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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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.

🙂

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.

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. 🙂

Ad naturam 

For the first time, Frances is going to a day camp that isn’t operated by people that she knows.

It’s a big change, but it’s not as big as it could have been–she is also attending with two of her cousins with whom she is very close.

On the first day, there were no tears at separation, but there were many reassuring words and hugs (when she permitted).

It’s a nature-oriented camp that involves activities such as canoeing every day. Pink Cup Dad and I both enjoy canoeing, and we’re happy that Frances is enjoying being on the water (and that she is so closely supervised).

She is surrounded by the outdoors: (animals, dense forestation) with lots of activity (hiking, canoeing, crafting).

She has also met a girl who seems to be very protective and friendly towards her and who enjoys horseback riding, too. This has allayed some of my own fears. This is her new “best friend”. (While she uses this term with everyone with whom she connects, I’ve no doubt that she means it when she says it.)

I signed her up back in February and indicated on the application that she has HF ASD. To my knowledge, she has not required one-to-one support at all and has managed well while just having her cousins there with her.

Next year, perhaps she’ll be ready to attend a camp without her cousins. I can see this happening for her. 

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!

🙂

Achieving goals

The Pink Cup household is never boring. There is always a bustle of busy-ness around here. 

But, it is important to note change when it occurs, and there have been some pretty positive goals achieved in the past couple of months:

  • Frances will get her own breakfast now if I’m sick
  • Frances reluctantly agrees to take showers
  • Frances showers without any assistance 
  • Frances reluctantly agrees to wash her hair
  • Frances washes her hair without assistance
  • Frances reluctantly agrees to stay in rooms by herself 
  • Frances reluctantly stays in rooms by herself 

Though she is having trouble adjusting to big changes in her classroom, there is definitely more independence as she approaches her 10th birthday this month.