Archive for the ‘asperger’s syndrome’ Category
When you don’t like being touched by strangers, but you also kind of want to meet the President. Pudding did an awesome job!
We have another milestone, friends. Pudding is learning to tell the time. Pudding had no interest in learning how to tell time for…well, for some considerable time. We’d tried using her special interests, visual timers, crafting our own clocks, workbooks and ordinary telling time books, toys, apps, and any possible thing I could think of.
But it wasn’t her focus. I was looking at seconds, minutes, and hours, and Pudding was more fascinated by days and months. While I was busy in the details, Pudding once again took me by surprise and approached time from another angle.
Last June we met with a new doctor. Pudding asked him his birthday (and will now always remember it), and then she let him know what day it fell on. And then surprised us by knowing every date we asked her. She appears to have an exceptionally accurate mental calendar (and seems equally frustrated that the rest of us don’t!).
So now, days and months not only had meaning, but were meaningful to her. We add our activities to the calendar as much as we can.
But language, as always, was still confusing. As we cuddled in bed at the end of the day, Pudding would ask, “What are we going to do today?”
So’d answer that we would do nothing more today but go to sleep. And tell her what to expect for tomorrow, as much as we ever can.
One day last month, Pudding rose in her early-bird fashion, and reminded us that she was going to a party. Ah yes, I told her, but not yet, not for a long time. Later. At 3 O’Clock.
And for some reason- that may or may not have to do with delicious birthday cake- this time, she wanted to know more. I’d show her my clock and tell her when the little hand was counting down the hours…8,9,10,11,12,1, then, 2, then time to go.
We found a Hello Kitty watch that happened to have hands with different colours. She wanted to wear it, and would answer when I randomly asked her the time.
This week, Pudding was finding school tougher than usual. On Monday I collected her earlier, but after that, I asked her aide to use this new tool of time to help her get through the day. I’d remind her that I’d be there at 1, and she could see on her watch how close that would be. Her anxiety dropped away, and she could once again focus on her schoolwork. Not with ease, but with practice.
This incredibly useful tool that gives her more control to navigate her day independently. She doesn’t have the precision yet with telling time that she does with knowing dates, but I know we’ll get there soon. As useful as it is, this isn’t a milestone that could be hurried along the way. But like all the others, we’re getting there in her own time, in her own way. And not a second, minute, or hour before we need to.
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.