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.

🙂

Advertisements

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.

A play date

Frances went on a long play date today (without me). It’s the same family that hosted the last one, the one that is familiar with Frances and her needs.

It seems that the event went very well until two other, unfamiliar children showed up unexpectedly. If anyone had known this was going to happen, I could have explained the difficulty that Frances would experience.

She has trouble joining groups and staying in groups of children. She does well with one other child, but things break down for her when more children are involved. She also doesn’t interact with children that she doesn’t know unless she is helped to do so.

I see it as another in her series of developmental stages of relating to others. Recently, I made a list* that enumerates her social development:

1. at ages two and three, she seemed completely unaware of other children;

2. at age four, she screamed if children appeared to be coming near her at the park or on the playground or in the library; 

3. she had meltdowns and screamed at the park or library or social event every single time; nearby children and parents were often confused or alarmed by her behaviour (screaming and crying) if they tried to interact with her;

4. she allowed children to try to play with her or just be near but did not acknowledge them in any way

5. she acknowledged other children in some way, but only to complain that they were harming her or being mean to her or doing something wrong socially (when they weren’t);

6. she allowed children to play beside her but told them when to leave (usually after a couple of minutes);

7. she stopped telling other children when to leave but told them they were annoying her;

8. she sometimes let a classmate play beside her, but not usually, and stated that she wanted to play by herself; she still always complained about other children;

9. at age seven, she usually let a classmate or two play beside her but with much conflict and confusion; unknown children at social events could be near her but were still not interacted with; 

10. she played with classmates using her own rules and didn’t follow along with the others; attempted play dates always ended because of meltdowns;

11. at almost age ten, she plays with classmates as long as rules that she knows don’t change or another activity isn’t initiated midway and still plays primarily alone or beside others; she still has trouble joining groups and there is no interaction with unknown children unless it is facilitated. Play dates do not end because of meltdowns.

She has actually had a lot of occupational therapy to help her join groups and read the cues necessary to stay in them while at play. It takes time and practice to really master these skills.

Unfortunately, she had a huge meltdown after she came home but couldn’t tell us why. After a few minutes she mentioned the other, unknown girls joining but not the difficulty that she’d had.

But I knew immediately. She would have been trying her very best to join in, but she just couldn’t manage it, and the parents didn’t know about this particular difficulty of hers. (I didn’t think to tell them because they only have one daughter with whom she plays.)

I’m not surprised that she became frustrated and overwhelmed.

Anyway, she’ll be calmed down and back to her usual self tomorrow.

She is now watching her favourite movie with Pink Cup Dad while I marvel at the curly hairstyle that I gave Barbie at Frances’s request.


*I don’t know how Frances’s social development compares to other children with ASD. Also, I use the words play and interact interchangeably, and Frances’s idea of playing really differs from what is considered typical of children without ASD.