tag:blogger.com,1999:blog-17259588138575794652024-03-05T21:32:22.948-08:00Tiny Grace Notes (Ask an Autistic)Hi, I'm Ibby. Like Dear Abby with an Eye. Sometimes I answer questions, and sometimes I question answers.Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.comBlogger62125tag:blogger.com,1999:blog-1725958813857579465.post-20910021613069071002015-04-23T12:36:00.001-07:002015-04-23T12:36:28.331-07:00Zoom Magazine Spring Issue is Here!Hi everyone,<br />
<br />
Just found out they did another issue of Zoom Magazine. It is still awesome. <a href="http://www.joomag.com/magazine/mag/0212842001427167663?feature=archive" target="_blank">Check it out here.</a><br />
<br />
Love, <br />IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com7tag:blogger.com,1999:blog-1725958813857579465.post-90759386255054134162014-10-13T07:31:00.004-07:002014-10-13T07:38:27.228-07:00ZOOM Autism Magazine!Dear Readers,<br />
<br />
Today I am delighted to be able to share with you the launch of a new magazine that I believe will change the face of autism magazines.<br />
<br />
Zoom Autism Magazine Fall 2014 comes out today, featuring articles from M. Kelter, Cynthia Kim and Jess Wilson among other fine voices. The editors have so far more than lived up to the magazine's promising subtitle of "autism through many lenses" by creating a beautifully produced document inclusive of a kaleidoscopic range of perspectives. This is a magnificent accomplishment.<br />
<br />
I have never met the excellent editors Sharon Fuentes, Sharon Cummings, and Jodi Murphy, nor have I met many of the voices in the inaugural issue of Zoom, but I want to: to me, all of this says that Zoom is poised to be a forum wherein community can truly come together for fellowship and education.<br />
<br />
And here it is: the link to <a href="http://joom.ag/9tTb" target="_blank">Zoom Autism Magazine</a>! <br />
<br />
Love, <br />IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com11tag:blogger.com,1999:blog-1725958813857579465.post-60043066990677349252014-05-14T06:19:00.001-07:002014-08-15T15:04:37.605-07:00You Are Not AloneDear Readers,<br />
<br />
This summer I will be able to get back to regularly scheduled blogging.<br />
<br />
Meanwhile, I have been able only to answer emergency private messages. <br />
<br />
Something struck me about a majority of my answers in these things, and I wanted to say something about it here, because I can write it quickly and give it to the world, even if I am having various difficulties at the moment. It is this: one of the most important things I can ever say to anyone is that you are not alone, and finding community changed my life.<br />
<br />
I want to give you these resources for parents, and also disabled people (largely Autistic, in the case of these resources, because of the audience for this blog) because in them you can find a wealth of like-minded parents and also other Autistic and other disabled adults who are the kind of people who want to reach out to parents in fellowship and share experience, strength and hope.<br />
<br />
First, PACLA, which stands for Parenting Autistic Children with Love and Acceptance. This is a Facebook Community group in which you can put up a question and specify if you want it to be answered by only Autistic people for an insider experiential view, or the community at large for the kind of interactional experience or systems understanding or group support that knowing people who have the same things in their lives can bring. From what I see of the people who write to me, most people would love this group and I always send people there privately.<br />
<br />
Here, to see what PACLA stands for, is a link to the inaugural magazine they put out: <a href="http://www.calameo.com/read/003164484af94d91e10b5" target="_blank">PACLA Magazine, First Issue. </a>I love this magazine. The editors are parents of Autistic kids and Autistic themselves! It is an honor to be part of it. The word 'magazine' doesn't even come anywhere near doing justice to the awesome, and these two claim it is their first time. The only reason I believe them is because I believe them, not because of the evidence. :)<br />
<br />
Like what you see? Here is a link to the Facebook Group for PACLA <a href="https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance" target="_blank">RIGHT HERE.</a> One of the people who started it, Alyssa Hillary, is a fabulous young Autistic activist scholar, a good friend of mine in person. Many parents and autistics are involved, too, in addition to the ones who started it, and the movement is growing. <br />
<br />
Next, look at the archives of this blogging collective in which I sometimes participate, and so do many others. It is called We Are Like Your Child <a href="http://wearelikeyourchild.blogspot.com/" target="_blank">and can be found online HERE.</a>. The point of this blog is that we talk about difficult issues within, and how we create workarounds for these things, to make things doable notwithstanding. The disabled people who write here are all people who, like me, care about Autistic and other disabled children and their whole families. All of us are reaching out for a better world. This is another place to find people who will make you notice you are never really alone. They are part of my personal lifeline. May they (we) be the same for you and yours.<br />
<br />
Thanks so much for your patience and I will see you in June!<br />
<br />
Love, <br />
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com11tag:blogger.com,1999:blog-1725958813857579465.post-79091790901300092712014-04-02T10:55:00.002-07:002014-04-02T10:57:36.972-07:00Today Is World Autism Awareness DayToday is World Autism Awareness Day.<br />
<br />
A couple of days before this day, I was at University of Michigan, giving a talk called <a href="http://www.lsa.umich.edu/english/events/eventDetail.asp?ID=2138">Autistic Activism in an Age of the Blues.</a><br />
<br />
If you click on the name of the talk, above, you can see my description of it that the Department of English Language and Literature put forth for people to use in order to decide if they wanted to come. The basic idea was to explain the background, or rhetorical genealogy, of lighting it up blue, starting with the onset of puzzle piece as a shorthand way to represent our people.<br />
<br />
None of it has much to do with our actual people, or anything real about us. <br />
<br />
The turnout was first of all so many people I was surprised! And second of all--this part is not so surprising because I am getting used to paying more attention to real life than to media representation--full of lovely people. To hear the ad campaigns and the news and the researchers that get funded by the right kind of corporations tell it, everyone thinks I'm a tragic burden from fearsville, pityland.<br />
<br />
In real life, I go around in the world keeping meeting a diffuse divergent kaleidoscopic spectrum of the wide world of wonderful.<br />
<br />
Rock on, real life. Especially Michiganders.<br />
<br />
One of the many Rockin' People is the emerging technologies librarian Patricia F. Anderson of University of Michigan, and I'm mentioning her in particular (hi there :) ) because she made this wonderful thing, a Storify, where you can read the things I was saying at the talk that she and others picked up and Live Tweeted by writing them quickly on Twitter right when I said them. Multi-tasking Heroics! AND THEN! She put links to the real things we were talking about, like Tone It Down Taupe, so you can easily look it up.<br />
<br />
Also when you are on there on her Storify page you can see other talks she went to and did this. It is fun.<br />
<br />
Here's that link now, in case you want to see more details about what we talked about: <a href="https://storify.com/pfanderson/autistic-activism-in-an-age-of-the-blues">The Awesome Storify Narration of the Michigan Talk</a>.<br />
<br />
So the lovely people and I talked about all sorts of things, like neuroqueering, and being a mother, and our own families, and school, and subversive ways Autistics deal with stigma, and how all the ways of being neurodivergent are not that different from one another...and so much more.<br />
<br />
Take that, Stigma Awareness. I'll be aware of Acceptance, Appreciation and Awesomeness instead.<br />
<br />
Love, <br />
Ib<br />
<br />Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com9tag:blogger.com,1999:blog-1725958813857579465.post-19130071230050176022014-04-01T08:13:00.003-07:002014-04-01T08:13:48.071-07:00Candlelight Vigil TonightToday is a day of remembrance, a <a href="https://www.facebook.com/events/593656577387389/">Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering</a>. If you click on the link, you can join us in the virtual vigil group on Facebook. Please do.<br />
<br />
We come together today to mourn those who are gone from us. They cannot be brought back, but they will never be forgotten.<br />
<br />
While the issue is complex, I know it is something many more fear, whose loved ones are not gone, but might become gone; and if this is you, or someone else you know, I invite you to consider reading a<a href="http://tinygracenotes.blogspot.com/2013/06/wandering-please-read-and-spread-widely.html"> post I wrote on the topic last June.</a> It may have no application, or it might.<br />
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My heart goes out to the families and friends of those we have lost.<br />
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<a href="http://cdn.memegenerator.net/instances/500x/47971057.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://cdn.memegenerator.net/instances/500x/47971057.jpg" height="285" width="400" /></a></div>
<blockquote class="tr_bq">
[Pic of a candle in cupped hands, in the dark. Words: Loss leaves a heartache no one can heal; love leaves a memory no one can steal.]</blockquote>
Love,<br />
Ib Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com4tag:blogger.com,1999:blog-1725958813857579465.post-2885936029350578052014-03-19T12:14:00.000-07:002014-03-19T12:14:08.589-07:00What is Autism?What is Autism?<br />
<br />
<a href="http://neurocosmopolitanism.com/what-is-autism/">Click here for a short, reliable, definitive description.</a><br />
<br />
Nick Walker wrote that, and I'll be glad forever.<br />
<br />
Thanks, Nick Walker!<br />
<br />
And thanks to all of you who click on it! <br />
<br />
Love,<br />
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com3tag:blogger.com,1999:blog-1725958813857579465.post-51419164464563621062014-03-11T13:12:00.003-07:002014-03-27T14:36:26.105-07:00Stop Combating MeCongress is getting ready to reauthorize the Combating Autism Act, and I hope they don't. I'd rather have them write a real thing that does what people meant for this one to do when they accidentally voted it in, back in 2005.<br />
<br />
I'm tired of politicians and fake charities tricking everyone.<br />
<br />
This act says it helps us and our families.<br />
<br />
But if you ask my mother, she will not say preventing me from being born would have helped her. My father is glad I was born, too. I think my brother and sister are also pretty happy about this thing of me existing instead of being never-born. Don't get my wife started on this topic, unless you want to find out what an irate Scot looks like.<br />
<br />
However, the vast majority of research money for "Combating Autism" under this act is ear-marked for prevention of us. Preventing families doesn't really help families, when you think about it.<br />
<br />
If I had not been born, my children would not have been born.<br />
<br />
Autistic Self Advocacy Network reports:<br />
<blockquote class="tr_bq">
Of the $217 million NIH spends on autism research, only 1.5% goes
towards the needs of adults and 2.4% towards improving services. We can
