"My husband and I are having a hard time right now relating to our friends," read the message on my Facebook page. "They just don't get it and we have begun to feel as if we are now being treated differently and not included anymore due to the fact that our daughter is disabled.... I have begun to feel that good friends are viewing us as 'complainers' because we have more struggles than the average family. When friends do call and everyone is together, we feel ignored.... I think having others' perspective will help us feel not so alone."
It's hard not to feel excluded as a special needs parent, because sometimes you are. I used to do girls' night out with a group of local women. All of us had kids around the same time. They started having playdates, and Max and I were never invited. I complained to the therapist. "Maybe they're not your friends," she offered, and I thought that was cruel of her to say. But eventually I had to acknowledge she was right. Those people were just acquaintances, ones who didn't know me all that well. They weren't up for handling a special needs baby who wasn't developing like their kids, and his worried mom.
Even good friends may not be sure how to behave around you. I remember one telling me point blank when Max was close to three and not yet walking that she was never sure whether to invite me to out, like to the park, because Max couldn't run around like her kid did. "We'd love to come, just to be with you," I said. "We'll figure out fun stuff for Max to do." And we did. In retrospect, I wished I'd been more proactive about making plans with people instead of feeling sorry for ourselves when we had none.
I have wonderful friends who have always been there for me—to listen, offer advice, or do whatever they can to help (my girls Wendy and Hedy watched Sabrina when Dave and I took Max to Duke University to get his stem cell infusion five years ago). I have also found comfort and camaraderie in this online community. And when Max was little, I saw a shrink. It was a relief to freely grieve, rant and cry to someone without concerning myself that the conversation was too one-sided.
How about you: Have you felt like this mom does? How have you handled it?