#1945 Monday 31 December

Happy New Year!

It has been a year of important events and the new year promises significant changes for us all.

Best wishes to you.

It's 11:30 and the noise around the villa is building up to the midnight climax..... guys are riding round the streets blowing compressed air horns..... fireworks are exploding all round..... sometimes the fireworks are just a few houses away.   It's mayhem.

#1944 Sunday 30 December

Kaylia had another big sleep in.... as usual.  She seems to be needing the sleep so it's good.
After breakfast we went to Top9 again to see if the budget would stretch to buy a new dining table..... only to find that despite advertising that they were open, they were actually closed.

During the night Mt Agung began erupting again. So far its not a biggie. .... but it upsets guest bookings..... and it might disrupt our flight home next Sunday.

Midday
She's in the bath again.

#1943 Saturday 29 December

Last night we had a visit from Susie.... she's the tailor that is making clothes from the materials purchased on the shopping trips...... and some of the clothes are for Kaylia of course.
During the visit, Kaylia had to try the various items on to check the fit...... and she was soooo excited by it all.  It was a joy to watch.

This morning Kaylia is having a BIG sleep in..... it's now 10:30am and she hasn't stirred.  Yesterday's upset must have been from tiredness.

Excitement for the afternoon!  We came home and found a large monitor lizard running round the yard.  We named him Henry and we'd like to keep him.... but our guests would not agree!  So one of the staff took him home for tea. 

#1942 Friday 28 December

Kaylia's in the bath..... she wanted the bath at 6:30am but I  managed to delay her till 7.  She has a new brand of bubbles..... which froth up really well..... and after a while she called me for "more bubbles".... and there she is..... hardly visible under a mountain of bubbles!  No more!

Midday
Kaylia's not happy....  there's something on her leg that looks like a bite.... inflamed..... it might be hurting her but we can't tell.  It's another case of the lack of speech being a real problem..... if only she could tell us what is wrong!

Evening
She recovered from the pain or whatever.... she didn't have a temperature so we suspect that it was hurting.  But she's back to normal..... and she's back in routine.

#1941 Thursday 27 December

The day began with the usual big sleep in.... followed by a bubble bath.....  while the girls headed over to Denpasar to hunt for fabrics at Jalan Suluwesi.  They returned midday with big grins and arm fulls of beautiful material..... and lots of dressmaking plans.

The day was spent supervising a makeover of the garden in the bathroom.....  it was very successful.

#1940 Wednesday 26 December

A quiet "Boxing Day"..... not much happening

#1939 Tuesday 25 December

Happy Christmas!

Last night I received a lovely email from Chris (Nov13 to Apr14) and the process of reading the email took me "down memory lane"..... remembering all the wonderful people that we have been so fortunate to have share our life. 

Thankyou all so much.

Many of you are still close in Kaylia's memory..... she looks through photos on the computer.... and she has the photos around the house.  In the future she will tell us just what those memories are.

Today?  It's 6:30am and Kaylia is asleep beside me.  She has been very excited about "presents" and I can hardly wait to see her enjoyment this morning.

Below is Kaylia with her favourite present.... bubble gloves! 

and look what Kaylia made for me! 

Christmas lunch at Prama... It was terrible!  But Kaylia was chilled...... 

#1938 Monday 24 December

Christmas eve.

Kaylia had her first massage this afternoon.  She seemed to enjoy it.... so there will be more!

Today we took delivery of new furniture for the lounge room and dining room in the villa.  The old furniture was 7 years old and had been repaired twice after being broken by guests.  The new furniture is very heavy teak.... absolutely gorgeous.... and unbreakable!  It was a very low price by Australian standards so we feel privileged to be able to buy it.

Casey's friend Zariah came home today with some beautiful purchases. .... and if you look closely you'll see her latest tattoo. 

The Christmas eve preparations are complete. Casey and Zariah have constructed a beautiful table montage that's a very adequate substitute for a tree..  Kaylia has gone to bed very excited.....

Christmas tomorrow. 