do better. Will you help by signing our petition telling Congress to
reform CAA and to stop combating people on the autism spectrum and
families? You can find it <a href="http://action.autisticadvocacy.org/p/dia/action3/common/public/?action_KEY=10412">HERE. (Please click and sign!)</a></blockquote>
Some people think "Combating Autism" is the wrong name for this act, because they say it is helping us instead of fighting us. But I think it is being pretty honest about what it is. <br />
<br />
It is fighting against us instead of trying to help us. I can respect the honesty. But I would prefer respect and real help for real people. I prefer being treated as a real person. <br />
<br />
Please, readers, will you sign the petition and ask them to stop combating me and people like me?<br />
<br />
Love,<br />
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com12tag:blogger.com,1999:blog-1725958813857579465.post-61821492225923578462014-03-06T11:29:00.003-08:002014-08-22T12:57:13.251-07:00I Am A Mother (Part 2)Checking in... the ABA project was a giant undertaking for someone who has such a hard time writing! Thank you <i>so much</i> for your patience!!<br />
<br />
Here is a thought that came to me today, this morning, as I stepped on a Cheerio, and laughed.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMSLm_P6NKeHmwlFfo1Kf5gYlxlYw5UV7Rknfgil2TVvR_z0ZSy5Exurqmo8x6hJGIPz5TmhtupqefKlNSmsez5pgrQLAPd2t0vsitVKRPTIO43FwzkR24ep06WzalD93XiloqSW_31CE/s1600/flying-cheerios2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMSLm_P6NKeHmwlFfo1Kf5gYlxlYw5UV7Rknfgil2TVvR_z0ZSy5Exurqmo8x6hJGIPz5TmhtupqefKlNSmsez5pgrQLAPd2t0vsitVKRPTIO43FwzkR24ep06WzalD93XiloqSW_31CE/s1600/flying-cheerios2.jpg" height="400" width="300" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
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<blockquote class="tr_bq">
[Image: Cheerios strewn over a hardwood floor. Not unlike what you might find in our kitchen on any given morning! Oh who am I kidding. I don't know what time of day it is, and neither do the ever-present Cheerios.]</blockquote>
<i>I laughed. </i>And then I thought: whoa. This is me laughing about Food Being Where It Does Not Go.<br />
<br />
Before the boys were born, I "knew for a fact" this was not going to be able to happen.<br />
<br />
Cheerios and crumbs underfoot, under my feet, going crunch, ack? It means I have a house full of cutefellas. I shrug and laugh. This is something I could never have dreamed possible.<br />
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Also it's something I think a lot of people will understand.<br />
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I am a mother.<br />
<br />
Love, <br />
Ib<br />
<br />Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com5tag:blogger.com,1999:blog-1725958813857579465.post-86327437155578034232014-03-03T06:52:00.001-08:002014-03-03T07:45:25.458-08:00Accidental Bully: I don't want to be that personThere is a person out there whose experience was me bullying him, but it seems like he more feels like my non-autistic friends should have been stopping me and has never come to me about it. I wish he would, because I want to tell him I am sorry for hurting him.<br />
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Let me tell you, at the time I felt like I was passionately defending my friend. I felt like this guy was being mean to her. I felt right about my self. But read further for what I have learned about this.<br />
<br />
And here's another thing. I am not trying to tone police other people. This is all kinds of wrong.<br />
<br />
But right now I am talking about my own self.<br />
<br />
Intention is not magic. It does not matter if I think I was right in my opinions. What matters to me is that I hurt somebody. I got so passionate that I forgot to be COMpassionate.<br />
<br />
Some people might know this guy I'm talking about, but not know that the bully he talks about is Autistic. It is. It's me. Please show him this, show him I'm sorry I hurt him, and the reason I haven't told him myself is because I don't know how to contact aliases. I'm not very computer savvy.<br />
<br />
But I totally get it now that me feeling right about what I am saying does NOT give me the right to go around hurting other people. It does not.<br />
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So some moms asked me to join this flash blog against cyber bullying. And it broke my heart, because really? People's moms cyber bullying each other? What is this world coming to?<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
And then I remembered I accidentally bullied someone once.<br />
<br />
Aspie Kid, I'm sorry I hurt you. I one hundred percent did not mean to, but I get that what I meant is not the same thing as what actually happened to you. This is important.<br />
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Everyone else in the world, please join me in deciding once and for all not to be that person.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiJwkOhAgtKj6PFVj2SsJhrOrtUSqEJNf3JP5LzuIU9Xpps_TEV1ACsUwqapRjMrwehu_czIR_mUO1WgBsPPs6vSwwox64ToJyPhyphenhyphenvMeDLyPhObQcoMeCvhuWRUfJ2-jaSYaswHyw4Cg/s1600/cyber+bullying1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPiJwkOhAgtKj6PFVj2SsJhrOrtUSqEJNf3JP5LzuIU9Xpps_TEV1ACsUwqapRjMrwehu_czIR_mUO1WgBsPPs6vSwwox64ToJyPhyphenhyphenvMeDLyPhObQcoMeCvhuWRUfJ2-jaSYaswHyw4Cg/s1600/cyber+bullying1.jpg" height="320" width="320" /></a></div>
<blockquote class="tr_bq">
[Image description: Logo for FlashBlog, which says Don't Ignore Cyber
Bullying, Mon. March 3rd 2014. It's a claymation looking guy trying to
step through one of those red negation signs as in No Smoking or so
forth, and he might succeed, as the slash on it is covering his chest
like a sash, and he has momentum, and one of his feet is through the red
circle already along with both his hands and the top of his head.]</blockquote>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com11tag:blogger.com,1999:blog-1725958813857579465.post-7280401623864490432014-02-19T07:43:00.001-08:002014-02-19T22:49:37.995-08:00On Being HumanLike many commuters, I listen to the radio a lot. Something hit me about the way they introduce new songs. The disc jockeys talk about the fact that a new song is coming up, and if we know the artist, they'll mention another song by this artist to jog our memories. If it's an artist they think we may never have heard of, they might say something by way of introduction, something to locate the new music somewhere in our minds, prepare us in a positive way.<br />
<div>
<br /></div>
<div>
Most of the songs on the radio are in heavy rotation, and they phase them in and out like this, with an occasional familiar oldie. These people know what they are doing. Why would they bother doing all this?</div>
<div>
<br /></div>
<div>
And I thought of this thing that happened right around the time in the middle of the eighties when I was getting myself kicked in and out of high school. It was an enormously big deal, and folks my age will remember, and I'll tell you what happened in case you are younger.</div>
<div>
<br /></div>
<div>
Coca-Cola tried to change its flavor to become "new and improved" and this was treated like a National Disaster. I am serious, people were really flipping out about this, and it was all over the news, for some time. It was a major topic of conversation. There was high emotion. Even Bill Cosby was somehow involved, but I don't remember his exact role, just that it was A Thing, because of his standing in the community.</div>
<div>
<br /></div>
<div>
At this time in my life, I believed I was not a human being, not the same thing as a person. But I was just now having this reverie about how everyone else reacts to change...</div>
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<br /></div>
<div>
And here is another thing: people often see the sensory accommodations in my office and ask if I can help them brainstorm getting the whole workplace to be more like my office. </div>
<div>
<br /></div>
<div>
People often read my writing on things like rushing and social and emotional confusion or distress and say they can really relate to it even though they are not autistic.</div>
<div>
<br /></div>
<div>
People often hear ideas of what can help kids like me handle executive functioning difficulties in the classroom, and declare, "I am going to try that for myself!"</div>
<div>
<br /></div>
<div>
Instead of not being human, what if I am very human, so outrageously human that it sometimes rises to the level of impairment? What if it is really that the things I cannot function without are things that would make everyone function better? My sine qua non might be every one else's sine qua shouldn't have to.</div>
<div>
<br /></div>
<div>
Love, </div>
<div>
Ib</div>
<div>
<br /></div>
<div>
<br /></div>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com5tag:blogger.com,1999:blog-1725958813857579465.post-64365542030017415002014-02-13T12:53:00.002-08:002014-02-13T13:06:53.413-08:00Love, Not FearThis is my entry for the Love Not Fear Flashblog. In case you are clicking from TGN directly, here is a link to the flashblog site itself, where you can read lots of others, and get yourself very happy: <a href="http://lovenotfearflashblog.wordpress.com/about/">HERE IS THAT LINK</a>. What I love about this is that it's organized by a loving group of people, some of whose kids are Autistic; and some of the people are Autistic themselves, and some are not, and some of them have no kids. Just a bunch of love bringing us together.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7uN6ACoyTAReHOHEOINUqk00gyvyO4tr38gGGJwBY4xKwrjrgJc-cfhI8DX7wG3X5EngcCOs4p7QshmutIyWIgdmZRHehrzFkFLxW4X-stPHBrNdZwlMqpEf3xFq-DJJuuRX2K9WtIYE/s1600/flashblog-entry.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7uN6ACoyTAReHOHEOINUqk00gyvyO4tr38gGGJwBY4xKwrjrgJc-cfhI8DX7wG3X5EngcCOs4p7QshmutIyWIgdmZRHehrzFkFLxW4X-stPHBrNdZwlMqpEf3xFq-DJJuuRX2K9WtIYE/s1600/flashblog-entry.jpg" height="320" width="320" /></a></div>
<blockquote class="tr_bq">
[Image: Flashblog logo of a pink and white heart made out of lacy smaller hearts with #PosAutive in it. It says, Flashblog: Love Not Fear, presented by Boycott Autism Speaks, and cites a deadline, for which I am late, of course.]</blockquote>
Lately I have been having a lot of trouble writing, so I will tell a story of Love winning out over Fear, in pictures. <br />
<br />
One day a bit ago, we were having an action where we were supposed to take a picture of ourselves with a sign saying something like "I am not afraid to say I am Autistic." This was because something was making the fearmongers smear our name again, as usual, nothing really different. And I support these actions, but I have this thing of being rather precise. So, I couldn't lie. I do say it freely: I am Autistic; however, I don't say it without trepidation, especially when one of these media scarymovie frenzies is going on. This is the picture I made:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-9jiLLJ7r-r7S6MlQyjeVKEsAKHZH40rf4sgLdlh2mrQEgamPUmEF03zJFap238frKQPrJDqQC7iFo_D_Wmj00tG5w0XS74_JWfyi_uDonHroJbaiTmj0V3zXcDL3DgJIj_Px5oV4X0/s1600/AutisticAndTired.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj-9jiLLJ7r-r7S6MlQyjeVKEsAKHZH40rf4sgLdlh2mrQEgamPUmEF03zJFap238frKQPrJDqQC7iFo_D_Wmj00tG5w0XS74_JWfyi_uDonHroJbaiTmj0V3zXcDL3DgJIj_Px5oV4X0/s1600/AutisticAndTired.jpg" height="230" width="320" /></a></div>
<blockquote class="tr_bq">
[Here is a webcam picture of me sitting on the bed, holding a hand-lettered sign. The sign says: I AM AUTISTIC AND TIRED OF FEAR.]</blockquote>
