First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.
Emma ended our presentation by singing one of her favorite songs, You’ll never see me again. We uploaded this separately and changed it from “public” to “unlisted” as someone has already given her singing performance a “thumbs down”. As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.
We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet. In the meantime here it is, though this link may only work until we’ve made the new video.
As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause. This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time. In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.
This morning I was reminded of how Emma, when asked, “How old are you?” will, without hesitation and in a matter-of-fact voice, say, “Nine.” If I give her the keyboard she will then type, “I am 12.” When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.” She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”
I asked Emma if she was willing to say more. She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all. Words pouring forth like water after a dam break, do not pay attention to me. I am so used to it I no longer fight. I dread the smiling talkers who insist on spoken language as proof of being and serious thought. Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”
I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”
I often think about that first time I saw someone who was unable to express themselves through spoken language, but who spoke through writing. There is nothing quite like seeing to believe or at least to begin to believe what many of us have been told is impossible. So I’ve compiled a few Youtube videos of different people who communicate the way Emma does. A couple of them show people who have graduated from the laminated letter board and now type independently on a stationary keyboard. This is our goal and what Emma is working toward. For those who may feel someone holding a laminated letter board is cumbersome and suspect, please keep in mind the letter board is a stepping stone, which all hope will eventually lead to full independence.
“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.”
At the end of this terrific post he writes:
“Thousands of autistic people like me live life in isolation and loneliness, denied education, condemned to baby talk and high fives, and never able to express a thought. The price of assuming that nonverbal people with autism have impaired thinking is a high one to families and to people who live in solitary confinement within their own bodies. It is high time professionals rethought their theories.”
Ido wrote a book with the same title as his blog – Ido in Autismland. I cannot recommend this book enough and have written about it before ‘here‘ and ‘here.’ It should be required reading for all parents with an Autistic child as well as anyone who is considering entering or is already in the field of special education and/or autism.
This second Youtube video is of a boy who writes a letter to his church.
Jackie Dorhurst is a speech/language pathologist shown here working with Gavin. Jackie has an organization called RPM+ located in Wisconsin.
This next video is of my friend Sue Finnes’s son Chris. Sue has a wealth of videos that she’s posted on Youtube over the years of Chris working with a number of people whom she’s trained to work with him.
And finally this video is of another independent typer, Mitch Helt who writes a letter to his aide.
This post was inspired by a comment from Ari, who has a wonderful blog, Pixie Perceptions. You are not alone Ari. Doing all I can to make sure others realize this…
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…