No pink dinosaurs this year

It’s birthday-planning time again. Time has flown by in the blink of an eye.

I find it hard to believe, but Frances will be 11 years old this month. She is younger socially (about 8/9) and older intellectually (about 14/15).

But buying gifts isn’t as difficult as it may sound; she still only has one interest which is expressed in dolls and books and conversations and lessons: horses. (Thankfully, she has discovered, in the past year, Playmobil horse sets, so our options have expanded.)

In my previous post, I discussed the fact that some behaviours sometimes come and go, or change, well this includes her behaviour in response to stimuli such as sound (and the emotions of others).

In the past, when very young, she would hold her ears and cry (leading to lying on the ground and screaming) when her environment was too loud.

By the age of 10, she wouldn’t often lie on the ground screaming but would hold her ears and, eventually, cry.

Now, her facial expression clearly says “anxiety”, and she starts flicking/tapping her fingers which rapidly alternates with flapping her hands, while making sounds that quickly lead to crying.

Being in restaurants, school, theatres, buses, streets, malls, stores, etc. still causes her great distress. (So, I’m actually baffled by the private facility that provides her weekly social group when they choose bowling alleys as a venue.)

Of course, not all children with HF ASD react to the same stimuli or even to the same stimuli in the same situations, but Frances has always responded to “loudness” with obvious coping behaviours.

Recently, I’ve also noticed that where the emotion of others is concerned (such as if another child is angry or sad), she now repeats a word or a sentence over and over again while holding her ears and, then, while crying (when she previously would have cried without the use of language).

At any rate, we have two options when coping behaviours appear: remove Frances from the environment or have her listen to music on her phone with earphones.

Usually, we try earphones and music; if this doesn’t work, then we have to take her out of the environment either temporarily or permanently (depending on whether her distress continues and/or if she’s willing to try again.)

I wonder if the change in coping behaviours indicates an improved ability to communicate distress? Or if it means that Frances is actually in more distress than she would have been in the recent past? Or both?

Ah, so many questions as always where ASD and our girl is concerned.

Anyway, I’ve got to get some birthday shopping done now.

πŸ™‚

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Climbing the walls

When Frances was younger, starting as a toddler, she would climb anything and everything. It was quite impressive even though it was frightening.

When I mentioned this to her wonderful doctor (a developmental paediatrician), a few years later, he asked: “Has she ever fallen?” The answer was that she had not, and still has not, ever fallen.

But I couldn’t leave her alone, even when she was six years old because, though she had never fallen, the possibility was there that she could, in fact, fall one day.

The dark humour of this story is that, whenever she bolted or wandered away from me at the park, I knew to look upwards, not just around, to find her.

She has always been in constant motion–skipping, jumping, running, twirling, spinning–this has never changed, and I honestly don’t foresee this changing.

By age 9, though she would frequently be unaware of potential dangers attending her movement and behaviour, she wasn’t really climbing as often.

The danger has been, and still is, more that she will stand with her feet at the edge of the top of the stairs facing backwards while talking or moving, or she will sit with her back flush with the edge of the high mattress, or even try to do donkey kicks on the sofa facing the ground.

Lately, however, a month-and-change away from her 11th birthday, I’m always finding her standing on high things, balancing while squatting or standing on the edges of furniture, trying to climb stair railings…

So, it’s back, folks! Climbing behaviour is back. We’ve come to accept that HF ASD for our family means that behaviours don’t always disappear forever. Some never disappear at all, such as sitting in dangerous positions, and sitting in the squatting position exclusively, but climbing will come and go. We just go with the flow.

My best guess is that the sensory input that she gets from climbing helps her in some way to cope with what goes on inside her body and mind.

The only difficulty is a practical one: she now requires even more supervision than she did last year.

I don’t mind because, as I’ve mentioned, I think it helps her cope somehow. What I do try to establish is a rule that I must be present when she climbs.

We’re working on that.

LOLs

I’ve just come across some of my old notes of a conversation between my sister and Frances (who was 3 years old at the time) and I’m practically dying. πŸ˜‚

Pink Cup Aunt: How do you want your toast this morning?

Frances: In semicircles.

Pink Cup Aunt: I’m not sure I know how to do that.

Frances: It’s a HALF circle…

I love this vintage gem!

Um, no…But yes, absolutely

Frances: Sarcasm β€” 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.

A for effort

Frances: I am an ARTISTE, not someone who is capable of “making friends”.

On why she shouldn’t have to go to her social group (which she did, in fact, attend — her cultural status and sensibilities notwithstanding.)

Nice try, tho’.

J. Alfred Proof-rock

I’ve mentioned this fact before: when she was two, almost three, Frances would ask me to read to her at bedtime whatever I happened to be reading for myself at that time.

Thinking she might fall asleep faster if I read the Aeneid by Virgil — because I, myself, would — I started the epic poem. To my utter surprise, she enjoyed it. My plan really wasn’t working.

So, then, I thought about T.S. Eliot and started reading The Waste Land. I moved on from there to The Love Song of J. Alfred Prufrock. In doing so, I began a nightly routine that lasted for several years.

It has been a long time since I last read Prufrock to her, but she clearly still remembers it as, the other day, she quipped, “Where’s the proof-rock? Get it, Mum?” She giggled and giggled.

She has a wonderful sense of humour that, I think, won’t be appreciated by everyone. I doubt that the children in her class have heard of T.S. Eliot yet.

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.