Routines Disrupted

We have been traveling.  Our cell phone and internet coverage has been spotty and in some places we’ve had none at all.  As a result my routine, which usually means I wake up when Emma comes into our room, (anywhere from 5:15AM – 6:00AM) get dressed and go to my studio where I begin the day by writing, has been disrupted.  The beautiful thing about traveling is that there is no room for routines.  We’ve spent a few days with my sister, gone on a rafting trip down the Colorado River, gone horseback riding, gotten lost, spent time with one of my brothers, hung out with one of my cousins, (I have a large and sprawling family that live all over the United States and even world, and my mother’s house is often the only place we get to see one another.)  So it’s been really wonderful and lots of fun.

When I have gotten up early enough to write AND the internet is cooperating, I have begun a post only to have Em say she doesn’t want me to write about the topic I began writing about.  In fact, I have started three different posts, and Em has shot down every single one of them.  This could be seen as a bad thing, but I don’t view it that way.  I see this as an incredibly good, no, a great thing.  The first time I told her what I was starting to write about and asked her permission, she said no, I was surprised.  The second time I began writing about something else and asked her permission, I was surprised and amused when she typed “no, I do not want you to write that.”  The third time I thought – this is great!  Great because this blog began with no thought of her opinion and has evolved to represent only what she agrees to and may well end because of her thoughts and opinions.

What all of this means is that I haven’t been writing every morning.

So I will end with something Em typed to me the other day and told me I could post.  She typed, “Language is an awkward way to communicate.”  She would not elaborate further and why would she, as that sentence says it all.

The Rocky Mountains

View From Cabin

33 responses to “Routines Disrupted

  1. Totally agree that language is an awkward way to communicate. I often wish for a way to show the real of me to human beings I wish to share my essence. Language is the way they expect and it is such an impoverished way to be limited and yet it is the expectation…as if there is nothing better. Language is over rated and even so seems to be the medium that makes the world go round in ever so many ways. It has caused human beings to become unwitting captives of a fraction of reality’s beauty at the expense of a more robust, magnanimous experience of what is.

    • When Em and I were at Autreat two weeks ago we went up to Beth and Ibby’s suite and sat with Amy, who types to communicate. Em didn’t want to type, but she did want to sing, so she began humming and singing. I write “singing” but rarely were they actual words, but more sounds that the rest of us mimicked and then riffed on. It was the most memorable hour and a half we had! (Well, except for playing shark attack with Adam in the indoor pool! But that was also not about language…)

  2. Beautiful, so glad you are having a great time instead of trying to inform us all. Have a grand time, continue to enjoy your family and your travels. We are here if and when you want to return to. Lot’s of love to all of you.

  3. Vacations are like that. The same thing happened when I went to Montana and Wyoming.

  4. Getting lost can be so much fun sometimes! And I completely agree with Emma even though I studied English Literature in uni and language can be awesome too. Awksome. I guess!

  5. I agree with Em….telepathy would be so much easier…and when language has to be communicated via typing, all the harder!

    • Actually Em seems better able to communicate through typing than spoken language, or perhaps they serve different purposes, but typing is certainly the way she is able to communicate deeper, more philosophical thoughts and ideas.

      • I have a question for you, and I mean no disrespect….I was a student under Doug Biklen in the 70’s and was a colleague of his for years, while I taught at local university and did research myself. I loved FC but was nervous when Biklen said that ‘every child with autism’ could use this method…..because I know that every child is different and has different abilities. I taught a course in FC at my University. I read all the research and was stunned and sorry that there were so many studies ‘disproving’ FC. Even Doug says he is not so interested in the research on FC but in the stories people tell.
        So, as a mom….how does this research fit into your work with Em using FC? I do believe that there are independent typists who communicate, but I am cautious about the ‘facilitation’ part.

        • I’m not a person who’s ever used FC, and Ariane and Emma obviously have first-hand experience where I don’t, but…

          Biklen’s stance that every autistic child can use FC seems to be very ignorant of the fact that there *are* autistic people who don’t/can’t use, or think in, words or language itself. Which is different from simply not being able to speak, not being able to use speech as reliable communication, or having certain difficulties of movement, time perception, or anxiety that make typing independently difficult. “Non-speaking” and “non-verbal” are different things. FC still depends ultimately on someone translating their thoughts into verbal form. If someone truly is completely non-verbal, I don’t see how FC would be useful for them.

