Cubby was sharing with me about his day at preschool. They’d read Mr. Daydream, one of the Mr. Men books, and he was confused as to what a daydream was. I came up with some kind of explanation, painfully aware that I seemed only able to describe such an abstract concept in terms that were just as confusing.
By way of demonstrating that he got it, he let me know about a few things he daydreamed about…his birthday, going into space, being a fighter who fights for sport(!), and so on. Yep, he got it.
Then I turned to Pudding, and tried to engage her in the conversation. I wanted to know what she daydreams about. This has a 50/50 chance of success these days. The topic must be of interest to her, and she must be in the mood for talking. Her receptive language is undoubtedly better than her ability to express herself, but on abstract topics, there is less of a chance of her understanding.
I really, really did want to know what she daydreams about. So I waited. I gave her the room to decode my words, then decide if she wanted to respond, then figure out how she could respond. Barely a few seconds, but a length of time that still feels unnaturally long for someone without these challenges.
And then she gave her response, and as always- it was worth waiting for.
I daydream about bake sales.
Because she does. She was thinking about the boy scout doughnuts for sale at school that week. This girl loves her sweet treats, and they were on her mind. Even this most simple sentence is years in the making. It has taken effort on her part, patience on mine, many sessions of speech therapy, and even more time.
But it was worth it, because finally, if I want to know what is on my girl’s mind, I only need to ask. And I’ve been daydreaming about that for years.
It seems every year, at this time of year, I’m torn. It is World Autism Awareness Day. Again. Our fourth since Pudding’s diagnosis. Those years have seen a shift in me, the way I perceive autism, and the ways I want the world to acknowledge this day of awareness, or this month of acceptance.
It has been a quiet few months on my blog, but a busy few months in our lives. We’re facing another international move, another continent, and the process of withdrawing from one set of supports, and establishing a whole new set. We’re reevaluating what works and what doesn’t. What is responsible for her progress, and what else we could add to the mix to enhance it.
And yet, for a time of such changes, life has been incredibly stable. For the first time in years, I think our family doesn’t seem so different after all. We work, go to school, read books, go swimming, go on vacation. We live, just like the rest of them.
Perhaps because we have found (or created) a place of inclusion and acceptance, I don’t feel the fire of awareness that burned me these last few years. I don’t feel the need to light my workplace up blue, nor even my home. Blue isn’t our colour any more.
This awareness thing, it burns on, even without my kindling. Here in South Africa, it is more talked about, more public each year. For the first time, Cubby’s preschool became involved in World Autism Awareness Day, and he was asked to dress in blue, and send in a donation to Autism South Africa. And all would have been well if it ended there.
But in his eagerness to tell me his duty, he mentioned that the money was needed for, “the children who are sick with autism.”
And that was when the awareness hit me again. The awareness that if I’m not the one talking to my children about autism, they’ll get their messages elsewhere. And while those messages may originate with the intention of fund-raising, or raising the charitable profile, they aren’t the right ones for us. Those messages are hurtful, not just for my child, but for the adult she will one day grow into. To a community that she already belongs to.
My girl isn’t sick. She isn’t even all that different, or her differences aren’t that great. Are they? She is just one of us. One of the things I most appreciate is how happy she is in her own skin. She loves who she is, and she dares all around her not to feel the same way.
One day, inevitably, she’ll become aware of her differences, and how the world perceives her because of them, and I need to make sure that I am always aware of what messages she receives, and that we are giving her the right ones. Even when I don’t feel it is necessary, I’m aware that it always is.