terri Farrell, a mom of a beautiful boy with autism, shared how she truly believes the best thing to do to move forward each day is to connect with anyone and everyone – sharing stories – and ending enlightened. Emily Nowak, a senior special education student at Boston University, shared a special moment where she connected with a child on the autism spectrum at a young age that led her directly to the path she is on today – wanting to do everything in her power to connect with as many individuals affected by autism as possible. David Dilley, a behavioral therapist, articulated a very moving story about a family he has connected with – and how much progress their son has made in the years he has worked with them. Kerri Liljegren, a speech language pathologist, shared about one of the early days in her career where a connection between her and her students still inspires her today to continue on her path. Sarah Spence MD, PhD; from Boston Children’s Hospital spoke about her revealing research that is going on with individuals with autism – and the many ways that the connections with Autism Speaks helps her each day. Donna Wise, a special education teacher, talked about how much each connection she makes with each student defines her passion – and how much she treasures those “aha! moments” with her students. Sam Kanefsky, son of Cathy Kanefsky, Vice President of Field and Chapter Development, stole the night with his speech about his life on the autism spectrum.
Sean O’Brien, President/Principal Officer of Teamsters Local 25 & Eastern Region Vice President of the International Brotherhood of Teamsters served as the evening’s honorary host and was joined by Liz Feld, President of Autism Speaks, Cathy Kanefsky, Vice President of Field and Chapter Development, Michele Toy, the Northeast Regional Director and Paul Irwin-Dudek, National Walk Director.
It was a beautiful night. Together, we will remain connected as we join together celebrating our loved ones with autism on September 30th at Suffolk Downs for this year’s Greater Boston Walk Now for Autism Speaks! For more information, visit: www.walknowforautismspeaks.org/greaterboston.