Tuesday, February 2, 2010
Developmentally delayed parents (and the kids who love them)
This epiphany brought to you courtesy of this movie.
I've had something percolating in the back of my mind since I told you about that mom who stared so rudely at Max: Candace's comment about how if she catches girls staring at Faith, she'll wheel Faith right up to them to say hello. The "in your Faith" approach, I called it. It's a great response, much better than my snippy "Do you have a problem?!" Then over the weekend I saw a documentary about people with disabilities, and I realized I have that response because I am a developmentally delayed parent.
I was so excited to see Shooting Beauty, which I'd mentioned in the recent post about films with people who have disabilities. It was featured in a local film festival, Reel Abilities. Shooting Beauty was both incredibly moving and meaningful. Photographer Courtney Bent had planned to shoot people at a United Cerebral Palsy day center in Massachusetts. Only she found that her photos were depressing, not inspirational. So she handed over cameras to the adults there and let them take photos. Some of the adults had extreme physical challenges, like EJ, who didn't have much use of his hands. Courtney adapted the camera so he could snap photos with his chin.
Here's the trailer.
I laughed. I wept. But mostly, I was inspired. At one point, a wheelchair user named Tony says that when he sees people staring at him, he makes a point of going up to them and saying hello because if they make assumptions, they're going to be wrong. And that is the precise moment when I realized that he is so right, and that I am a developmentally delayed parent.
Unlike the trillion baby books out there that tell you everything except how fast your kid's eyebrows will grow, there are no books that give you a timeframe for your development as the parent of a kid with special needs. No book says, "Six months after the diagnosis, you will stop bawling every day. At one year, you will feel an emerging sense of acceptance about your child's challenges. At approximately 18 months, you will stop mourning the child you lost and start cherishing the child you got." There is no What To Expect, Special Needs Edition.
My main delay is the defensiveness. I have not outgrown it; the more mature response to people's stares would be a willingness to engage in a calm way, perhaps even educate them. The more mature response would be to help people see what a great kid Max is and not swat them away. I am not saying this self critically; every parent of a kid with special needs develops at his or her own rate, same as our kids. I'm just saying...aha.
After the film ended, Courtney and Tony came out for a Q&A.
Here they are.
I raised my hand and asked how they thought this film had changed perceptions of people with disabilities. Both said the same thing: That it was opening the lines of communication and starting conversations. Tony mentioned that at screenings of the film, afterward kids have come up to him and embraced him.
As Dave and I walked out of the auditorium, I vowed that the next time we were around kids or adults who were staring at Max, I would start the conversation. For Max's benefit. For other people's benefit. For my benefit.
Meanwhile, I was so wowed I bought two copies of Shooting Beauty to share with you. Leave a comment and I'll randomly pick two winners.
Posted by Ellen Seidman at 12:53 AM