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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Climbing the walls

When Frances was younger, starting as a toddler, she would climb anything and everything. It was quite impressive even though it was frightening.

When I mentioned this to her wonderful doctor (a developmental paediatrician), a few years later, he asked: “Has she ever fallen?” The answer was that she had not, and still has not, ever fallen.

But I couldn’t leave her alone, even when she was six years old because, though she had never fallen, the possibility was there that she could, in fact, fall one day.

The dark humour of this story is that, whenever she bolted or wandered away from me at the park, I knew to look upwards, not just around, to find her.

She has always been in constant motion–skipping, jumping, running, twirling, spinning–this has never changed, and I honestly don’t foresee this changing.

By age 9, though she would frequently be unaware of potential dangers attending her movement and behaviour, she wasn’t really climbing as often.

The danger has been, and still is, more that she will stand with her feet at the edge of the top of the stairs facing backwards while talking or moving, or she will sit with her back flush with the edge of the high mattress, or even try to do donkey kicks on the sofa facing the ground.

Lately, however, a month-and-change away from her 11th birthday, I’m always finding her standing on high things, balancing while squatting or standing on the edges of furniture, trying to climb stair railings…

So, it’s back, folks! Climbing behaviour is back. We’ve come to accept that HF ASD for our family means that behaviours don’t always disappear forever. Some never disappear at all, such as sitting in dangerous positions, and sitting in the squatting position exclusively, but climbing will come and go. We just go with the flow.

My best guess is that the sensory input that she gets from climbing helps her in some way to cope with what goes on inside her body and mind.

The only difficulty is a practical one: she now requires even more supervision than she did last year.

I don’t mind because, as I’ve mentioned, I think it helps her cope somehow. What I do try to establish is a rule that I must be present when she climbs.

We’re working on that.

A fine line

I went into Frances’s school with concerns that a boy in her class was having angry outbursts and making her feel unsafe.

The school denied that he was having outbursts, and they didn’t think Frances was in any danger.

I mentioned a recent incident in which Frances was hit by a ball thrown by him.

A witness says he merely threw the ball with the expectation that Frances would catch it. 

So, here is the problem: Frances has great difficulty discerning motive or intention in others. (It was first noticeable during her year of junior kindergarten, and it has not changed in degree or severity during these past five years.)

If a kid brushes past her in the hallway, she thinks it was done on purpose. Every. Single. Time. If someone walks past her table and causes a crayon to fall off, she thinks it was done intentionally. Every. Single. Time. 

You can reason with her and explain the events as accidents, but she won’t believe you. She actually doesn’t know why someone did something, and thinking the worst, in a way, protects her. (It’s not hard to imagine the ways in which someone who doesn’t read motive in others could be led into danger.)

So, you can understand how she might not have known that the boy intended to include her in a game of catch.

People, social situations, interactions, expectations, and rules: they confuse and frighten my daughter.

As a mother, you want your child to be believed and to know that she is believed; however, when your child has ASD with this particular challenge, you walk a fine line with everyone: (1) you can’t accuse the teachers of lying, and (2) you can’t tell your child that something she experienced didn’t really happen.

What did I do? I concluded that, regardless of the reality, Frances needs to feel safe, and we came up with a plan of action that Frances can take when she doesn’t feel safe at school.

Then, I went home and cried. 

When Frances got home, I made no mention of her ongoing experiences with the boy, but I told her of the plan that she can use when she doesn’t feel safe for any reason.

Then, for much of the night, I wondered who was right. 

On the piñata

Today, at camp, Frances is supposed to be making piñatas. Sounds fun, right?

She has been talking about it for the past couple of days, and only this morning did I realize that she hasn’t been informing us as much as she has been expressing anxiety.

Pink Cup Dad and I tried unsuccessfully to convince her of how much fun she would have. 

She asked, “Do you know how many children get knocked out at birthday parties every year because of piñatas?”

“Exactly zero,” I assured her. “Besides, you’re just making them at this point, and that certainly isn’t dangerous.”

Eventually, we gave up trying to change her mind as we arrived at the day camp and just told her how to avoid getting hit with a stick when it comes time to bash them.

Rule of thumb?

Every day, Frances verifies many rules with me. Usually, they come out of the blue, but sometimes I know what inspired them.

Yesterday, she asked me what happens to biomedical waste. I googled the term, and then we discussed what is supposed to happen and what sometimes happens.

Today, the following conversation…

Frances: Don’t catch raindrops on your tongue, right?

Me: Why?

Frances: Because they come from the ocean, and people put medical waste in the ocean, right?

Rule

Frances’s many out-of-the-blue questions often reflect her need to verify rules.

Recently, she asked:

“Never put seaweed on extremely dry hands, otherwise the natural dyes in the seaweed will turn them green, right?”

They don’t always make sense to us, but they always make us think.

By the numbers

 
I chose to post this panel because it illustrates some important aspects of Frances’s life: 

(1) math and numbers — she is very good and very fast at math; it is her favourite subject, and she has great facility with numbers in general;

(2) rules — she is rules-based in her behaviour. Rules are important to her in that she needs to learn them in order to interact with others, but also in the sense that her behaviour is motivated by rules. She often verifies rules in her questions;

and,

(3) questions — it is the means by which she communicates with others, and a fascinating use of language;

(4) danger — when not climbing or bolting, Frances has a keen sense of danger.