Trauma bay?

Since she was three years old, Frances has had an intense interest in all things medical 🏥. It shows up everywhere, especially at 11 years old.

The other day during March break, Frances announced, as she typically does (literally) in passing, what was on her mind:

“Mum, if someone were saying, ‘I can’t feel my face when I’m with you’ to me, I would say, ‘Stroke! You’re having a STROKE!’” 😂

Yes, one of the benefits of having a child who focusses so intensely on her subjects of interest is that you are fortunate enough to suddenly find yourself in the most entertaining (as well as enlightening) of conversations.

Recently, I was discussing with someone an event that had occurred while I was hospitalised last autumn and described the cautiousness that my care team had demonstrated regarding some cardiovascular and cardiopulmonary symptoms. Frances couldn’t help herself, she interrupted because she just had to know:

Did they give you TPA?

No…

Did you hear, “Code Blue” over the loudspeaker?

No…

Did anyone say, “Everyone to the resuscitation bay!”

No… (LOL)

She speaks now of becoming a surgeon which, I’ve told her, would probably allow her to continue her equestrian ambitions.

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On Valentine’s Day

I almost let a holiday go by without mentioning my inimitable 11-year-old’s reaction to it this year.

Frances: There’s too much “love” involved — and happiness. And pink. Blech.

This is a first. She used to enjoy Valentine’s Day (although it was probably access to the candy, now that I think about it).

I can’t wait to see what she says tomorrow… It’s my birthday. 😬

Disbelief

This past weekend at Grandma’s birthday party, Grandma and her sons were trying to find a vase for the flowers we’d bought her.

Frances, focussing on her iPad, muttered, “God, don’t these people have a sense of depth?”

I leaned over and said, “What do you mean?”

“I mean, can they not look at the flowers and look at a vase and predict with some accuracy that the flowers will fit or will not fit the vase?”

😂 Sometimes, I wonder how it is that I don’t choke because she says the funniest things when I happen to be eating.

Let me be clear: Frances is not being mean; she’s being honest — at a time when most people wouldn’t be — without a stitch of malice.

Hands down, it was the best comment of the evening — and, even though she definitely has to learn not to express these thoughts, her cleverness made me proud.

Yes, I do have to teach her that saying these things aloud isn’t okay, but convincing her lately has become so very difficult.

I have to do it for each instance, too, because she usually wouldn’t generalise.

“We have to keep that as an ‘inside thought’,” I usually say.

“Why? Why can’t I say this?”

“Because it hurts people’s feelings.”

“That’s silly. It’s just an observation…”

And so it goes. Lots of conversation about why we’re having the conversation. So, dear readers, this area of things doesn’t necessarily get easier, but it does become funnier! (At least in our case.)

This must be Thursday…

Welcome to Thursday...
“I never could get the hang of Thursdays.”

The weather here has been ridiculously cold. We’ve all bundled up under extra blankets for windchills in the -20s and -30s.

We’re approaching the end of January, and, unfortunately, Frances has been pretty sick for much of the month which has prevented her from enjoying the snow whenever it appeared.

In fact, my highly active, super-humanly energetic child has been lethargic and disinclined to do much besides watching her documentaries and playing iPad games.

She keeps asking, “Mummy, why do I feel so sick?”

Because it’s winter. Because it’s cold-and-flu season. Because the flu shot isn’t 100% effective, but it’s best to get one to lessen the impact of the flu. Because you’re young and you haven’t been exposed to many viruses. Because kids at school are sick…

And so unfolded our Thursday conversations throughout the day (once I returned from Pink Cup Sister’s appointments).

The good news on this particular Thursday is that I finally took the ornaments off the Christmas tree. I had been preparing Frances for this event for some time, but she was still a little shocked and perturbed as I carefully packed up our glass ornaments.

There is usually a meltdown when Christmas decorations slowly disappear throughout January, but Frances has done well.

Happy New Year!

Each year, I end up writing about Frances’s reaction to the festive season. This year, there was a noticeable increase in stress for her, as school finished up and decorations appeared, compared to other years.

There is always some degree of stress for her; however, we were seeing daily meltdowns at least 3x per day, and I was tempted to pull her out of the school concert.

In the end, we had a great, exciting Christmas. Frances received a stack of Breyer horses as tall as she is. It was, overall, just a delightful experience.

I do think we have to do a better job next year of shielding Frances from stressful situations. I mean, we did do so, but we’ve more clearly identified triggers as of this past holiday.