The boys were napping and Layenie came in and sat next to me on the bed, having finished what she had been doing really quick. She saw this thing I made and gave me a big, much-needed hug. Then she looked at her Facebook and saw a call for participation in another action that our people who love us were taking in support, having to do with This Is Autism. Layenie immediately made this:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9lFfJQgeomOlxuSR03grLeDqbF8VAkjObtRBoh4MJJ5c-UA-1XBhLwWkeFuQGdxSDLo1eHGUK0IwooNgptYyuZAFFKO-u_KljL3E58qAUqiZUMXo54jhInGUp_MOP970Wbhp5LzCc5-g/s1600/ThisIsAutism.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9lFfJQgeomOlxuSR03grLeDqbF8VAkjObtRBoh4MJJ5c-UA-1XBhLwWkeFuQGdxSDLo1eHGUK0IwooNgptYyuZAFFKO-u_KljL3E58qAUqiZUMXo54jhInGUp_MOP970Wbhp5LzCc5-g/s1600/ThisIsAutism.JPG" height="640" width="480" /> </a></div>
<blockquote class="tr_bq">
[Layenie's pic here is of me with the twin boys, age about one, in the transition from baby to toddler. She has inscribed the picture with these words: "This is Ibby. Ibby is a professor, a mother extraordinaire, and a wonderful spouse. She is light, laughter, and love. She is books, trains, twirly things, and cracking up about the word underwear. This is autism, and oh boy, am I glad."]</blockquote>
This made my eyes leak. It also made my eyes leak to look at it again just now, and remember, and do the image description.<br />
<br />
In a cage match between love and fear, love wins.<br />
<br />
Love wins. <br />
<br />
Fear can come back as much as it wants. For me, in my experience of my self, I know it will.<br />
<br />
But I also know love wins.<br />
<br />
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</div>
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</div>
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</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkCgW0iQByV7YUSbxRw5Gy50PG0IuZv2XtKSMogTNSlOrJF4CmMXI1fJehwV6-S9RgNiybgUUNA5Nr2lsO-78nl4AKOSsu09noLQVQ9NKB45Ghi1qU1XdTEX9_9eIML-mOe_9dvb2O6tg/s1600/Bd9FUQtCUAAkS8K.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkCgW0iQByV7YUSbxRw5Gy50PG0IuZv2XtKSMogTNSlOrJF4CmMXI1fJehwV6-S9RgNiybgUUNA5Nr2lsO-78nl4AKOSsu09noLQVQ9NKB45Ghi1qU1XdTEX9_9eIML-mOe_9dvb2O6tg/s1600/Bd9FUQtCUAAkS8K.jpg" height="319" width="320" /></a></div>
<blockquote class="tr_bq">
[This is a meme that says "Caring and respect are better than pity and fear. People are better than Autism Speaks."]</blockquote>
Love is better than anything.<br />
<br />
Love,<br />
Ib <br />
<br />
<br />Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com7tag:blogger.com,1999:blog-1725958813857579465.post-21930638919862801322014-02-11T10:15:00.003-08:002014-02-11T10:16:33.588-08:00On What A Bad Idea Rushing Is...I am still working on the stuff about ABA, which takes forever, and it is taking even longer than I meant for it to take, because I am trying to rush myself.<br />
<br />
Which reminded me, I forgot to link to this article I wrote for We Are Like Your Child, about what a bad idea rushing is.<br />
<br />
<a href="http://wearelikeyourchild.blogspot.com/2013/12/please-dont-rush-me.html">Here's the link: Please Don't Rush Me, on We Are Like Your Child.</a><br />
<br />
Thanks for hanging in there with me, and much love to you all. Nobody other than my own self is trying to rush me in this instance: You all win! xx<br />
<br />
Love,<br />
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com0tag:blogger.com,1999:blog-1725958813857579465.post-76475488954456527032014-01-27T16:40:00.001-08:002014-01-27T16:40:32.088-08:00True Answers About ABA (Part 1)
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<i style="mso-bidi-font-style: normal;">Hi Ibby! </i><br />
<br />
<i style="mso-bidi-font-style: normal;">I am a Parent to a 3 year old
Autistic girl. She is receiving OT, Speech, Music therapy and ABA. I have felt
it was the ABA where the progress we've seen has been made. However, as someone
who is a staunch advocate for my daughter and her Autistic peers, I want to
always be doing what is best and least stressful for her.</i><br />
<i style="mso-bidi-font-style: normal;"><br />
I have seen quite a bit of controversy in the Autism community by receivers of
ABA, that express having PTSD from the experience and are now staunch opponents
of ABA. But what they describe going through and what many of our kids do, seem
vastly different. Is there any way to clarify this issue, about just what ABA
is and isn't and how, in layman's terms a Parent can avoid and identify it?</i><br />
<i style="mso-bidi-font-style: normal;"><br />
This is a topic that causes a great deal of angst, distrust and Parents feeling
they are being labeled as abusers if they are using ABA...which I guess, may
really not be? Any help at resolving this would be great!</i><br />
<i style="mso-bidi-font-style: normal;">Thank you!<br />
<br />
Sandy</i><br />
<br />
<br />
Dear Sandy,<br />
<br />
Thank you so much for asking.<br />
<br />
This question is so very important, and as you say, the things people say
and do about it can be very confusing, and from where I stand, I have been able
to collect more than the usual amount of information about why they have to do
and say the confusing things that conflict with each other, and was wondering
if I would be able to help.<br />
<br />
I hope I can help.<br />
<br />
I will try to keep this a little bit shorter than a big giant book by
linking to other related things I wrote before, and breaking it down into parts
so you can look at the pieces of the question you are interested in at any
given time.<br />
<br />
Here are the topics I will touch on:<br />
<br />
<b style="mso-bidi-font-weight: normal;">Why are so many Autistic people who
have been through ABA against it, and/or experiencing PTSD?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">In that case, why would anyone defend
it? What is going on there?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">What do you mean by the notion that a
type of treatment can be morally wrong?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">But I have seen it work well, and you
just gave what looked to me a whole lot like an example. Can you explain what is going on here, when it works
well?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">Why would that still be called ABA
then? Why don’t they call it something totally else?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">Can you see a solution to this thorny
issue? What would it be like?</b><br />
<br />
<b style="mso-bidi-font-weight: normal;">Meanwhile, before that solution
happens, what are practical actions I, as a parent, can take in real life? I
want to do what is right for my kids, and I also want to be a good person in
the world.</b><br />
<br />
I’m writing back now because I have had your letter for a longish time, I
think, and I wanted you to know this is what I’m working on, and I think it’s
really important, and I want to get it right. Please write back if my outline
above doesn’t hit on all cylinders, but so far I have answers in my head for
all the things above that I just need to translate into readable words, so that’s
what I’m going for.<br />
<br />
Love,<br />
Ib<br />
<br />
<br />
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<br /></div>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com7tag:blogger.com,1999:blog-1725958813857579465.post-723078936294199422013-12-17T07:16:00.001-08:002014-07-11T07:00:40.224-07:00Sisters of the Road: What a Charity Should Be<style>
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The word ‘charity’ comes from the Latin translation (Caritas)
of the Biblical Greek word for one of the kinds of love, Agape. This is the
kind of love which does not seek anything in return, a kind of love that moves
you to action on behalf of other people’s benefit because you really care about
how they are faring. It is not an emotional love that needs things in return,
and it certainly is not a greed for your own fame or fortune. Real charitable
love, or agape, would never, ever seek to tear down, demean, dehumanize or in
any other way harm the people it purported to help. Think about love and think
about what I am saying and you might wonder how recipients of really decent
charities feel about those charities.<span style="mso-spacerun: yes;">
</span>Boycotty? No.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
You may have heard a lot about Autism Speaks lately, because
of the boycott, because we are so weary of being misused by them, because it is
the opposite of a real charity; it is the opposite of what I am talking about
when I talk about charitable love. It makes me want to tell you about a place I
used to go which was quite exactly what I am talking about, and was such a
shining example I can use it to explain the positive aspects in graphic detail.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Allow me to introduce Sisters of the Road Café, in Portland,
Oregon.<span style="mso-spacerun: yes;"> </span>I was a recipient of their
charity long ago and when my fortunes improved I became more of a deliberate
volunteer. My dignity and status were the same in both events.<span style="mso-spacerun: yes;"> </span>This is important because it is the
perfect example of what I mean.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Sisters of the Road does nothing about us without us. They
feed homeless people and hook them up with resources and community. And the
‘they’ was ‘us’ for me both when I was homeless and when I was not. You could
get a really good, filling, delicious, satisfying meal there for $1.25 and a cup
of coffee for a quarter.<span style="mso-spacerun: yes;"> </span>That was
way less than other places. If you did not have the money you could sign up to
help wash dishes or bus tables—or even be wait staff if you were that brave
(not me) –for just one 15 minute shift casually to pay for that meal.<span style="mso-spacerun: yes;"> </span>Also you could do another 15 to pay for
a friend. Now that is dignity. The place itself was modest but nice to be
around and nobody was all “move along.” For me it was a serious Godsend as I was
not able to panhandle because too shy for that direct of social contact with
strangers so a lot of times if I had a sore throat or something the singing in
the streets thing didn’t happen, but I could get fed and treat a friend to
lunch no matter what, in a place where we were welcome. </div>
<div class="MsoNormal">
<br /></div>
<blockquote class="tr_bq">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://www.toquemag.com/wp-content/uploads/2013/03/Sisters-of-the-Road_Toque.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.toquemag.com/wp-content/uploads/2013/03/Sisters-of-the-Road_Toque.jpg" height="222" width="400" /></a></div>
</blockquote>
<blockquote class="tr_bq">
<div class="MsoNormal">
[Image: photo from inside Sisters of the Road nowadays. The cafe has nice wooden chairs now and the lovely old wooden siding still. Two apparently African American men but they could be islanders or African of course, also they could be transmen, I don't know them personally, anyway they are in the foreground and the one who has my favorite red beans and rice in front of him is laughing uproariously with his head thrown back. The one with him is pointing at him with a big smile as if to say "gotcha." The one who is totally laughing has a powerchair which you can see the controls. Other diners of a variety of skin tones, gender presentations, ways of looking, etc. are throughout and the place and people just still seem as welcoming and friendly as I remember.]</div>
</blockquote>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Which brings me to this too: It was very rare back then to
be able to get vegetarian food, but they always had it in addition to hearty meat dishes. They also had this kick
ass Puerto Rican salsa, because one of the steady volunteers or workers was
from there and knew how to do it. (People who really worked there for a wage or
were steady volunteers did not act better than anyone or better than each other.