#1937 Sunday 23 Dec number two

A friend asked about Kaylia and helping round the house.   ..... No... Chores are not really big in her world.  I think the picture of her helping with chores is too optimistic.  For her to set the table is about a realistic limit.  She is still almost totally self absorbed.  Occasionally she will seek contact with us... or engagement..... but she mostly stays within her world.  This means that she is fairly easy to care for..... but I don't think that helping round the house is ever going to be on her menu.

It's sad.  It's very hard for neuro-typical people to grasp just what autism is like....  I think you'd need to spend a day or so with us to fully comprehend it.  Usually our social engagement is not for a long enough period.   I think visitors possibly view us as being rude.... but we constantly have half our attention on Kaylia....  and that is not good for social interaction!

Uh oh....  Now I think I know why I haven't been feeling crash hot for the past few days!  I think I have some kidney stones trying to say hallo.  Ah well.... I know what to be on the watch for.

Sunday driving in Bali! 

#1936 Sunday 23 December

Some Bali pictures......

#1935 Saturday 22 December

We're at Oleh Oleh .... it's a sort of department store.....  gorgeous clothes and stuff.... so we're doing Christmas shopping.

#1934 Thursday 20 December

We visited a mini-water park at a nearby resort.... Kaylia was impressed.   Here she is in the big pool. 

#1933 Wednesday 19 December

She's fixated on Christmas and on presents!  This is new for Kaylia.  In the past she has not really been aware of the imminent event.....  and she was only aware of  presents in the moment.  But now her mind has latched onto the future event!

Imagination!  She has visualised the future event.... so we can work on the picture that she holds in her mind.....  is this the key that will open the locked door of "no imagination"?

#1932 Tuesday 18 December

Settling into routine..... Kaylia's still coming back to "School tomorrow?"  repeatedly.....  we respond with a reminder that we are in Bali.....

Today we have no water at all!  The pump repairs (which were started yesterday) are taking longer than expected.   Buckets of water for the toilet.... swim instead of a shower..... let the dishes pile up!

Our big task for this trip is to replace the living room furniture.  The set we bought 7 years ago has not been able to stand up to guests flopping down.... the structure is too weak and continually breaks.  Yesterday we found a replacement.... beautiful yet very strong.

#1931 Sunday 16 December

The crew is in residence at the villa.  Naomi, Kaylia, Casey and me.  We have another arriving this afternoon.... Zariah... friend of Casey.

Kaylia is very clearly glad to have her daddy again after nearly 2 weeks absence.  This morning at the shops she would stand next to me and just rub herself over me.... getting close. At the moment Kaylia is in the pool.... splashing round.

Kaylia and me.... chillin and watching "Happy Feet"

Now we're at Aquaviva for tea and we noticed this variant on the menu..... 

#1930 Thursday 13 December

We left Pondock Sariswati at about 9am and by 10 I was back in the villa .... with one of the men from the Elders Way.  

James' flight leaves on Saturday so he and I have a day and a half to "unpack" the week and to cement our friendship.  It's a good time.

#1929 Wednesday 12 December

This post is about me .... not Kaylia.  I'm posting it here and not in my "Mad Musings" because I know many of you would only read Kaylee's blog.

.... and this is indirectly about Kaylia ....

This morning I had my first tattoo.

It's a semicolon.  In case you didn't know, the "Semicolon Project" is a statement by survivors of suicide .... to say "My story isn't over."

Till now I have not felt able to have this tattoo because I felt that my story was over. 

During this week at the retreat for senior men "The Elders Way" I have found new hope .... and now my story IS NOT OVER.

#1928 Monday 10 December

At Pura Dalem....
The "water walk" was beautiful but a bit too far. I stopped at the point where my body said "Enough"..... I rested then walked back.   As I walked I made music with the mouth organ and with a chant that I haven't sung out loud since 1972.

#1927 Sunday 9 December

It's wonderful to have my "heart voice".... my poetry..... back again.  Its been silent for over 20 years.... and now its speaking again.  If you want read the results, follow the link at the top right hand side.

