“Look! Motorcycle bubbles!” This was a phrase Emma used to say often. It was an all-encompassing phrase that was both a metaphor for rain and the Fourth of July and New Years Eve fireworks, as well as a descriptive phrase of what both are like sensorily for her. (Emma has verified this is true.) “Motorcycle bubbles” meant rain and fireworks, but there was so much more to those two words than simply pointing out the window and saying, “Look! It’s raining!” or “Look at the fireworks!”
When I went back through this blog to find the post I’d written about motorcycle bubbles, I found these, “Sorry Bubbles” and Em & The 4-Wheeler written more than two years ago, that I’d completely forgotten about. “Motorcycle bubbles” and her related phrase, “Sorry bubbles” are nothing short of poetic. Poetry is all about using words in unusual, unexpected ways, “Sorry bubbles” Great art evokes an emotional response within us. While, a few years ago, I was appreciative of the beauty of phrases such as “sorry bubbles”, I was even aware of the emotional tug I felt when I heard her say those words, that appreciation was tempered by worry and concern about what I believed the larger issues were for my child who said such fascinating, yet cryptic, words.
I no longer feel the strain of worry and concern, but rather delight in my daughter’s obvious brilliance and poetic gifts. I am grateful to have gotten to this place of appreciation and joy. So many autism specialists and so-called treatments did not and do not appreciate the beauty of those word combinations. So many believed they were aberrant, meaningless words that must be righted through rote learning and repetition of more “appropriate” words. Which was code for “use these conventional words, so that we can understand you more easily. Make our lives easier. Behave in ways that do not draw attention to you. Be like everyone else.” And all of this was done under the guise of “helping”. Meanwhile “motorcycle bubbles” and the like would be bulldozed, covered with the dirt of more conventional language.
People argue that our children need to learn to “fit in” that it is our job to teach them these skills and to not do so is to be negligent or (at the very least) unrealistic about life and the world. But for those like my daughter, asking her to spend so much of her energy and time to try to change the way she moves (were that even in the realm of possibilities), forcing her to give up her string (which marks her as different), trying to get her to substitute her string for a more “socially acceptable” object, teaching her to swallow her verbal utterances that to others seem nonsensical, forcing her, every time she said anything, to repeat a more conventional way of speaking, even if all of this were remotely possible, I ask WHY?
Why would we do this? Why is all of that more important than giving her the freedom, support and encouragement to be her unique and beautiful self? Why is quelling her natural tendencies so desirable? Why is tamping down her poetic phrases, replacing them with more standard, “accepted” speech preferable? Why is all of this considered desirable given the massive toll all of that takes on her? Even if she could do any of these things, even if all of it were obtainable goals, how exhausting, how bone-numbingly frightening, how terrifyingly isolating it would be to grow up believing that everything about you was fundamentally wrong.
I’m not interested in grooming my child to be something she is not, demanding that she be someone, that even if it were possible for her to attempt, would make her feel awful about herself, just so society could feel better about its own mediocrity. I’m not willing to do that. The only thing I care about, the only thing I’m interested in, is changing society’s views and the only way that’s going to happen is by countering what is considered the “norm” and saying, NO! I’m not going along with it. NO! I am not going to raise my child to be compliant or train her to say what you want to hear or try to force her to move in ways that society has deemed acceptable. I will not model compliance for my child to imitate. I do not condone censorship that would bury “motorcycle bubbles” and “sorry bubbles” forever.