You could pick them out only because they worked for longer than 15-30 minute
stretches.) Nobody sneered at vegetarianism and said, “Beggars can’t be
choosers.” I am sorry that so many religiously based organizations at that time
(late eighties; I wouldn’t be shocked if it’s the same now) had personnel who
liked saying that demeaning bromide when I shyly asked if there was peanut
butter at all, but I wasn’t just being picky. My vegetarianism is long-standing
and stems from deeply held personal beliefs.<span style="mso-spacerun: yes;"> </span>And even if I were just being picky, why rub it in that
someone’s life is hard if yours is a bit better and you are allegedly trying to
help?</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Genny Nelson was the boss of Sisters of the Road at that
time and also later when I was more on my feet and came back around (she is
retired now). She was there a lot and rolled up her sleeves and pitched in.
She had been one of the inventors of it and when inventing it what she and her
partner had done is asked around and found out what would be useful and good
for actual people and what would not. I do not know if she had heard the slogan
“Nothing About Us Without Us” but she sure did live by it and also create an
organization that was founded on it, as well as the true meaning of Caritas,
which is the root word for “charity,” which, as I said, is the Latin
translation for Agape, rendered well in English as unselfish love.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So Sisters of the Road is earmarked for homeless people,
many of whom are Autistic and otherwise neurodivergent, partially because a lot of the big alleged charities for Autistic folks do not provide much real life help at all, so good
people who want to help others are accidentally throwing their money to the greed
machine while the people they wanted to help are left floundering.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The straight up Autism charities that exemplify Nothing
About Us Without Us are actually run by Autistics. These are Autism Women’s
Network (AWN) and Autistic Self Advocacy Network (ASAN).<span style="mso-spacerun: yes;"> </span>Autism Women’s Network is working on getting together
some more on-the-ground initiatives, to get money and resources back to the right
people who need it.<span style="mso-spacerun: yes;"> </span>Autistic Self Advocacy Network has
created a sea change in the way Autistics are able to see ourselves and come
together in action, as well as carve a place for ourselves at policy tables,
even at the very highest levels. This has literally changed the world for me and many people I know. I think
ASAN is also looking into a grants program. Both of these groups increase our
dignity and well-being every day without wasting good people’s money lining
greedy pocketbooks or financing harmful ad campaigns or research into
preventing us from being born. Both of these groups are bona fide what a
charity should be, and growing and doing more every moment of every day with
your help. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Back to Sisters of the Road: Sisters of the Road, I salute
you. The xxx symbol someone anonymously chalked onto the sidewalk to denote good food and hospitality in hobo code was apt and true and I will love you forever. Readers, if
you give them a little bit of money too, there is no way you won’t be helping
some Autistics, because so many of us are pushed through the cracks into
poverty and homelessness at some point in our lives.<br />
<br />
Here is their website: <a href="http://sistersoftheroad.org/">http://sistersoftheroad.org/</a> . Love!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Thank you for listening.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Love, Ib</div>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com3tag:blogger.com,1999:blog-1725958813857579465.post-90941418437679276942013-11-12T12:22:00.001-08:002013-11-12T12:22:27.913-08:00Autism Speaks: These Mothers Want To Say<a href="http://adiaryofamom.wordpress.com/2013/11/12/no-more-a-letter-to-suzanne-wright/#comment-46311">A mother who has worked with Autism Speaks and considered some of them her friends felt betrayed and sickened by the way they talk about her daughter. They ignored her. She declined to go to the summit. Please read what she has to say, here.</a><br />
<br />
<a href="http://www.blog.mamasturnnow.com/2013/11/12/dear-ms-wright-autism-speaks-and-any-others-out-there-who-may-read-this/">This other thing happened to her friend, one of her readers.</a><br />
<br />
<a href="http://theautismwars.blogspot.com/2013/11/a-mouse-that-roars-standing-in-defiance.html">And here is my friend Kerima.</a><br />
<br />
<br />
As for me, I think I have said enough for now. I'm hoarse.<br />
<br />
Love,<br />
Ib <br />
<br />
<br />Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com0tag:blogger.com,1999:blog-1725958813857579465.post-58235503527109324832013-11-01T06:52:00.001-07:002013-11-01T11:28:41.749-07:00Autistics Speaking Day: I Speak To ThankToday is Autistics Speaking Day, which has a rich and sort of unfortunate history. I haven't got long to write, but what I have to say is big and cannot be unsaid on this day.<br>
<br>
<div class="separator" style="clear: both; text-align: left;">
The rich unfortunate history has to do with people going About Us Without Us, and when some of our own tried to say something about it, these 'do-gooders' seemed to express, to put it charitably, irritation. What they did not seem to do was listen, at all, even though they said
they were doing whatever they were doing for our own good. We are doing
this for your own good lalala hushup you ingrates we can't hear you... <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgV7TQVoPF07_NfwcsDXu8CFgR6Hh079ALB_Ag5YGKYCp4xvKsFrPOi913urZ6sSjwmLA3FEDCsGlvmpCdKTlqjyClC62r2d1BwCAc7mbJCJ3-CwXIB4svYCyN-OeEI0NV1ZzcaSsPldgM/s1600/ASDay+button+2013+copy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> </a></div>
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But I know many people who not only listen but go so far as to seek us out and amplify, and they are basically in three communities, and I am hoping to introduce many of them to one another at TASH if I can, or get started here, and on the other blog NeuroQueer, which others of them are more likely to read, and all of you, see how I switch pronouns here, but I do it on purpose for a change: all of you are beautiful, and I thank you.<br>
<br>
You who listen and amplify are some of you parents whose children also are Autistic, and you wanted to find us, and you were not so busy trying to find ways we could not possibly be like your child that we should be invisible forever: so you sought and found us, and you are our beloved friends. <br>
<br>
You who listen and amplify are some of you scholars, scholars with other disabilities, queer scholars and scholars of color, community scholar activists who did not just brilliantly theorize amongst yourselves about how we were not at the table: but you decided to get it started and do something about it, and you are our beloved friends.<br>
<br>
You who listen and amplify are some of you people of practice, people whose life work is devoted quite literally to making sure the voices of some of the most vulnerable and invisible among us are able to be found and witnessed, and sometimes you are hardly seen, and sometimes you are mistreated and disrespected by bigots who call themselves greater and more acceptable things, but they are not. You are greater, and the greatest: you put yourself on the line for us and our voices, and you are our beloved friends.<br>
<br>
When I first decided to write about this I was going to name your names, and I hope you are not sad that I did not, because for me the reason is so happy that tears of joy spill softly from my eyes now. In this small time of being myself in the open, and in community, I have met so many of you. The movement of Disability Justice even only when considered in the Autistic Community has so many true real Allies who are heart and brain and hands, and you who are reading this know you are my beloved friends and know who you are, that my babies would wake up and get hungry if I tried to list all your beautiful selves separately.<br>
<br>
And anyway, we are not separate. We are joyously together.<br>
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Thank you, my friends, for caring that we speak.<br>
<br>
Love,<br>
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com5tag:blogger.com,1999:blog-1725958813857579465.post-60011822276054631812013-10-01T10:04:00.004-07:002013-10-01T10:48:43.158-07:00Workarounds Are Our FriendSome of the excellent answers on the last blog post about crossing the street, which I'll repost <a href="http://www.tinygracenotes.com/2013/09/crossing-street-with-neither-guard-nor.html" target="_blank">HERE </a>in case you didn't get a chance to read the comment thread, led me to write this other article about workarounds.<br />
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Everyone learns differently, and when you're teaching things to people, remembering to presume competence, it sometimes comes to the attention of both of you that there is some kind of real block against that particular type of thing.<br />
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A word about presuming competence.<br />
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To presume competence is to give someone the benefit of the doubt instead of just saying, Oh, Alas, This Person Is Obviously Incompetent In Every Way And Practically Not Even Here. Because your person is more than likely there, and can hear you do this. I talk about that some length <a href="http://www.tinygracenotes.com/2012/10/labels-also-intense-teaching-is-realer.html" target="_blank">HERE</a> toward the end of this article. But on the other side, it also doesn't mean assuming anyone is a magic superhero who is terrific at everything. Nobody is like that. Autistic people such as myself often have particular areas which are super extra hard for us, and we cannot get past a wall in them. That is what some of the commentators in that last post were talking about, and what I can talk about in this post, regarding time.<br />
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And it brings us to Workarounds. Workarounds are our friends. Workarounds are what you come up with to get around, over, or some other kind of way past that wall instead of bashing your head against it.<br />
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I'll talk about myself. Time is a thing I do not really get properly, despite the fact that I can appear to "tell time" although I am not very rapid at it. I can read to you off an analog or digital watch. I also always wear one because the alarms are helpful for me. But I do not feel time elapsing in the proper way, and I am sure this is the case because I have interviewed many people about the real way time is supposed to feel. From my perspective, time seems so arbitrary as to be fake, like a trick. When I wrote <a href="http://www.tinygracenotes.com/2012/11/autism-and-time-agnosia.html" target="_blank">THIS</a>, I was doing what my grandmother called "kidding on the square," which is kind of joking, but kind of telling the truth.<br />
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It is not as if I was never taught how to tell time properly. I was. As a matter of fact I have such a deep and vast knowledge of time-telling pedagogy that I can teach teachers how to teach time-telling very effectively to a wide range of children and this is a huge part of my job. It is just that there is a block in my brain about it for some reason. I have other friends who are opposite of that, who can tell time better than clocks. If you had a clock and Bridget who blogs <a href="http://itsbridgetsword.wordpress.com/" target="_blank"> HERE</a> saying different things, you should fix your clock.<br />
<br />
So now I come to the Workaround. Whatever it is that you or your kid just can't seem to get past, be it crossing the street without a light because it feels like mindreading cars, or having a feel for time, there are ways around it. Come up with plans and you will be golden.<br />
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For me, I get that commercials are shorter than movies, so I have some sense of not saying "I'll be back in a minute" if I am going to do something that is more like going to a movie than the time span of a commercial. And a ball game is longer than a movie, so. Another part of my workaround system is technology. I have a lot of gadgets helping me, alarms, talking computer, etc. People help me too. Since I am a professor and people look to me to be in charge of when break-times and things are, I openly tell them it is OK to remind me, and I tell them why, but I also use great software for the iPod like the <a href="https://itunes.apple.com/us/app/autism-timer/id409539780?mt=8" target="_blank">Visual Timer</a> that is quick and easy to customize and set and doesn't make noise. In airports, I alert the flight personnel that I am there so I don't space out too much and miss the flight. They are very kind about this.<br />
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Another thing I do is try to be early rather than late, but to be honest time is still a large source of anxiety since it is a thing that I am relatively clueless about. When I get the chance to be interdependent about it instead of trying to rely on all my own self, I am much more relaxed, and that's OK today. It wasn't always. I wish I had learned this younger. This is different from learned helplessness. I am not helpless; I am getting help for myself in real ways that will really work, and in turn I am helpful to others in other ways that play to my various strengths. I just no longer have to injure myself out of false pride, because I now understand that I don't have to try and act "perfect" all the time, which just breaks me down and makes everything worse.<br />
