Here is what I took away from the panel:
Though the session was a success, it was not long enough for our conversational and information sharing needs. We all had a lot more to say, the audience had a lot more to ask.
Susan was a great moderator: casual, confident, and articulate. She introduced us all with short bios and blog names, and then we were off and running.
Susan talked about why we blog about our children in the first place, why she started blogging. She said she was lying down with her son, trying to coax him to sleep, and she couldn't stop thinking about the collection of yellow post-its in the bottom of her purse, each covered with information she needed to pursue or share. When her son fell asleep, she got on TypePad and had a blog by the next day (and Vicki left the very first comment).
Vicki talked about her Literary Mama essay, The Mother at the Swings, which describes another mother's efforts to talk about the similarities between Vicki's son and her own child while obviously wanting to know more, know why. Vicki said that the conversation she described did not actually go as written -- at the time Vicki didn't respond to the other mother, she didn't know what to say at the time. But later she did. And she wrote that essay to help other parents consider what to say, for when they find themselves in similar circumstances.
Jennifer talked about the importance of blogging in promoting writing from special needs perspectives. When she put together a collection of short stories on parenting, she tried to include three describing having children with special needs, autism, NICU stories, etc. (Ironically, this was before she went through her own NICU and special needs parenting experiences.) In all but one case the publisher declared the stories to be "too scary." But online we can write whatever we like.
Kristina talked about her own blogging journey, about the initial need to release pressure. Her first blog was called "My Son Has Autism." It was very personal, very different from her current more information-based AutismVox. Her current blogging still includes glimpses into her son's life, but she no longer focuses on him like she used to. And she now uses photos sparingly, if at all. Some of these changes were inspired by feedback and comments from autistic adults such as Amanda Baggs, who asked her to consider what her son might think of how she was describing him, of his right to privacy. She also talked about the stands she takes in the vaccine wars, about drifting away from a DAN! regimen and GFCF diet, about being a classics professor, about ADHD in her household. She seemed very happy to get o speak directly to her audience.
I talked about how my friends and I use our precious time interstitially, how we can keep up with each others' busy and overwhelming lives through the "hive mind" of blogging. I described how my beloved blog readers (that's you!) rallied behind so many projects and fundraisers for Leelo, etc., that blogging inspired my friends and I take our efforts out to the real world, where we created both our local special ed PTA, SEPTAR and the Can I Sit With You? project. [I did not get a chance to talk about how I also blog because we have been so very fortunate, and that I think it's important to share the techniques and ideas and approaches we use with Leelo with people who might not have access to such information otherwise, or who might not have considered our perspectives.]
Susan then opened questions up for the audience. Again, please look to the liveblog for additional details (like these notes, it is not a comprehensive transcript). What stuck with me was:
A woman spoke about being the parent of an infant with Down syndrome. She said she was having a hard time sharing her emotional needs with her husband, how he wasn't at the same place as her, and was it okay for her to blog about that. Jennifer said that it was, absolutely, and that she should do it with an alias if she needed to (she said many more, very caring things, as did Vicki I believe). I reminded the speaker that every woman on the panel was several years past the stage she was experiencing, and that it was really important for her to know that if she was not able to find the solace and support she needed in her friends, family, or blogging, that there is absolutely no stigma attached to getting professional help. She really does need to take the very best care of herself right now.
Liz Ditz got up and talked about invisible disabilities like dyslexia, and the IEP process. She mentioned that I had always had relatively straightforward IEPs. [I want to note here that while this is true, the three main reasons why are 1) we live in a good-sized city with a decent Special Ed department budget, 2) Leelo's needs are moderate to severe; no one ever questions whether he needs services, and 3) We kept him out of the school system until kindergarten, so by the time he arrived, he had a comprehensive home curriculum and program and the district mostly only had to sign off on Supervisor M's suggested goals.]
Another woman asked whether it was okay to use humor, as she does; to write things like "helmet head" and "retard." [Clarification: it has been brought to my attention that SK was "worried that her child would be 'retarded,'" which is not the same as writing 'retard.'] Now, I wrote previously about how nice Jennifer Graf Groneberg is. Please know that she is also courageous, principled, and fierce as hell. She very eloquently but firmly replied that she did not believe in using words that take away from our children's dignity and humanity, that it was not okay. Either she or Vicki or Susan (sorry!) said that what the woman needed to do was get a girlfriend she could say those things to, instead.
It turns out that the "helmet head" woman was Stephanie Klein, who gave the BlogHer08 closing keynote talk with Heather B. Armstrong. I had no idea who Stephanie was when she asked her question. I figured she had to be a newbie blogger who didn't know any better, so after the panel I went up to her and asked if she thought that she could say those things because they were her kids, the way I can call my brother an asshole but she can't. "Yes!" she said, "That's exactly what I mean!"
Then I walked into the keynote and saw her on stage.
No, Stephanie, you shouldn't write such things. Especially with your readership. (Stephanie's response here.)
I know I've left out a lot, but that's all I've got for tonight.
Technorati Tags: blogging, BlogHer, BlogHer08, IEP, Jennifer Graf Groneberg, Kristina Chew, special needs, special needs kids, special needs parenting, Squid Rosenberg, Stephanie Klein, Susan Etlinger, Vicki Forman