Blogging About Our Children With Special Needs: Real Recap

Liveblog of our panel is up! Thanks HappyKatie.

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.

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  1. Your panel was a favorite of mine from the blogher weekend. The little I shared about my son's Tourette's and school suspension connected me to another mother whose son is newly diagnosed. It feels good to share our own path with those beginning the journey. That's what it's all about, and your panel made that happen. Thank YOU!

  2. It was my favorite panel as well. I wanted to say much but it felt an implausible situation.

    I was not going to comment on this during the sesh but i have to say that what that woman (who I did not know, as I later told you in the lobby, and have absolutely no reason whatsoever to defend) was very specifically referring to ONLY her own child and in the context of her OWN freaking out after brain surgery did she mention 'my kid's gonna be a fucking helmet head kid?' and damn squid i had a few insane moments like that myself.
    she also said the word (I believe) retarded and not 'retard' and was also referring to (I believe) her own child and in that context.
    I also absolutely agree that perhaps she may want to consider her impact on the wide readership she appears to share.
    BUT, and this is a big one. IF you have a special needs child who is undiagnosed AND you wish for him or her to go to public school, THEN the criteria for his/her special education will be a label. The label will be M R; which stands for Mentally Retarded.
    I understand the need, benefit, wish to change these terms in the name of sensitvity. But there are many mothers out there who need their own desensitization to be able to cope with hearing those words at every single IEP meeting. So on the 'asshole' theory....I guess she gets to decide, and I would not judge her for that in her position.

    That should be my next post. I am so lazy it probably will be.

  3. @Califmom, so glad you were there at the panel, even more glad that you made a connection from it. Please keep checking this space, especially in the fall -- SEPTAR.org, our Special Ed PTA, is working very hard to promote inclusive environments through talks and presentations, especially among students as they are the ones who spend the most time with our children. I will be documenting/sharing our efforts here.

    @gwendomama, I cannot believe you are disagreeing with me. We are no longer friends. AS IF.

    I am one of those jerks who tossed around the word "retarded" quite casually until the regional center gave me the choice of giving Leelo that label, or the shinier "Autism" one. SK said she was using humor, but IMHO she was actually describing her fear that those pejorative labels would affect her kids the way they actually *have* affected ours. Not to dismiss her terror about her child's emergency brain surgery.

    Re: the second half and labels, I agree though I don't believe I actually addressed that topic. FYI, Mental Retardation has never been used as a label on any of my son's IEPs, and my impression was that the term is outdated and being phased out for its lack of specificity. Instead we get LOTS of check boxes: Mod/Severe Autism, Behavioral Issues, Social Delays, Language Delays, Fine and Gross Motor Skills Issues, etc.

  4. Anonymous6:03 AM

    i wish i could have been there. sounds wonderful.

    i think language is powerful and it's extremely important for us to think carefully about what we write for all to read. i also think honesty and exposing our humanity, our quirks and our weaknesses is valuable. it's a fine line to walk sometimes.

  5. A lot to digest indeed, a very interesting read.

  6. Hi! It was great to talk with you, although briefly, after the dinner. I keep thinking about how you said that Stephanie Klein was a "tourist" and how we live in this town (I will probably quote you on that in a post, b/c I am sort of a tourist myself, although a frequent visitor, I do straddle both typical and special needs worlds).

    I thought what she meant was more like what gwendomama thought. That in the moment she thought "OMG my kid is going to be retarded" which seemed like a fair thing to express. That initial fear and strong emotion. Some other person in the same situation might be relieved to know they were not the only one to feel that way.

    But I realized I misunderstood and she was saying something more equivalent to your example of calling your brother an asshole.

    That I do not condone, b/c your brother, a grown-up, is much different than a child. And once I found out about her large readership, I felt it was irresponsible for her not to consider the impact she might have with her word choice.

  7. Well, as much as it would be lovely if all regional centers and school districts gave options for labels.

    BUT, and perhaps you don't know this, IF your child is undiagnosed and you wish for him to attend school, the MR label WILL be used. it just will. And people will be all jealous of YOU because your child has the shinier and more acceptable label of autism.

    I'm just sayin, and it's not very well publicized....this is the reality for many of us and I lived it.

    And, let me also toss in this little stat: Approximately 1/3 of all children with special needs will remain undiagnosed in their lives. That's a whole lot of mommies and daddies getting handed and dealing with an MR label.

    And...you can try to not be my friend anymore but I will not let you. I am tenacious.

  8. @gwendomama: Show me yer stats!

    We need to work to remove the stigma of the MR tag. A not insignificant battle, and one about which I'd like to hear more thoughts.

    I wrote sev. yrs ago about a particularly insensitive doctor telling me to deal with the fact that Leelo was likely MR. I was astounded by how many parents contacted me after that post, both publicly and privately, revealing that their kid had been given the same "diagnosis." But, again, they don't use it, not nec. because of stigma, but because it doesn't get their kids any services. Citing specific areas of developmental delay gets their kids services. Hence my list. These are not just kids on the spectrum.

    The fact that I got to choose my son's label doesn't change the reality of what he and we deal with.