#1926 Saturday 8 December

(Gems from this time ....)  

THE TWO WOLVES

Negative thinking is normal and sometimes it’s even helpful. However, if this way of thinking becomes incessant, it can lead to depression and self-destructive behaviour like addictions, derailing you from what your values and what you want most in life. Negative thinking saps your energy and erodes your self-confidence.

Two Wolves is a Cherokee Indian legend and illustrates the most important battle of our lives – the one between the thoughts that are consistent with your chosen values and the thoughts that lead you away from the man you wish to be. Here’s how the story goes:

A Cherokee elder is teaching his grandson about life. “A fight is going on inside me,” he said to the boy.

“It is a terrible fight and it is between two wolves. One is evil – he is anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.”

He continued, “The other is good – he is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion, and faith. The same fight is going on inside you – and inside every other person, too.”

The grandson thought about it for a minute and then asked his grandfather, “Which wolf will win?”

The old Cherokee simply replied, “The one you feed.”

Some of your thoughts can be your own worst enemy. That is, if you let them. Think about how you may be “feeding” your negative thoughts by allowing them to rule your mind.

Next time you have a negative thought, catch it and ask yourself, “What is this thought doing for me?” You will find that the answer is that all they are doing is disempowering you. You can immediately feel more empowered by focusing on your values, reflecting on the big picture and cultivating the practice of gratitude.

Which wolf are you feeding? Remember, you always have a choice...

#1925 Sunday 2 December

At last!  The "Bali at Christmas" nag has now changed to "Bali in two weeks!"  Yay.

I go to Bali on Tuesday night and then Kaylia, Naomi and Casey will follow on the 15th.

This evening Kaylia came out of her room and seemed disturbed by something ... we struggled to interpret what she was saying  ... and eventually we decoded the sounds  to be "bone".  She had found that she had a bone inside her nose and she wasn't too happy about it!  The funny thing! 
I had to get a torch and have a look and feel of the "bone".  I reassured her that it was a good bone and that we all have a bone in our nose.  After feeling the bone in my nose, she was satisfied and now she's settling to sleep.

#1924 Saturday 1 December

She's in the bath!

Later.... I can remember that I was about to add something here.... but it obviously didn't get added.... and I can't remember what it was.

#1923 Friday 30 November

Kaylia is having a restless night so I've been downstairs to settle her... or try to! I gave her "the talk" about how she has to have a 'big sleep'...... now I wait a while to see if it has worked.  If not, I go down again and stay with her till she sleeps.    She's a gorgeous thing but she's hard work at times.

#1922 Wednesday 28 November

We began an exciting new thing with Kaylia yesterday.... Pilates exercises.  Since the brace has finished it's role in helping her kyphosis, the next strategy is to establish a habit of targeted exercises.  Naomi will take Kaylia to weekly classes and reinforce them with home exercises.
Kaylia calls it the "body doctor"!

#1921 Sunday 25 November

Kaylia has had a good weekend .... all routine!  Routine is so important for her.


Yesterday she wanted "PICTURES!"  .... this means that we sit at the computer and look through all her favorite photos. 

This time it was the videos of her swimming lessons in September 2007 .... she watched every single one of the videos .... and there were lots.  All the time we were watching, she was in a state of high excitement with lots of hand-flapping and facial expressions.  It's good that there are things which give her such joy.

#1920 Friday 23 November

Going out to an evening of Pink Floyd

We had a night out for the first time in a year or so ...

... to see a cover band "The Dark Side" playing the music of Pink Floyd.  The band was really top rate and it was an excellent night.

.... and this little beauty belongs to Casey's friend Tim.  I think that Minis are a wonderful car.

This one is an excellent example .... it even has air conditioning fitted.

