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: (usesđź‘Ś 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 (đź‘Ś) 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.

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This past week 

For so many years, as is often the case in families affected by ASD, our autism sibling has been more independent as her sister’s needs have been addressed. It has been as if she is on the Frances Show where it’s all Frances all the time. 

This has recently changed, and both she and Frances are adjusting rather well to the change in family dynamics.

We have discovered that Pink Cup Sister has special needs as well — though not the same as those of Frances — and she has been receiving the lion’s share of attention recently.

How has Frances coped in situations in which I can’t pay her as much attention? She’s done really well. She doesn’t usually leave my side, but she will give us privacy when Pink Cup Sister, Pink Cup Dad and I have to speak of matters personal.

This isn’t to say that we’re not still working on goals with Frances, too: she struggles with issues of food, coordination when dressing, following sequences without verbal prompts, communicating when she feels unsafe at school and a host of other issues that would fall under the “social” category.

Recently, I was saddened and surprised to learn that a child in her classroom isn’t very patient where Frances’s interest in horses is concerned.

Now, as is sometimes the case with ASD, my daughter’s interest is all-consuming, and she will speak about horses frequently because that is the means by which she has discovered that she can relate to others.

The other child will frequently challenge Frances on horse facts and tell her that horses are weird, etc. He’ll say anything to bother her.

I’ve learned that another boy sticks up for Frances and refuses to let the mean boy’s behaviour go unchecked.

I think she’s had enough though this week: she tells me that she had the “perfect storm” for a meltdown when loud noise, too many people, too much movement and the mean boy’s comments combined and caused her to be overstimulated. She cried uncontrollably, and her wonderful teacher helped her through the episode.

The teacher did inform me that the boy is, in fact, being mean to Frances, and that she is keeping them well separated to avoid any more conflict.

There was also a change in her schedule that probably contributed to her meltdown, too: her father was away on business for the week.

Let’s just say that it has been a long week for all of us.

I’m so glad that it’s Friday. Yay, Friday! 

 
 

Good changes

Like many children with ASD, Frances has a severely restricted range of foods that she will eat.

I have to explain: there are several foods that she will eat in general, including vegetables, but, in a single week, she will focus only on one or two foods. (She also won’t eat food that is soft or food that is at room temperature or combination foods such as sandwiches, soups, pizza, etc. Food served must appear the same way that it has always appeared or it’s “not the same” and she won’t eat it.) Meltdowns at meals are inevitable even when the food options and appearance are acceptable, and we’ve accepted this as being just the way it is.

Anyway, this week’s appointment with the occupational therapist pretty much consisted of me telling her that we didn’t stick to the food plan that she had devised. We were supposed to make it so that Frances couldn’t eat the same food within a three-day period.

Yikes, that schedule didn’t go well. First, it represents change for which Frances has a low tolerance in general; secondly, we went on vacation and food sources were restricted mostly to restaurants. We did have a two-bedroom apartment for the duration, but our plan of buying groceries and eating in wasn’t as practical as we had anticipated that it would be.

Also, with the disruption of routines that vacations bring, we didn’t want to add to this stress by forcing a change in her eating at that point.

Now, this week, we are home, she is settled at school as well as in her social group, piano lessons, and horse riding lessons, and we are trying again.

I can say for certain that it isn’t “just picky eating”, and she really won’t eat anything if she gets hungry enough. She just won’t eat. So, a strict schedule involving foods that we know that she will eat is definitely the only path to take.

In contrast, Pink Cup Sister IS a picky eater. The difference is that there is no pattern to what she will or what she will not eat. She simply likes something or does not like it, and she is hard-pressed to tell you why either way: it tastes good to her or it does not. She also will attempt to eat what she doesn’t like if she’s hungry.

But, with Frances, it is hard work getting her to eat what she needs. It’s certainly in her best interests to keep trying and making sure that she has whatever supplements that she requires. There just isn’t much left in her range of acceptable foods after ruling out softness, room temperature, combinations, and differences in appearance.

Fortunately, Frances is very good at achieving goals, and I’ll help her do this, too.

She’s such a gentle soul that I always want to tread softly over ground that is difficult for her.

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.

🙂

Summer and structure

Frances needs structure — lots of it. In the past, summers have been very difficult for her for this reason.

So, school has ended for the summer break, and we have encountered a little difficulty in this regard: we had signed Frances up for a summer filled with day camp through her school; unfortunately, the school has cancelled the camp!

We’re down to four weeks of day camp from 10 weeks, and the deadlines for other camps have long since passed.

If I can get her interested, I thought reading Anne of Green Gables to her might help with her need for structure. There are many kinds of crafts or art that can be done with that theme in mind.

I’m definitely open to suggestions for helping to keep her time structured!

🙂

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.

The birthday girl

We celebrated Frances’s 10th birthday this weekend, and there were no meltdowns during the two parties. 

She covered her ears during the “Happy Birthday” song both times, but we kept the numbers very small at both the party for friends and the party for relatives, so she didn’t get overwhelmed in general.

At the party for friends, in addition to a few classmates, she had two friends from horse-riding lessons which was really nice.

Guess what theme predominated the gifts that she received? Horses. She got every manner of horse toy for which a ten-year-old horse-and-doll-loving little girl could have wished, and it was really sweet.