<br />
So if you are a parent or a teacher, you might be able to help younger kids who are Autistic find out workarounds for themselves based on checking out what they are good at and what they are interested in and tying that into a way to get success working around the problems of what is not happening for them, which in my case is time and in some other people's case it might be recognizing faces or what not. Or crossing the street. You could decide to really always cross at lights, or when there are no cars. You could live in a neighborhood with either very busy streets (to ensure lights) or non busy streets (to reduce likelihood of cars) if that was your lifestyle. Things can be worked around.<br />
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If you are an Autistic self who is trying to find workarounds for your self you can ask trusted friends to help you make a list of things you are good at, in case the topic is stressing you out. They might be able to see connections that will cause you to come up with excellent workarounds together that would not have been thought of alone.<br />
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Some friends and I have a whole website called <a href="http://wearelikeyourchild.blogspot.com/2013/08/socio-sensory-distress-is-harsh-but.html" target="_blank">We Are Like Your Child</a> which is largely devoted to workarounds, but also partially just to showing that we who have pretty insurmountable sounding problems are willing to go out on a limb to talk about them now because we get the message that the successes we have fought for make our lives seem unattainable to some people, on behalf of their children, who are having a hard time now. But we were like that, and we wanted people to know. The link takes you to an essay of mine because I know I wrote an essay specifically about workarounds for the social and sensory issues surrounding why it is so hard to go to a party. I know if you click around there on that site there are other great workarounds mentioned like ways to organize.<br />
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Everybody, I want to thank you. This has been great. I hope more people will ask questions like this and I also hope more and more people will share their own experiences in the comments because our experiences are different and similar and all very telling. Experience is the richest place to find questions and answers and it also makes our community strong.<br />
<br />
Love,<br />
Ib<br />
<br />
O & PS So this is my invitation to put your favorite workaround into the comments below!! :DElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com22tag:blogger.com,1999:blog-1725958813857579465.post-13174155116163316172013-09-23T09:59:00.001-07:002013-09-23T09:59:11.157-07:00Crossing The Street With Neither Guard Nor Signal<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<i><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">Dear Ibby, </span></span></i></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<i><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">So
I have what should be a really simple question to answer, and
yet...maybe not. </span></span></i></h5>
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<i><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">It's about crossing a busy crosswalk without adult
assistance. My 12-year-old son just started middle school; to get him
there, I drop him off at a busy corner with a crosswalk. Only difference
from elementary school is that there's no crossing guard. </span></span></i></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<i><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">This morning,
he was the only one in the crosswalk, and with my "cross safely"
ringing in his ears he...stopped. Waited for the cars there to go. They
waited for him. The drivers started waving him across. But he, of
course, was not looking at the drivers. He was just waiting. Honking
started. I finally rolled down the window and said, "OK, go ahead, safe
to cross!" And he, without looking first to be sure nothing had changed
while I said that, darted across. Something about the whole thing
worried me. </span></span></i></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<i><span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">My question then: How do I teach him to look INSIDE the cars
to see if the driver sees him, if the driver is waving him on, if the
driver is NOT seeing him and is about to drive forward, etc.? This is
going to come up when he starts to drive, too. Is there a simple way to
address this tendency to just think, "the rule is that I can go when
there are no cars at the crosswalk" or something like that, and not to
adjust depending on the situation? Most mornings, he won't the be only
one crossing. But when he is...I need him to be safe, and I can't think
of a single simple "rule" he can use; the situation is always different,
and I won't always be situated so I can direct him from my own car.
Ideas? And THANK YOU.</span></span></i></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}"><i>Lori </i></span></span></h5>
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<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">[Visual image of an official DOT crosswalk sign, person in silhouette crossing street on yellow background]<i> </i></span></span></h5>
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<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">Dear Lori, </span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">This is a great and useful question that is the opposite of a simple question! You are right! Should be: isn't.</span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">So I wracked my brains trying to remember how I found out about looking inside of the car to see if they can see you and whether they are going to run over you about it, and could not do it by myself. So I called up the person who would have taught this information to me! (This is the key to good research skills, by the way. If you know who knows, it's as good as knowing it yourself.)</span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">My mom said it made total sense to not want to be embarrassing him by being the hand-holdy mother all draped over his business if there are other kids around, but when there are no other kids, this will work better with you not in the car, because he can follow your head with his head and hear your words up close. You narrate with him what to do, always using the same words, never changing it up. "Look left, look right, look left again. Are there any cars? Neither side? Safe to cross. A stopped car nearby? Look inside. Can the driver see you? How do you know? Smiling and waving and not going? OK to start. Now look back right. A stopped car? Can he see you?" Etc. In the car on the way there you can do this decision chart. He will know it in his head when he is with the other kids and you can hide and watch from your car to feel better, but he should get it pretty soon and get comfy. </span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">When my mom was telling me about the above I started remembering it, the rhythm of it. As a matter of fact my mom had to get off the phone pretty quick but I suspect she stealthily slipped a bunch of good manners information into these rhythmic safety algorithms. (As you are reading this, Mom, note that I gotcha.) Because I have a dim memory of this being around the time I learned the thank-you wave that I still to this day use while I myself am driving, or when I do have the pedestrian right of way on a crowded urban turn lane and the driver did smile and wave me through, but it is still nice to acknowledge not being run over.</span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">I am a very safe walker and driver now, and polite, and also very good with algorithms such as who goes where on a broken signal light. I am, astonishingly, not the one who gets confused in such situations.</span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">Neither will your son be. There is a bright side to all of this. :)</span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">(In other related news: Another
thing I have to remember to this day is how to act like I am trying to
cross the street instead of trying to randomly loiter in the general vicinity. This is another
issue I don't know if he has, but it might be a thing. Look purposeful about I Am Crossing The Street Just So You Know and the car drivers will be more likely to Take Notice.)</span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}"> </span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">Write back and let me know how it all goes?</span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">Love, Ib</span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}">O and PS: If this is not quick enough, remember that you can buy time by rousing the neighborhood and agitating for a traffic light. Let me know if this is something you want to do and I will put you in touch with some people who have done it and know exactly how to make it happen.</span></span></h5>
<h5 class="uiStreamMessage" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3,"tn":"K"}"><i> </i></span></span></h5>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com15tag:blogger.com,1999:blog-1725958813857579465.post-67366643839957235152013-09-06T08:34:00.001-07:002013-09-08T20:53:46.555-07:00Media Throws "Autism Parents" Under The Bus AgainAnother incredibly self involved person without a moral compass tried killing her kid. This time it didn't work, thank heaven, but members of the media as well as key "parent" bloggers are as usual taking the opportunity to present the grisly, unnatural and horrific acts as somehow logical, to further their complex and spiteful agenda.<br>
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They are callously using these troubled criminals, in other words, and calling them "typical parents" doing "understandable acts of desperation" at the expense of real parents everywhere. Don't fall for it, and don't stand for it. Speak out.</div>
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Thought experiment: You hear a news report that a promising young high school football player with a scholarship to Notre Dame after graduation was gunned down in cold blood by his mother. It comes out that she had called, even taken time off her minimum wage job so she could try in person, begged at least seven times for more food stamps because Jim's training schedule started making him so hungry she could no longer afford to feed him. They ignored her. She is quoted as saying she saw no way out but to kill him: Julie had known hunger, and vowed her boy never would.</div>
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Now. Are we going to be deluged with crap blaming the boy for being inconvenient, or will we be shown a lovely pic of him as a heroic young life cut short?</div>
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Will she be painted as society's victim, one of us? Or perhaps...someone who killed her own child: a child-killer. The very worst kind of criminal we can think of. She's poor and the kid was not disabled, so...</div>
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I'll stop with that. But you see why I'm so sick. Wrongness is happening on so many levels and not just to Autistics. They are doing this to our parents, and our whole civilization.</div>
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Please stand with us and say NO in any way you can think of, every chance you get.</div>
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Evil is NOT the typical response to being under resourced. We cannot allow this myth to take hold and dig deeper cultural roots.</div><div><br></div><div>In short: we need more resources and that is the truth. But most people would never kill an innocent kid, no matter how hard life is, and to say otherwise is a flat out lie.</div>
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Thanks for listening.</div>
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Love,</div>
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Ib</div>
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Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com8tag:blogger.com,1999:blog-1725958813857579465.post-53888124958336992982013-08-31T13:56:00.002-07:002013-08-31T15:45:48.827-07:00Letter From Devoted Phoenix, Part 3 (Important Note)Dear Readers,<br>
<br>
This morning a thing happened in an asynchronous online thread between two of my friends, and it was this: one of them liked my post answering Devoted Phoenix, <a href="http://www.tinygracenotes.com/2013/08/letter-from-devoted-phoenix-part-2-me.html" target="_blank">which you can click on here</a>, and said so a little enthusiastically maybe, but you know, supportive friend and all... The other friend, who is also super supportive, took this personally, what the first friend said, took it as a kind of indictment against those who do not or cannot exit stage left.<br>
<br>
Both of these people are people I've spent a good deal of time with in real life and seen them with their kids so I know they are *absolutely fabulous parents* as well as this: when I say they are my friends I do not mean "acquaintances." I'm using the term the opposite of loosely.<div>
<br>
So I cannot possibly let go the fact that my answer had in it the power to cause this kind of hurt due to the fact that I did not write part of it adequately.<br>
<br>
I must fix it. Important note:<br>
<br>