#1919 Thursday 22 November

The daily refrain of "School tomorrow?" continues ..... and "Bali at Christmas?" ..... the constant refrain is a function of anxiety rather than a real question.  We handle it by an initial agreement and confirmation ..... but then she will nag and nag.  So we say "Enough!" and she stops.  At that point I try to go in to her and we have a little story time about what happens with going to school ... and what is going to happen when we go to Bali.  We're not game to begin an actual countdown to Bali departure.... that will probably start in December.

Here's a scary thought ......

..... an idiot like this with all that power!  Scary


The building project is still in the planning stage .... there's no point in starting just before I go away for a month ..... so I'm 'fiddling' with levels and tape measures.

#1918 Saturday 17 November

Teddy the escape artist!

I've been gradually making changes between the main house and the "Bungalow" ..... and as I change things, Teddy 'dogs' my steps and looks to see if there is any way that he can escape.  He has escaped again this morning ..... only to be returned by Jason!  Fortunately our neighbours quite enjoy Teddy so they always have him for a while before bringing him back.
Teddy is booked in for his summer haircut on Monday.

The changes I'm working on will eventually join the bungalow and the main house under one roof.  It's a big project and as usual I'm trying to find free or recycled materials for the work.

 

This is a self initiated drawing by Kaylia ..... done this morning.  When asked "Who is it?" she responded "Mummy."    

#1917 Friday 16 November

This afternoon we took Kaylia to see the spinal specialist at RPH.....  the x-ray shows that she has finished growing.  The kyphosis (curvature of the upper spine) is still quite pronounced but the doctor says that it is much better than it would have been without the brace. 

The photo at the right is a bit indistinct ... but you can see the curvature of her spine.

The doctor says that the statistics say that a person with this amount of kyphosis usually doesn't have any more back pain than a person with a normal spine.  That's good news!  The doctor said that we could choose whether or not to continue with the brace ..... so we asked Kaylia and her answer was an emphatic NO.  So that phase of her life is over.

The next step will be physiotherapy.... probably Pilates exercises to improve her core muscle strength.

#1916 Thursday 15 November

Yaaaayyyy!!!   After 9 years of slog and hard yakka, Naomi finally has her registration as a Clinical Psychologist.  It has been a long battle and she deserves a big congratulation.

#1915 Wednesday 14 November

Last night was a SAGA!  Big time!  It went down like this........

Some of you will know of Kaylia's bedtime routine where  I pretend to be the dentist ..... (she luuurves her dentist!) .... I sit on a chair next to the bed and she lies on the bed with her head on my lap .... and I am Doctor Daddy!  She gets a very thorough tooth cleaning every night.  Well .... last night as we were finishing the routine, Kaylia and the bed just quietly sagged onto the floor!  Boom.  All the fixings that held the wooden bed frame together had come to pieces.  For years Kaylia has been running into the room and diving onto the bed ..... and all the screws finally gave up and the frame collapsed!

Since the mattresses are very thick memory foam, they are very heavy .... and so the task of disassembling the bed, stripping the broken components, then reassembling with new parts ...... was a massive task!  I was slaving at it from 7pm to 9pm.  At one point we brought Kaylia up to look at the bed in pieces and we quietly told her ... "This is what happens when you jump onto the bed." She was clearly chastened ... and I heard a little voice "Sorry Daddy."


Yesterday and today, Kaylia has come home from school with sun burnt arms and face .... summer is here again.


Many of you will know of our penchant for geckos .... we get very big geckos in the house in Bali and we like them ..... but here the geckos like to get inside the outdoor units of the air conditioners!  And then ZAP!  .... no more gecko and dead air conditioner.  Today that was the diagnosis  for another of the air conditioners.  It makes life a bit expensive.


This is very funny - despite being very serious!

Who needs a federal ICAC???

#1914 Monday 12 November

(Non-Kaylia)   Two news items of note today.... firstly an article about Harrison Fischer who was diagnosed with ASD 20 years ago at age 5.  His diagnosis at the time sounded very similar to Kaylia's.  He now has grown into a man with employment, he is able to be mostly independent ... and he has some remarkable skills.   The next 10 years for Kaylia will be watched very closely!

Secondly .....

