It would seem that my posts have slowed down…But, don’t worry, I haven’t abandoned my posting. (Haha, see what I did there?)
Life does get busy here, but I do want to write more often. This is my goal!
Anyway, I’ve been wanting to share something that I’ve just noticed and which I think is cute: At the barn, there’s a policy/tradition/point of etiquette that, before opening an arena door, the person seeking entrance will loudly say, “door” and someone else will say “okay” or “no” in response.
(This avoids startling the horses and riders and also avoids someone getting run over by a cantering horse that’s really riding the rails. But that’s not the cute part; I digress.)
Recently, I’ve noticed that, before entering a room at home, Frances will knock and say “door” loudly; if she doesn’t hear “no”, she’ll go in.
It’s probably a good idea. 🤔 But I do believe that I will have to think about a way to encourage her to not open the door unless she hears “okay.” That would be more helpful for her.
I’ve also noticed a really very significant change: Frances, who has now turned twelve, will play outside! For hours!! By HERSELF!! This is absolutely huge — the trifecta that we’d long wondered about, waiting to see if it would happen — and I just can’t adequately express it.
#asd #aspergers #autism
I’ve always enjoyed the fact that Frances lines things up. In fact, to be honest, years before she got her diagnosis, I started noticing that she did this. It didn’t concern me because, as I said to Pink Cup Dad once years ago, Frances “always has a good reason” for doing so.
“Like what?” He asked.
“Like all of her baby dolls are watching TV.”
“That’s not a good reason…”
I can actually see his point now. She would have lined them up and THEN decided that they were watching TV because she doesn’t have storylines or narratives when she plays. The lining up is the priority and not the activity of having them “watch TV.” Her behaviour isn’t, and wasn’t, typical play behaviour.
Nothing has changed about this activity as she has aged, except that she isn’t interested in baby dolls anymore; she is intensely focussed upon horses and horse dolls and horse riding and horse-doll collecting and horse documentaries…
While waiting for an appointment recently, she sat on the floor and lined up her (Schleich) horses. She didn’t have a story that preceded or accompanied the lining up of the horses; she didn’t have one afterwards, either. I think it’s just what a herd of twenty-plus horses would look like if they were going somewhere.
Frances actually has many RBIs (repetitive behaviours and interests), and this is my favourite: she’s been doing it since she was about 13 months or so.
The behaviour to me seems harmless; if she likes lining up objects, why shouldn’t she? Certainly, it can be messy: I’ve literally seen hundreds of my books continuously lined up and looped around objects throughout the entire house because my 18-month-old daughter was THAT focussed. I was very impressed even as I picked up every single book.
I know that it’s a behaviour closely associated with autism and ASD. I like it.
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. 😬
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.
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.
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 🙂
I’ve been away from the blog for quite some time while recovering from an unexpected surgery and complications of serious illness.
Things have changed around here: after my three hospital admissions in the last while, Frances and Pink Cup Sister keep wondering if there will be a fourth. (I highly doubt there would be.)
Frances told me recently: “Your unexpected health crisis has forced me to mature more quickly than I would have preferred.”
Honesty is good; hers is great!!
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.
Frances has officially finished Grade 5. Her report card was excellent, and her teacher described her as “witty and sassy and delightful.”
Frances’s teacher and I actually discussed my child’s humour which she described as dry beyond her years. It often does catch me (and her teacher) off guard.
Take, for instance, the other evening. Frances and I were watching one of our favourite documentaries about a specific tornado — which she takes very seriously — when, during the segment of interviews with people who experienced the destructive event, her brows furrowed and she asked:
“Why do they keep putting ‘Survivor’ under their names? It’s not as if they could have used dead people…”
I’m so glad I wasn’t eating at that moment because I would have choked!
Anyway, she truly meant no disrespect — it was merely that the editing of the video had struck her as illogical and, therefore, funny.
And, well, I am still laughing…😂