I've been a special needs mother for ten years now. It strikes me, lately, that I've been rather isolated, by choice, it seems. There's a big community out there of which I've not really been aware. As I've read more over the last few months, I've been most interested in what I'm starting to call other mothers' 'coming out' stories. This isn't quite the right term, but it's the best I can manage at the moment. "Coming forth"? The struggle is a coming to terms with identity--why the parallel sticks in my mind of my brother's actual coming out, I don't know. There's an odd mixture here that's similar to that: joy and shame and self-realization, wondering what others know and don't know, a type of acceptance, a looking for and finding community. Add to that the complexities of two identities wound into one (parent and child). Add to that the ability to bifurcate sensibilities at will because, indeed, you are a separate person from your child. Add to that, well, how about any of you out there reading adding to that?
After Robert's "event," his low muscle tone and vacillating expressions, as well as the g-tube feeding and presence of the enteral pump, these all gave us away pretty easily. We were 'out' definitively as he was clearly too big for a stroller and moved into a wheelchair. For about two years, we lived in a zone where people just kind of looked at you funny every now and then. Double-takes, curious stares. Solemn small children approaching Robert with a finger to their lips and waiting for you to explain.
For the last eight years, I certainly haven't been able to 'pass' for normal when I'm accompanying Robert. So I don't have much of that anxiety anymore about whether people will notice things or think we're strange or not understand. Other people know we're different right from the start. Helpful in its own way, I guess. People don't ask me to explain anymore, which is a big relief, as I'd grown way tired of that.
So, being 'outed' early as a special needs family made me want to curl up and work out other aspects of my identity: shore up myself as an individual. Friends and others would ask or state with an assumption that we must be part of some support group or have found a support group, or some such. They'd be taken aback by our rather blank stares: support group? Robert's medical needs have been intense until recently, and we spent so much time with doctors, therapists, teachers, and the like, that the idea of talking any more about it with others made me just feel, well, tired. In addition to that excuse, support groups of which we were aware all served different constituencies--autism, down syndrome, developmental delay, cerebral palsy, premature birth.
If anything, we've felt like a freak among special needs families! Living with Robert's disabilities has been an existential quest: there is the present, the past is a series of impressions that might be true or false or neutral, and the future is an enigma. It wasn't that we didn't want to share with other families. Perhaps it was that we didn't want to go to a real time space with real time people sitting in a room like a seminar and having an agenda to discuss and feeling as though anything we said would be a departure or distraction from what was of interest to the others. We also didn't have any clues or answers to his medical condition--nothing to go on: no test results, no brain images, no nothing. All week long, day in and day out, we'd get advice, but mostly questions from the professionals who were supposed to be giving us answers. I guess a support group into which we were trying to force ourselves like a square peg into a round hole felt as though it might be more of the same.
I feel much more comfortable in this virtual world. In 1998, when Robert had his neurological event, the Web as it is today didn't exist. I couldn't go online and find, within minutes, others with whom I had something in common. Now, approaching a threshold where I feel as though I have some kind of 'answer' that would give me the grounds for forming bonds with others, I have no idea of how to ask.