    We obviously need to discuss this over beer, in person.

  9. Anonymous2:17 PM

    Well I'm still working to eliminate "retarded" from my casual vocabulary. I say it without thinking out of a lifetime of habit and go "ERRRK".

    Same with "lame". Sounds different to me these days.

    I also grew up with people who used "gay" in the same way and I stopped saying that when I was a teenager. So it's sad to admit that I didn't eliminate other lazy and harmful pejoratives then too.

  10. Anonymous7:57 PM

    As I said in the panel, and on my blog, and as I'll add here, just because someone's blog is well read doesn't mean she needs to be politically correct and shoulder some kind of burden or expectations of others and stop being honest. I have, always will, and do write as if no one will ever read the things I write, despite knowing otherwise. The moment I pause to consider what other might think or feel is the moment I stop being authentic.

    I do think it's an interesting topic, for sure, as I've both heard, and felt, both sides of the argument. But judgmental phrases like, "You shouldn't write such things given your readership" don't belong in the discussion. At the end of the day, we're all of us on the same side.

  11. @kyra. Fine line. Yes. I fall off the line a lot. Sometimes I think my tag line should be "...and I will always say the wrong thing."

    @lori I owe Stephanie an apology re: the "tourist" comment I made to you. I thought she was worried that her kid would have special needs but didn't; turns out he does. My bad.

    @Stephanie Klein, I disagree; you are a role model whether you think of yourself as one or not. But I also suspect that if we had this discussion IRL we would have a much more layered take on each other's perspectives, and would end up at a bar trading war stories.

    Longer panel. We needed a longer panel. You and Jennifer GG needed to talk more. I wonder what would have happened. I wonder what still could.

  12. I think as a parent of kids with special needs (hate that term) it is important to connect to the community. I am frustrated about how hard that can be to do in the blogging world.

    The person who did the 45 second spiel on her blog, complete with URL annoyed me. Then to find out she was "famous" in her own right, well it explained a lot.

    Many of us who asked questions purposely kept our URL out of the conversation, because it wasn't our forum, it belonged to the panel, and we were trying to be respectful.

    I wish the panel could have been longer, or we all could have sat down to lunch or something. It is hard to find special needs bloggers to connect with.

    I started a blog called http://autismsucksrocks.blogspot.com to meet the needs of the autism community. I was meeting mothers who felt alone in the autism journey and this blog is for anyone who wants to write, to connect us together. Anyone who wants to rant/write/reflect simply visits the blog and emails from the sidebar. I send an invitation and that's it.

    Thanks for a great panel. Next year, I would like to see it longer, or maybe a breakout session so the parents can network. Maybe even split according to the areas we deal with. Just a thought..


  13. Honestly, I don't think it has anything to do with how big her audience is. While she may elect to see this as humor that defuses her frustration, my own feeling is that parents who say these kinds of things are having trouble accepting the disability.

    Also, while she may say that no one else can love her kid the way she does, that doesn't mean her choices are therefore flawless. No one could possibly love my kids the way I do (no one can possibly love any kid the way I love mine, I secretly think), but that doesn't mean I make great parenting decisions every time.

    I probably count as one of those supposedly PC fanatics because I take care not to use language to insult people. Yeah, there are people who've taken ownership of the N-word, or of saying "crippled" instead of disabled. And it's protected speech, and you can say any damn thing you want on these interwebs. But I'm having trouble seeing "retard" used as an insult as part of the grand tradition promulgated by Lenny Bruce and George Carlin: they weren't trying to demystify slurs. And if I'm trying to promote intelligent discourse and make the world a more accepting place for my kid, I'm not going to use the word "retard," nor am I going to make "short bus" jokes. Plenty of people who don't love children with disabilities make those jokes already; I don't need to give them permission or comfort by making them myself.

    Sorry to ramble at such length. I always find the anti-PC complaints incredibly irritating.

  14. You panel was absolutely one of my favorites of the conference this year -- I don't think (actually I KNOW!!) my liveblog did it justice, I was kind of distracted by the awesome dialogue and didn't get everything out through my fingers that came through my heart :)

    All of your panelists were fierce and brilliant and loving -- it was a touching session and hopefully one that a lot of parents in the room took a lot away from.

    Growing up with a seriously physically disabled brother (who of course I am still devoted to, but no longer live with at my parents house) I completely appreciated and identified with almost everything said on the panel. There isn't a day that goes by that I hear my parents facing another wall of uncertainty, not a night that goes by where I am preoccupied with some sort of _____ (medical, insurance, education) concern for my family.

    What a crazy, beautiful and sometimes shockingly scary journey we are on. Thanks for being there for me along the way, even though we've never actually met and I am a newbie reader to your Blog :) I feel the love and the connection already. It's a great feeling.

    Love to you, your family and all of your readers.

  15. Anonymous3:52 PM

    Shannon, it was my great pleasure to meet you. All that you say about me is doubly true of you; I can't say it enough...

    And thank you for chronicling this experience; my brain is just not in it right now. I hope to get some thoughts down later in the week.


Respectful disagreement encouraged.