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!

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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.

Snowman

Winters are cold here. While I wouldn’t say that spring is in the air, today is actually quite nice at -2C with noticeable sunshine.

Increasingly, Frances asks to play outside on the weekends and after school.

She ended up making a snowman on her own this past weekend.

The new ABA group

Frances was near crying as the other girls of her ABA (applied behaviour analysis) group walked into the reception area.

“I’m not going,” she told me.

“I don’t want to go somewhere without you,” she said. She was pouting.

“You didn’t consult me. You didn’t even ask me if I wanted to do this,” she reminded me.

The ABA interventionist/group leader tried to talk to her, but Frances buried her face into my coat.

Then the group leader uttered the magic words:

“We have dolls!”

Frances looked up. “OK,” she said. “And Barbies?”

The kid didn’t even look back at me as she walked down the hall. 

That was last month, and she has only grumbled a bit beforehand since then; there’s a much smoother transition now.

Party of one more 

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Whenever the opportunity appears, I promote self-confidence and my daughter’s I-can-do-it-by-myself attitude; yet there are times when this isn’t possible, when we need to take a more gradual approach to independence.

I dropped Frances off at a restaurant-based party yesterday to celebrate the 10th birthday of a friend that she knows from horse riding lessons.

The people hosting the party are great — such kind, loving grandparents. I knew that Frances would be safe with them in a party setting.

But could I do it? Could I just leave her with people she barely knows and go back across town to my home until it was pickup time?

No, actually, I couldn’t — not this time.

For one thing, she had never been to a party on her own before. For another thing, they didn’t know that she has ASD and that she could become overwhelmed. These factors, when considered together, told me that it wasn’t the time for her to try to go to a party alone.

So, I sat at a separate table across the room and around a corner, eating a meal, for about an hour before she knew that I was there.

For that one hour during which my presence was unknown, I could see that she was doing quite well without me when she went to a buffet. (I actually could only see her when she went to the buffet.) She always had the birthday girl with her.

I noticed a few times that the girl would put her arm around Frances’s shoulders in a protective way.

When Frances realized I was there, she was a little surprised, but I assured her that I was only there because I’d had nowhere else to wait. She really didn’t seem to mind.

Mostly, I read the news on my phone and ate my supper in relative solitude; however, at the end, I joined the group for a piece of cake.

But, as Pink Cup Sister noted, Frances still hasn’t gone to a party by herself. She’s right. Who knows? Frances did very well, so the next party could very well be the one that she attends without me.

Text support

Frances went to a sleepover this weekend involving two of her classmates. I was worried that she wouldn’t make it through the event, and, frankly, I waited for a call requesting that I pick her up. 

Fortunately, the sleepover parents were really good about letting Frances have her wifi-only phone in the room with her during the night.

This meant that she could text me which she did, at around 11:30 p.m., to let me know that she couldn’t sleep.

She asked me to text her a story about her favourite horse (as I make up a story every night at home) and I did. 

When I woke up the next morning, I checked my phone and found this text. It made me smile so much that my face hurt!


I’m so grateful for texting!

(I have to say that I’m also grateful that the host parents are very good with Frances! They have experience with Aspergers and high anxiety and are very sensitive to Frances’s needs, so allowing her to go to a sleepover hasn’t been as hard for me as it could be.)

The faces that you meet

I was reflecting last night upon the fact that it has been just a little over 3 years since Frances’s HF ASD diagnosis.

Though I normally just read or sketch while waiting, I found myself having a conversation with a mother of two children with diagnoses of severe classic autism last night while Frances attended an ABA (applied behavioural analysis) social group. 

Both the woman and her children seemed very familiar to me. Her children were actually the exact age of Pink Cup Sister.

She asked me about Frances’s diagnosis, and I did my best to explain that Frances was given a diagnosis of high functioning ASD but that we were told that it could possibly be high functioning autism (as opposed to what used to be known as Aspergers). 

As the woman and I spoke, it occurred to me that she and I had a lot in common: there were definitely differences in our experiences, but we both had lives that revolved around routines, accommodating/managing/anticipating behaviours, setting goals, and going to appointments.

It transpired that we had been seeing each other off and on since Frances was a toddler and her girls were around four or five years old.

Before Frances was ever diagnosed with ASD, she was seen by professionals for gross motor and slight language issues.

So, we attended a development and rehabilitation department at a beautiful, ancient hospital where goals were set and each one was met through play groups, physiotherapy, or early-communication groups (from 12 months to 26 months old).

It was at this building that the woman and I would have seen each other in waiting rooms, corridors, and parking lots.

It was nice to meet her formally, and I ended up getting some good, useful information on summer activities for Frances.

A horse is a horse, of course

As it turned out, this week, Frances decided to ride another horse (B) for her lesson. She told her instructor that she wanted to try a smaller horse and, actually, she really has wanted to know what riding another horse would be like.

B’s a very responsive, energetic horse who is very much unlike the horse that she has been riding since the start (A). Whereas it would take much effort to get A to move, let alone trot, B required no such work.

For the first time, and quite ahead of my expectations, Frances did her first full jump! She said that, as B trotted, she just leaned forward to hold on and over the full cavaletti she went (under the guidance of her instructor).

In general, B gave Frances a better riding experience than A usually does.

I’d say that B actually inspired confidence in our little equestrian, dear readers, and it was wonderful to see throughout the lesson. (Apparently, it can take anywhere from three months to three years to learn to jump — I’m glad that she felt confident enough to do so at this point.)

Sadly, as Frances went to visit A before leaving the stable, A turned to face the back of the stall. She moved into the adjacent stall to try to pet him, but he then turned his back to her again. So, there is some relationship work to do (much to my surprise).

Frances was disturbed by this turn of events, but I later explained that A has to learn that it’s okay for her to have other horse friends, that she doesn’t like A any less. Next week, she can bring him some carrots and apples. 

Unlike other activities, horse riding doesn’t break for Christmas — so she’ll have lots of opportunity to show A that they’re still good friends even though she wants to switch horses.