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[Photographic image here of a hand holding out an envelope stamped with a giant, red, official-looking seal of the word "IMPORTANT" in all capital letters with a red border. It is not letter-sized, but rather note-sized, the envelope.]</blockquote>
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Here are some things I absolutely did not mean under any circumstances. I did not mean to imply that all the problems that there are would be resolved by doing a geographic and exiting stage left, and by extension I super mega extra did not mean to imply that families for whom this is not an option or the best solution are doing a bad job in some way. I mean things very, very contextually; in that answer, I was talking about situations like the one being described in the original letter written by DP, <a href="http://www.tinygracenotes.com/2013/08/letter-from-devoted-phoenix-part-1.html" target="_blank">which is linked here.</a><br>
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In real life, it is difficult in many places to get transferred to another school, or granted the ability to homeschool (if you wanted to go for that) and it would be especially difficult if there were no evidence that the school setting itself was part of the problem, or the bulk of the problem. However, from the evidence in the letter I deduce it will be very easy for DP's family to show (even almost *prove*) that the social scene at this particular school is a Big Giant Issue if not the primary and immediate emergency in her daughter's life right now.<br>
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Also if any services are being used that are actually helpful, it is not easy to keep these services going in many states or districts while pursuing other placement options.<br>
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What I am very sorry about here is that it seems like I made exit stage left sound like: 1. the solution to everything, which I totally disagree with, because it's simply not true; and 2. it's just ever so easy, which was hurtful to my friend. The first is pretty embarrassing to me as a writer, but I'm extremely sorry about the second thing.<br>
<br>
I exited high school using a technique that is probably very traditional but that I do not recommend. I am going to say a little about it here to try to rectify the pain I caused and also I hope the book comes out soon wherein I have a chapter all about my schooling years, because it details this situation much better. The book comes out this Fall. I will let you know.<br>
<br>
So: the method that happened for me was extreme truancy because I could not bring myself to go in that place. I would get ready to try every day and I didn't put this in my chapter and I still don't know if my parents know this so it's a new piece of exclusive information for you, TGN readers. I always took the bus to the correct bus stop for that high school and then took to my heels, even if the places I would ultimately end up that day were several miles away. Always. I did try. But I could not, like I said, get myself in there. Although sometimes I sat in a tree on the grounds because I did love that tree, from which I could see a fountain. Anyway.<br>
<br>
I became expelled from that high school which is the horribly non-easy method my parents had to deal with, the news of my extreme/complete truancy hitting them out of nowhere as I had not been able to communicate my distress to them properly because I did not have the words.<br>
<br>
Then my parents fought very very hard to get me placed in an alternative school. This also was not easy for them. Any problems I might have had there would *not* have been solved by a geographic because it was a very good placement, so these problems were solved in *other* ways.<br>
<br>
I am sorry for the misunderstanding.<br>
<br>
Thank you for listening.<br>
<br>
Much love,<br>
Ib<br>
<br>
<br></div>Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com2tag:blogger.com,1999:blog-1725958813857579465.post-11099318831966060592013-08-28T15:45:00.001-07:002013-08-29T07:25:44.795-07:00Letter From Devoted Phoenix, Part 2 (Answer)Dear Devoted Phoenix,<br />
<br />
Here I am, back to answer this letter you posted, which I link to <a href="http://www.tinygracenotes.com/2013/08/letter-from-devoted-phoenix-part-1.html" target="_blank">here in case anyone missed it.</a><br />
<br />
My friends answered in the meantime, and I loved what they had to say. Sorry for the delay on my part. I couldn't say anything in the moment because I was overwhelmed with the remembrance of things past, of the time when it came to pass that I couldn't, <i>could not</i>, endure where I was at school for even a moment longer. It started to start happening at around your daughter's age. We tried some things, but the TOTAL ACK... well, while trying to make sure I could remember how to help avoid that, I had the big giant <i>I want my Mommy </i>in front of everyone.<br />
<br />
So glad my mother said what she said, and the relief I felt on hearing it when I finally got hold of her today--because it did not get fixed at quite that young an age for me, so I didn't remember what to say fixed it--was unbelievable. She talked to my dad about it and they remembered what really helped.<br />
<br />
Do a geographic. When the other kids have become being like that, nothing will stop them being how they are being and doing the doing of those ways. It has become the social milieu and it is not up to any one person to change a culture. So you can leave. Exit stage left.<br />
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<br />
[Here is a photo of an actual old tin theatre sign, which says Exit Stage Left, with an arrow pointing left, and the iconic Tragedy and Comedy masks appear to be hanging from the top corner.]<br />
<br />
The exit stage left, ahhhhhh. I think this changed my life.<br />
<br />
It can be another school, it can be homeschooling, this is not something I can say, but of this I am sure: one cannot live in a social situation in which one cannot live. Escape hatch!<br />
<br />
But this brings me to the second thing, and I do believe I can really say this to you because you seem like the kind of person who can understand and make it happen. When I said I couldn't say where to escape to? It's because I don't know your daughter, and she seems from your letter to be old enough to be the kind of person who would have something to say about that, and nothing about us without us, which you totally get, and that drew me to your letter. I hope you are in a location where she can find others to hang out with who are cooler, and she might have some ideas about where this is likely to be for her. Or, she might not. But get her out of that hellhole, because at least new people will be new and not have a toxic history together.<br />
<br />
One of the things that also felt really good to me as I started growing up, by the way, was political activism... we didn't have the Autistic Community back then because I am really super old, but I loved trying to subvert the dominant paradigm about other injustices going on.<br />
<br />
Do you think she would like to write to me and get in touch with some older Auts online maybe? Help create a website for kids her own age who are interested in what she cares about, to chat? Lordy, I wish we'd had the Internet.<br />
<br />
Thinking good thoughts for you. Write back and let me know how things are going?<br />
<br />
Love,<br />
IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com1tag:blogger.com,1999:blog-1725958813857579465.post-14527039057332240712013-08-19T10:05:00.000-07:002013-08-19T10:13:08.218-07:00Letter From Devoted Phoenix, Part 1 (Letter)Today I got this beautiful letter in the e-mail. The writer offered that I should "feel free to excerpt bits if I decide to respond," but the writing is so full of truth and the clarity of the murkiness that is in our lives...it seems to me the daughter in this letter is so very well understood by the writer, and so well understood also by me, myself; and I did not want to remove one word of this letter, because I also believe that the readers will understand the writer and the daughter, and may wish to answer. And I want to talk to my mother. So, readers, I offer you this letter, in its entirety, which contains important and thorny questions that are central to so many of our lives. Dear Devoted Phoenix, I thank you for writing, and will answer this also myself, in a column coming soon. Thanks everyone! Love, Ib<br />
<br />
Now here is that letter itself:<br />
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<br />
<i>Hi there,</i><br />
<div>
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3106">
<i>My
daughter is eleven and she was diagnosed with Asperger's this February. I
have a hard time being brief, but I'm going to try. We didn't consult
for help until she was clearly having an abysmal time at school with
other kids and literally believing she was an alien who wasn't "made"
for family and friends, kindness and respect, and wanted to die of
loneliness and the despair of not being able to do anything right or
alternately force her gregarious social self to become a loner who used
her isolation to protect herself from the whole business.</i></div>
<i>
</i><br />
<div id="yui_3_7_2_1_1376931273255_3105">
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3018">
<i>At
five, I sent my daughter to an alternative school with a child-led
pedagogy and a beautiful community-based learning environment. Lots of
opportunities for freedom and responsibility, leadership, creativity,
etc. I didn't know she was on the spectrum, but I did know she had a
strong personality and that she was likely to be singled out for it.
Part of my hope was that she would not be labelled and pathologized at
this school, but rather supported in developing her strengths and the
necessary skills to use her personal power to be a leader without being a
tyrant, etc. The school has done a beautiful job of focusing on her
strengths, but... I wish I'd had more information about her challenges
sooner.</i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div>
<i>Now, I have a child who thinks she is a freak, who
contemptuously rejects the forms that consideration for others takes, as
well as not quite grasping why these things are important (which, being
at *least* half-aspie myself, I understand) OR who hates herself for
not doing the things she knows she could be doing to make relationships
better and feeling deep shame and anxiety as a result. Sometimes it
feels like she apologizes for simply existing and being human with human
needs.</i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3104">
<i>I want my
daughter to be herself and be okay, I always have. I want to celebrate
her creativity, her caring for vulnerable beings, her beautiful voice,
her awareness of deep subtle things, her sensitivity, her earnest
efforts... and I want to see her less crippled by the anxiety and shame
of trying to navigate the NT social world and failing. She tries so very
hard, she does what seem to be the "right" things and still it doesn't
work. She doesn't trust any "help" to actually be helpful for her. And
my heart breaks because I remember my own struggles to grasp the
importance of manners and social graces, I remember how much it made me
feel like it was all about making myself small and not asking for
anything, not expressing my truth, my feelings, my needs, pushing them
so far away that I couldn't even identify them myself because otherwise
they would overwhelm me with their urgency and sabotage my efforts to
fit in, to be safe, to stay out of trouble. I was an adult before I made
any peace at all with these things... but I survived because I am
academically gifted and creative and my special interest is human
emotion and behaviour itself. My daughter hates academics, loves art,
and really doesn't care why people do what they do.</i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div>
<i>I have no idea how to help her. Part of me wants to
help her learn the NT social rules, not based on good or bad, but just
on the kinds of responses their presence or absence evokes in others
(myself included). I want to support her to be able to make her way in
the NT world... and, I also want to be sensitive to her needs for
integrity, for the dignity of her own being. I want to let her be
different and celebrate that - but at 11 she sees nothing to celebrate
in being a freak as she puts it, and none of the strengths I see in her
matter one iota to her in the face of her difficulties. She hates her
Aspergers, hates herself by extension, and experiences the entire world
as mean and full of personal insult and sabotage... Trying to show her
that there are things she can do to help make things better with other
people just translates in her heart to the belief that I'm saying it's
her fault they are mean to her. In those moments, she believes that I
think she deserves it. Which I most certainly do not. I don't know how
to help, and I don't think she's ready to try to understand why other
kids respond to her like this. It just hurts too much.</i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3103">
<i>It's so hard
when we are told (and I know because of who I am) that she can learn to
fit in and be the "normal" she so desperately wants to be... and yet
trying is such a complex proposition for her, so full of earnestness and
anxiety and franticness and shame. And I know that, if she is anything
like me, the world will eventually see her as normal, expect her to *be*
normal and know all the things instinctively that "normal" people know
and do... but inside she will never quite feel she belongs, when she is
tired and stressed, she will still transgress the rules and be seen as
socially inept, long-term friends will still tire of her innate
processing of the world through her own experience, her use of sharing
to connect instead of listening, and eventually object loudly or leave.
