The strangest experience I’ve encountered with my daughter is seeing her work with someone like Soma Mukhopadhyay or Rosemary Crossley or Pascal Cheng or Harvey Lavoy. I don’t know that one can ever really be prepared for the flurry of emotions that threaten to overwhelm as you sit and watch your non fluent speaking child write profoundly insightful things, show their vast intelligence and knowledge despite having had almost no formal education and what little they’ve had it was most definitely not anywhere near what they are capable of or even at age level.
To watch them so easily converse through writing, or what looks so easy as I sit witnessing… it is like nothing else I’ve ever experienced. The only thing I can liken it to was when I was eight years old and my older brother told me that the universe was infinite. I remember saying that couldn’t be true, that it must end somewhere, and he looked at me and smiled. Then he asked, “if it ends, then what’s on the other side of the “end”? And I sat there mesmerized by this idea of infinity, trying over and over to imagine what that looked like, and my mind coming up against the impossibility of this concept, so conditioned, already at the age of eight to think of things as being limited.
So inevitably, after we return home from seeing these various people, or after they pack up their things and leave, I am filled with optimism. After all what we’ve just witnessed fills us with hope and the future, our child’s future is limitless. Every time, without fail, I am filled with astonishment that my daughter isn’t enthusiastically and cheerfully typing or writing her opinions and thoughts about things with me. I’ve discussed this with my husband, I’ve spoken to close friends, I’ve talked to other parents and always it is variations on this story. The incredulous parent with the child who does not seem overjoyed with the idea of continuing to do this all the time, or even any of the time.
At first I spoke of it as resistance, but that puts the onus on my child and I’ve learned to be very careful with words like that, they are far too close to the whole, “you just have to try harder” idea, which I know both for myself and for her is detrimental. This isn’t about trying harder, this is about how difficult communication is for someone like my daughter. Just because she can communicate through typing or pointing to words on a stencil board, does not mean it is easy or simple for her. Just because I am filled with enthusiasm does not mean it isn’t hard work for her. And so I have to acknowledge how hard this is.
I’ve thought of it as akin to the difficulty I have in learning a foreign language, but I’m not sure that’s really a great analogy. To me, the idea that she can communicate in any form is just fantastic news and to my thinking why wouldn’t my child want to grab that and run with it? And then I thought about meditation or exercise or eating foods I know are good for me and how I know my day will go better if I do these things and yet days will go by and I don’t. Perhaps it is more like that. Perhaps the importance I place is not the same or maybe importance isn’t even part of the equation for her.
What I’ve noticed is that I feel tremendous fear trying to replicate what I’ve witnessed. I worry that I will do it wrong, that I will inadvertently hurt her or make a mistake that will cause her upset. I worry that I will make what is already difficult even more so. I am also aware of how I do not want to be disappointed. I do not want to feel those feelings of hope and expectation dashed and the inevitable feelings that then follow, which are often doubt. Was it all a dream? Did it really happen? Could it be it was just that one time? A kind of burst of brilliance, never to be seen again?
I have had dozens of these moments over the last year. Dozens of times when I have doubted what I just witnessed. Dozens of times when I’ve thought – I won’t be able to do this. I’m too invested, I’m putting too much pressure, I can’t do it, I won’t be able to, I’m not cut out for this kind of work, I don’t have the patience. But what I see over and over is that I do and I can. I have to go slowly, I cannot expect to get the results that people who’ve been working with non-speaking Autistic people for decades get. I have to begin with simple options. In supported typing they have a “ladder” of communication and new supporters must begin at the bottom rung, not because the person they are supporting isn’t capable, but be cause they are not, not yet. With Soma’s method it is similar. One begins with choices, and from there fill-ins and slowly, slowly as one becomes more confident, as trust is built, I will move to increasingly open-ended questions.
All of this requires patience. Patience with myself, patience with the process, patience with my child. Patience. Showing up and being in this moment without expectation. Patience with my limitations. Patience with my inexperience. Patience with my limited thinking that is slowly, slowly expanding to embrace the unknown.
Today Emma is sick and so is home from school. I asked her what she wanted to discuss – poetry, a story, or Buddhism. She wrote, “buddhism.” The irony of her choice is not lost on me…
Emma's Hope Book 