#1838 Thursday 5 July

It's 7:15am and she's in the bath.  This morning she was awake at 6am and I failed in my quest to keep her asleep a little longer.  .... and this morning she was not even her usual well behaved self!  She was quite noisy .... wanting me to talk to her and wanting tickles.  My "command voice" instructions .... that it was still sleep time ..... they didn't work.  Ah well .... she's very good most of the time.


Stop Press .... can you help?  Our federal government intends to launch a criminal prosecution against two guys who in 2004 "broke ranks" and told the Australian people about a situation in which the government had deliberately broken it's own laws.    Now those two men are to be prosecuted!  Can you sign a petition to the Attorney General asking him to not do this?

PETITION

 

#1837 Monday 2 July

A word to Chris.... it POURED with rain today.  I took Kaylia down to Fremantle for Friendship Club .... the car windscreen wipers were going front and back the whole way.  As usual Kaylia luuurrvved FC ..... and FC luuuurrved Kaylia.
..... but after the unsettled night that Kaylia had last night, I'm bombed.  It's 7pm and I think she may have crashed already.  I'd like to do that too ..... but the past few days have been disastrous for IT and seeing this is a pay week, the IT issues have to be sorted ASAP.

#1836 Sunday 1 July 2018

It's been an exhausting day.  Kaylia has been her usual delightful self ..... it's now 3:30pm and she is in the bath .... for the third time today.  She has a huge mound of bubbles and she is VERY happy.  This morning we drove over to Aunty Maxine's and had our usual pleasant time ... followed by an op shop visit  ... and then home.

I'm worn out physically and emotionally by the process of completing an application under the Nation Redress Scheme ..... in normal government fashion the website is fraught with technical problems which add to the trauma of actually preparing the application.  The IT pitfalls are such that ... considering the average age of applicants ..... most applicants would be very challenged to complete the process .... and this would really add to the trauma of the process.

5:30pm. The application is completed....  Kaylia and I have been shopping....  I found her a pair of snugly sox to wear around the house.... so far she likes them.

Naomi and I were gobsmacked by this billboard.....   amazing lack of thought by the uni! 

It's now 9:30pm .... I've just been round the house looking for Teddy .... and he's nowhere to be seen!  No doubt he is in Kaylia's room under her bed.  I don't know why ... but he really loves to sneak in there and curl up in the corner of the room under her bed.  He's a strange dog in many ways.

#1835 Friday 29 June

Brrr ... it's midday but the temperature is only 13 degrees outside!  It's nice and sunny but .... cold!

Today is the last pay day for 2017-18 and this means that there's a lot of end-of-year processing for me.  Of course Kaylia is oblivious .... all she is concerned about is "Bali at Christmas!"  This morning I was reading the news on my phone ... and the article headline was "Bali's Mt Agung erupts again"  ..... Kaylia was looking over my shoulder and she says "Bali at Christmas!" .... so we had a little lesson about what a volcano is .... she watched the video of the clouds of ash and I explained how the planes can't fly when the ash clouds are in the air. 

I don't think she really understood 'cos at the end it was "Bali at Christmas!"

Last night Kaylia had a 'flashback' to DVDs.   She started going through her mound of DVDs and then wanted the DVD player ..... so we dug it out and it still works!  She spend the next couple of hours playing the "moldy oldies".

#1834 Thursday 28 June

Ggggood-good girl!  It's a very common sound in our lives now as Kaylia expresses her positive self-image.  Somewhere over the past 2 years she has internalised this praise action ....  and now she seeks every opportunity to generate more praise for herself.  she looks for small actions like taking a plate to the sink .... or rubbish to the bin.  I think the habit began at school but she now uses it everywhere.

This bit is for Andrew and Catriona ..... Andrew really got stuck into using the firewood splitting machine while they were here in October last year.  They split a mountain of wood and stacked it all neatly.  Now that winter is here we have been BURNING firewood big time.  I think the fire in the house has been burning for at least a month or more now.  At night the fire is loaded up and set to "slow burn" and then it springs back to life in the morning.  Today I took the three firewood bins down and used the splitter rather than taking from the stack.  It's a marvellous machine.  I would not even contemplate using an axe on the blocks of wood that surrender to the power of the splitter.

I have come across an amazingly bad bit bureaucratic legalise today.... yesterday we received a letter in the mail from the provider of an essential service ... water .... it was advising us that we were probably receiving this service at a much higher pressure than was desirable.  The letter included a list of frequently asked questions.  The first paragraph began with a description of the organisation's legal basis for operation .... that it had a license to provide a service that must be within defined parameters.  The next sentence then stated that if the organisation failed to meet that requirement, then "the customer was exempt" and the organisation did not have to meet the requirements!  In other words .... the government requires us to do a job ... but if we don't do it then it's the customers problem ... not ours!  Needless to say I was flabbergasted by this bit of "logic absence".  I rang the organisation and was pushed up the line because no-one could deal with the issue.  I finally had a phone call from a knowledgeable person today who agreed that I was quite correct!  They don't act on that strange idea ... but the person said "Yes ... that's how the rules are worded."   The idea that we can have a multi-billion dollar corporation providing the community with an essential service .... and that corporation is operating on a complete logic dis-connect!  Incredible!

#1833 Wednesday 27 June

It's 9am .... Kaylia has a holiday today as school is having a "pupil free day" to allow for parent-teacher interviews.  Kaylia has been in the bath since 7:30 ..... singing and splashing away.  I wonder if this is an activity which will stay with her through to adulthood?  If so we will need to do some forward planning!
In the back of our minds is a thought about her future .... where will she live when we are gone?  Who will look after her?  Part of our thinking is to work toward a group home for several adults on the spectrum .... something designed for their specific needs ..... with space for a live-in carer.  There would need to be an overall business structure to allow for group members to join and leave ..... it's a big topic.

On the good news front .....  we had an email last night from Anne-marie .... who was Kaylia's second aupair after Kaylia was diagnosed as being on the spectrum in June 2006.  Anni came to stay with us from July to December 2007.  Anni went on to study accounting and became a uni lecturer in the field.  She now has a position at a uni in Melbourne and she will be moving to Australia again in the near future.  So we will see some more of her!

Over the 12 years since Kaylia was diagnosed, there have been 30 aupair changes .... 42 people  .... most single but many couples.  Many of the people have a lasting place in our affections and overall it has been a very good experience to have had the extra household members.

4pm  We've been to the meeting ... we are fortunate that the meetings are always good.  This is the comments section at the end of her report.......

I really don't think that we could ask for a better report than that!

Evening:
I'm playing with a new toy .... a Chromebook!  It's a laptop that uses the browser as the operating system ..... and so far it's very impressive.  I don't think it's a total replacement for a Windows based computer ..... but it has some big pros to balance the cons.  Among the pros is the instant startup.  The whole package is sort of a cross between a tablet and a laptop..... interesting.

#1832 Tuesday 26 June

Kaylia woke at 4am this morning .... I think she was cold because the blankets had slipped off the bed.  I noticed that she has changed her habits for this process.  In the old days she would come CLOMPING up the stairs .... wanting to hop into our bed.  Now there's no more clomping .... she walks quietly up the stairs and stops half-way ..... once she has heard me stirring she then returns to her room and waits.

She was cold this morning and she didn't settle back to sleep till 5:30am .... I know this because I stay with her and I have to keep reminding her to stop talking .... it's sleep time!

Yesterday I was searching for an old photo and I came across the videos of early therapy sessions when we were teaching her  to name objects and to use sentences ..... she has come a long way since those days ... but she still has a long way to go to reach an ability to match her age.