#1445 Saturday 31 December

New Years Eve!  The day has begun with very heavy overcast .... I thought it was about to bucket down. .... but it didn't.

Kaylia had a very good night ..... I stayed with her and she slept right through the night.  It's now 8:30am and she is still asleep.

3pm  After a morning of  car trip for Kaylia, we are now back home with R&R time.  Kaylia is focused on a  noisy toy that she can stim with ..... while the adults watch "Penguins of Madagascar"  .... what a wacky, exquisite movie!

While at Hardys I discovered another form of corruption .... it's blatant theft by the internet company.  I had bought 1 Gb of data ..... the phone says I have used 400Mb .... yet the credit is all gone and I have to buy more!!  Sheesh.

4pm Kaylia is now in the bath .... with lots of bubbles.  She will be there till teatime I'm sure ..... so we can relax a bit.

6:30pm  While extracting Kaylia from the bath, Naomi suggested that we go and have tea ..... Kaylia responded "Cool!!" .... isn't that good!

 

We're at Gardenia for tea ..... and here is the resident dog ..... he's a sweet natured  dog.

8pm ..... back at the villa ..... Kaylia has gone to bed .... and I'm waiting till just before midnight before climbing onto the roof to watch the performance that welcomes the new year. Climbing the ladder is getting harder .... but I have a few more years yet that I can do this.

Happy New Year!  Naomi and I both climbed the ladder and saw in 2017 in the midst of a storm of fireworks.   

It was a very impressive time.

Photos taken at midnight on the roof.

#1444 Friday 30 January

It's been another sleepless night for Kaylia ..... this is one of the unpleasant effects of autism.  She can be very tired yet she still doesn't sleep.  This then starts a cycle of anxiety attacks leading to more tiredness.  All this is hard on Kaylia .... and hard on us as well.  We get exhausted by managing her at the same time as we are living our regular daily life.

As we were leaving the villa this morning I noticed this snail on the brick pavement outside our door .... it was huge!



Our system for managing Kaylia is to go for a drive .... somewhere .... so that she has a fixed routine for the day.  So it's drive .... then lunch ... then rest .... or swim .... or bath .... till tea time .... then bedtime around 6pm.  She then has stories and iphone time till around 8pm ... or earlier if she settles.

This routine works well much of the time .... but sometimes it fails.





On our drive this morning we headed over to Kerobokan .... to find a new Puri Mas Bakery!

They have delicious nibbles which always leave us hankering for more.


The traffic was horrendous while going north along Jn Sunset .... averaging around 500 metres per half hour.  Fortunately when we headed south for the return trip, the traffic was very light.   We stopped at Carrefour shopping centre for lunch ..... and the photo to the right happened!  (The headphones Kaylia has on are just for noise control ..... no sound ..... it helps her with anxiety.)

Kaylia is getting quite tall now .... and she hasn't had her teenage growth spurt yet!  Last night as we were walking back from Acquaviva, she walked beside me with her hand on my head.

I made a bad mistake in my trip preparation this time .... I didn't bring enough Vit D tablets.  In Australia I get bottles of 200 x 1000iu tablets and I take 16 per day .... so it lasts me a week and a half.  I only brought one bottle and they've run out.  In Bali, the 1000iu tablets are not available .... 400iu is the maximum.  And at 60 per bottle, I'd go through a bottle per day!  And it's not cheap here.  So I shall have to suffer till we go home.  After two days without the Vit D, I can feel the effect and I must walk very carefully.

#1443 Thursday 29 December

After that positive feeling at the end of yesterday, the night disintegrated into a "stress battle" ..... an unpleasant time that finally ground to a halt when tiredness overcame her anxiety behaviours .... it was not nice.

Today has potential to be a low stress day .... J and E are in Ubud ...... so it means that we can arrange the day to be optimal for Kaylia.   We're asking ourselves "Why do we go on holidays?" The very basis of a holiday .... the change in routine ..... the relaxation ..... is a big cause of Kaylia's anxiety attacks.  So the holiday is usually the very opposite for us.

Evening
It's been a good day .... a couple of times she began to escalate into an attack but we've been able to defuse the situation each time.  We began the day with a drive to Hypermart ..... then sate for lunch at home..... then rest time ..... milkshake at Acquaviva .... more rest time .... then home delivery pizza.  If we program the day and explain it to her, it improves the chances of making it through the day .... and of is keeping our sanity.  she is regularly talking about school .... but that's OK .... we have to be hard on her when she starts talking about "airport" .... she means that she wants to go back to Perth. 

#1442 Wednesday 28 December

Kaylia seems to have welcomed our change in management ..... she was much happier yesterday and last night.  She settled quickly and slept well .... she even slept through the noise of a thunderstorm which went past very closely at 2am.  There were some very loud claps of thunder .... but she didn't stir.

We were going to go to Ubud for two nights ..... and we'd booked a place .... but with Kaylia needing us to stay in a familiar routine, we are not going after all.  Joe and Ellie will still go so the booking isn't wasted.

