An Unexpected Response and The Importance of Trust

During my supported typing session with Emma Saturday evening we discussed Little Red Riding Hood.  I asked Em what she thought Little Red was bringing Grandma in her basket.  Emma typed “blueberries”, which seemed like a terrific guess, particularly as Little Red could certainly have picked them herself, placing each blueberry in her basket as she made her way toward her Grandma’s house.  We discussed the wolf and I asked questions I thought it likely Em knew the answer to, but that I wouldn’t expect her to answer verbally, just as Pascal, who is helping me, advised.  Eventually I asked, “Em, what would you do if you were asleep in your bed and woke to see the big bad wolf?”  To which Emma typed,  “I would go to the three little pigs house”.  Though she paused after she’d typed, “I would go to the”.  I urged her, “Take your time Em.  Write what’s in your head.”  She looked at me and whispered, “three little pig’s house.”  She then typed the rest of the sentence with me.  “I would go to the three little pigs house.”

I looked at that sentence.  It took me a second and then I laughed and said, “Wow Em.  That is such a great idea!”  After all the three little pigs have had run-ins with the wolf.   They know, better than anyone, how to deal with him AND they figured out how to build a wolf-proof structure after much trial and error that the wolf cannot break into and where they are safe.  Emma grinned at me and then, very sweetly, patted my cheek.  I took her loving gesture as a sign of her encouragement and patience with me.

Supporting Emma’s typing is not easy.  It is actually much harder than I imagined it would be.  I am pretty sure Emma spoke the last four words of that sentence because she was not able to trust that I was able to support her well enough to type that.  I think she sensed my hesitation.  I had no idea what she was trying to type and because I am not well trained and am very new to this, my support varies and is not consistent yet.  I am hoping I will learn and be able to give her the support she needs to flourish and eventually type independently.  What is fascinating about FC (facilitated communication, more on that ‘here‘ and ‘here‘) is that had I asked this same question of Emma and expected a verbal response, I do not believe she would have given me this answer.  If she had, I would have been absolutely blown away.  These are not the types of things we have been able to “talk” about.  Typing is giving her the tool she needs to be able to express herself in a way that has not been possible to date.

As an aside, two years ago we hired a woman who developed a literacy program for Autistic children.  While I have some serious misgivings about certain aspects of her program, the literacy piece is extremely well mapped out and it was what finally gave Emma the tools and practice she needed to learn to form the letters of the alphabet and began to read, write and type.  Now two years later as a result, Emma is reading and writing at a second grade level, though it is probably much higher.  Emma was not taught through phonetics, in fact we never even taught her the names of the letters in the alphabet.  For two years Joe and I worked with Emma every day on her literacy program.  For more about that program you can read ‘here‘ and ‘here‘ or put the word “literacy” into the search box and everything I’ve written on the topic will come up (just be aware my ideas and views have changed pretty dramatically since many of these posts were written.)

I mention all of this, because I want people to understand that Emma did not sit down one day and begin typing in full sentences.  She did not suddenly pick up an encyclopedia and begin quoting from it.  I know there are those who have.  I wanted to pursue supported typing with Emma after going to the Autcom Conference this past October and meeting Pascal.  He was kind enough to speak with me about Emma and gave me some advice.  I didn’t know if she would be a good candidate for FC.  After all she has some language and typed independently with her two index fingers.  But I want her able to converse on a more sophisticated level.  It seemed to me, FC might be the method by which she would be able to do that.

I am always in awe of Emma’s patience with this world, with all of us, with me.  Her inner strength and resilience are incredible.  She has been ignored, doubted, talked down to, spoken of while she stood right there listening as though she were deaf, she has been misunderstood and treated as though she were incapable of understanding.  Were I treated this way I would be in a state of near constant rage, alternating with debilitating depression.  If any one of us were treated the way so many view and treat Autistic (whether non-speaking, marginally speaking or fully speaking) people, most of us would want to retreat from this world and lose all faith in people, even people we love.