And she doesn't have the self-containment that I did as a a child and
now. I'm not my mother and I haven't forced my daughter into a box of
stifling social appropriateness or taught her that intense emotional
distress gets punished or ignored. Maybe that was a disservice, as her
peers certainly have different ideas about those things... </i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div>
<i>She is seen as normal, but spoiled and childish,
defiant and impulsive. Sometimes, I wonder if it's better to be seen as
one who is not "normal", who is atypical, who has a reason or an excuse
to be different, but then that often translates to sympathy for a broken
thing, and she is not broken, though she feels that way. Compassion is
in short supply somewhere lost between unrealistic expectations and
dismissive pity. I don't which is better/worse.</i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3094">
<i>It's taken me
years to get over myself in my reaction to her hostile and
"disrespectful" behaviours to understand her rage as protective, to
learn to reach beneath it to touch her vulnerability, to discover her
distress, to name it so she knows she is seen, to hold her in it. Except
now, she has learned to reach her vulnerability herself and own it, and
she has no skills to manage her anxiety, her shame, her hurt in a world
that doesn't see her, doesn't respond in ways she experiences as
caring. And she doesn't want to learn the skills she is aware that kids
her age already know: it's humiliating for her. So she gets angry and
resentful again. </i></div>
<i>
</i><br />
<div>
<i><br /></i></div>
<div>
<i>I try to get help, but I, too, am reaching a point
where I don't find the help helpful. I am torn between wanting to help
her find the motivation to learn the things that could help alleviate
some of her social distress (because when she wants to do something, she
is very capable) and wanting her to have supportive help that doesn't
try to change her, to cultivate places that can accept and help contain
her emotional intensity. She gets too much information about how
everything that matters about her is wrong and in need of reshaping. She
feels like a baby because she can't do those things. And, I'm also a
human being trying to manage my own sensory overwhelm, my own needs for
consideration, just like the rest of the world she has to deal with. I
can't always accommodate, and I'm not convinced that being accommodated
all the time would serve her, either.</i></div>
<i>
</i><br />
<div id="yui_3_7_2_1_1376931273255_3102">
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3095">
<i>It's
very confusing and heartbreaking and frustrating. I suppose my question
is, with a child who has the potential to "fit in" with the NT world,
and who very much wants to but tangles herself in knots trying... do I
pursue social skills training and help her shift how she presents
herself (which she doesn't really want to do) or do I encourage her to
be her Aspie self when on an every day basis, even at home, her
self-expression generally gets lost in reactions to her delivery? I want
people to be able to see all my daughters wonderful gifts... I want her
to be able to see them... but right now, they are so obscured by this
pressure (inside of her and out) to get it right. And she's smart enough
to have figured out that most kids just would never accept her if she
continue to approach them without fundamental changes in how she behaves
that really go deep into who she is or isn't. She rebells or tries to
mortgage her soul to pull it off and neither gets anyone anywhere.</i></div>
<i>
</i><br />
<div id="yui_3_7_2_1_1376931273255_3096">
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3097">
<i>So
much for brevity. Thanks for sitting with me long enough to read all of
this. Feel free to excerpt bits if you decide to respond.</i></div>
<div id="yui_3_7_2_1_1376931273255_3098">
<i><br /></i></div>
<div id="yui_3_7_2_1_1376931273255_3099">
<i>Devoted Phoenix</i></div>
Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com5tag:blogger.com,1999:blog-1725958813857579465.post-56334548472800326092013-08-15T09:01:00.000-07:002013-08-15T13:20:10.119-07:00Got Your 66 is my favorite number.<br />
<br />
Also, there is another meaning.<br />
<br />
Ground rules alert: this is not a forum to talk about how we feel about war. This is about the lived lives of people, of the veterans, and the fact that many people who go to war acquire disabilities, and thus become disabled, and we who are disabled already know how to be disabled, and we who are family members of disabled people already know how to be family members of disabled people.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
"Got your 6" is a military translation for the idiom "Got your back" which came about because of WWI fighter pilots' picturing of the airspace round their planes as being like a clock, with the nose being 12 (so the tail is 6). Here, watch this PSA:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/P3j0ej1JX6w?feature=player_embedded' frameborder='0'></iframe></div>
<br />
Now, they don't go into the disabled part of it, but it's there, and we all know it. People lose limbs and get PTSD, and we know about that stuff. This is one of the giant reasons why we need to have celebrities and organized campaigns to make sure veterans can get jobs and they and their families can be taken care of when they get back.<br />
<br />
They don't know how to be disabled already, or necessarily what is the best way to be supportive family members. We do. We can help. We can have their 6.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
There's one more thing about this. Goodwill is one of the sponsors, so there's a good side effect of our supporting this particular campaign. Because disabled veterans have not been disabled the whole time, they will not likely have been conditioned to take kindly to the practice of sub-minimum wage payment that goes on in Goodwill shops in states where that is still an available legal loophole. So there will be fresh new sets of eyes on that problem: angry eyes, and many. This bodes well for change.<br />
<br />
And I'll say one last thing: we may sometimes unfortunately tend to think of life from a scarcity model, like this: if veterans get jobs, there'll me none left for me, or for my child. That's not really useful, or really real. Campaigns that create jobs boost the economy, and, by definition, create jobs. Also, campaigns that call attention to societal needs call attention to societal needs, which causes an aura effect causing attention to be pulled toward adjacent and related needs.<br />
<br />
The ADA was not signed because of the people in wheelchairs who were relatively socially powerless....<br />
<br />
If we think generously, we think better. We build coalitions. We look for commonalities and in our social usefulness we live lives of greater fulness. Let's be there for the veterans and their families because we have knowledge and skills that may be of service in untapped ways. And in so doing we may make new friends, friends whose knowledge and skills may further the good of everyone. And these new friends may find themselves serving their country alongside us in exciting, novel ways they could never have imagined.<br />
<br />
Love,<br />
Ib<br />
<br />
O & P.S. Here is the website to check it out: <a href="http://www.gotyour6.org/" target="_blank">http://www.gotyour6.org/</a> . I had forgotten to link to it and Andrew Dell'Antonio who is extremely awesome gave me the reminder! xxooElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com4tag:blogger.com,1999:blog-1725958813857579465.post-44055731572984579352013-08-02T13:42:00.000-07:002013-08-02T13:42:11.651-07:00We Are Like Your Child: Socio-Sensory DistressDear Readers:<br />
<br />
<a href="http://wearelikeyourchild.blogspot.com/2013/08/socio-sensory-distress-is-harsh-but.html" target="_blank">This link</a> will take you to an article I just wrote on our collective blog, We Are Like Your Child, masterminded by my friend the longtime activist Kassiane A. Sibley so that a wide variety of adult Autistics and friends with other disabilities could really go into detail about some of what is hard, and what we do to work around it, in order to help others get ideas from our experiences. Thanks very much for all your support. <br />
<br />
Love, IbElizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com0tag:blogger.com,1999:blog-1725958813857579465.post-49874502161558839972013-07-31T09:41:00.001-07:002014-04-28T07:20:56.644-07:00Dealing With Family's Clueless Questions<style>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">Dear Ibby,</span></i></div>
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<br /></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">First of all, I'd like to say I am a big fan of your work and
you first came to my attention when the Thinking Person's Guide to Autism
published your essay "A Person is Not a Function." </span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">I have an almost 4 year-old little boy on the spectrum. He was
officially diagnosed a little over a year ago. He has a consistent vocabulary
of about 8 to 10 words and seems to be really learning a lot at school and
enjoying himself. It's very clear he understands a lot of what is going on. We
have our bumpy days, (as does everybody), but overall life is very good.</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">I'm actually writing b/c I need advice for how to handle some
neurotypical people in our life. I feel like most family members (on both sides
of the family) are very fixated on the "talking thing.' I hear a lot of
"is he talking more?" "When will he start talking more?"
Every time I share one of his successes at school or home I hear "Does
this mean he'll talk more?"</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">I don't want to make it seem like I'm anti-talking or that I've
completely ruled it out for my son's future, but I've broadened my ideas of
communication so that I don't see lack of talking as lack of success. How can I
get our family on that same page? I feel like they still have a lot of pity and
fear feelings around disabilities/differences that they need to work through.</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">I've tried leading this conversation gently "You might like
this book" "You might like this documentary" "He might
never grow up to be a talker and if he doesn't that's okay." Nothing
really seems to sink in for long. They slip back into "talking is the
default way to communicate/be" very quickly.</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">They are all long distance and don't get to see the day to day
triumphs and progress. Do I give them more time to process because they are
more removed? Do I keep on the gentle path? They (usually) don't talk about
this stuff in front of my son, but every time they talk this way it hurts me
(even though I realize this is not about me) and leaves me with the feeling
they can't fully accept him b/c they are holding out for something
"better." Do I just flat out start telling them that this is hurtful?</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">I'm usually someone who tries to avoid confrontation, but I'm
starting to feel that it might have to be done.</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">You always seem to deal with everyone and their questions with
such wisdom and compassion. Any advice in this situation?</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">Thanks for everything you do,</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">Just call me</span></i></div>
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<i style="mso-bidi-font-style: normal;"><span style="color: #333333; font-family: Helvetica; font-size: 11.0pt; mso-bidi-font-family: "Lucida Grande";">"Dealing with Family Matters"</span></i></div>
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<span style="font-family: Helvetica;">Dear Dealing with Family
Matters, </span></div>
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<span style="font-family: Helvetica;">(This took me ages and
ages to answer, not least because I could fully answer one layer but not the
other, or not to my satisfaction. Now I have been to Syracuse and can answer
better along both axes. Thank you so much for your patience, DWFM!)</span></div>
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<span style="font-family: Helvetica;">Thank you so much for
writing, and for trusting me with this problem.<span style="mso-spacerun: yes;">
</span>I have been thinking about it for ages, and it is a very real problem.<span style="mso-spacerun: yes;"> </span>I will speak directly to you, and I also
believe you have many unseen friends out there experiencing almost exactly the
same thing, who will relate to you.<span style="mso-spacerun: yes;">
</span>Maybe they will answer this post and you can become friends.<span style="mso-spacerun: yes;"> </span>Support of people who know first-hand what
you’re talking about is a wonderful thing.<span style="mso-spacerun: yes;">
</span>I speak to you all, really.</span></div>
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<span style="font-family: Helvetica;">What I will do is speak
from my brain and experiences and observations and also from my heart, and
start with the adage my wise friend Souci taught me when I was a whelp: “Take
what you need, and leave the rest.”</span></div>
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<span style="font-family: Helvetica;">The first thing I want
to say is that I was flapping when your focus of sight was about how often they
mostly did not do this in front of your son, showing both that you are thinking
that if they did, he would notice and care (instead of being incompetent) and
also that you think his welfare is utmost, because you are an awesome parent.<span style="mso-spacerun: yes;"> </span>And you are trying to be gentle with your
family and give them the benefit of the doubt.<span style="mso-spacerun: yes;">
</span>That’s actually a really good thing too.<span style="mso-spacerun: yes;">
