6 hours ago
Monday, August 6, 2012
Raising kids with special needs: On letting down your defenses
I had an attitude-changing experience at BlogHer 2012 HealthMinder Day last Thursday. In the morning, I moderated a panel with Kate Canterbury and Marisa-Howard Karp called Blogging About Your Child With Special Needs (you can see live-blogger transcripts from the day here). We discussed why we chose to blog, how much we do and don't reveal about our kids, how much we've given and gotten in return. I mentioned an old Talmudic saying, "He who has saved one life, it's as if he has saved the world." Blogging's been similar for me: Every single time I get a comment or email from a mom about the inspiration found here, I feel as if I've inspired the world.
Later, I was at the Overcoming Burnout session, listening to Tanis Miller, Julia Roberts and Susan Senator. Susan spoke of the day she and her son, Nat, were in Boston Commons watching some jugglers. Nat has severe autism and some "mannerisms," and as he stood there doing this thing, Susan got her her guard up because she assumed bystanders might laugh at Nat. She was, she told us, prepared to snap photos of them on her iPhone and post them on Facebook with the caption "See who laughed at my son!" And then: Nobody laughed. The lesson she learned that day, she recalled: "I should try to chill and enjoy myself."
It could have been me standing there, telling that story. Because my defenses are always raised when it comes to Max. I am hyper-aware of people staring, of kids who might make fun of him, of adults who shun him or give him that pity stare. This instinct comes from my fierce desire to protect him, and from my desperate wish that people wouldn't be unnerved or scared of his disabilities.
It's been this way for years. When Max was about three, I started seeing a therapist. I sat in her office during our second session, crying about how lonely I felt; a group of women I'd been friendly with weren't having Max and me over for playdates. I mused about whether they felt uncomfortable around him or me. "Maybe it's not them, it's you," the therapist said. Wha?! I wasn't prepared to hear that, and it upset me even more. I stopped seeing her soon after.
Only years later did I realize that even if she'd been blunt, her words contained truth. I am sure back then I was throwing off all sorts of "Don't treat us like aliens!" pissy vibes that must have been off-putting. Sometimes, I still throw those off.
After Susan finished talking, I stood up and told her how much I related to getting ticked off about people staring, something I've vented about. Lately, I've been trying to diffuse situations with staring adults by saying, "Would you like his autograph?" Humor helps. But in general, I had to acknowledge that day, my defensiveness about Max is something I still need to work on. It can only help Max. And, as my friend Kate has noted, my blood pressure.
Like I say, I keep right on progressing developmentally, along with Max.
Posted by Ellen Seidman at 6:43 AM