Saying hello

Recently, for the first time, Frances has tried a few times to say hello to different people — which is fantastic.

The difficulty that she encounters is that she is not reading the cues: the person is on the phone, the person is too far away to hear, the person is in the midst of noisy traffic. Consequently, her attempts have been unsuccessful.

I’m really hoping that she does not become discouraged and that she continues to try on her own (i.e., without being prompted or coached).

Sleepy

Well, the first week of sleeping on our own hasn’t really worked out. 

I was up many, many times throughout last night, and I don’t hold out much hope for tonight.

(We have Frances’s occupational therapy appointment on Monday.)

I guess the good news is that we completed the five-week program regardless of the end result — an accomplishment in itself.

The music is the process

There are many stereotypes about people with ASD that Frances is going to confront. It might even be a trickier matter than I originally thought since it occurs to me that she actually has stereotypical traits and behaviours.

Music, for example. In the long process of getting her diagnosed, one well-meaning paediatrician asked, “Is she musical? They [people with Aspergers] often are quite musically inclined.”

Well, and I know that I’ve written about this before, she is very musical. She actually plays the piano (and xylophone) by ear — with pinpoint accuracy. 

We have an upright piano, but Frances spends more time at the keyboards (perhaps because it is more precisely tuned than our antique piano).

She keeps her hands on the keys but turns her head away while looking upwards, listening to something that only she can hear.

When I watch her, I wonder: why does it come so easily to her to simply listen to a piece of music and then play it back so accurately?

One reason might be, as her piano teacher noted, that many people get frustrated by the process of learning the piano whereas Frances uses the process to work out her frustration. The challenge is actually what drives her.

Who knows? All I know is that I enjoy listening to her.

Beddy-byes

I’ve written about how Frances’s sleeping problem has always been an issue, but not about the work Frances is doing with the occupational therapist.

We have been working a five-week plan that involves changing my sleeping space weekly: the first week, I slept on a mattress beside her bed, then, in the second, third and fourth weeks, the middle of the room followed by the doorway and the hallway. 

I am happy to say that I am now sleeping just inside my bedroom! Okay, maybe not happy, but I’m excited that we are in the fifth week.

With the exception of a couple really bad (read: meltdown) nights, it has been smooth-ish sailing.

Next week, I will return to my own comfy bed and Frances will be comfortably ensconced in her own bed — alone. This should mean that we will both get a good night’s sleep from now on.

Glasses update

 
When Frances was about four months old, our doctor informed me that Frances needed to see an ophthalmologist: her eyes were crossed (bilateral strabismus) and they weren’t straightening out on their own. 

Consequently, she got glasses at five months old. (It was quite a challenge to keep those glasses on her while she was a baby: she kept taking them off, and I was always nervous about the possibility that she would poke herself in the eye with one of the temples.)

At eighteen months, she had surgery on both eyes. (Unbelievably, she was not distraught in any way either during or after the operation.) Afterwards, for the first time in her life, she was able to see out of both eyes at the same time.

So, the surgery was very successful in that respect, especially considering that one pediatrician actually took ‘before’ photos of her after telling me that it was the most severe case of strabismus that he had ever seen.

Unfortunately, the surgery over-corrected one eye and that eye turns outward at times, especially when Frances is tired. 

On Tuesday, we learned that the doctor wants to correct the alignment, so Frances got yet another prescription…

Perpetuum mobile

Frances is always active, forever in motion. 

On school breaks and weekends, we need to take her outside to let her run around, otherwise she experiences discomfort in her legs as well as meltdowns.

Since toddlerhood, Frances has always found ways to move around. For instance, she sometimes constructs ‘roller blades’ or ‘scooters’ using very large Lego. 

She has also used stationary bicycles to pedal and thereby release some energy.

Before she was even tall enough to sit on one, she would stand beside the exercise bike and just pedal with one foot; the other foot would either remain on the floor or rise and lower with that which was on the pedal. 

(Her pedalling has always made me nervous tho’, so I hold onto the bike while she does this. I’m much more comfortable with the idea of her getting rid of some energy by going to the backyard or to the park.)

Sometimes, we come up with new ways to help her. For example, over the past long weekend, we took her ice skating two days in a row with the idea that we would allow her to skate until she tired — this just didn’t happen. After two hours, she just wanted to continue to skate. We ended up leaving when WE were too tired to keep going.

At any rate, a neuropsychologist observed that Frances moves as if she has a motor inside her, and my family and I would agree.

Over the past couple years I’ve spoken with quite a few parents of children with ASD, and I’ve learned that the extremely high energy is pretty common.

Brrrrr…

With the temperature hovering around -16 yesterday, we decided that the best thing to do would be to go ice skating.

So, we headed out to the local indoor rink.

Frances learned to skate yesterday — her father taught her while I trepidly tiptoed on the ice in my skates.