Less Than A Year Ago…

If I don’t immediately take notes during and after my typing sessions with Emma, I would wonder whether the words she typed were a figment of my imagination. There is something almost magical seeing and reading the words typed from someone who does not, or does not easily, communicate with spoken language.  It reminds me of the time I went to a lecture given by Soma Mukhopadhyay with her autistic son, Tito who began answering questions from the audience.  Tito is non-speaking and has a great many stims, yet translates his beautifully eloquent, poetic  thoughts into words and has no problem answering any question posed.  It’s often a disconnect for the neurotypical person watching someone who isn’t able to verbally say what they are thinking, yet has no trouble writing their thoughts, which in no way match the presumptions we, NTs tend to make.  If you’ve never witnessed something like this, it can be pretty mind-blowing, which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.

Last night I began Emma’s session with a question.  It’s the same question I always ask her.  “Hey Em, how about after you sing this song we do a typing session together?”  And Emma answered, as she does every time I ask her this question, “Yeah!  Typing session with Mommy!”  Emma’s excitement, in and of itself, makes me incredibly happy.  That she’s interested and (I think) looks forward to our sessions as much as I do, makes me believe we are on the right track.  When we went into the room, now dubbed, “Emma’s office” I tried to think of a question it seemed likely Emma would know the answer to, but that if she typed it out, I would be surprised.  As we are leaving soon to visit her Granma for the holidays, I said, “When we fly to Granma’s we have to first take a taxi to an airport.  What’s the name of the airport we usually go to?”  Without hesitation, Emma typed, “La guardia”.  Wow!  Just wow!  I then asked, “There’s another airport near La Guardia, we don’t usually fly out of, but what’s the name of it?”  Emma, again, without hesitation, typed, “kennedy”.  Whoa!   Then I threw her, what I thought would be, a curve ball and asked, “When we fly out of La Guardia we always take the same airline to visit Granma.  What’s the name of the airline we always take?”  Emma wrote “United”.   EEEEEE!!!!!  Snoopy dance.  Give me a moment while I hyperventilate.  Whooooo, whooooo.

Emma went on to tell me what state and city we live in, the name of the state we were flying to and when I asked, “What’s another name for the city we live in?  It starts with an M?”  Em immediately typed “Manhattan” though she forgot the h and one of the ts.  I followed up with, “And what’s the neighborhood we live in?”  Emma, again without hesitation, typed, “Chelsea.”  Taking another deep breath.  For those of you who are doubting what I’m writing, I understand.  Really.  I do.  As I wrote above, I actually had to take notes during our session, because I knew I would come away as if in a dream.  (Ibby suggested I record our sessions together and I keep forgetting to do that, but I have to remember to from now on.)  That’s what it feels like, a dream.  I absolutely believe in my daughter’s competence.  I believe she is far more competent than most people who come into contact with her do.  I do not for a second doubt that she has a busy, complicated and fascinating mind, filled with thoughts, ideas and knowledge I can only guess at.  But to know this, to believe this, is different from being shown this.  I don’t mean to offend any of you reading this who are non-speaking and communicate by typing.  I don’t mean to offend, really I don’t.  I hope that were Emma to ever read this she will understand what I’m trying to say.  This is not about Emma’s limitations, either intellectual or otherwise, this is about my own.

For all you neurotypicals who can speak, humor me for a moment.  Think about how you would feel if you could not speak.  Think about all the things you know, but couldn’t say.  Now imagine if you were told something simple, like the city and state where you lived over and over, repeatedly, day after day.  Just think about this for a second.  Close your eyes and try to imagine what it would be like to not be able to speak.  Imagine that well-meaning people tried to help you speak through repetition and you were not allowed to move on until you were able to say these things being “taught” aloud.  Imagine how you would feel were you never able to say these things, so you weren’t allowed to move on.  It was assumed that because you couldn’t say them, you must not KNOW them. And yet, all this time…   all this time you really did know these things.  Not only did you know these things, but you knew so much more.  But no one believed that you did.  No one treated you as though you did.  Less than a year ago I assumed Emma did not know.  Less than a year ago I assumed Emma did not understand.

Less than a year ago…

Emma waiting for the school bus with her string

*Em

32 responses to “Less Than A Year Ago…

  1. … which says more about the limitations of neurotypical thinking and the constraints we unintentionally place on others who seem different from us than anything else.

