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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No pink dinosaurs this year

It’s birthday-planning time again. Time has flown by in the blink of an eye.

I find it hard to believe, but Frances will be 11 years old this month. She is younger socially (about 8/9) and older intellectually (about 14/15).

But buying gifts isn’t as difficult as it may sound; she still only has one interest which is expressed in dolls and books and conversations and lessons: horses. (Thankfully, she has discovered, in the past year, Playmobil horse sets, so our options have expanded.)

In my previous post, I discussed the fact that some behaviours sometimes come and go, or change, well this includes her behaviour in response to stimuli such as sound (and the emotions of others).

In the past, when very young, she would hold her ears and cry (leading to lying on the ground and screaming) when her environment was too loud.

By the age of 10, she wouldn’t often lie on the ground screaming but would hold her ears and, eventually, cry.

Now, her facial expression clearly says “anxiety”, and she starts flicking/tapping her fingers which rapidly alternates with flapping her hands, while making sounds that quickly lead to crying.

Being in restaurants, school, theatres, buses, streets, malls, stores, etc. still causes her great distress. (So, I’m actually baffled by the private facility that provides her weekly social group when they choose bowling alleys as a venue.)

Of course, not all children with HF ASD react to the same stimuli or even to the same stimuli in the same situations, but Frances has always responded to “loudness” with obvious coping behaviours.

Recently, I’ve also noticed that where the emotion of others is concerned (such as if another child is angry or sad), she now repeats a word or a sentence over and over again while holding her ears and, then, while crying (when she previously would have cried without the use of language).

At any rate, we have two options when coping behaviours appear: remove Frances from the environment or have her listen to music on her phone with earphones.

Usually, we try earphones and music; if this doesn’t work, then we have to take her out of the environment either temporarily or permanently (depending on whether her distress continues and/or if she’s willing to try again.)

I wonder if the change in coping behaviours indicates an improved ability to communicate distress? Or if it means that Frances is actually in more distress than she would have been in the recent past? Or both?

Ah, so many questions as always where ASD and our girl is concerned.

Anyway, I’ve got to get some birthday shopping done now.

🙂

Good changes

Like many children with ASD, Frances has a severely restricted range of foods that she will eat.

I have to explain: there are several foods that she will eat in general, including vegetables, but, in a single week, she will focus only on one or two foods. (She also won’t eat food that is soft or food that is at room temperature or combination foods such as sandwiches, soups, pizza, etc. Food served must appear the same way that it has always appeared or it’s “not the same” and she won’t eat it.) Meltdowns at meals are inevitable even when the food options and appearance are acceptable, and we’ve accepted this as being just the way it is.

Anyway, this week’s appointment with the occupational therapist pretty much consisted of me telling her that we didn’t stick to the food plan that she had devised. We were supposed to make it so that Frances couldn’t eat the same food within a three-day period.

Yikes, that schedule didn’t go well. First, it represents change for which Frances has a low tolerance in general; secondly, we went on vacation and food sources were restricted mostly to restaurants. We did have a two-bedroom apartment for the duration, but our plan of buying groceries and eating in wasn’t as practical as we had anticipated that it would be.

Also, with the disruption of routines that vacations bring, we didn’t want to add to this stress by forcing a change in her eating at that point.

Now, this week, we are home, she is settled at school as well as in her social group, piano lessons, and horse riding lessons, and we are trying again.

I can say for certain that it isn’t “just picky eating”, and she really won’t eat anything if she gets hungry enough. She just won’t eat. So, a strict schedule involving foods that we know that she will eat is definitely the only path to take.

In contrast, Pink Cup Sister IS a picky eater. The difference is that there is no pattern to what she will or what she will not eat. She simply likes something or does not like it, and she is hard-pressed to tell you why either way: it tastes good to her or it does not. She also will attempt to eat what she doesn’t like if she’s hungry.

But, with Frances, it is hard work getting her to eat what she needs. It’s certainly in her best interests to keep trying and making sure that she has whatever supplements that she requires. There just isn’t much left in her range of acceptable foods after ruling out softness, room temperature, combinations, and differences in appearance.

Fortunately, Frances is very good at achieving goals, and I’ll help her do this, too.

She’s such a gentle soul that I always want to tread softly over ground that is difficult for her.

Lights

Since about 9 months of age, Frances has been fascinated by light-emitting objects: book lights, flashlights, house lights — during the day and during the night. 

Once she is distracted by a light-emitting object, it is very hard to redirect her attention. Unless it’s at bedtime, we generally don’t mind, though we discourage turning house lights on and off repeatedly. 

(In the following panel, she is eight years old.)

 

Early on

 
One thing I found unusual was that she did not want to be held by anyone (at times, even by me). She arched her back as if to get away, and immediately cried or shrieked until she was comfortable again. This continued throughout toddlerhood and the preschool days. 

At this point, she does not like to be touched unexpectedly; when asked for a hug, she usually just leans into the person if she responds at all. (Hugging others spontaneously when she wants to, however, is another subject for another time.)

I do sometimes, in a low mood, think back to the times when one of our relatives told me that it was my fault that Frances wouldn’t let anyone hold her.

In those days, at any rate, we were several years away from a diagnosis.