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.

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In other words…

Frances’s use of language often impresses me.

Her teacher recently told me that she believes Frances is quite a few years older than 11 (which we’ve actually been told is the case) and that she is impressed by Frances’s very dry sense of humour.

I love her sense of humour, too.

Last night, at the dinner table, the following exchange:

Pink Cup Sister: What are you talking about? You’re short!

Frances: Let’s say I’m ‘below my growth curve’…

😂

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.

🙂

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.

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.

🙂

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! 

 
 

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. 🙂

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!

🙂