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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Growing up

I haven’t been posting much recently because I’ve been so busy attending to Pink Cup Sister’s needs, but also because it’s difficult to write about some things.

For example, Frances is acutely aware that her school mates are “growing up” and she thinks that she may be just as young socially as she was when she first started the school back in 2012 at age 5.

This isn’t accurate, but that’s how she feels. She actually has grown unbelievably, in leaps and bounds, from the little girl who never acknowledged people speaking to her and who never looked at anyone, into a young lady who is passionate about all things equestrian and very comfortable with the people whom she knows.

She is definitely older intellectually than her 11 years by quite a few years, and, yes, a little younger socially: she still wants to collect and to play (yay!) with horse dolls, while her school friends move into the more frequently seen middle-school behaviour of standing around while chatting on the school ground during recesses.

So, she’s gone from the little girl who didn’t want to/know how to play with other children to an older child who wants to play and usually has no opportunity to do so.

Recently, while at a horse show, we were surrounded by the people we know–her coach, the stable owner, other riders and parents–from the stable. Frances, though hoping for someone to play with, announced, “I don’t understand non-horse people,” and everyone said that he/she understood this very well. She then said, “I’m a ‘me’ person, not a ‘we’ person.”

But nobody agreed with her. I put my arms around her (because she sometimes allows me to do so), and I said, “I don’t know about that. These are your friends; these are your people.”

Maybe they don’t play anymore, but they all love horses and “the horse life”, too. We all share an understanding of what it’s like to muck around in dirt; we all know the physical labour involved in loving horses (some of us more than others). At that moment, the feeling of camaraderie was palpable in the spectator stands. I think she noticed as everyone was smiling.

As we fell asleep during our weekly sleepover, I confided: “Mummies and Daddies get a little sad when their children stop playing with toys. I hope you’ll play with toys for as long as you want to even if you only have yourself to play with.”

This seemed like a good idea to her, and we drifted off to sleep while the intense heat of the day eased off and a gentle breeze made us feel better about a lot of things.

The birthday girl

We celebrated Frances’s 10th birthday this weekend, and there were no meltdowns during the two parties. 

She covered her ears during the “Happy Birthday” song both times, but we kept the numbers very small at both the party for friends and the party for relatives, so she didn’t get overwhelmed in general.

At the party for friends, in addition to a few classmates, she had two friends from horse-riding lessons which was really nice.

Guess what theme predominated the gifts that she received? Horses. She got every manner of horse toy for which a ten-year-old horse-and-doll-loving little girl could have wished, and it was really sweet.

The trusty Barbie unit of measure

We’re at the end of a snowstorm which could be winter’s last hurrah. 

Late yesterday afternoon, while explaining the amount of snowfall to Frances, I said, “Oh, it’s less than half a Barbie in depth.”

So, dolls really are everywhere in our life now.

But dinosaurs weren’t pink…Right?

I have two daughters (9 and 13) and the closest I’ve ever come to a non-girly themed celebration was the Backyardigans party that I arranged for Pink Cup Sister’s 4th birthday.

Now Frances, who is obsessed with dolls and horses, has just announced that she wants a dinosaur-themed party to celebrate her 10th birthday!

I’m glad that she has a new area of interest though I strongly suspect we are just going to be seeing dolls of the dinosaur variety.

Well, I almost don’t know how to have a party that isn’t just as pink and as glittery as can be, so this is going to be a challenge for me. (The photo image I’ve done in jest.)

In the past, I would have said that if I ever start blogging about dinosaurs, then I have been taken hostage and I’m crying out for help.

But, here I am arranging a dinosaur party that isn’t pink in any respect.

I will keep you posted.

Possible birthday card?

A play date

Frances went on a long play date today (without me). It’s the same family that hosted the last one, the one that is familiar with Frances and her needs.

It seems that the event went very well until two other, unfamiliar children showed up unexpectedly. If anyone had known this was going to happen, I could have explained the difficulty that Frances would experience.

She has trouble joining groups and staying in groups of children. She does well with one other child, but things break down for her when more children are involved. She also doesn’t interact with children that she doesn’t know unless she is helped to do so.

I see it as another in her series of developmental stages of relating to others. Recently, I made a list* that enumerates her social development:

1. at ages two and three, she seemed completely unaware of other children;

2. at age four, she screamed if children appeared to be coming near her at the park or on the playground or in the library; 

3. she had meltdowns and screamed at the park or library or social event every single time; nearby children and parents were often confused or alarmed by her behaviour (screaming and crying) if they tried to interact with her;

4. she allowed children to try to play with her or just be near but did not acknowledge them in any way

5. she acknowledged other children in some way, but only to complain that they were harming her or being mean to her or doing something wrong socially (when they weren’t);

6. she allowed children to play beside her but told them when to leave (usually after a couple of minutes);

7. she stopped telling other children when to leave but told them they were annoying her;

8. she sometimes let a classmate play beside her, but not usually, and stated that she wanted to play by herself; she still always complained about other children;

9. at age seven, she usually let a classmate or two play beside her but with much conflict and confusion; unknown children at social events could be near her but were still not interacted with; 

10. she played with classmates using her own rules and didn’t follow along with the others; attempted play dates always ended because of meltdowns;

11. at almost age ten, she plays with classmates as long as rules that she knows don’t change or another activity isn’t initiated midway and still plays primarily alone or beside others; she still has trouble joining groups and there is no interaction with unknown children unless it is facilitated. Play dates do not end because of meltdowns.

She has actually had a lot of occupational therapy to help her join groups and read the cues necessary to stay in them while at play. It takes time and practice to really master these skills.

Unfortunately, she had a huge meltdown after she came home but couldn’t tell us why. After a few minutes she mentioned the other, unknown girls joining but not the difficulty that she’d had.

But I knew immediately. She would have been trying her very best to join in, but she just couldn’t manage it, and the parents didn’t know about this particular difficulty of hers. (I didn’t think to tell them because they only have one daughter with whom she plays.)

I’m not surprised that she became frustrated and overwhelmed.

Anyway, she’ll be calmed down and back to her usual self tomorrow.

She is now watching her favourite movie with Pink Cup Dad while I marvel at the curly hairstyle that I gave Barbie at Frances’s request.


*I don’t know how Frances’s social development compares to other children with ASD. Also, I use the words play and interact interchangeably, and Frances’s idea of playing really differs from what is considered typical of children without ASD.

The new ABA group

Frances was near crying as the other girls of her ABA (applied behaviour analysis) group walked into the reception area.

“I’m not going,” she told me.

“I don’t want to go somewhere without you,” she said. She was pouting.

“You didn’t consult me. You didn’t even ask me if I wanted to do this,” she reminded me.

The ABA interventionist/group leader tried to talk to her, but Frances buried her face into my coat.

Then the group leader uttered the magic words:

“We have dolls!”

Frances looked up. “OK,” she said. “And Barbies?”

The kid didn’t even look back at me as she walked down the hall. 

That was last month, and she has only grumbled a bit beforehand since then; there’s a much smoother transition now.