Today's news presents comments about religious extremism from both the major party leaders .... that's a good thing ... but wait! ..... Australia has religious extremism embedded into our federal and state laws ! Surely we must also tackle that extremism? I speak of all the ways in which our freedoms ..... (end of life choice .... abortion .... etc) ..... are being restricted in order to fit a particular religious ideology.
It seems apparent that "extremism is bad" .... just as long as it is not the extremism of the people making the laws!


Refer Blog # 1831 Monday 25th June 2018  in which I talked about a c1950 Allis Chalmers tractor that I had owned  between 1985 and 1996 .... and restored.  I have found a photo of this tractor before restoration .....

That's Donna driving  with David and I

#1913 Saturday 10 November

Today was one of those days that remind me that even though Kaylia has come a looonnng way .... and improved so much ..... she is not out of the woods yet!  She had a really good day with Casey and as usual she had bath time from 12 to 1pm ..... and then her voice showed that "sound" .... the change in tone that says that she is heading into meltdown.  So we dosed her with the usual fixes and adopted the soothing strategies ...... the strategies eventually worked but it was a battle.  Kaylia still needs careful management at times.

#1912 Thursday 8 November

It's 4pm ...... as usual, as soon as the car pulled into the driveway, Kaylia has rushed inside and headed for "BUBBLE BATH!!"  She loves it.  Now ... half an hour later she is crooning away very happily.  When she croons like this we can very accurately tell what her mood is.  Now she is happy .... but if she becomes anxious or in pain, we hear the change in the sound immediately.  It's a good "Kaylia barometer"!


This evening while having tea, the phone rang ....... "Hello, this is a short survey from the Federal Government......."  !!!!!!!  Not only does our wonderful government do nothing to control phone spam and scam,  the government does it too!

#1911 Tuesday 6 November

Kaylia often comes home with scrapes and bruises .... with her lack of sensory reception, she doesn't really notice them.  Today she came out of school with a big red mark on her forehead.  Asked "Does it hurt?" she says yes.

Then Casey noticed similar redness on her hands ..... touching the redness revealed that it was paint!  ..... and the forehead was paint too!  Kaylia is a fraud.....  but a fraud of the most endearing sort.

#1910 Monday 5 November

It's Guy Fawkes night!  I remember.....  as a child I used to collect crackers in the weeks leading up to this night.  It was a BIG night for me!  .... and then they went and banned crackers.  So sad.

Kaylia continues her merry way .... every night she is talking about school the next day .... and then the talk always turns to Bali!  Now we can tell her that she is going to Bali next month!  .... and we can talk about her favourite Bali features .... the swimming pool, the bakery, the shops.

Yesterday we had a little gathering for our work colleagues ..... Kaylia was well behaved and fitted in well.

#1909 Thursday 1 November

Yay.... we can talk about Bali!   Kaylia is very happy.  For the moment we just talk in general terms .... what does she like doing in Bali?  .... and we go when school finishes.  Closer to the date we can start a count down.... 

Today she has a dental appointment with Dr Camacho..... she's very excited!  But it means that we have to delay departure for about an hour.  Fortunately Casey is extremely resourceful at keeping Kaylia engaged.  I don't think I've ever seen anyone so good at this.... her skill really makes a difference for us.

Evening:  The dentist visit??  ..... her teeth are very good with excellent care being taken.  ...... but her wisdom teeth will need fixing in about a year!  One of the four emerging teeth will be OK ..... but three of them will not be OK and will need to be removed!  It will mean another hospital visit with GA and lots of pain. Poor thing.

#1908 Wednesday 31 October

The tension is rising!  Tomorrow is November .... and then we can talk about Bali!

We've had a small change in the breakfast routine ...... for some time Kaylia has has a short session of "doing her face" after breakfast ..... and all the tubes etc have been in a pile on the shelf.  Naomi has found a small bag to hold all the stuff needed .... it's pink .... and Kaylia loves it!

