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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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!

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.