</span>I’ll say more.</span></div>
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<span style="font-family: Helvetica;">When you say it is not
about you, I want to say it does get to be about you, sometimes, because you
are a person and you are hurting.<span style="mso-spacerun: yes;"> </span>That
is reason enough, but there is more.<span style="mso-spacerun: yes;">
</span>So.<span style="mso-spacerun: yes;"> </span>This: you are clearly not the
kind of person that makes everything be all about you as a general
characteristic, which buys you more it-gets-to-be-about-you-for-a-change-now.<span style="mso-spacerun: yes;"> </span>For one thing, none of the text in your
letter was lengthy declarative proclamations on the topic of what a giving
giver you are, always giving, never a thought for yourself (a specific type of
language use which I have noticed in my travels seems almost invariably to be a
kind of code, a type of opposite-speak bafflingly concomitant with self-involved
action sequences).</span></div>
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<span style="font-family: Helvetica;">Sometimes people like
you who actually are giving people who think of others first need to hear a
logical reordering argument in order to believe that it is OK to defend their
own selves from hurt.<span style="mso-spacerun: yes;"> </span>I will use a quick
argument from analogy in the form of a potentially random sounding metaphor.<span style="mso-spacerun: yes;"> </span>I trust you will see what I am doing right
away, so I will keep it short and not belabor it.<span style="mso-spacerun: yes;"> </span>Here goes:</span></div>
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<span style="font-family: Helvetica;">When people hurt my
mother, especially relatives, I always notice (even though she is fabulous at
hiding it, according to the rest of the world) and feel it keenly, and am
greatly distressed.<span style="mso-spacerun: yes;"> </span>The less I can do
about it, the worse I feel.</span></div>
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<span style="font-family: Helvetica;">There.<span style="mso-spacerun: yes;"> </span>I believe we have incontrovertibly
established that it is OK for you to deal with the issue even though you are
the primary person being hurt by their words at this time.<span style="mso-spacerun: yes;"> :)</span></span></div>
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<span style="font-family: Helvetica;">(And I stopped writing
here for a long while, because I knew I could only really answer half the
question, and now I will continue…)</span></div>
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<span style="font-family: Helvetica;">There are two axes of
what to do. One is internal and one is external. The external I learned more
about at <a href="http://soe.syr.edu/centers_institutes/institute_communication_inclusion/Summer_Institute/default.aspx" target="_blank">Syracuse ICI Summer Institute</a> (where I think everyone should go) (and I don't think you have to wait 'til summer to check them out) and hence can now finish this post.</span></div>
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<span style="font-family: Helvetica;">Internally, I can only
hope this information helps you to gird your loins, and it is this. All the
people are brainwashed into believing that talking is the only kind of
communication that counts. This is particularly true in the relatively recent
times, when ABA and ABA derivative peddlers made sure everyone heard that they
and what they sell are the only “research-based” thing on the planet that could
ever help anyone have a life, and the only kind of life was a life of
yimmer-yammer, and it was patently impossible to learn to yimmer-yammer if one
did not do so prior to the age of five, at which time one turned into a
pumpkin, because one’s parents were
woefully-scientifically-ignorant-read-negligent, and you know, since it takes a
village, any parent allowed to be that ignorant in this the famous information
age must have really ignorant and callous friends and relations.</span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6_eWTF_yN9gQFpZGNJ8rd1uy-IMg9D7JC8U30bJab_d53YI4PrlIDCtJ40Sgbacdq3WJaIEVjc1WTbiky9T5BaFbhDPrMjU70rc6BciCeDAhsoDmOMOV2c6P5nuyRs3faJ7cSnfgo70Q/s1600/539946_529955587030447_765561935_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6_eWTF_yN9gQFpZGNJ8rd1uy-IMg9D7JC8U30bJab_d53YI4PrlIDCtJ40Sgbacdq3WJaIEVjc1WTbiky9T5BaFbhDPrMjU70rc6BciCeDAhsoDmOMOV2c6P5nuyRs3faJ7cSnfgo70Q/s400/539946_529955587030447_765561935_n.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tracy Thresher and Larry Bissonnette stand on either side of a giant green sign that reads: "Not being able to speak is not the same as not having anything to say - Rosemary Crossley."</td></tr>
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<span style="font-family: Helvetica;">A great deal of time and
money as well as academic and political power and savvy were spent trying to
make sure this would become engrained in our public imagination as “a well
known fact.”<span style="mso-spacerun: yes;"> </span>I think the reader will
recognize that all that stuff about ABA and the age of 5 and so forth doesn’t even sound funny or
woo.<span style="mso-spacerun: yes;"> </span>It sounds true, and fitting, kind
of like we ought to brush our teeth.</span></div>
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<span style="font-family: Helvetica;">It is not, in reality,
true in the same way that it is true we ought to brush our teeth. It is true in
a way much more analogous to the way in which it is true that we ought to own
an imitation paramilitary SUV in order to be more safe on the roads. (In other words, not true.)</span></div>
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<span style="font-family: Helvetica;">Your family more than
likely does not mean to hurt you when it parrots back to you advertising about
how those imitation paramilitary SUVs are really safer for your kids, because that little foreign econo-job
you are driving would squash like a bug they just know it. A lot of thought and
money went into making sure they would believe what they believe, or believe
they know what they believe they know. And also your little econo-job is much safer,
PS; you checked when you bought it. But that will never be allowed to be the
first few hits on their Google search, or Google goes under.</span></div>
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<span style="font-family: Helvetica;">What I think your family
actually means to do, most of the time, with this, is show caring. They are
saying something like this: I care, and I want to show that I care by showing
that I Googled stuff, because in my imagination you will notice that means I
was thinking of you. However, I did not think this through and realize that
because it is your life and the life of your own child, you probably have much
more in depth and relevant knowledge; and maybe a more fitting and useful concept of a way
for me to show caring would be to listen, or give you cake and tea.<span style="mso-spacerun: yes;"> </span>Tea!</span></div>
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<span style="font-family: Helvetica;">Now: before I get on to
the second part about their actual education, I want to talk about what to do
about this part, which is what to do about how they are hurting your feelings.</span></div>
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<span style="font-family: Helvetica;">It depends on your
personal style, and what you feel comfortable doing and saying, and what you
know of them and who they are. Just one thing before I start saying this stuff. I noticed you think of all of this as a confrontation, and it might help you if you reorganize it in your head as another thing which is not confrontation but rather the offering of information, because that is also really real: you are giving information to people, and that is not a thing which is a bad thing. It is a doable thing, a helpful thing, and useful. OK.</span></div>
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<span style="font-family: Helvetica;">One thing you could do
would be to really tell them what you told me. It hurts. It hurts you. You
could stop it there, as a separate issue from the educational issue, because if
you imagine that your family does not want to hurt you or your child, you can
say this. You can imagine that they do not know they hurt you and would want to
know so that they can stop. Explain your feelings to them and let them be there
for you in ways they cannot if they do not know it’s needed.</span></div>
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<span style="font-family: Helvetica;">Another thing you can do
if it is not in your family culture to talk about hurt feelings and you don’t
want to do the educational features right now is cut if off at the knees.<span style="mso-spacerun: yes;"> </span>You can say a thing like, that is all, I no
longer wish to discuss anything having to do with language, there will be no
linguistic discussion in my house.<span style="mso-spacerun: yes;">
</span>(Sometimes this makes people say, But why? And you might then develop a
situation where you go back to the first thing…so it might be an opening to an
new epoch of family culture on emo-speak…)</span></div>
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<span style="font-family: Helvetica;">A third thing you could
do is launch straight into educational mode, not gently, as you have said that
does not work, but as Captain Super Professor! Able To Assist The Misguided At
A Moment’s Notice! The Minute They Accidentally Utter Some Ignorant Thing!<span style="mso-spacerun: yes;"> </span>This can be kind of empowering and may tend
to put you in a good mood.<span style="mso-spacerun: yes;"> </span>It is kind of
my lifestyle. I mean I am a little bit gentle in that I am in a good mood most
of the time, but I am not, you know, difficult to read or understand. I do not
say, you might like this movie some day, I say: This! Movie! Here! ‘Tis The One
For You Now! (pressing an actual copy of Wretches and Jabberers into your hand)….</span></div>
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<span style="font-family: Helvetica;">Which does bring me to
education.</span></div>
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<span style="font-family: Helvetica;">That is the second prong
and the one I didn’t feel adequate to answer about until I got back from
Syracuse having met a wide variety of more people than I already knew, who live
good, successful lives without talking, or talking much. So I will list now a
bunch of people I know in case you
want to go the Totally Educational route.<span style="mso-spacerun: yes;">
</span>Which I hope you do.<span style="mso-spacerun: yes;"> </span>And I
realize I don’t have to write as much about that as I had thought, because they
have done so. (And you can show them everything I have to say about Eric, who
doesn’t bother talking or writing much but can save my life in the sea, and
lives exactly as he likes.) There is no problem about my inadequacy as a non-speaker because the non-speakers I know can speak volumes about it! Volumes and DVDs, youtube clips and blogs and more!</span></div>
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<span style="font-family: Helvetica;">Please write back and
let me know how everything goes.</span></div>
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<span style="font-family: Helvetica;">Love, </span></div>
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<span style="font-family: Helvetica;">Ib</span></div>
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<span style="font-family: Helvetica;">OK so the List starts here just with some people who have produced media and I personally know:</span></div>
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<span style="font-family: Helvetica;">Amy Sequenzia </span></div>
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<span style="font-family: Helvetica;">DJ Savarese</span></div>
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<span style="font-family: Helvetica;">Jamie Burke</span></div>
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<span style="font-family: Helvetica;">Sue Rubin</span></div>
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<span style="font-family: Helvetica;">Jenn Seybert</span></div>
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<span style="font-family: Helvetica;">Mark Utter</span></div>
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<span style="font-family: Helvetica;">Tracy Thresher</span></div>
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<span style="font-family: Helvetica;">Larry Bissonette<br />Peyton Goddard</span></div>
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<span style="font-family: Helvetica;">These people hardly talk if at all. Many more of us move in and out of talking, like for example sometimes talking a lot and sometimes not at all. Let me know if you want the list of us and where we talk (or...something analogous) about that! </span><br />
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<span style="font-family: Helvetica;"><span style="font-family: Helvetica;">PS Also, other readers please help with this,
please list other resources you know to help educate DWFM's family.
Since that's just who I personally know, I know other people I know and don't know must know other people I don't know yet. Such as Barb Rentenbach, I don't know her yet and she has a great book I'm hearing now! Thanks!</span></span><br />
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<span style="font-family: Helvetica;"><span style="font-family: Helvetica;">PPS And here's Ariane's resources that she shared below, <a href="http://emmashopebook.com/resources/" target="_blank">in a proper link.</a> Thanks Ariane!</span> </span></div>
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Elizabeth J. (Ibby) Gracehttp://www.blogger.com/profile/08330631899371657005noreply@blogger.com29