ladies and gentleman... welcome to our... [inaudible] mesentation... alright, let's come and sit... okay okay i'm ariane zurcher and this is my daughter emma zurcher-long. emma's twelve and emmais going to... she loves talking into the microphone but for this presentation we'reactually going to... she's going to communicate
Zurchers Party & Wedding Store, by typing on this keyboard. it's a bluetoothkeyboard hooked up to the ipad. what we did in the beginning was we started with thisstencil board that emma would point at with a pencil. i would then transcribe the lettersthat she chose. we then moved on to a laminated letter board and now we've graduated to thekeyboard. emma actually chose the title of
this presentation. she wrote, when i saidto her, "what do you think you'd like to present about?" and she said, "how about we present- my body does not obey my mind?" so, i'm actually going to let emma take the lead on this presentationfor the most part. i will say that we are... we have a blog. it's called emma's hope book[emmashopebook.com] emma, more and more is posting blog posts herself and i am less andless frequently writing blog posts myself. emma, do you want to start things off? here we go. alright. work.
m... y... v... o... i... c... e... w... o... r... k... s... i... t... s... t... h... e... w... o... r... d... s.. t... h... a... t... c... o... n... nope... m...e... o...u... t... t.... h... a... t... t... h... r... o... w... p...e...o...p...l...e... o...f...f... off t...h...e... the... [inaudible]
my body does not obey my mind emma zurcher-long my voice works, it's the words that come out that throw people off the intelligence trail. we have a voice that is a girl's voice that gets activated to read the words. my voiceworks, it's the words that come out that throw people off the intelligence trail. so, thething about the body/mind disconnect, which is what emma has also called it, this probablymore than any other thing was the thing that threw me, as a parent. emma, you would saysomething, and i would think that the words
that were spoken were exactly what was meant,and also that the words spoken were indicative of what was being thought. what i have learned,through you, emma, is that this is incorrect. that the words spoken might be what was meant,but just as often, and even more often they were not. for instance, i might ask a yesor no question, and emma, you might say, typically, "yes!" but in fact would mean "no." untili found... until we learned that emma had actually taught herself to read at a veryearly age and write, emma was, in school being taught very basic reading and becauseshe would fumble reading out loud, they would continually reduce the level of reading. sothat eventually it was large, big text and picture books. sadly this was not at all whatemma needed... and in no way showed what she
was capable of. emma suggested during thispresentation that... she wrote... emma, can i quote you? yes. she wrote, "i will put allvanity aside, so that others may learn." she suggested that i ask her a simple question,which she will then attempt to answer through spoken language and then she will then writeon the keyboard an answer to the same question. so the question that she asked me to ask herwas about the weather. there's a little back joke about this, which is that emma callsus talkers, "weather talkers." those people who enjoy cocktail party conversation, smalltalk, that sort of thing, are weather talkers. so i had said something a bit more complicated,emma said, "how about you ask me something simple, like the weather because, you talkerslike that sort of thing." [laughter] so, emma,
what do you think of the weather? [emma laughs]what do you think the weather is sunny! okay, well it is, it is sunny, so that was good. [applause]and now we're going to type an answer to that question as well. okay. [inaudible] [mouthsletters as she types] do it! [makes funny faces at the audience] s... do it! [inaudible] h... [inaudible] f... [inaudible] clap. okay. [applause]
beautiful, blue, skies with a touch of humidity, makes me happy thati can wear a pretty dress. i'm a talker so i could go on and on, but i wanted to haveyou lead the way here, and give you the opportunity to write more about what you mean when yousay, "my body does not obey my mind." [applause] the beauty of my mind is also oftenignored by my difficult body that is very childlike in movement. one of the things thatemma asked me to comment on was that as a parent i, again, took the way she moved ordidn't move as an indication of interest or intent. so for example, at an early age iwould often say something to emma, but because she turned away or walked away or she didn'tlook at me, i assumed she wasn't listening or couldn't hear me, or perhaps didn't understand.so, it didn't occur to me that she understood
everything. both my husband and i fell intothe problematic behavior of believing that what we saw was in fact, and what we believed,was in fact the truth. and emma has now told us through writing how very wrong we were.we would talk about emma in front of her. we would say all kinds of things that she has now toldus, not only she understood, but was very hurt by. this idea of the body and the mindand that there's a disconnection that the mind could be thinking all kinds of incrediblyarticulate and profound things, but that when asked to speak and use spoken language itwasn't going to... the two were not connected necessarily. and i found this very, very confusingfor a long, long time. i wish i had realized this much earlier. so emma, why don't youtalk a bit more about what your mind is doing
and or give another example of the body/minddisconnect and how that shows up for you. doing fish lips to theaudience is an expression of funny, playfulness, but can be misinterpreted as simple mindedness. [applause] doing fish lips to the audience is an expression of funny, playfulness, butcan be misinterpreted as simple mindedness. i think that's another great example of whatemma's been talking about. what else? [emma makes "fish lips" at the audience] [laughter and applause] all right. do it! [emma laughs]
[laughter] emma! do it! [laughter] okay. silliness... come on. emma. [laughs] [applause] silliness is acceptable in those who are believed smart, but for those like me, it indicatesstupidity. silliness is acceptable in those who are believed smart, but for those like me, it indicates stupidity. okay, em, what else?
