When Time Stands Still

After publishing yesterday’s post, “So Many Kids Are Just Like Me” I added a video of Emma writing those words and more.  I hadn’t added it when I first wrote the post because Emma hadn’t given me permission yet and we were still trying to get the video uploaded, ran into problems with the picture being condensed and other issues.  In any case, for those who want to view it now, you can.  On a personal note, I’ll just add that this video makes me feel very squirmy because it does not capture the playfulness we usually have together, and I’m hyper aware of the anxiety I was feeling while we were taping…  Also the video does seem to be taking longer than it should to load, at least it is on my computer, but Emma has said she’d like to tape more, so I’m hoping we will get better at uploading as we continue.

My friend Alex commented on yesterday’s post about the impact of watching Emma write, as opposed to reading about it.  It was exactly for this reason that we decided it was important to post the video.  There is nothing like seeing in real-time another person writing this way.   No amount of words, no matter how well phrased can describe this process the way watching it in real-time does.

I will never forget that moment at the Autcom Conference in 2012 when I watched a boy, younger than Emma is now, write such insightful and profoundly wise comments  that his mother then read out loud during a presentation.  It was that moment when I thought to myself – maybe, just maybe my daughter has thoughts like this, and we just have to find a way for her to express them.  It makes me cry with gratitude thinking about that moment not so very long ago.  No one could have convinced me then that just a year and a half later we would be where we now find ourselves.

It is inevitable that there will be people who say things like, “well it takes too long” and  “how can this work in a class room?”  But as a parent who has wanted nothing more than to know what my daughter was thinking, who believed despite what the majority of people believed and were telling us that maybe, just maybe they were wrong, watching Emma write is when time stands still.  The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced.  Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops.  It is a sensation like none other.

To my daughter, who works so very hard to accommodate my need to hear her experience of the world put into words, I thank you.  Every single time you do, even though you feel it’s tedious, I thank you.  Gratitude does not come anywhere near my feelings.  There are no words for this.  And I know this is a tiny glimpse into what you, Emma, feel every time you are asked to put into words your thoughts.  Words can’t come close…  finally I understand…

Em & Ariane on New Year's Eve ~ 2013

Em & Ariane on New Year’s Eve ~ 2013

12 responses to “When Time Stands Still

  1. “Watching Emma (write) is when time stands still. The excitement I feel when she begins to point to a letter is like nothing I’ve ever experienced. Each letter she points to is a tiny gift wrapped in beautiful paper, as the paper peels back to uncover the word inside the world and everything in it stops. It is a sensation like none other.”

    Wow! How beautifully phrased this is Ariane. I feel exactly the same way every time I watch her write. Every letter of every word is a wonderful gift. As she is a gift. As you are a gift.

  2. The last two paragraphs had me sobbing. You’re such a beautiful person, Ariane. And, Emma is just inspiring beyond measure. I often look at what you and Emma are doing and think the same thoughts you thought of while witnessing that young man and his mother at Autcom. I often wonder what it is that my Mia has to tell the world. Someday, thanks to Emma, I’m sure Mia will get there. Your families courage is (honestly) my families inspiration. Emma needs to know, if she already doesnt, that at her young age she has already helped more people than most!

  3. This is lovely, and wonderful for all of you.

    I saw part of the movie “My Left Foot” recently(about Christy Brown http://www.imdb.com/title/tt0097937/) and I was really struck by the whole part when he was a child, before he could talk, before anyone knew there was an active, thinking, creative mind in his body (Cerebral Palsy left him able to only control his left leg). How everyone (except mom) assumed he was “simple”, his struggle to communicate, was so striking, and easy to parallel with the struggle that autistic people also often face. I thought, wow – if it’s that difficult for autistic communication – I’m stunned – to have to work SO HARD for ONE word!

    And anyone that says “it takes to long” or “how will it work in the classroom” has major issues with perspective.

  4. I know these feelings very well. But you say them beautifully here. I am so thankful — every single day. Thanks to Emma and to all those who walk the same path!

  5. Beautiful. One of my last classes in my major is Behavior in the Classroom for students with autism, ADHD and Bipolar–having never been a teacher, and decidedly leaving my own “autism” behind about 20 years ago to try to “make it out there”–I wanted to learn what is going on in the classroom. I had instructed autistic children on horseback for three summers, and had seen children from one particular school system who were being forced through a chute to become assimilated and “act normal”. It was considerably overstimulating for them, and hard for me to lasso them back in to themselves.

    One of my assignments is to post two videos of things I would consider for my classroom (which is going to be a private ranch–equine based program which focuses on developmental aspects FIRST, and then is the foundation for learning in a classroom… anyway, I chose the video of Ariane and Emma–it came just in time for this assignment. I had written in the previous assignment about RPM and found the videos on Soma’s web site, but when I found Emma working on the board, I was so glad. I am following your blog most closely because I clearly remember the problems I began to have when Em’s age, with puberty and the inability to produce hormones–I really had a mostly physical involvement since birth with the autism beginning to show about 15 months of age. Now, 40+ years later, no one would immediately recognize me as autistic, although they would say there is definitely something about me they can’t quite peg.

  6. What’s interesting to me is that, after all your descriptions and Richard’s descriptions of the slowness of the process, the video went much faster than I was expecting. After the descriptive preparation, I watched it, thinking how Emma was racing along!

    Maybe for a future video, don’t reveal the words first? Let us “discover” what Emma is writing as she goes, instead of already knowing beforehand? I think it would be more exciting and fun to watch that way!

  7. Emma, I want to thank you for showing us in a video how you write. I showed the video to my husband, who has a bad habit of assuming Jaymes can’t understand and doesn’t have thoughts of his own, and it blew his mind. We talked about it, and his beliefs have changed completely. He is finally understanding that there really are more ways than talking to communicate, and he is looking at Jaymes with totally new eyes. I know it sounds obvious that he should not assume Jaymes is “simple” but unfortunaely that was the way he thought. I feel like a huge weight is lifted off me, seeing his new outlook and the new way he looks at and talks to our son.

  8. She’s doing really great! Most of the other people I’ve met with similar communication styles are slower on the board. Speeedy Emma! Very cool. And anyone saying she goes too slow is ignorant.

    _

    Emma, you’ve come so far with this, and I can’t wait to see how your writing progresses over the next few years. 🙂

  9. The speed of communication is irrelevant when considered against the wonder of receiving the thoughts of a fellow human. There is a magic to it that we who do not face significant obstacles in our communication so often take for granted. Emma has helped me to truly appreciate this gift. Thank you.

  10. I cried watching Emma’s video! She is giving me so much hope that I will be able to communicate better with my 5 year old son. There are so many things I wished I knew about him. We are doing an AAC assessment now, and praying that we can find the best way for him to communicate with us!
    Thank you Emma for allowing your mom post your video!

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