Progress

School mornings are difficult for Frances. They typically involve huge meltdowns and outright refusal to go to school. We do get her to school (where she does well throughout the day), but not without a great deal of effort to get her dressed, fed, and ready to leave the house.

Today, everything progressed in a predictable manner until there was sudden silence: I found her in the living room, rocking herself in a rocking chair. Ten minutes later, she was still rocking. Ordinarily, the meltdown would last until the teachers took over, but we stood a good chance of delivering her into their care without tears!

I ran up the stairs to tell Pink Cup Dad that he had to take her to school NOW while she was still so calm (and he did).

Now, I’m looking forward to seeing if the rocking chair works for her tomorrow as well.

Flashing lights

I posted recently about how change can produce meltdowns.

Yesterday, there was a good example of how too much visual information can produce meltdowns.

At the hospital at which she had an appointment, there was a test of the fire alarm system. Unfortunately, this partly consisted of several lights silently pulsing.

At first, Frances tried to hide from the lights. Then, in a darker area of the reception space, she got distracted by stackable molded chairs and the opportunity to climb and to rock.

But a headache had set in for her and nothing seemed to help: removing glasses, avoiding looking at lights, crying.

She definitely didn’t want to go to school afterward.

We’re very accustomed to sound bothering her, but visual things overstimulate her, too.

(She actually loves light and is very drawn to anything that emits light, but, in this case, there was just too much and she couldn’t control it.)

Changes

I think people probably hear about children with autism being resistant to change, and, in our case, it’s true.

One morning this week, in order to get as much done at once before the children left for school, I decided to try to brush Frances’s hair while she ate breakfast.

She had an immediate meltdown: crying, screaming, and complaining to Pink Cup Dad that I’d interrupted her breakfast.

That was completely my fault: I hadn’t thought about the fact that brushing her hair during breakfast was something we’d never done before. 

She notices even the tiniest changes in an environment — whether it be her piano teacher’s studio, her school classroom, or home — and her reaction ranges from complete distraction to meltdown.

With Christmas approaching, I will have to put up decorations slowly, and there is a meltdown every year when I have to take them down.

When the presents are under the tree, it is just too stressful for her for there to be “objects everywhere”. 

On Christmas morning, we stagger gift opening, and we try to clean as we go along to minimize the visual stress for her. We do our best not to have guests on that day.

I think that Christmas brings just so much change for Frances — including the stress of anticipation — that, if I could, for her sake I would avoid it altogether.

She may enjoy Christmas without stress one day, but, at eight years old, Christmas (and the change that it entails) is difficult.

At the pool

Recently, a fellow blogger wrote about being the parent of the only child who is crying and screaming at the pool during lessons. It couldn’t have hit any closer to home!

When she was three, I signed Frances up at the local community centre for swimming lessons. From the moment she got there, she would scream and cry and not want to go in the water. I tried, week after week, to get her to take a lesson, but it was to no avail.

It made me anxious and worried and strangely isolated from other parents: why WAS my child the only child who would not tolerate being touched or being put in the water on a raft?

(This was years before any diagnosis was sought or delivered. We didn’t know that she had special needs.)

Other parents would politely offer suggestions, and I didn’t tell them of my suspicions that nothing would work.

I remember well the anxiety that would build in me as another mother suggested that Frances shower at the same time as her own child. Frances wailed, the poor kid, and was too afraid to try each time.

It wasn’t long before the pool staff told me that her behaviour was distressing to the other kids, that she was too loud and disruptive.

That week, I had Pink Cup Dad come with us so that maybe he could see something that I could not.

I’ll never forget the moment when he loudly declared his annoyance at the staff as our little girl sat crying on the ledge of the pool.

“If they’re not going to even work with her to help her through her fear, forget it.”

He walked into the pool area, picked her up, and we left the building. We never went back.

Sure, my child may be very high functioning, but she was the only child who wouldn’t stop crying and screaming at the pool. It might have been a different story had we known that she had ASD — we would have had her in a special-needs lesson — but you never know. You live and you learn.

(By the way, she loves the water now.)

Halloween 

We go out with pretty much the same group of people for trick-or-treating every year. Since Frances was old enough to know what Halloween is, she has insisted that we leave the group and that only she and I go from door to door.

This actually makes sense: gross-motor wise, there is the effort of keeping apace with others; emotionally, meltdowns slow her down; socially, she always chooses to be away from others.

This year? It was a little different. She ran — even out-running the older kids — from door to door. She did her best to speak. One little boy — the one she spent the most time beside — was on the spectrum, too, and they really did well alongside each other at the party afterwards. 

The worst that happened this year was that she lost the old, dirty stuffed animal that accompanies her everywhere, and her father took a flashlight and successfully retraced our steps in order to find it.

Before our arrival at the host house, she had had such a huge meltdown that I figured that I would be spending much of my time handling meltdowns while trying to signal “let’s leave” to my husband early on in the evening. That’s what usually happens at any social event.

But not this Halloween. We got through a big social event with just a few meltdowning moments. Her anxiety (for example, as she encountered the imagined possibility of anaphylaxis while watching a guinea pig), was evident but we managed.

Halloween wasn’t as difficult as it usually is, and, for me, that is success. 

The Beach

   
Recently, a fellow blogger posted a picture of his son on the beach, and I realized two things: (1) I don’t write about the beach, and (2) we don’t visit the beach very often.

When she was barely two years, Frances’s first excursion to the beach was uncomfortable: she cried whenever her feet touched the sand. The surface wasn’t hot, but she didn’t like the sensation.

When she was three, on her next trip to the beach, it was difficult because Frances was unaware of children trying to play with her and did not tolerate their attempts to play beside her. As a result, she cried often, and there were several meltdowns.

When she was four, we tried the beach again. At this point, we were 2.5 years away from a diagnosis, and a few months away from wondering if we needed one.

At the beach, as she poured sand out of a pail this day, I asked her to move over a few inches from a sunny to a shady spot. The meltdown that occurred, as she lay flat on her stomach, was loud and prolonged; other parents stared and shook their heads. I was quietly alarmed mostly by the fact of the meltdown and its trigger. 

I honestly didn’t know what I was seeing, and I didn’t suspect that Frances had autism. Children have tantrums, but this seemed like more. I just remember thinking, “This isn’t typical, is it?”

In the above panel, she is eight years old, about 1.5 years after diagnosis, and happily enjoying the beach.

Post-midnight meltdown

Her bedtime routine is very strictly followed, and must include watching one of her favourite documentaries. If she should fall asleep before the end of the documentary, she will wake in the middle of the night crying that she hadn’t watched it. (In this panel, she is five years old.)