Happy New Year!

I haven’t written anything in this new year mostly because — at some point in 2017 — my life became insanely busy.

Pink Cup Sister, who has a learning disability and a social anxiety disorder, now has the symptoms of a severe tic disorder. This disorder includes vocal, phonic, and motor tics, the latter of which pose such safety hazards as uncontrollable self-injury and episodes occurring where falling is a possibility.

Unfortunately, I have uncovered a health concern of my own as well involving my vision/optic nerves.

Now, Frances and I have always had an amply full schedule of appointments that has kept me very busy; with the added appointments of Pink Cup Sister and of myself, well, let’s just say that appointments are now my full-time job.

But that’s okay — it means that things are getting taken care of, challenges are being identified and overcome, and matters are being addressed in general.

And, fortunately, amid all the worrying and the hurrying, there are some moments that catch you off guard, ones that leave you breathless and utterly aware of how much there is to appreciate.

Perhaps you won’t be surprised to learn that it is often my children who gift me with these moments; in the case of Frances, the gift is often in the form of questions that allow me a glimpse of how amazing her brain is.

The other day, while I was taking her to school, the following:

Her: Did you ever realize that, if everyone just followed the rules, there would be no drama in the world?

Me: You are SO right!

We then, giggling, ran through the zebra crossing while stepping only on the black stripes, just because, and I felt light and giddy and free of concerns about the year ahead in that moment.

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Over the edge

Frances has a very dry sense of humour that appears at really funny times.

For example, every weekend, she and I have a sleepover: we usually camp out in a fort in the living room, watch a movie and eat popcorn.

Recently, my bed was the site of the sleepover, and I found myself often teetering on the edge about to fall off because she kept moving closer and pushing me. I even fell over once.

When I mentioned this to Frances, she simply said, “Well, they say if you love something, you should let it go.”

So, she was letting me go over the edge?

😂 

Periodic update

One fascinating aspect of 10-year-old Frances’s personality is that she remembers facts so well and that she shares them kind of…randomly.

For example, the following recent conversation was brief but interesting:

Frances: The atomic number of copper is 29.

Me: Okay, thanks.

There was no preceding conversation. We just happened to be passing each other in the hallway, and we both went our own way afterwards.

Part of me knows that I’ll have to help her understand that she can’t start conversations like that with, for example, someone walking past her at school; another part of me does find it adorable.

🙂

Decoding gestures

For anyone who struggles with the meaning of gestures (such as pointing, request for handshake, etc.) the world must be difficult to decode. For one thing, their meaning varies from culture to culture; for another thing, the different contexts in which a gesture appears at different times, or should not appear, within the same culture can be very subtle.

The okay symbol that we know in Canada and the U.S. — thumb and forefinger touching while three fingers are raised (👌) — came up in conversation after Pink Cup Sister sneezed rather forcefully in the car one day.

Frances: Are you okay?

Pink Cup Sister: (uses👌 symbol)

Frances: I don’t know what that means.

Pink Cup Sister: It means I’m okay.

(Frances struggles to imitate her sister using her middle finger instead of her index finger.)

I think this is where ageing can make features of HF ASD more distinct. Most children without ASD will probably know this particular symbol (👌) by ten-and-a-half years of age.

But I can remember when Frances was five years old: she looked puzzled as one of Pink Cup Sister’s friends held a hand up to signify a high-five was being requested of her. At that point, Pink Cup Sister took Frances’s hand and high-fived the friend. Before any diagnosis was sought, I remember wondering if perhaps a five-year-old would be expected to know the symbol for a high-five. I wasn’t sure, but I suspected so.

When she was six, and visiting with her developmental paediatrician, I remember the doctor telling her that he needed to put batteries in the train that she was holding. He held out his hand, and Frances just looked at it and then continued to be interested in the train. He repeated that he needed to put batteries in the train and kept his hand extended toward her and the toy. She didn’t pick up that cue, and I realized that she didn’t know the gesture and wondered, then, too, if she would typically know it at her age. (I silently suspected that a child of six would usually respond by handing over the train.)

Not long after, Frances was diagnosed with HF ASD based on psychometric testing and lengthy physician-observed appointments. The diagnosis wasn’t a surprise to us, but certain features of ASD were only just becoming apparent or hadn’t even yet been revealed. 

It was becoming clearer to me that social difficulties could be quite profound and that they involved more than the verbal interaction with which she was (and is) struggling.

But now, as I listen to her play a passage of the Moonlight Sonata perfectly and with great sensitivity, I can hear her communicating using her fingers in a way that many her age could not yet manage.

Certainly, gestural and body language challenge her— such as when people point to instruct or inform Frances — but she thrives on decoding the language of music (whether by ear or by reading notation). 

And when she plays the piano, it seems as if she is encountering something mysterious and interpreting it for us using a beautiful and clear form of communication that she intuitively understands.