It’s been over a year now that I have been working on the weekly documentary web series called The A-Word. I follow Jack Riley and his family once a week, and watch their lives unfold. At least that’s how it was. The more time that has gone by, the harder it is to remain as only an observer.
I root for them with every skill that Jack Riley acquires, and feel worried when he breaks down and tantrums over something that seems trivial. I’ve grown with them as we’ve both learned about autism. What the word means, what it can look like, and that the word itself is; only something that Jack Riley has, not constituting the person he is.
I feel lucky that I met a family that has been so giving with their time and their lives. They have let me in their home when they are still half asleep and in pajamas. They’ve given me coffee while we all adjusted to being awake so early. (Jack Riley’s first therapy session of the day begins at 8am.) I have gotten to know Cheryl and Mike beyond what the camera sees, as a friend.
As a filmmaker what really gets me is the way my relationship with Jack Riley has changed over the year.
One of the key signs of autism is the deficit in social skills and communication. Children with autism typically don’t share experiences, point, or make eye contact.
When I first came over to film Jack Riley with his therapist Jessica, he’d pay little, to no attention to the camera, or me. He wouldn’t turn to the door when it opened, or say hi. As time went by he became more curious about the camera, but not the person behind it. When I look at the footage I have shot, I can see how that has changed slowly. I remember the first time he came over and looked at me and pushed me while smiling. He wanted to play with me but didn’t know how to ask.
When I come over now I am greeted with an ecstatic squeal “It’s Suzanne!” Jack Riley fully acknowledges me, and asks to play with me during his breaks when he has therapy with Jessica. He’s really excited to learn and share things with others and is able to appropriately communicate.
I knew over time I would get to know Mike and Cheryl more, but never thought that I would have a connection with Jack Riley. I didn’t know it was possible.
I have learned that no diagnosis can cloud a person’s personality, who they are will always shine through.