Two weeks until our big move, and I’m in the midst of what is by far the most laborious task of moving: sorting out the paperwork. This time around is extra challenging. Previously when we’ve moved, our air shipment has followed us around a week later, and the rest of our belongings our shipped after 2-3 minutes.
This time though, we’ll be heading to the states for two months, and even after we arrive at our next post, we can’t receive our belongings until after we have been accredited…some 4-6 months later. Which means we could be looking at 8 months without the filing cabinet that purports to document our lives.
So you see, the challenge of forgetting to put the right piece of paper in our luggage could be pretty critical. The problem is, paperwork is never critical until you don’t have the right one. Marriage and birth certificates are always essential. As is my naturalization certificate and our immunization records. Do I really need that reference from 10 years ago? This paperwork is taking up too much space in our already crammed luggage, and weighing us down.
And then the most critical, but cumbersome paperwork of all: the kids’ psycho-educational reports and school paperwork. Five years and two kids is easily filling two boxes, and yet, hardly capturing them at all. Because what kind of evaluation can ever capture their joy, resilience, sensitivity, and adventurous spirits? Qualities that aren’t necessarily required in the classroom, but certainly are helpful outside of it.
As I read through Pudding’s past reports, one thing keeps striking me. Each contains a sentence along the lines of “…doesn’t reflect an accurate measure of cognitive ability.” And yet, international schools, not bound by law to accept children with disabilities are always searching for those cognitive skills as evidence that a child can measure up to their peers academically. It is the reason we keep testing- to check that we are not failing her, tweaking her supports and interventions as necessary.
But if they aren’t an accurate measure…aren’t they just paper? Weighing us down.
A few weeks ago, we got some different results. Pudding’s support teacher administered the Woodcock Johnson III. A useful measure for us, because she has had this test before, and comparing Pudding to her own self has always been more meaningful than comparing her to her peers- at least in terms of deciding if our interventions are working as hoped.
These new results, however, show a dramatic improvement in her written language skills. Her mathematics and calculation skills are average, but compared to her peers she shows superior academic skills when it comes to reading, writing, and spelling.
And these results are truly amazing, more evidence that inclusion (with the right supports) is working for her. Evidence that we need to have, in order to convince international schools that she has a right to be there.
But they also add to the confusion. How will we support these strengths as well as her weaknesses? Or were we somehow already doing that without trying? Who knows. It is hard to think about these things without it adding to this constant weight- which always feels more burdensome at moving time- are we doing the right thing?
Like every other piece of paper, it captures just a tiny aspect of her. It is no more a description of her than anything else that goes in the filing cabinet. One interesting fact to add to the others, just like that her birth certificate is written in Luxembourgish.
While we ponder on the data, I’ll do what I have to with this the same as most of the other papers- scan it and save it in digital form. That way we can keep it, consider it, yet not let it weigh us down.
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.