Three years ago, I was approached by a local business owner asking me to provide training to his staff regarding autism. Jerry’s goal was for his staff to become more informed because his adult son, Jonathan, would be working in the family business. It was important to Jerry that his employees understand autism, so that Jonathan would work in a place that embraced his talents, understood his challenges, and encouraged him throughout his day—nothing different than what we all desire for ourselves. Three years later, it is clear that Jerry’s first steps in providing resources to his staff, as well as to Jonathan, have culminated into some incredible outcomes. Jonathan is now preparing to move into his own apartment with hopes of acquiring a job in the community that he finds fits his interest level, and provides him with the income needed to be self-sufficient.
Despite some of the challenges Jonathan experiences due to his autism, he continues to work hard toward his goals of a more independent, fulfilling, and social life. Working with Jonathan has been both a challenge, and a delight. The challenges are not defined by Jonathan, but rather in how I can best facilitate a positive outcome for him. The biggest challenge is often how others see Jonathan. Are they really seeing Jonathan, or are they seeing autism? Do they know that he has an amazing sense of humor that often brings us to tears? Do they know that he loves music, and has a beautiful singing voice? Do they know that he is bright and witty with many stories to tell about his favorite subjects? Do they know...Jonathan? You see, autism is part of who Jonathan is, but it does not define him.
Recently, I received an email from a parent, Gretchen, with a video attached. The email read: “Sam began singing God Help the Outcasts from the Disney movie, The Hunchback of Notre Dame over the past week. I didn’t realize what he was singing until tonight. We’d had a trying day of basketball, shoe shopping, and grocery store. He had been very anxious all day and we were all beside ourselves with his repetitive behaviors and him missing Daddy, who was at work. I captured this on my phone while we were still in the car, just getting home from the grocery store. When I looked up the lyrics, I was amazed. This is the only song I’ve heard him spontaneously sing in its entirety - EVER. If you can read the lyrics while watching the video, it helps to understand. After about an hour of tears, I uploaded it. The video is dark, since the sun had gone down - I just wanted to capture the moment. I think our little man may be trying to tell us something.“
I too was struck by this video; Sam sung every word. It was incredibly moving, but I found my thoughts shifting to Sam’s parents, Gretchen and Sean. Gretchen describes a day in the life of a parent with a child with autism. On this particular day, she was doing it without Sean, which can be quite a feat since Sam is one of a set of triplets! Describing the hustle and bustle of the day, Gretchen was moved to tears by Sam’s song, sung in its entirety, about acceptance. Not only was she emotional, because Sam had sung this spontaneously and in its entirety, but because the song triggered thoughts of when Sam himself might have felt as an outcast. I ask the same question...do people really know Sam, or are they only seeing autism? Sam is bright, loving, loyal, inquisitive, and thoughtful. Autism is part of who Sam is, but it doesn’t define him.
Receiving emails and phone calls from parents sharing their stories of triumphs and challenges eventually leads me down the same path time and time again. The more we educate ourselves about autism spectrum disorders, the more we can support, encourage, companion, and include individuals with autism in our schools, workplace, and communities at large. Understanding autism opens pathways to opportunities; however, it is but the first step towards affecting real change. Change occurs when we step outside our comfort zone and become involved. Knowledge is power, but action is a catalyst.
We invite you to join us April 14th for our 5th annual CARE Walk. Taking part in this event is an opportunity for us to be a reminder to parents and individuals that we choose action so that they have more opportunities. As a community we must belong to each other. What does it mean to belong to each other? Simply put, it means that we must get involved and be a part of a collaborative effort that increases opportunities, opens doors, and improves the quality of life for individuals with autism. The action taken can be as simple as befriending a parent new to the school where your child attends, learning more about autism, or walking with us on April 14th. No matter your choice, you will become part of actions that change lives!
"If we have no peace, it is because we have forgotten that we belong to each other." -Mother Teresa