A new air-conditioner is being installed this morning   ..... it's the third in six years! The only good thing is that air-conditioners cost about one third of the price in Oz.  Much of the difference is in the cost of installation.

5pm  Kaylia had a tough time this afternoon and she was upset for a long time.  Naomi was finally able to persuade her to have some bath time.  This calmed her and she's been there for about an hour.

Our life seems to revolve around Kaylia .... no ... not seems .... it does.  This afternoon Naomi couldn't even have time to go into Starbucks to buy a cup of coffee ..... while Kaylia and I were waiting in the car, Kaylia dissolved into a bad time.

#1441 Tuesday 27 December

The adjusted management plan seems to have been a real improvement ..... her behaviour was much easier to handle yesterday.  We'll continue that change.

Teatime:  Today has been a bit of a disaster .... we went out for a drive and I bought some plumbing parts .... when we got home, nothing was correct!  It means another trip tomorrow.

Then we had guys working on the faulty aircon in room 1 .... and it's not worth repairing .... it's only two years old!!  Air-conditioning units just don't last here.

Now we're at AquaViva for tea.

#1440 Monday 26 December

..... last night continues!  Naomi managed a very awake Kaylia till 2am ..... all her skills at helping Kaylia to sleep were to no avail.  At 2am Naomi "tagged" me and I took over. After another 2 hours of trying to slow her breathing and to control her constant body movements, she finally slept. Phew!

We're doing something wrong here ..... either error in medication or error in activity .... 

On a more slithering topic .... Naomi suprised a snake in the bathroom this morning.  It went along the top of the wall and down the other side. From the description, it sounds like a nasty one.  We will need to be wary ....... and revise our first aid plans in case of snakebite!

10am .... Off to the waterpark near Uluwatu.  It was almost completely empty of people .... maybe it's a school day.  Anyway we're not complaining. Kaylia doesn't have to cope with the usual noise.  We were all impressed by the giant tipping bucket .... it's literally a huge bucket  holding about 3 or 4 hundred litres of water .... it's about 5 metres up and it tips over when it is full .... and cascades down over a roof.  If you sit in the right spot, you get hit by this large mass of water.  It's quite an experience.

I nearly injured myself .... I went on the biggest waterslide and managed to wack my ankle.  I'll be limping for a day or so.

Then it was back to Sanur .... sate for lunch

Sate untuk makan siang..... lima puluh!

4pm Our new management plan for Kaylia is working so far ..... it means adjusting our daily activities so that she gets chill out time in the afternoon ..... and use of Lovan when we can see her stress levels rising.

#1439 Sunday 25 December

Happy Christmas everyone! Selamat Hari Natal!   Our plan for the day is to drive to Ubud and find a restaurant that we remember from other times .... hopefully we will be able to get in for a Christmas lunch.

During the night, Joe and Ellie had a visitor... a small python.  It's about a metre long.  I took it outside and released it away from the villa. I think these reptiles are great ...... but others don't share my enthusiasm. Are you reading Chris?  You would be very excited by this.

11am. We're now at a restaurant in Mas .... to the south of Ubud. This will be our Christmas lunch.  It was a nice quiet spot ... we were the only guests. 

Of the six of us, four had nasi campur ......

..... and just near our table we spied a mass of   caterpillars .... the restaurant staff were not impressed and removed them very quickly!

Then it was a drive round Ubud area .... and by that time Kaylia had reached her limit and we had to head back to home.

Night time:   Well ..... the day turned out badly ... Kaylia was overtired by 3pm and the rest of the day was a torrid session of managing her repetitive nagging.  She took hersef off to bed by 5:30pm and by 7pm she was asleep. 

At this point both Naomi and I are very despondent about being in Bali and we are seriously considering aborting and flying home.  Kaylia would be easier to manage if we were at home.  Her behaviour means that this time in Bali is not a holiday at all.

I went and had a good massage and then stayed awake till the 10pm wee run.  At 11 Kaylia woke and went for another loo run ... and then she was awake ..... and stayed awake. Naomi took her to the spare room to let me sleep.

#1438 Saturday 24 December

Today Joe and Ellie went exploring .... over to Kuta .... successfully resisted a taxi driver who tried to charge them double the meter!

We spent the morning in the pool ... lunch at Gardenia .... they seem to have changed staff and the food was terrible.  Now we have to find a new favourite place.

We went over to Denpasar this afternoon ... the traffic was amazing!  It was a bit too much for Kaylia and when we got home she was very upset.

#1437 Friday 23 December

yay .... Mummy is here.

This morning we've been over to Kuta to show Joe and Ellie.  Now we're back at Sanur .... at Pizza hut for Kaylia.

That was the usual leather and liquid rubber .... no prizes for guessing my opinion of that place.

Then we went to Hardys .... more DVDs!  Kaylia gets so excited in the DVD shop.

Then pool time and now we're at the Bali Bakery.