          I can understand how FC would be useful for a lot of autistic people with various expressive language difficulties, but I think it’s a fallacy to say “all” or “every.”

          • I, too, agree that saying “all” is just a mistake. Everyone is different. And I think, from my NT brain, I can understand how writing or typing gets the thoughts out better….I am interested in the thoughts of people who use writing/typing to communicate!

          • Chavisory – as I wrote in my reply to Segurry, I have never personally read or heard Doug say this. I have actually heard him say, as he did at the spring ICI Conference I attended, that supported typing is something many can benefit from. In fact I’ve never heard anyone say the comment Segurry quoted. It may be that this was said in the excitement of the early FC years and has since been amended, in any case, it is definitely NOT something anyone at ICI has said at any of the conferences I’ve attended.
            As far as your comment, “FC still depends ultimately on someone translating their thoughts into verbal form.” I disagree. FC is not about anyone “translating” anyone’s thoughts. It’s about giving the physical and emotional support a non-speaking person needs so that they can type what they are thinking and feeling.
            Speech and typing use different parts of the brain, so I’m not clear on what you mean when you write, “If someone truly is completely non-verbal, I don’t see how FC would be useful for them.”

            • Good to know on Biklen not saying this currently, at least.

              I get the part about FC being about physical and emotional support–it’s not the facilitator translating someone’s thoughts–it’s the facilitator giving the support necessary to type, if I’m understanding?

              But the person typing ultimately still has to be able to think verbally. Or be able to “translate” their own thoughts from non-verbal to verbal. It’s not the facilitator doing the translating, but the person typing might be having to. So for instance, most *language* is easy for me, even though speaking isn’t… there is still a lot of “translating” from non-verbal to verbal that *I* have to do. And when I’m listening to other people talk, I have to do a lot of back-translating from verbal to non-verbal in order to understand what they’re saying.

              If someone truly doesn’t or can’t use *language* itself–not just if they don’t speak, or if language itself is an effort or a second “language,” or if they need some kind of specific physical or emotional support for typing (what I’m understanding FC to provide)–but can’t think in language itself, then I’m not sure I understand how FC-supported typing would enable verbal communication.

              (And I don’t think someone being truly non-verbal has anything to do with intelligence or competence. Amanda Baggs has blogged and written a lot about the thinking and understanding of people who truly don’t or can’t think in words, and other kinds of intelligence that flourish when that’s the case. I don’t even think it means that someone can’t communicate, but that they would need a non-word-based communication system.)

        • I have had numerous conversations with Doug and listened to him speak on a number of occasions, but have never heard him claim FC is for every Autistic child or person. Perhaps this was something he said, but later retracted? In any case, I cannot and do not speak for Doug or anyone other than myself and my own personal experience with FC, not only using it with my daughter, but having spent time with many non-speaking Autistics who use it.
          I’m guessing since you taught a course in FC, you have far more experience with it than I do, but I’m curious, how do you teach a course in it if you are not sure about the “facilitation” part. After all, without the facilitation, isn’t it just learning to type? I ask this genuinely and with no malice.
          What I have seen with not only my daughter, but with others like her, we need to provide her with resistance so she does not type her favorite scripts, which are her go-to verbal phrases as well. They are easy, comfortable and serve as a kind of default. Provided with resistance, she will type things we have never heard her utter. We are fortunate in that we have no doubt at all that she will become an independent typer in time as she has no physical impairments that would suggest otherwise. But for now the resistance and slowing her down are imperative. Does this answer your question?

          • This paired with the link you provided to the biology of Broca’s area is fascinating. When I taught the course on FC, the research was not yet published (I could not teach the class after the research was published). So we did teach facilitation, and each grad student had to use FC with a client or family member. One of the interesting things, to me, was that unusual use of language that almost everyone who is a FC communicator types. Uncommon grammar, creative phrases, and so forth.

            And I saw Doug about a year ago and to my knowledge, he has not retracted that statement, but he does not use it anymore. We had him and Rosemary Crossley at my University years ago, and more recently Doug spoke again about his research. I also attended a seminar with him at Brandeis University, sponsored by the Nancy Lurie Marks Foundation.