She recently said to me:

“Mummy, I don’t like uncertainty in my life. I run on a schedule…”

How insightful she is! Thankfully, horse riding is year-long, so that part of her schedule remained very close to the norm for her. In fact, like most “horse” people we know, Frances and I were there more often because of the break from school.

Picture of pony

One notable difference this holiday from my perspective was that, at the Christmas dinner, she spoke eloquently about her interest in writing and her ideal projects. She actually sounded like an adult! I have to remind myself at those times that she is only 11 years old.

Anyway, I hope to provide more updates and anecdotes this year than last: family emergencies and some serious health issues for me meant less writing.

But now that I’m back up and running, so to speak, do expect more from A Pink Cup 🙂

Changes

Things have been insanely busy around the Pink Cup House, but I wanted to catch you up.

Frances, at nearly 11.5 years, is changing.

For one thing, she has become very tall and lanky, and she’s starting to appear more teenager-ish.

For another thing, she is now likely to share facts with people as a way to connect, and she takes advice about how to interact. The risks she takes often pay off. Recently, I overheard her approach a group of adults and say, “Hi. My name is Frances.” People spoke positively about her to me frequently throughout the evening.

Moreover, she now combines honesty and humour to affect someone. For example, with all four of us in the car one recent evening, we had the following conversation:

Me: One day, girls, we’ll get a new car.

Frances: When Daddy finally agrees to spend some money…

We all laughed out loud.

As I mentioned before, her teacher has described her as “delightfully sassy.” The other day, I asked Pink Cup Sister to go to the basement for a step stool. She came back empty handed because all she could see was something that looked like a bench. Pink Cup Daddy went down to the basement and grabbed the stool. At this point, Frances said, “Don’t worry, Mummy. You won’t have to be disappointed in me: I know what a step stool is.” 🤭

So, “ribbing” her sister, her father, and, sometimes, me has become second nature to her.

She still plays with horse dolls, skips from place to place, but she is growing up.

Milestones: the infancy through toddler years

So, we reached a milestone yesterday, but I really think that I should put it in some perspective, give it some context.

Frances has had many milestones to reach over the years. You wouldn’t know it unless you had been around us at the time, but there was a point at which we didn’t know if Frances would walk.

She was the “floppy baby” that parenting books sometimes describe; some of her reflexes that she should have outgrown by seven months remained while other reflexes were absent.

She was delayed in sitting, rolling over, standing, and crawling. Plus, she had pronated feet (which later required orthotic inserts).

Weekly visits with occupational and physical therapists improved her gross motor skills and her coordination, and she was diagnosed with hypotonia (low muscle tone). She did, of course, walk steadily by 16 months, and she ran with breath-taking confidence by the age of two.

Also, from the age of four months, it had been clear that she needed to have her eyes evaluated. At five months, she was diagnosed with severe bilateral strabismus (both eyes crossed) and, though she was seeing out of both eyes in alternation, there was the very real risk that she could lose her vision. It was the worst case her paediatrician had ever seen.

She also got her first pair of glasses upon her first visit with the paediatric ophthalmologist at five months.

Finally, once she was walking and had had eye surgery at 18 months to correct the alignment of her eyes, the rehabilitation centre asked me if there might be any more concerns of mine to address.

I didn’t realize that I was being gently nudged, but, besides her eyes, walking, and those other infant milestones, I really couldn’t think of anything.

It was true that Frances would require the daily use of eye patches for several years due to an “over correction” during the surgery (which meant that one eye turned outwards), but that was being addressed and it wasn’t their area of concern anyway. So, I was bewildered.

Then, a clinician asked if language was a difficulty. By this time, I hadn’t noticed until that very moment that, in fact, Frances was not developing new words or even really using the words that she had acquired so early.

So, if you’re still following…In summary, at first we didn’t know if she would sit, crawl, rollover, or walk. Then, we didn’t know if she would lose her vision or be able to see well enough to not be legally blind.

Now, at 18 months, we didn’t know if Frances was going to be able to speak. A speech-language pathologist evaluated her: she scored very high with receptive language and lower than average with expressive language.

From that point on, Frances and I attended early-communication groups on a weekly basis for about a year which, for a while, were concurrent with the gross motor groups that had got her walking.

She didn’t speak in these groups, and it made me nervous. But, one day, about seven months into the groups, during the “pick a song and sing together” portion of the session, I realized that I could hear the faintest little voice singing “Old Macdonald Had A Farm” for the first time! So, we knew that she would be able to speak which was an incredibly emotional moment. (I can see that moment so clearly: she was sitting on my lap while I sat cross-legged on the carpet.)