    Amen. This is beautiful and there are such raw, important truths here. Thank you.

  2. Love this. Totally endorse what you report of Emma and your interaction with her. Your piece triggers of much useful thinking and feeling.

  3. It used to stun me to realize that most other people actually think this way–that just because I couldn’t say something meant that I couldn’t know it.

    (That panda hat is the best thing in the world, by the way.)

    • I cannot imagine what it must be like to have grown up and lived one’s life with issues around spoken language and to have felt the brunt of other people’s limitations and responses to that. This might be a good example of NTs lacking theory of mind! It is so difficult for so many of us so called NTs to make the mental leap required in assuming differently.

      PS Em picked out that panda hat about a week ago and wears it all the time now!

  4. What an important breakthrough your work with Emma is! I could hardly read yours and her words through the tears of joy! It’s incredible, isn’t it, how we NTs can totally misunderstand what a non-NT person is going through, and that there is this real person inside just waiting, waiting for us to find the key which will let her out into the world of communication. Our world is so driven by communication, and actually much, if not most of it is driven by the ability to type, not speak!

    EEEE!!! Granma

  5. Soooo well said! Emma is doing AMAZING! And you are too in facilitating! How encouraging that must be for you! My daughter Lindsey and I started typing together about two years ago now…but my progress with her was not near as quick! But…all the effort has paid off! If I blogged today, I would title my article, “Less than two years ago…” and go on to explain how I am preparing right this moment for her IEP meeting this afternoon to discuss her second semester schedule of THREE near grade-appropriate classes as she prepares for High School next year. Less than two years ago, I would have NEVER believed this…as she spent much of her days at school sitting at a table trying to work a one-step output device or make a choice between two items on a choice board. I must say that I always thought these “autistic child success stories” were the exception, not the rule. However, I NOW see ALL of these children with NEW EYES…PRESUMING COMPETENCE!!! I think I’ve learned more than Lindsey has in the past two years! She already knew most of what she is just finally able to share with us now!!! Soooo thankful that more and more children are being seen for what potential they really have!!! WE are the ones that need to change! Thanks for continuing to share your story, Ariane! I love following your journey and sharing it with others!!!

    • Robin, I loved reading about your daughter Lindsey. How wonderful! Yes, our kids, it turns out, are NOT the exceptions at all. And yes, it is we who must change.
      I loved reading your words, “I think I’ve learned more than Lindsey has in the past two years! She already knew most of what she is just finally able to share with us now!!!” I think this about Em. She’s known all of this and so much more, but I’m the one who is catching up to HER!

  6. COULD YOU PLEASE RECORD THESE? (Along with everything else you are doing?) (Caps lock for emphasis, not “mad,” of course!) And, oh yeah, “Eeeeeeeeeeeeeeee!!!!” I am sitting here in the coffee shop smiling.

  7. This is beautifully written Ariane…….I still find myself making the mistake of assuming Brett won’t be interested in something or successful at something and I realize this is all my fault. As much as I believe he is understanding all that is said etc….I still will think at times…oh he doesn’t really get that or he won’t like that etc…..I hate that I do it and it shames me. My husband is better at just letting him try things and seeing how it goes. I tend to overplan everything and worry about the execution of it all. Hoping and praying that it all goes smoothly. Example…..the school goes every year to the movie theater. Taking Brett to the movies is something we have never tried…because I thought he wouldn’t be able to sit that long, the noise would bug him, he would bug others with his verbal stims, the movie wouldn’t be something he was interested in…..on and on. I never let them take him with the school kids either because I didn’t want there to be a scene and didn’t want to interrupt the classes fun etc……this year though…I said if you think you want to try it, then go for it! They took him for a pre-tour of the theater and put pics on his ipad. I was CERTAIN the movie they were seeing would not be something he would be remotely interested in and figured he would be outta there in a half hour or so. Well….(I am sure you see the ending coming here)…he sat thru the entire 2 hours of the movie, never made a sound and loved the whole experience! To top it off, during the ending battle scene where the mother has to be saved, he stood up and clapped!!!!!!!!!!!!!!!!!! Thus, showing us he not only sat there but understood the movie as well. I was so excited but ashamed that I continue to limit him at times instead of just allowing him to try experiences etc…I let my own inhibitions get in the way. I actually thought I was pretty good with taking him a lot of places etc….but realized I still do try and shelter him from experiences that may or may not go wrong. There are times we try things and it doesn’t go smoothly for him but that is probably our fault as well! I love the stories of Emma and her typing…gives me a BIG reminder that I need to work harder at not assuming anything about Brett. To allow him the opportunities as well to show us all that he is capable of. There is a great book called, “Out Of My Mind” that I thought of when you were writing about having the same basic things taught to you over and over again….year after year. I worry about that happening for Brett as well. I will do all I can to continue to educate myself and learn to not let my own worries get in the way of him being all he will be and can be! I am so very proud of him for proving me wrong! :O)

