When Moe was first diagnosed, I did not want to go to parent groups or seek out support. I didn’t want to hear their stories. I didn’t want to be forced to imagine a future other than the one where Moe is just fine.
I have wonderful friends, who, while they may not always “get” what it means to have a special needs child, certainly get me. But most of my day to day socializing was with a moms group I joined when Moe was a baby. They are wonderful mothers, but because of Moe’s therapy schedule, and his delays, I could no longer do what they were doing.
I was stuck between a community I no longer fit in and one I didn’t want to be in.
Then I found blogs. And I started commenting. I wrote my own blog, and got comments there. I hopped on Twitter, and I found a community. And I liked it.
Fast forward to last Friday, August 5, 2011. This virtual community in which I had at first reluctantly, then avidly, become involved, came together at BlogHer. And now I am no longer satisfied with having just an online community.
Imagine how it felt to sit at lunch with Ellen, writer of Love That Max, and fierce advocate for ending the use of the “R-word.” Imagine how it felt to get a hug from Laura Shumaker, and hear her say “it gets easier.” Imagine how it felt to meet Liz Ditz, Jennifer Byde Meyers and Shannon Des Roches Rosa, founders of Thinking Person’s Guide to Autism. Imagine how inspiring it was to hear Robert Rummel-Hudson speak about his daughter, Schuyler, and disability rights. Imagine what it is like to meet the funny and beautiful Julia Roberts, founder of Support for Special Needs, and this conference’s fearless leader.
It was also nice when people were excited to meet me! Like when Caryn (Living with Logan) accosted me in the lunch line. I was thrilled.
I think my tweet during the conference sums it up: “Do you know what it is like to be in a room of people who truly know you, though you’ve never met before? I do.” It is empowering, comforting, inspiring, and emotional. It feels right.
I met so many wonderful people, too many to list here (though I will be updating my Resources page with many of their blogs). And having even this brief real life connection has now strengthened our online connections. We are already plotting and planning our next conference, and I hope I’ll be able to meet up with many of these wonderful people soon, since many of them live here in the Bay Area.
I’m not going to summarize the panel discussions from the conference. I’m sure other bloggers will do that (the link-up is here), and you can read the (somewhat confusing) transcript over at BlogHer’s Virtual Con. But I do want to include a few of the moments I found most inspiring and thought-provoking.
“I don't care what you think of my kid. My kid has every right to be here. He's not living up to anybody's expectations but his own. And if you can't see that, that's your problem….There's… a real kind of fear mongering about kids with special needs. Oh, my God. You have a kid with special needs would be the worst thing in the world and you have to lay down and die… I don't know how you people do it. How many of us hate our kids? We love our kids. The thing is having other people see that we don't just love our kids. We respect our kids. And we demand that other people respect our kids too. So just have the confidence to demand it.”
When we talk about how much money goes into special education and goes into all the things that we need, people talk about that money, it makes me wonder, do people talk about the burden of bridges that don't collapse or on the burden…if your house catches on fire or if your community is hit by an earthquake? I talk about shifting the discussion of what our families and what our kids need to something besides…an economic budgetary issue.
All those people who have this problem, I bet you 90% of them went to public school. You went to school. You are the beneficiary. You are seriously going to take that away from the people who come behind you? School board meetings make me crazy.
We can frame this whole discussion in terms of civil rights rather than in terms of entitlements or funding…These are the programs that when times are good, well, then we can afford them…Almost…luxuries and when times get rough, all of a sudden, our kids, their lives and the things that…give their lives power and meaning, they're on the table.
From the audience:
I wanted to comment on what Rob said about disability rights being the most important political movement of this century. It is. It is the most important political movement of the century because it strikes at the heart of our fascination with independence. It strikes at heart of our desire to be isolated, strong, powerful, self-reliant individuals and that's American dream, right? That you can make it on you own and all that. That's the so, when we're pointing out to people that our kids need services, which is, of course, what we do all the time as advocates…We're their worst nightmare. We have to make it less of a nightmare, which all of our blogs do…say we're all on this continuum capacity. I really don't like disability. I like capacity. We're all on a capacity continuum and we're all going to be disabled if we live long enough.
Inspired? Want to be part of a wonderful, supportive community? Do it. If you have a child with special needs, join us over at Support for Special Needs. If you need another kind of support, find it. It isn’t scary or depressing. I promise.