            So, I am personally in a quandary. I used to be a college professor, so did research and writing. I value research, and I also value personal experiences. So I support parents who use FC with their kids, but am confused about the ‘evidence’. (Note: I am a certified BCBA and certified Floortimer, and I do Floortime full-time….I read the ABA lit and hate how it is implemented in schools with kids). So, I know from experience that ‘evidence’ is not always ‘true’.

            Thanks for this discussion!

            • Segurry – it’s really tough and I think it’s wonderful that you are open to all views. I have read the studies that conclude FC is a hoax. It is unfortunate when this is what is concluded as many have been given a “voice” through FC, though I understand why they’ve reached their conclusions when their only introduction to FC is through a given study. A non-speaking young Autistic man was at our house just yesterday, he said, “typing is my voice.” This is a young man who does not need a facilitator holding any part of his arm or body. Yet when I stood next to him, he became distracted, when his support person moved closer he was then able to type coherent and thoughtful responses. This is but one of countless examples that illustrate why so many of the FC studies show users who do not type as expected. To have the only means they have to communicate taken away is cruel and sadly has been the case for a great many. We humans make errors. In an ideal world all facilitators would be mindful, follow best practices, immediately get support and help when they even remotely suspect they may be poorly facilitating someone, by guessing what they are trying to say and then deciding this is fact, rather than following up with another facilitator and seeing if they get similar responses. Multiple facilitators is always the ideal. Really appreciate your comments.

    • Typing is far easier for me, actually.
      Spoken language is what’s hard. But in different ways for me than for Emma, I think.

      And handwriting is easier than speaking as well, but serves a different type of thought than typing does.

  6. I was wondering where the post were…I am so happy this is the reason! I too haven’t been able to post much, because kiddo wants constant activities. She is not sure how to initiate most times, so I have been setting up many “invitations to play” around the house and we have been doing many outings.

  7. Sounds like you’ve got a tough editor there. 🙂

    I’m envious of your vacation. I miss the mountains and the wide open sky.

  8. Corbett Joan O'Toole

    I love how you model to us all that listening to those you love is important. A lesson I often forget.
    This post makes me think of the children’s book, Frederick by Leo Lionni. Frederick gathers images of nature and colors and even words to share with his community of mice during cold and dark winter days. Thank you for reminding me to take the time to break routines and gather new images to nurture us during the challenging times.

  9. “Language is an awkward way to communicate.” <— LOVE LOVE LOVE! I've often suspected my 5 year old autistic son feels this way! He's great at communicating his wants, needs, likes, feelings on his own term and in his own way…but language is DEFINITELY NOT a priority for him! We got an autism diagnosis at age 3 after an evaluation for what we thought was only a speech delay but he has always been a great communicator. He can talk and he does but at his comfort level. I also suspect that the constant chattering that comes from us non-autistics sometimes annoys him and I don't think it's always a sensory/sound sensitivity thing either. We've made so many beautiful memories that required little or no speech. Through your blog I've discovered so many amazing people — speaking, non-speaking, sometimes-speaking. I am so proud to be part of this community. Thank you for helping me find my son's people 😉

    • Thanks so much for your comment. One of the best things we have done in helping our daughter is taking the emphasis off her verbal speech, but instead giving her alternate ways to communicate.

  10. Chaivsory – couldn’t reply directly to your last comment for some reason, but the areas of speech production and understanding language actually occupy different areas of the brain. “named for French neurosurgeon Paul Broca who discovered the function of Broca’s area while examining the brains of patients with language difficulties. This brain area controls motor functions involved with speech production. Persons with damage to Broca’s area of the brain can understand language but cannot properly form words or produce speech.” ~http://biology.about.com/od/anatomy/p/brocas-area.htm

    Typing uses an entirely different area, the left temporal lobe, so someone could understand language, yet unable to speak, but can type their thoughts.

  11. I agree with Emma. The depth and richness of communication traffic when verbal speech is removed continues to stun me. Good to know you are both having family fun and well deserved.

  12. Did Emma ever tell you what she did want you to write about? Or was it just that she hoped you’d do something else with her instead? Just curious…

    • She didn’t say and after a couple of questions from me, she typed, “I better go.” When I asked her if she would give me a topic I could write about she typed, “Very last time we work” then got up and left. So… 😕

      BUT, she did say I could write about something I’ve been wanting to write about and am planning to write today 08/26/13! 😀

  13. Enjoy your travels 🙂 I am glad you ask Emma’s permission before you publish anything I know I wouldn’t want my mom writing about me without my permission.

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