#1436 Thursday 22 December

2am .. wet bed ... despite my best efforts and strategy! Sheesh!

7:30am Kaylia just dozed from 2 to 7 ... every now and then she would yell or ask for her iPhone ... at 7 I gave up and sent her to the bath where she is now happily screeching away.  When we went to Lottemart, I found a nice looking body-wash which I thought might substitute for bubble bath.  Kaylia seems quite happy with that but there's a new supermarket halfway down  Jn Cemara  .... Joe & Ellie have been there and say that it stocks real bubble bath!

10:30 Uluwatu 

Interesting ... I have just asked Made a question in Bahasa "Dimana kamar kucil?" .... Kaylia immediately said "No" .... she understood what I had asked.

This monkey .... and others .... were stealing people's flip flops.

Kaylia had a bubble wand .... it kept her very entertained.

12 noon.  We're at the big statue now. Joe and Ellie are off doing the tourist thing while I stay in the car with Kaylia.  Since my leg pain is bothering me, I figure that I have a good deal.

6:30pm After a delicious tea at Paraganyan, we're home .... waiting till it's time to go to the airport to collect Naomi.

Joe and Ellie are off for a bike ride.

#1435 Wednesday 21 December

It was another long night but reasonably pleasant .... she didn't settle till after midnight but she was just enjoying being with me.  I will try a different tactic tonight.  As much as I enjoy this, it is not a good settling strategy.

As a result of the late settling, she is sleeping in till late in the morning.  Another change this trip is that she is not swimming as much ..... and she is spending long periods in the bath rather than cycling through the range of favourite activities.  Her anxiety levels are very low. .... she is just happy.  She has watched one DVD .... then no interest since!

She is a very different child this time.... no anxiety at all and very little routine behaviours.

10:30 and she is still sleeping.

11:30 ... into the bath.  I then used that 'free time' to instal a new range hood over the gas stove in the kitchen.  ..... and Joe worked on the two bikes to get them into a usable state.  Some new parts are needed and then the bikes will be OK.

 

5pm .... we've been to Sindhu Beach for "breakfast" for K .... and an early tea for us.  It was very pleasant.

#1434 Tuesday 20 December

The night was interesting .... NOT.  We stayed up late and she went to sleep without any trouble .... but then she wet the bed at around 3am .... it was messy!  It's now 10am and she has been awake for about an hour ... but she's happy to stay in bed with her iPhone.  Ah ..... how would we cope without internet, iPhone, YouTube etc?

Midday ..... she got out of bed at 11:30 and she's now in the bath.  She doesn't want to go anywhere.  I have sent Joe and Ellie off to explore and have some time to themselves.  When Kaylia 'surfaces' we will go to Hardys and to Lottemart.

5pm She came out of the bath soon after that and we went off with Made.  Macdonalds, Lottemart for bubblebath and Bintang  ... then up to Denpasar to find a replacement rangehood for the stove ..... then to Hardys .... then home.  She's in the bath now.

#1433 Monday 19 December

Last night was a tough time for Kaylia. The pain was clearly bad and it was more than analgesics could handle.  I finally got her to sleep but slowly counting ...... she then slowed her breathing to match the counting and eventually drifted off.  It wasn't fun.

Day 1 ...... I was up at 6am ... sorting and setting up.  I set up my "office area" .... Arista had kindly already brought in my table and chair ..... I set up my laptop with my new mobile screen .... a present from Naomi .... it is USB powered and connected ... I like it.  By the time Kaylia woke, I was sorted and operational.  Her first thing after waking was "Hardys"!   I explained the sequence for the morning ... breakfast in the villa ....then down to Hardys.  She understood and went off to have a bath. We kept to the plan and waited at Gardenia ... with juices .... for Made to arrive. At Hardys, it was change money then DVDs!!  Kaylia was ecstatic.  She didn't really want DVDs ... she just wanted to look at them.  She eventually chose some ... and we chose a few each to make up the 13 DVD bundle.

Then it was upstairs (loo stop, change pad) .... she refused the escalator so I took her up the stairs.  (The escalator was a real issue at the airport too.) .... check out the toys ... chose a ball!  90cents! (.... later in the car she was enthralled with it!  Tremendous value.) ... then it was down.  We tried the promise of a reward.  An icecream for going down the escalator .... it worked and she asked us to help her get on.  Finally with her holding my arm and Joe's arm .... and Ellie giving a little push from behind, she was able to get on.  The only icecream I could find in the immediate surrounds was a Haagen-Dazs  .... 117k Rp thankou!! That's about $12!!



After that exciting time, we piled into the car and went for a drive.  We went through the back streets of Renon (west of Sanur) so JandE could see that part of Bali .... then to Hypermart.  It was J-Cos for donuts as usual..... then home to the villa.  Swimming and now she's in the bath. .... which she stayed in for 3 hours!

We've had tea at Parahanya .... and then down to the Bali Bakery. On the way she found a horn that doubles as a dingle dangle.

