One of my goals for going to Blogher11 was to sit in on the Special Needs Mini-Conference.
Prior to this, I had never really identified as a special needs blogger and somedays I don't really identify as a special needs mom. Over the years however, I have come to realize how others who have had the experience of raising an adopted child - particularly, but not always, one adopted internationally - were drawn to one another at gatherings. More recently I have noticed the vast difference in my personal comfort level in the company of mothers with special needs children. These women have seen it all. A temper tantrum here, an unusual mannerism or several, an aversion to transtions, a sensitivity to the seemingly innocuous, a vocabulary of strange sounds - these parents try to help or they nod in recognition - but they don't judge.
Beyond seeking the company of others who had "been there," I can't say that I had any specific expectations of the extended session except to learn how people, beside those I was already reading, handled this topic. Mir and Christy, for instance, handle it with particular grace; something I have to assume is partly an extension of their personalities, and partly their writing talents. I was also intrigued by the notion, in the session blurb, that we were telling a story that no one wants to hear.
Well, maybe no one outside the special needs community, but as we are learning, that community is a whole lot bigger than people think. The fairly large room at this one conference was filled with people, and this was just one subset of a conference of people who called themselves writers or bloggers. Imagine how big the population outside this one room could be and what we could learn from each other.
It turned out that one of the things author Rob Rummel-Hudson was talking about was advocacy - writing and talking about what it's like to raise a child with special needs when the people around you, who haven't experienced what you are going through, want mostly to avert their eyes. Aurelia Cotta spoke about the people around her not wanting to hear how medication worked for her and how people compared her to a drug addict. Someone in the audience mentioned that she struggled with the hopeful but impossibly high expectations of her relatives for her preemie daughter when the future was far from certain.
At our tables we talked about what and how much we shared about our children or ourselves on our blogs and in real life. How much do the people outside of our immediate lives need to know? Particularly for those with so-called invisible disabilities, how much do we need to explain their behaviors? How much will they hold against us? Why are each of these encounters and the decisions associated with them so much more of a struggle?
Interestingly, I found myself once again at that scary intersection between my public life and my semi-anonymous blog, and the more we talked and I listened, the more I realized how many dimensions there were to the struggle of parents, including one I have spent much of my life defending - the public school. Before I knew it, I was standing and speaking and addressing something I have never really discussed on this blog - I outed myself as an elected School Board member.
I am and I have been for the last ten years, a local school board member. I got involved out of a lifetime interest in education, educational technology, and educational policy. I have worked my way through nine budget seasons cognizant of the tension between the cost of special education services and the pressure they put on the rest of the school, I have learned more and can go on and on about how to run a school, what works and what doesn't, what we as a society should have but aren't willing to pay for.
I have sat in on countless IEP meetings as a parent and wondered what it would be like if every student got this kind of attention instead of the half-hour parent/teacher conference twice a year, but the national conversation about education seems to be going in exactly the opposite direction. I have involved myself in countless discussions online about the conflict of reformers who act as though we aren't demanding enough from our teachers and simultaneously maintain that they are overpaid because any idiot can teach. I have argued with people who simply do not recognize the presence of special needs students in their calculations of what makes a successful school, or worse, claim that special ed services are simply a ploy by union members to increase their numbers. What I have found most disturbing though, is the more recent tendency of people, who were once only against mainstreaming, to assert that our scant educational resources should go to those who have the best chance of being productive members of society.
This sentiment has only been escalated by the rise of the Tea Party. Many of those who once feared that such arguments would meet with disapproval for their very selfishness are afraid no more. They speak of our children as a burden for which they should not have to be responsible.
And so, I stood in that conference room and identified myself and advocated for advocacy. Because this fight is going to get worse before it gets better, but it's not a fight any of us has to face alone.