I do not know how or where Emma gets the strength to greet each day with such cheer or how it is that she is so good-natured, kind and loving after all she has been through in her short life.  But she has and is.  I began this blog thinking it would be a document of Emma’s progress.  But in fact, this blog is a document of my progression.  I look back on entries made just a year ago and see how completely my ideas about Autism and my daughter have changed.  So much of what I thought and believed I no longer agree with or feel.  I have resisted the urge to delete all those past posts, because as horrified as I am by so many of them, I also know they are what I believed at the time.  My own journey is a reminder that we neuro-typical (not otherwise specified) adults can and do change, sometimes it just takes some of us a bit longer.

Me, Pascal, Richard and Em during our first “training” session

41 responses to “An Unexpected Response and The Importance of Trust

  1. This is a very good explanation of the process, especially that Emma did not suddenly sit down and start typing complete sentences. Perhaps some people do but I would think that exposure to other elements of language-based communication would precede that, whether a formal program or not.. Since most people are exposed to language-based communication most of the time, it could be anything, depending on who the person is.

    • Thank you Paula. I remember reading about someone who began typing to communicate and I assumed they literally sat down one day and just began typing these incredibly profound ideas. I then wondered when Em would do that. I kept hoping and waiting. But more likely they had been working up to that moment for many, many years.

  2. I love that you said “it’s a document of my progression.” This is how I feel when I write about my own child…..thanks for this.

  3. Finding people who are known to have successfully kicked ass on your specific problem to hook you up with knowledge and stand with you is pretty much why ASAN was needed and made. Em is so much farther ahead in the game of winning at life than I was at her age. Tears of joy overflow my eyes for her knowingness and your seeingness.

    • Thanks so much for believing in me Ib. Your assumption of my competence in being able to understand and “get it” have helped me more than you can know. Thank you for being such a rock of support for me. Thank you for being the one who said, “hey have you seen Wretches and Jabberers? You have to see it!” Thanks for spending all those hours and hours talking to me, advising me, explaining things to me and finally thank you for being my friend and sharing yourself and your life with me and trusting me enough to do that. 💞

  4. Chou Chou Scantlin

    What an exiting adventure for all of you. I remember not talking and never feeling bad that people talked around me, ignored me, and about me as if I wasn’t there. I had a tremendously rich internal dialogue, and was patient with those around me, just as they were usually patient with me. Good parent do everything possible to give their children their best chance at life. I love and admire you and Richard even more for this hard thing you are doing. Emma will bloom. Your love will make it so ❤

  5. Ariane
    Such a wonderful blog today, please do not delete all your other hopes and dreams for Emma over the past years, you are much too hard on yourself. You have toiled and toiled, there were too many forks in the road, now you finally seem to have found the correct one. Emma is such a darling, witty and willing creature and you are amazing how you lure her along. A bumpy year, and what an amazing ending. Love, Coz Tookie.

  6. That is an astonishing answer…I don’t think I ever would have thought of that.

  7. Arianne, your Emma is beautiful. You and your husband are awesome! The journey you are presently embarking upon is one of ups and downs but the thrill of the trust Emma is showing you is the first reward to receive from her. She will shine, Arianne, because you have given her – her voice. The tool of communication. Bless you for that and happier because you saw it working beautifully at AUTCOM. She has a great imagination from her story of Red Riding Hood and the logic is so exciting. Thank you for sharing. The joy of your new relationship will be a blessing. Pascal is a great friend and mentor.

    Jenn is presently being supported under her arm pit, does not want to be touched on her shoulder. She is on a mission for independence and she wil
    make it happen!

    Love your blogs. If we can reach out to you in anyway, just ask! Hugs to
    Emma and hugs to you and Richard.

  8. How hard was it not to tweet this out the minute Emma said it! Restraint has never been one of my greatest virtues, but I couldn’t steal Ariane’s thunder and jump the gun on her post today. Oh well…I JUST LOVE EMMA’S ANSWER!!!!