#1432 Sunday 18 December

Sleeping in at 8:15am .... Kaylia in the middle with her iPhone on YouTube. We will stick to her routine as much as possible before we head to the airport at around 2 or 3 for the 5:30 flight to Bali.  We're still telling Kaylia she will be in Bali tomorrow .... trying any tactic to minimise the overexcited triggers to anxiety attacks.

Jo and Ellie are getting excited ..... going to Bali was one of their big goals on their trip ..... and it's about to happen for them.

Last night we had an internet failure ..... our end was saying that we had a connection ..... the ISP end was saying that we had a good supply .... but no internet!  The iiNet people sorted it fairly quickly.  When the internet fails we quickly realise how our life is integrated with it.

At the villa ...... midnight.  The flight up was nigh on perfect. Kaylia is in pain from her period and so she can't sleep.

#1431 Saturday 17 December

Kaylia has certainly improved her habits for bedtime.  In the past it was hard to get her to calm down ready for sleep ..... so we adopted a pattern of one of us staying with her till she slept ..... about 6 months ago we changed that and she is now able to settle herself without having someone with her.  It's good.

3pm  We've just arrived home after meeting friends at Dome in Midland.  Dennis and Stana have been close friends for 20 years now .... we don't see much of each other since they moved to Busselton so it was good to catch up.

Kaylia is very excited about going to Bali ..... she is practising her Bahasa.  She learnt Indonesian in primary school .... so tying that into the time we spend in Bali, she is quite happy to speak Indonesian.  Since her verbal ability in English is not great, she can probably speak Indonesian almost as well!!

5pm ... it's been a torrid half hour or so .... she seems to be suffering ... the obvious explaination is that her period is starting with tummy pains .... but she can't tell us .. and it looks like a really tough time for her.  All we can do is "cover  the bases" with painkillers and help her through it.  Mummy is magic in these times ... she really has the touch.

On a more pleasant note ..... it has recently been the anniversary for Naomi and I ..... 20 years!  The custom is a special piece of jewellery .... but Naomi's passion is the "Syren" collection of crockery ..... his is her collection.



So for the anniversary, a more valued gift was an addition to her collection.

#1430 Friday 16 December

Remember me writing about the Child Dental Benefits Scheme for children with disabilities? ..... and how the rules meant that children with a disability were excluded by the effect of their disability?  Well.... apparently there haven't been many claims .... (now I wonder why) ... so they are reducing the benefits because no one is claiming!

Kaylia went to the beach today ... she's worn out tonight.  But she can still talk about Bali!!!

#1429 Thursday 15 December

It's the last day of school for this year.  Kaylia is just as excited as always.  Looking back over the past few years it has been a joy to see the way she has changed ....

Then = anxiety was such a burden for her  ....combined with the sensation overload ... plus the routine compulsions .... wow - what a triple whammy!
Now = anxiety? is mostly not a problem ... sensation overload? much better .... she can control this herself mostly ....... and routine ... naah - that's still a large part of her .... but she can accept changes to routine much better than before.

The biggie has been the anxiety.  Helping her through that has been very interesting .... she started on the medicine .... AM and PM .... and we played with the dosage .... finding out what was too much .... then when we had the dose right, we hit on the idea of giving her small 'top up' doses when anxiety signs showed during the day ....... this worked really well and after about 12 months we changed it to a pain killer rather than the anxiety med.  After another 12 months she no longer needed the pain med!  Now she is often able to control the anxiety with breathing and distraction.  My theory is that the method of medicine use has allowed her body to change the way it reacts ..... in effect, she has learned that she can manage the anxiety herself. 

And so we now have a very happy Kaylia!

#1428 Wednesday 14 December

Kaylia has had a good day at school..... they had a day at a waterpark ...... so it's no wonder that she had a good day.

I've just been down to the shops to get some rice .... and on the way back, Kaylia suddenly says "Up the hill!"  When she says it so clearly I can hardly refuse!  This is at the top of our street .... and it's VERY steep!  So we had fun crawling up the hill in first gear.  ..... and then we had fun going down!

Speaking of gears .... all the cars have been giving trouble lately .... a burst water hose on the blue car .... and both Subarus have needed a new a/c belt.  So they've kept me busy.

With Joe and Ellie we share cooking duties at night .... and this was tea tonight! It was superb!

#1427 Tuesday 13 December

We took Kaylia to the hospital this morning for a check of her brace .....

..... and this how we fill in the time while waiting for the brace changes to be made!  

#1426 Monday 12 December

Naomi and I are so fortunate .... read this

What life is like ..... when your children never grow up 

No matter how bad things get there is always someone who is worse off.

Today??? We have been clearing out one of the properties we have been using for the business .... in preparation for closing the lease.   ...

....... and at home I am repairing cars .... one car has a burst water pipe .... another has a broken airconditioner belt and it's also overheating.  We take reliable cars for granted so much ....  and when the cars give trouble, it feels like a disaster.

