Light play

Frances has been playing with light since she was 9 months old. She would often grab my booklight and look at it with a big smile on her face!

Over the years, she has developed many different ways of interacting with light and light-emitting toys.

One thing that she still loves to do is to turn switches on and off very rapidly over and over again. 

Like many behaviours, this one has disappeared and reappeared several times.

We discourage it (for safety reasons) with explanations and distractions–other means of light play available to her are harmless. 

But as long as she can play with light, she is happy!

Summer and structure

Frances needs structure — lots of it. In the past, summers have been very difficult for her for this reason.

So, school has ended for the summer break, and we have encountered a little difficulty in this regard: we had signed Frances up for a summer filled with day camp through her school; unfortunately, the school has cancelled the camp!

We’re down to four weeks of day camp from 10 weeks, and the deadlines for other camps have long since passed.

If I can get her interested, I thought reading Anne of Green Gables to her might help with her need for structure. There are many kinds of crafts or art that can be done with that theme in mind.

I’m definitely open to suggestions for helping to keep her time structured!

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Achieving goals

The Pink Cup household is never boring. There is always a bustle of busy-ness around here. 

But, it is important to note change when it occurs, and there have been some pretty positive goals achieved in the past couple of months:

  • Frances will get her own breakfast now if I’m sick
  • Frances reluctantly agrees to take showers
  • Frances showers without any assistance 
  • Frances reluctantly agrees to wash her hair
  • Frances washes her hair without assistance
  • Frances reluctantly agrees to stay in rooms by herself 
  • Frances reluctantly stays in rooms by herself 

Though she is having trouble adjusting to big changes in her classroom, there is definitely more independence as she approaches her 10th birthday this month.

An unexpected change

Frances had a bit of shock yesterday: her teacher, who is due to give birth in April, has to go on bed rest; so, today is her last day.

Frances is presently in a multi-age classroom, from grades one to four; next September, she will be graduated to the grades five to eight class.

The teacher wouldn’t have been her teacher next September. So, Frances has been prepared for an eventual change, but the rapid changes next week will mean a difficult transition for Frances. 

The transition will primarily involve changes in her behaviour: she doesn’t tell us when she has anxiety (by which she is highly affected). She is exceedingly verbal, and, as she ages, she is able to communicate emotions and states of mind better, but we still rely on looking at her behaviour to know how much anxiety and difficulty that she is experiencing. 

So, I’m just crossing my fingers that next week won’t be as difficult for her as I think it probably will be.

The faces that you meet

I was reflecting last night upon the fact that it has been just a little over 3 years since Frances’s HF ASD diagnosis.

Though I normally just read or sketch while waiting, I found myself having a conversation with a mother of two children with diagnoses of severe classic autism last night while Frances attended an ABA (applied behavioural analysis) social group. 

Both the woman and her children seemed very familiar to me. Her children were actually the exact age of Pink Cup Sister.

She asked me about Frances’s diagnosis, and I did my best to explain that Frances was given a diagnosis of high functioning ASD but that we were told that it could possibly be high functioning autism (as opposed to what used to be known as Aspergers). 

As the woman and I spoke, it occurred to me that she and I had a lot in common: there were definitely differences in our experiences, but we both had lives that revolved around routines, accommodating/managing/anticipating behaviours, setting goals, and going to appointments.

It transpired that we had been seeing each other off and on since Frances was a toddler and her girls were around four or five years old.

Before Frances was ever diagnosed with ASD, she was seen by professionals for gross motor and slight language issues.

So, we attended a development and rehabilitation department at a beautiful, ancient hospital where goals were set and each one was met through play groups, physiotherapy, or early-communication groups (from 12 months to 26 months old).

It was at this building that the woman and I would have seen each other in waiting rooms, corridors, and parking lots.

It was nice to meet her formally, and I ended up getting some good, useful information on summer activities for Frances.

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.)