#1907 Monday 29 October

Today is Jonathan Croft's birthday.  Kaylia never met this grandfather but I know they would've been rapt with each other.



He would have been 96 today. 

In this photo from 2001 he was 79.

Kaylia had a class excursion today ....

#1907 Sunday 28 October

8am and Kaylia has been in the bath for an hour.  On Sunday mornings I go down and get Kaylia in the bath so that Naomi can have some more sleep in time.

Now ..... what has gone on since the last post on Wednesday?   Well .... the trip home was uneventful ..... except for some interesting times at the Denpasar airport ..... the Air Asia check-in desks weren't at their usual place!   To find them, we are led on a loonng walk through corridors and down escalators ..... down into a section of the old airport building!   There all the check in processing happens ..... and then we had to follow a different route to get back to the normal area in the  "new" terminal where the customs and passport  processing happens!   Before starting the trek to their new location, I had gone to the old location ..... and this is not being used by any airline!   My  guess is that this is another cost saving measure by Air Asia ..... they probably get a reduction in terminal charges .... much as I have no doubt that they get a big reduction in terminal charges by not using the air-bridge for loading/unloading the passengers.

I got home on Thursday night to find a very relieved Teddy ..... for the next few hours he was glued to my heels!

Today we did a Fremantle drive ..... and then home via an assortment of op shops.

Kaylia is looking forward to Thursday .... it will be November! .... and we have said that we can then talk about "Bali"!   She has been wanting to talk about Bali for months now so it will be good to finally do so.

#1906 Wednesday 24 October

Another maintenance day.  Today the guys are repairing the various bits of cement work that have failed resulting in tiles falling off the walls and paving moving where it should not! 



 The first of the two air conditioners will be replaced today.


This is one of the installers .... working hard!  

Another one bites the dust!

#1905 Tuesday 23 October

After the excitement of my fall on Sunday, the trip is now normal .... fixing things that are broken or which need to be replaced.

It seems to be a constant story but once again, another two air conditioners need to be replaced.  They don't last long here. 





Some of the wall tiles in the garden have fallen off and need to be re fixed.

The lounge room furniture is currently having temporary repairs made to keep it usable till we can buy new furniture while here in December. 


It appears that the guests are "flopping down" on the couches and the supporting structures have broken.

The new lounge furniture will need to be stronger to allow for this.

The umbrella over the sun lounges is very sad ... replace the cover.















On the plus side, the gardens are thriving and the whole villa looks 'smicko' ...... but there's some more painting work  on walls and on timber work.  It never ends!

#1904 Sunday 21 October

The day started with a bang!  I slipped on the floor and hit my head on the wall.... unfortunately it was right on the skirting edge and it made a 5cm gash ..... lots of blood!

As a precaution I headed for hospital and I now have 8 stitches!  The doctor says that there's no sign of concussion or any need for scans.   So it's rest for a few days ..... and no head massage!

#1903 Saturday 20 October

It's been an interesting day..... Kaylia was in the bath and Casey and I heard ...."On no..... Too late". 

We never found out just what it was..... but it made for some wondering!

Good news about the "Wentworth game"!  It's a good result I think.

I'm on the way to Bali for a few days .... for a villa maintenance check visit.  While waiting for boarding, a Jetstar flight was cancelled and it resulted in a mad scramble for people to buy tickets on this AirAsia flight.  Fortunately the Air Asia flight had very few passengers so most cancelled seat would probably have been accommodated..... but there were many stressed and relieved people when boarding time came.

#1902 Friday 19 October

Today Kaylia received a parcel for the first time!
It was two pairs of sunglasses.

Casey taught to use the app for AliExpress while we were driving down to Busselton.... 

#1901 Thursday 18 October

Today is Naomi's birthday and Kaylia cooperated to a T..... she joined in with the celebration in the appropriate way.  

This evening we all went out for dinner at Hogs Breath ....

 it was a good time.

Excuse the blurry image ... I found later that I had a fingerprint on the lens.

Note the HUGE bowl of ice-cream!  It was shared between the four of us.