#1425 Sunday 11 December

It's been a weekend of car trouble .... one with a split water hose..... the other with undefined overheating.  With the coming week of high activity, it's the last thing we need.

Of course such events don't touch Kaylia's world ..... she spent hours with me this afternoon ...  watching video on the computer .... mainly Wiggles episodes that she hasn't seen for a while.  She was very excited about it.

Tonight Naomi and I were debating which of us would do the "wee run" ..... the discussion swapping back and forth .... and we both noticed Teddy.  He was standing between us watching who was speaking ....  head swiveling back an forth in time with our speech!  So we played a trick on him and extended the talk .... he didn't like it at all!  Poor thing.

#1424 Saturday 10 December

It's a hot day and we're not doing much .... just staying under the airconditioning.

#1423 Friday 9 December

I love the way that Kaylia has learned to show affection and express feelings ..... this morning,  as we were preparing for departure to school, Kaylia came over to me and hugged me ..... and then went and hugged Joe.  It was a special moment.

You may remember my rant a few weeks ago about the Medicare benefit available to children with a disability? ..... and that the benefit literally  cannot be claimed because of the disability?   Well I wrote to the Federal Minister for Health about the issue .... and I received a written response yesterday.  Basically the response was that "Yes, that's correct .... the legislation was written that way."!!!!  Isn't that appalling?

So .... this is what I wrote to our local Federal Member .....

My daughter has severe autism and she is unable to receive any normal dental procedure as she cannot remain still enough for a dentist to work.  Consequently all dental work must be performed under general anaesthesia in hospital.
Under the CDBS, she is entitled to receive a benefit.  However, in-hospital treatment is excluded.  That is... because of her disability, she cannot access the benefits under CDBS!
On 22 November 2016, I wrote to the Hon Sussan Ley to point out this crazy anomaly.  Yesterday I received a reply (Ref : MC16-033221) which basically acknowledged the situation and said that the legislation was written that way.

Do you agree that a child with a disability should not be excluded from a benefit solely because the child has a disability?

#1422 Thursday 8 December

She's getting so tall!  When she wears the brace, she is forced to stand up straight .... and she looks so good.  I'll try to get a photo.

#1421 Wednesday 7 December

I'm sitting on the balcony .... and a few metres away I have our resident magpie talking away to me.

.

Kaylia continues to be very excited about the trip.  I hope her excitement extends into the time there ...... she tends to always focus on the next thing .... forgetting about the "now".This morning I have completed the tasks that needed to be done before the Bali trip in 11 days time. The spa roof still has a few details to be done but it can wait.

Evening:  we've all gathered on Kaylia's bed .... and she is pushing for "Dr Daddy" .... teeth cleaning.  ...... and the out of the blue she says .... "I like Dr Daddy." ...... wow!   This is serious language development.  She has taken a concept she knows and applied the concept to a new subject.  I get excited when she does things like this.

On a completely different topic .... I only play one game on my phone .... and it pops up ads between each game.  It just popped up an ad about snoring .... a very important topic .... so I thought see what the ad was about. It was promoting a jaw support strap .... which I already have.  The price? $99!!! I need the support after my jaw dropped at that.  I bought mine on Ebay for $2!  Rip off!

#1420 Tuesday 6 December

Teddy is a very weird dog!  It's always been a struggle to find a dog food that he would eat .... but his reluctance to eat is reaching new extremes.  Yesterday it thought I'd give him a treat with a piece of cooked steak ..... he looked at it ..... looked from the left ..... looked from the right ..... sniffed it from all angles ...... shoved it around ..... and finally he delicately nibbled it down.   It was quite a performance.  Any normal dog would have gobbled it before it hit the floor.   Maybe he has autism!

Kaylia continues to tell us about how she likes school .... "I like school."   ..... over and over ..... I coach her with other ways to say it .... but her mind is fixed on the one sentence.  She wants to say other things ..... but (big smile) .... "I like school!"

4pm  I'm upstairs on the bed ..... Kaylia likes to flop when she gets home from school .... so we spend time in the cool breeze from the fan .... each with our phones!

#1419 Monday 5 December

Kaylia was very happy this morning .... she's a delight.   .... and she was excited when Naomi told her that she has another visit to the dictor on Friday!!!   That visit is to see the orthopaedic surgeon who is managing her treatment for kyphosis ... the brace.

The gradual introduction of the brace is going well .... she is still accepting it and the wearing time is increasing.

As I write, Teddy has found a warm place on the roof to relax.

#1418 Sunday 4 December

It's 8:30pm .... shes been very happy all day but now she's arcing up over something .... sounds like "di-o" .... who knows!   We will just have to wait her out again.

It lasted for another half hour.   When I went in at 10:30 for her "wee run", I found that the wee was right in progress!! So it was wet bed and a wet trail to the bathroom!   Ho hum.

#1417 Saturday 3 December

After that last entry, she didn't wake again and she's still asleep at 7:30am.