    B~

    • Becky, I understand, so completely. I think it’s just so important that we are able to admit this to ourselves, to each other, to our children and to remember that we aren’t alone in this. Pascal suggested I tell Emma what I was feeling about my fumbling along with my facilitating. So I did. I told her how sorry I was that I wasn’t doing it very well and that I really appreciated how patient she was being with me. I told her I was trying to get it right and that we had Pascal to help us. I mean really Becky, what more can we expect from ourselves or one another.
      Richard and I were just discussing earlier all the mistakes we’ve made and Richard said, “and we’ll keep making mistakes. It’s okay. That’s called living.”
      I married a very smart man! 😀

  8. Um, except for one thing. It is your family and your privacy, so I should emphasize that ONLY IF YOU WANT TO. 🙂

  9. That is incredible the progress you two are making. I am trying to imagine how fustrating and annoying that must be for Emma and I can’t even wrap my mind around it. Having a functioning mind and not being able to express my thoughts. How aggrevating that must be, how could anyone remain patient after all of that. Being stuck in your mind and wanting to shout what do you think I am a moron, why are you treating me like one, by keep repeating the same things to me over and over again. I got it the third time. I can’t imagine it. I can’t imagine how hard life must be for her and how she keeps her patience and her good spirit. Nor can I imagine what it is like to be her mother and have these exciting insights. Having so much love for my daughter and watching her go through that. Nevertheless, the difficulties trying to understand another human being who it is so hard to wrap your mind around what they are going through. It is hard enough, with being able to easily communicate, I can’t imagine the difficulties if they have had a hard time communicating up until now. The things she has to say and has wanted to communicate for the longest time and only now being able to communicate to you. Sorry for the post being so long.

    • I just loved reading your words because it is such a replica of my own thinking and thoughts regarding Emma. I can’t imagine either. I do not know how she maintains such an upbeat cheerful disposition. But she does. I cannot imagine where she will go with all of this. And that is just incredibly exciting. Thank you so much for reaching out with your comments!

  10. Emma looks forward to the sessions and she knows you believe in her. She is also practicing and getting used to let her mind set free all the things she knows, in a different way to communicate
    A beautiful moment

  11. This is great to see. I can’t wait to hear more. (Hi Emma! I like typing better than talking a lot of the time.)

  12. Pingback: expression is not existence and other big truths « a diary of a mom

  13. Good morning Ariane! I am running a day behind lately! I have been wondering since I have read this about Nic and his point of view as a sibling. Does he want to learn to do FC so he can have a conversation with Emma or have they, since they are close in age, have they been able to form their own language, their own form of communication amongst themselves? I watched Meg, 4 years younger bend and flex so she could have a relationship with Ted. Has Nic done the same?

    • You know he hasn’t shown much interest. But he’s also 12 going on 25. He always wanted a younger sibling that he could teach stuff to and I’m not sure he’s interested in being taught so much. At least not at the moment.

  14. I have an Emma, too. We’ve just started using an AAC app, and wow, mind blown. Even in our first week, it’s become SO apparent– not for the first time– that she knows so much more than she can verbally express. That I ever doubted that makes me so incredibly sad. You’re exactly right: it’s about our limitation. Thanks for the powerful reminder. I *do* believe in my girl.

  15. Aw… Jess It’s always nice to know something one says makes sense to another person! 😀

  16. Diary of a Mom recently (i.e. about 5 hours ago) quoted some of her blog post (linked above) in a image meme, which might explain an uptick in views on this post.

    I just wanted to comment on the picture at the bottom: “Oooh! Good string! flapflapflap”

    It makes perfect sense to me why Emma (or anyone else who noticed it) would hold onto a string like that. It’s a very nice string. 🙂

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