It's been too long since I've written here. Facebook has kept most of my readers up to date, but i want to keep this space current as well. As Sophie is growing, and our perspectives are shifting (such a teaching journey, this is), we are not only increasingly at peace with Sophie's neurology, but learning so much from her about ourselves and perhaps life in general. I read a book recently which I have been reflecting on. As you can see by the title of this post, the book was "Ido in Autismland". It is a journal-like memoir of a nonverbal autistic boy, which he wrote when he was between the ages of 12 and 15.
I find reading memoirs of autistic people, especially ones who use alternative means of communication to be enlightening. Obviously at this point I can't know for sure what Sophie is thinking, but understanding how her brain processes information is very useful in being able to relate to her. Observing her myself, I have formed some theories already and reading ido's memoir confirmed some of them.
I know that in the general autism community it is a somewhat controversial topic that nonverbal people are able to communicate with intellect and deep insight into their situation. At best, people dismiss those that do as exception to the norm, at worst as straight-out fakes, manipulated by idealistic parents. However, with the current accessibility to video technology, more impossible-to-dispute videos are becoming propagated, including that of Ido himself. But I'm not here to "prove" whether that is plausible, realistic or even common. I trust all my readers can form their own opinions, I am just sharing my own feelings.
Reading this blog you know that communication is my number one goal for Sophie. Now whether she remains at the level she is now of "watch Jack watch Spencer watch Arthur" and occasionally "juice box" or is able to eloquently express poetic reflections on the human condition on par with Emma, that remains to be seen. I have a feeling though that she will acquire a rather impressive vocabulary because I see that mischevious twinkle in her eye when the app is opened. She really likes communication and I bet has loads to say!
Anyway, back to Ido. The first thing I noticed about the book is that the tone is genuinely that of a young boy. In the beginning he was quite bitter and it showed through the sarcastic asides. Of course one can hardly blame him for feeling resentful, as he was not only without a means of communicating for the first seven years of his life, but was also often discussed in his presence as if wasn't there and in not at all accurate terms (he heard himself be referred to as not comprehending, unable to perform and failing to make progress). I'd guess we would all be just a tad bitter. However, in a precociously mature fashion,he frequently reflected on those feelings and aspired to move past them or see them in context. There was a lot of grace and forgiveness for everyone whose intentions were good, if misinformed.
When Ido described how difficult it was (is) to make his body do what he wants it to do because of oral and body apraxia, it made me think of Sophie. I know that she has this problem too. Actually I often say that her biggest problems are motor planning and spatial awareness, along with initiative. Ido's insights on those topics were invaluable. Like this quote (Body Apraxia, December, 2008):
I understand everything but sometimes my feet interfere with my thoughts. It's like apraxia in my body. I want to say "no". My mouth says "yes". I want to go to my parents' room. My feet go to my room. This is a terrible problem because then people assume I don't understand basic information. It has happened many times over the years.
For me, it's not hard to see that just because Sophie can't carry out a seemingly simple instruction, it doesn't necessarily mean that she doesn't understand it, or worse yet, that she is "defiant" or "in her own world". I know her brain filters out information in a different way than mine. She always finds little ways to show us that she is in fact "here" with us. But Ido was drilled over and over in ABA trials which only underscored all the ways his body was failing him, by making him point to objects, pick up objects, manipulate cards, and so forth. Add in stress and it was physically impossible for him to do these tasks and crushing to his self-esteem. He said at one point he began to lose hope.
Of course for many neurotypicals (or people without this level of disability) it might seem incredulous- if he was intelligent and self-aware, if he could read, why didn't he signal sooner? Why didn't he yell, grunt, point, write, type, ANYTHING, even just "I am here-help!" I think that is where the limit of our own neurology comes in. We cannot imagine a brain so different than our own, that everything that we take as "fact" and "common sense" in fact is not. I suspect we will never really understand (short of acquiring some form of brain injury) what its like to process thought, movement and sensations in a way like Ido does (or perhaps Sophie does too). Some things he had to say about that:
I know my thoughts are getting lost on the way to my mouth (Apraxia misunderstood, December 2008)
I don't know why initiating is so hard (...) If someone tells me to, I'm able to react; otherwise I'm stuck in my stupor (Initiation Disorder February 2009)
If I have my eyes closed I don't know where my hands are (Proprioception, march 2009)
It's like my senses mix together (...) I see qualities in people like color. (...) I also taste objects (...) their taste is as obvious to me as their appearance. (..) if I hear notes in music I see each note visually. (Mixed senses, February 2009).
I don't want to quote anymore from the book before I give it all away. I can't recommend it enough, and I think it's a very worthwhile read, especially for parents or educators of nonverbal, severely autistic children. Every little chapter gave me something to ponder and reflect upon. Ido also runs a blog which you can find here. These days I am grateful that I do have access to so much varied reading material to educate me, although Sophie does a pretty good job of that herself - she amazes us everyday.