Later:   she got up at around 8:30 and just relaxed with her iPhone.  How would we cope without iPhones?  They have been a magical help with Kaylia's autism ..... in the absence of the iPhone, she would turn to us to occupy her mind.  For an NT child, imagination works to do this ..... but without imagination, she looks for an artificial mind filler.

 

Midday:  Joe has messaged to say that she's had a good morning with the brace on and she's having an HJ reward.

Now .... there's something else we couldn't have coped without ..... all the wonderful people who have stayed with us as aupairs over the years.

Evening:  It's been all hands on deck to do preparations for the staff Christmas party.

#1416 Friday 2 December

Ooooo wot a night!!! She didn't sleep till 2am.  Naomi took first shift till 11:30 .... I slept from 7pm to 11:30..... then Naomi slept and I handled it till she finally gave in at 2am.   A large factor in this stellar performance is .... we suspect .... the dreaded constipation.  She is on iron tablets for low iron levels .... and the codeine for pain from the tooth .... both these have a side effect of constipation.   This morning it will be a visit to the chemist to find an "unblocker".

The discomfort from the constipation is prducing anxiety behaviour .... she's fixated on "Bali" .....  

9:25pm  The pattern from last night is repeating .... except that it's not pain or constipation .... she is wanting attention .... she wails for a period .... then listens to see if there's a response .... no response? .... more wailing.  We have to wait her out and break the pattern

9:45 .... I think she may have given in and gone to sleep.

#1415 Thursday 1 December

She's in a bad way this evening .... it started after school .... she says that her neck is hurting and nothing we do is making it right for her.  She's very miserable and crying her heart out. Naomi is home from work now and I'm hoping that the "mummy magic" will do the trick.

Joe and I have been fixing the roof sheets over the spa area ..... we did 2 yesterday and 3 today ..... there are 2 left.  It's hard work as it is plastic sheets .... not metal .... so you can't put any weight on the surface.  The sheets have to be secured while standing beside it .... and sometimes there's nothing to stand on!

#1414 Wednesday 30 November

Today? ..... . DENTIST!!.... it's at 10:30am .... I really hope he can swing a quick fix so she can be finished with the pain.  The system of regular doses mean that the pain is not bothering her too much but she can't stay on painkillers for very long.

1:30pm  Well!!! .... it was all a false alarm.  The tooth .... that a few days ago was growing into her cheek .... has now corrected itself and it's growing the right way ...... it's not a problem!  The dentist says ... yes, they do that.   So it's all ok.    Amazing.

#1413 Tuesday 29 November

Phew! ..... the medication worked and she slept well.

4pm  She's home and happy.  The regimen of codeine on a timetable (rather than when needed) keeps the pain under control. If the dentist visit goes well, she won't need it much longer.

Joe and I began fixing the new roof sheets this morning.  It's hard work and I think aiming for 2 (of the 7) each day is realistic.

#1412 Monday 28 November

Poor thing .... it's 2:30am and she can't sleep.  Naomi has gone downstairs and will probably stay with her. 

7am  That was a good move .... she was able to settle when Naomi was with her.  I think she will have a trip to the doctor this morning!

8am  Naomi reports that Kaylia was quiet from 2:30  but didn't actually sleep till around 4am.  I'm trying to get a GP appointment to get her some serious pain killer .... we have to help her till a hospital session can be arranged.  The dentist on Thursday will just arrange the hospital ... he wont be able to do anything on Thursday.

She's resting.....

We have an appointment with the doctor in an hour.

8pm.   We now have some stronger medication and so her day has been good. She should be pretty drowsy tonight and have a good sleep.

#1411 Sunday 27 November

Gee that tooth is a bad one.... it has pierced her cheek and it's really hurting her.  We're giving her regular painkillers.  I just hope we can get some treatment quickly.

Today I was up at 5am while the rest of the house slept till 9am.  I was able to get many tasks done.

Now it's nearly 7pm and she's wanting the bedtime routine.

8:30pm ..... I spoke too soon..... the tooth is giving her too much pain and she can't sleep.  She's been crying since 7 despite all the painkillers.

There are no emergency dental services!  The major hospital used to have one but it has been closed to cut costs.  The current plan is to try and survive the night and take her to the GP in the morning.  Our only other option is to take her to a hospital emergency department .... but this is extremely bad for her so it's not an option we would willingly choose.

#1410 Saturday 26 November

I wonder how long Kaylia will sleep in this morning?  It's 7am now and she hasn't made a sound yet.  These days she is really liking a sleep in ..... once again it's a very appropriate behaviour at her age.

At around 7am Naomi asked if the spa could have bubbles ..... and I remembered that it does have an air blower .... I just hadn't fitted it.  So the search was on .... and I found it.  The spa now has lots of bubbles and Kaylia loves it.  As soon as she got in she found the hot water hose ..... and that was it!! She was in stimmy heaven.  The water from the heater is +2deg each time the water circulates and it's delicious to have it pouring over you.  The pump circulates the volume of the spa every 15 minutes .... so on a warm day, it heats the spa quite quickly.