em? emma... [laughs] come on. go ahead. l... e... t... s... l...e... t... let... p... e... o... p... l... e... people... a... s... k... m... e... q...u... e... s.. t... i... o... n... s... a... n... d... m... a... y... b... e... o... n...e... f... o... r... y... o... u... [emma waves her hands] let's let people ask me questions, and maybe one for you. okay [laughter and applause] emma's doing this [flaps hand] this is a...
if any of you who've been toa autistic friendly, autistic led organization or conference instead of clapping becausea lot of the people in the audience will be autistic and may have sensory issues aboutthe sudden noise of clapping, everyone does this... [flaps hand] which is sort of wonderfulso that's what emma's doing. alright. so we'll open it up to all of you and if anyone hasquestions just raise your hand and i don't know if there's a roaming mike, but maybei can repeat the question once you've asked it. i just want to ask emma, she has an idea[inaudible] when we are asking something for our children [inaudible] to us. repeat thelast part. when we are asking our son, talking to our kids, how can we know if they are listeningto us? [laughter]
assume they can and you will do no harm. assume they can and you will do no harm. i'll just add somethingthat one of the things we did when we realized that emma was understanding everything and beforei had learned this method of supporting her typing, we had a laminated yes no card and the yeswas with a green background and the no was with a red background. we would hold it upand she would point to one or the other. it's amazing how much information you can get justfrom those two words, but it will at least give you an indication. so... are you listeningto me? yes or no? i've seen countless kids who were deemed non-speaking, who then learnedthis method of typing who are saying the most
profound things. on our blog we have a resourcespage and we begin with all the blogs written by non-speaking autistic people or non-fluentspeaking autistic people and it's a very lengthy list. a lot of the kids are emma's age, maybea little bit older, teenagers... i mean it's every age group. i've got a handout over here,it's a bullet point of presuming competence, because the whole idea of presuming competenceis something that i didn't really understand in the beginning, but it has been absolutelykey to moving forward. i am just so impressed with you emma and i just thank you so muchfor coming today. i am a speech pathologist so i did have a question about your supportivetyping and how you learned to do that. years ago... i'm going to show my age... twentyyears ago there speech therapist were doing
facilitated communication and there was alot of controversy over that and a lot of people stopped that. now i did see that youwere not supporting her. i did see her sometimes supporting herself, but i'm just very interestedin how she learned. right. okay. so... the way all of this unfolded for us was that i wasasked to speak at a conference called the autcom conference in 2012. at that conferencei saw a film, wretches and jabberers, which i highly recommend, if you haven't seen itor don't know of it, you can get it through itunes. in it, there are two men, tracy thresherand larry bissonnette, and they have two facilitators. when i saw this i went then after i had givenmy presentation, i went to a presentation given by the four people, the two facilitators,pascal cheng and harvey lavoy and tracy thresher
and larry bissonnette and in the audiencewas a boy, who could not have been more than eight or nine years old, who was speaking...he was writing, he didn't speak at all and he wrote the most insightful, wise, profoundcomments. i was blown away. so i went up to pascal and i explained about emma and i said,do you think there's anyway that this could be helpful and he said, i'll come over. i will be in new york, i'll come over and we'll see. emma wrote this whole thing about the three bears and goldilocks... and... i mean... emma at the time was in a special ed school,we now homeschool, but she was in a special ed school. they were sending reports homeof all kinds of... there was self-injury and there was... because she couldn't read aloudthey kept dumbing it down, dumbing it down
and nobody... there was... believed that shedidn't understand the concept of money and time and all these things. so, this was incredible.about three months later a woman named soma mukhopadhyay, who is an indian woman, whois out of austin, texas was in new york. a friend contacted me, i set up an appointment.my husband and i went with emma and her teacher, two of her... a therapist and a teacher andwe sat with tears streaming down our face because soma said, i am thinking of a monthwhen the leaves fall off the trees and emma spelled, "october." just to tell you guyshow far we've come, this was just about a year and a half ago. i just wanted to complimentemma that you have
an excellent vocabulary for anybody, nonverbal or verbal, autistic or neurotypical. i'd just like to know, do you feel pain doing fish lips? do you feelpain? okay em, do you feel pain when you do fish lips? no! [laughs] the pain is canceled out by the hilarity. thank you emma. you really [inaudible] moretoday. thank you so much. [applause]
thank you emma for bringing your insights and showing us... showing all of us that in your uniqueness you are the same as everybody else, the onlydifference is perhaps you communicate a little bit differently. once we open the door forthat communication, we see the brilliant, wonderful person you are. so thank you very much. you talkers forget there is great wisdom in silence. hence my husband's nickname for emma, the dolly-lama. [laughter and applause] i would like to putout a request to all of you in the audience, which is this. the biggest difficulty i havecome to see for my daughter is not her autism,
it is all of us. and so i think it is ourduty and our responsibility to change the conversation and the discussion that is currentlygoing on about autism and stop with all the deficit talk and all the lists of everything thatis wrong. imagine for a moment if each one of you was given a long list of every singlething that you do wrong. everything that you think, the way you move, the way you speakwas criticized. just think about that for a second. and think how then that would affecthow you behaved. so, the one thing i would love when we leave here is if all of you couldjust think of that when you're working with whomever you're working with, who may or maynot be autistic, to consider how it must be for them and to act with respect and kindness.thanks.
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