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.

🙂

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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.

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?

😂 

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.

Catching up

Frances has started Grade 5 now with guarded enthusiasm. She is receiving homework for the first time and isn’t too happy about this turn of events.

I think she’ll settle in — we just have to get her into a routine of doing homework.

Routines are good for us. 🙂