K and I stayed in for ages .... and now at 2pm she wants down time ...... and she even wants "no daddy"!

10pm .... she's still wide awake.  She's been singing away ..... lots of different songs. Both Naomi and I have tried all our ideas to try and settle her .... to no avail. It looks like it's going to be another very late night again.

#1409 Friday 25 November

The reports from school are that Kaylia has had a good day with the brace. She is give a target time and she gets an immediate reward when the time is up.

Her tooth problem is worrying .... the tooth is growing into the cheek and it's raw and bloody ..... and it is clearly hurting her. I'm trying to get a cancellation at the dentist .... it will be Thursday otherwise.

The spa heater is working well .... it reached 35deg today.  Today I completed the roof structure over the spa area.... the task will now be completed in a few days. I'll be glad to see the end of this project .... it's dragged on for too long.   After this I have one more major project .... moving the "bungalow" about 3m closer to the house ..... and then I'll call it quits.  It's getting too hard.

#1408 Thursday 24 November

6am .... we were discussing Kaylia's iphone habits ..... the things that she searches for are changing as she grows up ..... she watches less "baby stuff" now .... but her habits and interests are a bit anti-social.  But then she has no social network apart from the adults in this house so being antisocial doesn't really matter. 

3pm  Today I made all the connections between the solar panels and the spa ..... and it works!  the water temperature has gone from 21deg to 31 deg in about 4 hours.  The spa will be very good now. It will be interesting to see how it performs in winter.  It should just mean running the heater pump longer.  The heater pump is 200w so it costs about 20 cents to run it for five hours.

4pm Kaylia is home from school .... she just wants to relax.  I dangled various "carrots" .... drive ..... spa ..... but no ... she just want to chill out with daddy.

The strange thing is that she's not interested in the outside bath or spa at this time. A year ago her world revolved around the bath outside and she would play there for ages.  Not now ...... go figure?

#1407 Wednesday 23 November

I'm exhausted.  I've been up on the roof preparing the structure so that the roof sheets can be put in place ..... it's hard work and hot work .... so I only did 2 hours.  But even that short time was enough.  I hopped in the spa after that .....brrrr ..... it's too cold!!!
So ..... a Bunnings trip was needed to gather the fittings needed to set up a heating system for the spa.  I will finish the heater tomorrow when the weather's cooler. The heater will use the solar panels from the old HWS..... with a pump to circulate the water.

Kaylia has had her back brace introduced at school.  So the time that she is wearing it is increasing.

#1406 Tuesday 22 November

This is a rant .... it's because of Kaylia's tooth.  The tooth will probably have to be extracted .... because of her disability it will have to be done in hospital.
Now Medicare pays a benefit for dental work for children with a disability ..... but the benefit is not claimable if the dental work is done in hospital!!!!

So .... she is eligible because of her disability ..... but she can't claim because of her disability!!

Joe and Ellie have been doing great things this morning .... painting the railing round the spa.  I'm finding the stooping and bending to be hard these days so it's really good to have some help.

#1405 Monday 21 November

You may recall that Kaylia is no longer being medicated to reduce her "stimmy" behaviour ..... one effect of this is that she would rather stim on her iphone than go to school in the morning!  This could be considered to be a normal teenage behaviour ..... she will be a teenager in about nine weeks!

We have a bit of a fan club going on in our house  .... we are fans of our bobtail goannas!  .... and this morning I found that we have a family of them living in my shed!  I watched two very large ones come in under the door and go over to a spot under the shelves.  They were easily over 30cm long .... very impressive specimens. Chris, you would be very happy!  The lizards would like the shed .... safe from the birds and other dangers.  These two are so big that I think a kookaburra couldn't pick them up.

6pm  Kaylia still doesn't eat much ..... but tonight we had mince sauce thingie on rice ..... and she wanted lots of black pepper on it.  Then she wolfed it down.  

This afternoon, she has had 2 x 45 minute brace sessions ... so she earned herself a Calypo icypole.

8pm  While doing Dr Daddy teeth cleaning tonight, I found that a molar has erupted to the outside of the top right jaw ..... bugga!!!  Poor girl .... she really cops it.  ..... autism ...... kyphosis ..... and weird teeth!  I'll call Dr Comacho tomorrow to see if we need any prompt action on this.  I'm very surprised that this tooth wasn't seen in the x-rays that were done earlier this year.

#1404 Sunday 20 November

The "honeymoon period" with the back brace is over ..... it's becoming hard work to get her to wear it. ..... and as the days get hotter, the brace will become more uncomfortable.   The stakes are high though.  If she doesn't accept the discomfort of wearing the brace, then the consequence will be to have a spinal fusion to control the pain that she gets from the kyphosis.  The choices are not pretty either way.

11am  I've had a success this morning .... for a long time I've been stymied trying to get the spa filter/pump system working .... and this morning I looked on YouTube .... and the solution was easily found!  The  spa is now pumping beautifully.  Kaylia will be very happy.

