tag:blogger.com,1999:blog-5563550.post2829188701334104260..comments2024-02-02T03:32:36.204-07:00Comments on SQUIDALICIOUS: Blogging About Our Children With Special Needs: Real RecapUnknownnoreply@blogger.comBlogger15125tag:blogger.com,1999:blog-5563550.post-59586116573728151672008-07-25T15:52:00.000-07:002008-07-25T15:52:00.000-07:00Shannon, it was my great pleasure to meet you. Al...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...<BR/><BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-4394597860619346492008-07-25T10:09:00.000-07:002008-07-25T10:09:00.000-07:00You panel was absolutely one of my favorites of th...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 :)<BR/><BR/>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. <BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>Love to you, your family and all of your readers.happykatiehttps://www.blogger.com/profile/11197853619146693384noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-33919032192231818632008-07-24T13:51:00.000-07:002008-07-24T13:51:00.000-07:00Honestly, I don't think it has anything to do with...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. <BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>Sorry to ramble at such length. I always find the anti-PC complaints incredibly irritating.emilyhttps://www.blogger.com/profile/11297777521281861126noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-7542372967950278842008-07-23T12:23:00.000-07:002008-07-23T12:23:00.000-07:00I think as a parent of kids with special needs (ha...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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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.<BR/><BR/>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..<BR/><BR/>T.Tina@ SendChocolateNowhttps://www.blogger.com/profile/04756286418593037399noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-24108393799307584552008-07-22T21:50:00.000-07:002008-07-22T21:50:00.000-07:00@kyra. Fine line. Yes. I fall off the line a lot. ...@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."<BR/><BR/>@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. <BR/><BR/>@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.<BR/><BR/>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.Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-74186237473492053592008-07-22T19:57:00.000-07:002008-07-22T19:57:00.000-07:00As I said in the panel, and on my blog, and as I'l...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. <BR/><BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-52325904624986098632008-07-22T14:17:00.000-07:002008-07-22T14:17:00.000-07:00Well I'm still working to eliminate "retarded" fr...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". <BR/><BR/>Same with "lame". Sounds different to me these days.<BR/><BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-4099940236422181342008-07-22T11:02:00.000-07:002008-07-22T11:02:00.000-07:00@gwendomama: Show me yer stats! We need to work to...@gwendomama: Show me yer stats! <BR/><BR/>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.<BR/><BR/>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. <BR/><BR/>The fact that I got to choose my son's label doesn't change the reality of what he and we deal with. <BR/><BR/>We obviously need to discuss this over beer, in person.Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-17956211755438149142008-07-22T10:45:00.000-07:002008-07-22T10:45:00.000-07:00Well, as much as it would be lovely if all regiona...Well, as much as it would be lovely if all regional centers and school districts gave options for labels.<BR/><BR/>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.<BR/><BR/>I'm just sayin, and it's not very well publicized....this is the reality for many of us and I lived it.<BR/><BR/>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.<BR/><BR/>And...you can try to not be my friend anymore but I will not let you. I am tenacious.gwendomamahttps://www.blogger.com/profile/08439664476465264089noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-15382662410737359782008-07-22T08:51:00.000-07:002008-07-22T08:51:00.000-07:00Hi! It was great to talk with you, although brief...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). <BR/><BR/>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.<BR/><BR/>But I realized I misunderstood and she was saying something more equivalent to your example of calling your brother an asshole.<BR/><BR/>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.Lori at Spinning Yellowhttps://www.blogger.com/profile/09820406823337728514noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-91946311166232874812008-07-22T08:06:00.000-07:002008-07-22T08:06:00.000-07:00A lot to digest indeed, a very interesting read.Ch...A lot to digest indeed, a very interesting read.<BR/>CheersMaddyhttps://www.blogger.com/profile/05828186178060722812noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-36311998186118676132008-07-22T06:03:00.000-07:002008-07-22T06:03:00.000-07:00i wish i could have been there. sounds wonderful. ...i wish i could have been there. sounds wonderful. <BR/><BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5563550.post-66517588286290743392008-07-22T00:30:00.000-07:002008-07-22T00:30:00.000-07:00@Califmom, so glad you were there at the panel, ev...@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.<BR/><BR/>@gwendomama, I cannot believe you are disagreeing with me. We are no longer friends. AS IF.<BR/><BR/>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.<BR/><BR/>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.Shannon Des Roches Rosahttps://www.blogger.com/profile/18057806553670980068noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-59891106287022206212008-07-21T23:21:00.000-07:002008-07-21T23:21:00.000-07:00It was my favorite panel as well. I wanted to say...It was my favorite panel as well. I wanted to say much but it felt an implausible situation.<BR/><BR/>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.<BR/>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.<BR/>I also absolutely agree that perhaps she may want to consider her impact on the wide readership she appears to share.<BR/>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.<BR/>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.<BR/><BR/><BR/>That should be my next post. I am so lazy it probably will be.gwendomamahttps://www.blogger.com/profile/08439664476465264089noreply@blogger.comtag:blogger.com,1999:blog-5563550.post-31761163392649565782008-07-21T17:52:00.000-07:002008-07-21T17:52:00.000-07:00Your panel was a favorite of mine from the blogher...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!califmomhttps://www.blogger.com/profile/10221199345482393180noreply@blogger.com