Did I mention in all of this that nobody suspected autism? If anyone did, nobody mentioned it even once?

But that’s another story for another time. I will say that Pink Cup Sister noticed, and would continue to notice, at this time that Frances wasn’t “emotional” and didn’t “play right”.

At any rate, Frances remains very myopic but, with glasses, her vision is now corrected to 20/20 and 20/30 which is pretty damn good.

Over the years, she has been seeing the orthoptist and the ophthalmologist every two months or every six months. We have virtually been fixtures at the children’s hospitals.

Yesterday, after more than eleven years, we were told that Frances no longer needs to be followed by the specialist for her vision and that she can see an optometrist like the rest of the Pink Cup Family!

This is an exciting milestone and, while trying to describe its significance, I have skipped over the parts where my doubts tugged at me throughout her toddlerhood and preschool years: Was there something not typical in her development? Like, for instance, she didn’t respond at all when put in a swing at the park; she never spoke a word at preschool to anyone at the facility; she didn’t like to be spoken to or to be asked questions; she didn’t like to be touched; she wouldn’t look at anybody…I really could just go on and on.

I should note that, before Frances was even three years old, I would ask several doctors and other professionals if we should be concerned about these things. Nobody was concerned, but my suspicions lingered.

Sigh… Deep down, I had always had suspicions that my daughter’s development wasn’t typical; but, if everyone who is supposed to help tells you that everything is fine…Well, then, what do you do?

I ended up doing A GREAT DEAL about it: there was a huge struggle to climb, by hook or by crook, through the different tiers of healthcare in order to have Frances examined by the right professional (a developmental paediatrician).

I promise — I will come back to that struggle and to those very important years spanning the ages of three to six-and-a-half. I know that I can think about it and write about it, but it’s so difficult for me that it has be at a slow pace.

Suffice it to say for now that the eventual diagnosis of high functioning autism spectrum disorder was very much anticipated and welcomed. We actually celebrated, but I’ll leave off here.

If you read through this very lengthy post, thank you.

🙂

Honesty as truth speaking…

Yesterday, we had a support worker from a respite program come to our house for an interview.

We are members of an organization that offers this summer service (a support worker comes to take Frances out into the community for a few hours each week) as well as monthly opportunities to socialize at well-planned events.

As it turned out, we had met our support worker before, last year, at one of the few events that Frances had actually wanted to attend.

We had gone to a planetarium, and while waiting for the evening show, Frances had met London (about 17 years old) and stayed by her side. They were fast friends.

Frances even opted (unbelievably) not to sit with me during the show and to sit beside London instead.

London arrived at our house on time, and I showed her to the dining room.

Frances had arranged with me beforehand that she wouldn’t have to take part in the interview, but, as London and I spoke, Frances came in to the dining room.

“Hi, Frances! It’s good to see you again…”

Frances took a seat at the table.

“We had such a great time last time we met!” London said.

Finally, Frances spoke: “I think I vaguely remember you.”

😂 😂 😂

I love her honesty! Since Frances really does want to make friends and has such a difficult time doing so, we are working on learning when not to be so strictly honest (since she will not lie).

I wasn’t worried, tho’: London is familiar with this possibility when some people with ASD, Aspergers, and autism interact. Besides, many people find her honesty to be a refreshing change.

I have to say that, when she was really young, and we didn’t have a diagnosis, she would not have even acknowledged that London was speaking to her.

Greetings appeared in stages: at school, teachers insisted on speaking to Frances and greeting her. For years, Frances was not responsive.

When she did start to respond, it was usually indicated by a change in her position or moving her head away.

By the time she was around 8 years old, she would mutter a “hello” without looking up and without stopping if she were moving.

At 11, Frances may respond with a “hello” or “hi” or she may respond with an observation (that is or is not relevant to the situation). If it’s an observation, there will be brutal honesty. Either way, it is a response!

Mysteries

So, last night, Frances came into my room with a piece of Scotch tape and a washable marker, then proceeded to get my fingerprint.

She said, “Thanks for the sample” as she left. Very mysterious.

There are times when I just don’t press the issue. Take, for example, the time that the cat was a pretty shade of purple and nobody seemed to know why and, certainly, nobody confessed. The cat didn’t mind, so I eventually left the matter alone. But, I still wonder: who…? Why?

I wonder if I’ll ever know why she wanted my fingerprint… 🤔

😂