Something to consider…

Frances has officially finished Grade 5. Her report card was excellent, and her teacher described her as “witty and sassy and delightful.”

Frances’s teacher and I actually discussed my child’s humour which she described as dry beyond her years. It often does catch me (and her teacher) off guard.

Take, for instance, the other evening. Frances and I were watching one of our favourite documentaries about a specific tornado — which she takes very seriously — when, during the segment of interviews with people who experienced the destructive event, her brows furrowed and she asked:

“Why do they keep putting ‘Survivor’ under their names? It’s not as if they could have used dead people…”

I’m so glad I wasn’t eating at that moment because I would have choked!

Anyway, she truly meant no disrespect — it was merely that the editing of the video had struck her as illogical and, therefore, funny.

And, well, I am still laughing…😂

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Growing up

I haven’t been posting much recently because I’ve been so busy attending to Pink Cup Sister’s needs, but also because it’s difficult to write about some things.

For example, Frances is acutely aware that her school mates are “growing up” and she thinks that she may be just as young socially as she was when she first started the school back in 2012 at age 5.

This isn’t accurate, but that’s how she feels. She actually has grown unbelievably, in leaps and bounds, from the little girl who never acknowledged people speaking to her and who never looked at anyone, into a young lady who is passionate about all things equestrian and very comfortable with the people whom she knows.

She is definitely older intellectually than her 11 years by quite a few years, and, yes, a little younger socially: she still wants to collect and to play (yay!) with horse dolls, while her school friends move into the more frequently seen middle-school behaviour of standing around while chatting on the school ground during recesses.

So, she’s gone from the little girl who didn’t want to/know how to play with other children to an older child who wants to play and usually has no opportunity to do so.

Recently, while at a horse show, we were surrounded by the people we know–her coach, the stable owner, other riders and parents–from the stable. Frances, though hoping for someone to play with, announced, “I don’t understand non-horse people,” and everyone said that he/she understood this very well. She then said, “I’m a ‘me’ person, not a ‘we’ person.”

But nobody agreed with her. I put my arms around her (because she sometimes allows me to do so), and I said, “I don’t know about that. These are your friends; these are your people.”

Maybe they don’t play anymore, but they all love horses and “the horse life”, too. We all share an understanding of what it’s like to muck around in dirt; we all know the physical labour involved in loving horses (some of us more than others). At that moment, the feeling of camaraderie was palpable in the spectator stands. I think she noticed as everyone was smiling.

As we fell asleep during our weekly sleepover, I confided: “Mummies and Daddies get a little sad when their children stop playing with toys. I hope you’ll play with toys for as long as you want to even if you only have yourself to play with.”

This seemed like a good idea to her, and we drifted off to sleep while the intense heat of the day eased off and a gentle breeze made us feel better about a lot of things.

Um, no…But yes, absolutely

Frances: Sarcasm — isn’t that just lying? (Nov. 17/17)

People with ASD can experience difficulty with figurative language. What I have discovered is that “not understanding” can, in a sense, mean “just getting to the bottom line” of the matter with Frances.

Ordinarily, she has difficulty interpreting euphemisms, idioms, gestures, etc. Here, her struggle appears to concern purpose or utility: Why would one use sarcasm? Why does one, oftentimes, use sarcasm as humour? In other words, why is it considered to be funny?

It’s really amazing that, even though she struggles with non-literal language, she is very witty and understands figurative language when it is her own, when she, herself, produces it.

For example, when she was newly six years old and was feeling unwell, she once said:

I’m feeling as sick as a tornado can be loud…Is that a lot? (May 28, 2013)

Frances has always kept me on my feet — in more ways than one — and always at least one step away from knowing everything about her.

She’s absolutely fascinating — I am her mother, after all — and her ability to get straight to the heart of any matter is just one more thing that impresses me.

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.

Worth a try

Frances: I think people are getting bored of me talking about horses at school.

Me: You’ve got to let others talk about themselves.

Frances: I let Sally talk about her guinea pigs, but it was so boring.

Me: You have to let yourself be a little bored, and then others won’t mind being a little bored when you speak of horses.

Frances: Okay.

I wanted to include this conversation, which happened before school, because I think I’ve found another way to reach Frances. (Also, it illustrates a difficulty that children with ASD may experience.)

I’ve heard professionals advise Frances to do a “social fake” where the child pretends to be interested in what someone else is saying. It doesn’t work with Frances. She doesn’t believe that her conversations about horses aren’t always riveting to others. So, I tried another approach by asking her to be bored for a few minutes.

By letting her know that others feel a little bored sometimes just as she does, she may start to realize when people don’t want her to speak and interaction could go more smoothly.

It’s just a thought. I’ll let you know if it does, or if it doesn’t, work.

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.

Language and context

She sometimes says “thank you” instead of “you’re welcome”, or she might say “you’re welcome” before the other person has a chance to thank her.

My adorable little girl is learning language and context, so I always tell her the correct response.

But, as I’ve mentioned recently, in these moments I get a chance to appreciate who she truly is just as she is.

I guess what I’m trying to say is that her struggle with pragmatic language often creates precious moments between us.

🙂

Appreciation 

I know that it’s my job to make sure that Frances knows social rules and to help her make sense of them, but sometimes it is very endearing when she doesn’t remember.

For example, in the car recently, Frances handed her sister some food that she intended to share and then said, “You’re welcome.”

“You have to wait until the person says, ‘Thank you,'” I reminded her.

“Oops. I sometimes get the words confused,” she replied.

She hadn’t said “you’re welcome” sarcastically; the words that she needs in social situations just aren’t always available to her or she confuses words because following the rule hasn’t yet become automatic to her.

At those moments, even though I step in to help, I’m really aware of just how much I appreciate who she is.