  9. It’s okay honey. You weren’t able to tweet this out, but you were able to join me in our excitement!! And that’s even better.

  10. I am beyond happy reading this!

    J has some language but I have a feeling that once he learns typing, his world will connect in ways that verbal language has not yet given to him. I am so, so happy (EEEEEEEE! kind of happy) that Em now has an instrument that can truly serve her and her vibrant inner life! What a brilliant answer with the wolf, I don’t think I’ve ever heard an answer like that to a mundane fairy tale question.

    I’m verbal (and some people may even imagine, a pretty good “verbal communicator”) — but the stuff I pull out of my inner world when I type is something I’d need at least an hour of verbal waxing with a trusted person to draw forth. I’m looking forward to introduce typing (not yet sure about FC) to J at some point and explore this as an additional way he can communicate.

    • Thanks Jane! I loved that she connected the wolf in both stories and came up with such a brilliant solution. Something I would not have done. The carry over, the ability to pull the two threads together… So great.
      There are some great apps from Grasshopper, that are fun and are pre-typing exercises that J might enjoy now.

      • What I love with Em’s answer is that it is completely grounded in RELATIONSHIPS. The relationship between the stories — the common character is the wolf, and Em traverses these stories and links them with each other as the most natural thing in the world. It is akin to “independence from field fixation” (not sure if I’m describing this phenomena correctly)!

        J has a comparable talent albeit with creation of physical objects — he sees the patterns and relationships of shapes and forms and he knows how to connect them — create new relationships between them to present a new idea.

        When given the right instruments, these children can surprise – stun – move me.

  11. ARIANE! The way you write about Emma rocks my socks!!!
    Her patience with you, her understanding of your limitations, her affection!
    I am so glad to have found your space and so thankful that you share so honestly with us!
    Sorry for the shouty caps, but not really because if you were next to me I would have shouted because I get excited!
    oxox

  12. Put a smile on my face!

  13. With two creative parents it’s not that surprising that Emma had this as a solution. Great that she had a way to communicate that to you though.l

  14. The absolute logic of this completely floored me, I’m completely impressed beyond words. Way to go, Emma!!

  15. You can take some credit I think. You provided her with both the exposure to the materials, and the means to communicate her ideas and were no doubt quite obviously impressed and astounded so yes you get some credit so please take it.

  16. What an outstanding problem solver that girl is!!! 🙂 You have tapped into a goldmine. 🙂

  17. All I can say is “Wow”, Ariane, and “wow” Emma. Or maybe I should say “EEEEEEEE”. I loved how Emma verbally said what was in her head as well as typed it. Emma, you have a great since of humor! And Ariane, you two are doing great together. Emma is so blessed to have you as her mom. I can’t wait for Kim to read your post.

  18. Too bad I don’t have a copyright on “Eeeeeee!!!!!!” and get royalties when people use it. Hahaha. Just kidding. I know so many Autistic people who do the “Eeeeeeee!!!!!” thing. Someone just sent me a cute video of her child Eeeeeeee-ing and flapping.

    • It is the perfect summation of a great deal of emotion!! Though I also like “hehe” but it doesn’t have the same exuberance as EEEEE!!!!! and is far too low key for circumstances that only EEEE!!! can do justice to.

  19. I like this a lot! Thats an excellent ‘thinking’ answer.
    I’ve been reading your blogs about FC and am quite intrigued now, and really looking forward to seeing what Emma does next.

    • Thanks for saying this. I just wrote a new post. I have trouble conveying both the belief and the shock at seeing those beliefs reinforced. I don’t know how to describe it. I keep trying though. I’m interested to hear another’s opinion as it’s a tricky balance to describe my excitement and surprise, while also describing my faith and belief that she knows so much more than she is able to communicate. I don’t know that I’m able to describe this adequately or even well. I am interested to know how it comes across to you though!

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