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.

🙂

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More light play 

Frances has always loved to play with light and light-emitting objects. Here, she is holding a smallish green toy.

Light play

Frances has been playing with light since she was 9 months old. She would often grab my booklight and look at it with a big smile on her face!

Over the years, she has developed many different ways of interacting with light and light-emitting toys.

One thing that she still loves to do is to turn switches on and off very rapidly over and over again. 

Like many behaviours, this one has disappeared and reappeared several times.

We discourage it (for safety reasons) with explanations and distractions–other means of light play available to her are harmless. 

But as long as she can play with light, she is happy!

Table of lights 

This was taken at the local children’s hospital (at which we spend so much of our time).

Frances was there to see her occupational therapist who has most recently helped Frances with having her hair brushed.

She’s playing at the touch-enabled light table. If we only had one of those!

The light fantastic

Frances has a wonderful relationship with light — her lifelong fascination has enabled her to distinguish between two closely related shades of a colour seen months apart. (In fact, she couldn’t concentrate on anything other than the fact that the blue playdough at the play centre was slightly lighter than it had been six months earlier, and I remember that her complaints confused the other children in nearby activity centres.)

Since the age of nine months, she has been drawn to light-emitting objects to the degree that she can’t be redirected, from switching lights on and off to finding our hidden flashlights. I know that it will be an especially difficult bedtime if she has discovered something like a flashlight just beforehand. In fact, in so many of our photos she holds a lighted object in her hand!

Her intense interest has helped me to more fully appreciate the properties of light, even though I can’t quite manage the visual games that she plays with luminous sources.

(In the above photo, Frances is interested in a shiny necklace near her glowing robot. She is four years old.)

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.)