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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Happy New Year!  

A Christmas 2016 Update

Fortunately, Pink Cup Dad has been on vacation because I’ve been really sick. So, he took care of Frances on his own until yesterday when he went back to work.

The Christmas season officially ends for us in the second week of January as the kids return to school.

This festive period in general has been very hard for Frances throughout the years: changes in the environment (decorating), dismantling the tree, too many objects (gifts) around her, people coming by to deliver gifts, too much noise, too much of everything. The poor kid usually has several meltdowns.

I think that there must be some ASD families who try to avoid Christmas altogether. But in our case the change of NOT putting up a tree or decorating or opening gifts would also be horribly stressful for her, so we err on the side of celebration. In the past, we’ve staggered gift opening and limited visits.

At any rate, Frances found her way through this particular Christmas holiday probably with slightly less stress than in previous years. 

Christmas Eve was very difficult for her: she ended up sleeping for only two hours (from 3:00 a.m. to 5:00 a.m.). 

On Christmas Day, she had her 8-year-old cousins with whom to play, and ordinarily she has a very difficult time: meltdowns, conflict over sharing and the rules of play. 

This year, Frances had only one big meltdown (involving play) and some other relatively minor ones on the big day. Considering her lack of sleep, I think she did very well.

The next most stressful part about Christmas for her — removing all signs of the holiday — is coming up next.

I’m just too sick to deal with the Christmas accoutrement at the moment, and it will have to be put away at a barely perceptible rate when I finally can do so… There will, unfortunately, still be some tears.

Then, dear readers, we will have a small break from celebrations until birthday season is upon us from February until July…

(I should add: Frances really enjoyed Christmas, but I was trying to write about how she reacts to it regarding her sensitivities, etc.)

Before the recital

We were waiting for Frances’s school recital to begin last night, and Frances was running all through the auditorium to get out some energy.

Frances has the most energy of any child I’ve ever met: she doesn’t seem to experience sleepiness. (This will come in handy at university if she’s staying up all night to finish essays.)

I do joke about it sometimes because it’s good not to take things too seriously (and we make sure she gets enough restorative sleep.)

There was only one other parent waiting with us before the recital. I’m quite comfortable with this mother as we’ve both had children at the school for some time and she really likes Frances. She’s got a great sense of humour as well as very active kids, and the following exchange occurred as Frances ran around.

Other Parent: Frances is still very active, isn’t she?

Me: Yes…but I saw her yawn once. 🙂

She actually did yawn this past autumn, in the car, for the first time that either Pink Cup Dad or I could remember. 
It’s just who Frances is and the way things are. She may experience being tired more as she ages, but who knows? For now, she’s our very sweet bundle of energy.

Christmas 2016 update

I spend much time sketching, and I end up filling more than one sketchbook in a month. 

My sketching is often just comics featuring my family or whatever I happen to be thinking about. (This morning, I sketched all of the CBC journalists that I could remember because I was listening to a Canadian news programme called The National.)

All this to say that I haven’t written much about Frances this week.

But I would be remiss if I failed to mention that Frances recently received a letter from the North Pole because she had written to Santa on November 9th. Her own missive to her favourite holiday figure was written using a free stationery kit that Toys R Us distributed last month, and we sent it to the North Pole.

The list was so long that she used both the English and the French pages.

Well, I’m finished Christmas shopping now: Santa won’t be delivering a horse (or a pony) this year, but I’m certain that Frances (and Pink Cup Sister) will be happy with what appears under the tree on Christmas morning. 

As for our next writing/Christmas project: we like to choose one news story that features a child who wishes for something for Christmas (such as cards or homemade art), and we try to honour that wish. This shows Frances, I hope, that there are different ways to connect with people, and I’m hoping that it helps to show both girls the importance of thinking of others.

A horse is a horse, of course

As it turned out, this week, Frances decided to ride another horse (B) for her lesson. She told her instructor that she wanted to try a smaller horse and, actually, she really has wanted to know what riding another horse would be like.

B’s a very responsive, energetic horse who is very much unlike the horse that she has been riding since the start (A). Whereas it would take much effort to get A to move, let alone trot, B required no such work.

For the first time, and quite ahead of my expectations, Frances did her first full jump! She said that, as B trotted, she just leaned forward to hold on and over the full cavaletti she went (under the guidance of her instructor).

In general, B gave Frances a better riding experience than A usually does.

I’d say that B actually inspired confidence in our little equestrian, dear readers, and it was wonderful to see throughout the lesson. (Apparently, it can take anywhere from three months to three years to learn to jump — I’m glad that she felt confident enough to do so at this point.)

Sadly, as Frances went to visit A before leaving the stable, A turned to face the back of the stall. She moved into the adjacent stall to try to pet him, but he then turned his back to her again. So, there is some relationship work to do (much to my surprise).

Frances was disturbed by this turn of events, but I later explained that A has to learn that it’s okay for her to have other horse friends, that she doesn’t like A any less. Next week, she can bring him some carrots and apples. 

Unlike other activities, horse riding doesn’t break for Christmas — so she’ll have lots of opportunity to show A that they’re still good friends even though she wants to switch horses.

Halloweening

Frances has so much energy lately — even more than usual, which is quite a lot — and we’re really looking forward to going out trick-or-treating tonight.

Ordinarily, over many years, we’ve gone to a party, which was great fun, and the evening usually would end with me taking Frances door-to-door by ourselves, away from the others. (At last year’s party, we didn’t separate from others, and she did so well running alongside other kids her age.)

This year, it will be just her and myself. 

We haven’t gone around our own neighbourhood in years, and it will be a nice change. Pink Cup Dad will be staying home and handing out candy.

In anticipation last week, Frances and I actually planned our route: she drew maps, and we selected starting and end points. 

Yesterday, we happily carved the pumpkin. This is usually the province of Pink Cup Dad, but I wanted to take a turn this year. (I was going for a traditional face for my first ever jack-o-lantern.)

I think we’re ready!

Priorities

Frances made a cute list of things she wanted to do before Christmas during Christmas vacation — number five was my favourite: Capture an elf. She said she might believe in Santa if she could capture an elf.