3pm  she's had an hour of brace and she's now considering whether the prospect of an icecream is enough motivation for another hour.

#1403 Friday 18 November

She did sleep after that.  It's amazing that a night like that doesn't have any effect on her next day.

6:20am .... Teddy communicates pretty well!  He normally sleeps on the couch in the entry .... he has just dragged his blankets into the bedroom and dumped them beside the bed.  He's clearly saying "I'm cold ...  wrap me up please."   so I take the blankets out to the couch....  he hops up .... I wrap him up ..... and he's happy.

10am She must be feeling the effects of her late nights ..... when it was time for her to put on her shoes and go to school, she told me "No school .... bed".  Maybe she will learn to sleep?

9pm  She's clearly tired .... she went to sleep straight away. 

#1402 Thursday 17 November

It's 7:3pm .... Kaylia has had her nightly teeth cleaning session .... and her "blue blanket" tuck in ..... and her story time .... and now she's happily singing away.  I like this new routine.  Naomi says the behaviour is normal for her age ....  but I like it! It's a welcome change from a few months ago when she had to have one of us with her before she would settle to sleep.

11:30 .... she's still awake.  We can't stay up any longer.

12:30 ..... she's just been up to ask for the blankets to be sorted.  I hope she sleeps this time!!!

#1401 Wednesday 16 November

Normally Kaylia is totally lacking in the social mannerisms ..... last night after I tucked her in for sleep, I said "Goodnight" .... the usual response is silence ..... but last night she responded "Goodnight" back to me.  It felt really good.

The saga of the back brace continues.  The goal is to get her used to wearing it ..... without her building a resistance.  If she is to wear it almost full time, then it needs to be a natural thing. ...... and we have to make it comfortable in hot weather!  Wearing it while in Bali is going to be a challenge!

Video - Kaylia at breakfast.  It's a video selfie .... she's watching herself on the camera.  I've included this for all you Kaylee fans .... so you can have an up to date Kaylia fix!

#1400 Monday 14 November

3:20pm .... Kaylia has just arrived home.  I'll describe that for those who don't know..... she can be heard all the way in from the car .... a cross between a drone and a song.  As she comes in the door and down the stairs, she's engrossed in her iPhone and my "hello" gets no response. She plops her school bag down and heads for her room.   This behaviour in a normal child would be worrying and you'd be correct to say that we need to work on improving it..... so we then apply the auty filter ..... she is in her own world and probably didn't even hear anything said to her. Blaming the iPhone doesn't work either .... it would be just the same without it.  sure we could enforce the correct social behaviour ..... but this is her down-time and its a battle that we choose to ignore.

7pm A short while ago we were outside on the balcony watching 3 kangaroos in the backyard.  We are so fortunate to live in this place ..... it would be sad to not be able to see these wonderful animals.

#1399 Sunday 13 November

Its the normal Sunday routine .... pancakes for breakfast then into the car for a drive ..... to Ikea this time .... and then to the op shop.

4pm we came home .... and her period struck her .... Big Time!   I was out the back of the shed and I could hear her wailing.  Poor thing.  Usually the magnesium tablets help reduce the pain but not this time.  

I can't help but connect the "supermoon" with this excessive period... It may be coincidence...... but when a "coincidence" is repeated in a predictable, reliable way when particular causes occur ..... then in my mind it ceases to be a coincidence.

7pm and she's still going.  We're scratching heads to work out what to do.

#1398 Saturday 12 November

I've been very busy with house work while Kaylia is out for a drive.  I've moved my "office" from the loungeroom back down to the basement. Now Kaylia is home again and we're downstairs watching some videos she hasn't seen for ages ..... Playschool.

While watching, she sometimes became very excited and she would flap at a huge rate.  I noted that it was always when the characters on screen were doing body movements  resembling her "flapping" .....

Earlier I had a surprise visit from Colin .... He has a new car .... A Camry hybrid.  Its the first time I've been close to one .... It was very impressive to drive. 

Kaylia was able to wear the brace for an hour and a half this morning.  She's getting used to it. When we were about to go over to Maxine's, I asked her if she wanted to wear the brace ..... she did!  That's good progress.

The full moon is in two nights time .... tonight, she's not sleeping again.  Again, she is well behaved and happy .... just not going to sleep!

Later: it was midnight before she slept!

#1397 Friday 11 November

The process of getting her used to the brace continues ..... yesterday she had it on for an hour after school. It will take a while to get her ready to wear it at school.

10:30pm. She's having a hard time getting to sleep tonight..... perfectly behaved but just not going to sleep. She lies there talking to herself .... and every now and then she sings a song.  When I went in to encourage her to sleep, she wanted "daddy stay?". Its so tempting to do as she asks but she won't learn if I do.

Now 10 minutes later she is quiet.... maybe?

#1396 Thursday 10 November

In the midst of turmoil, Kaylia is a centre of oblivious calm ..... she drones away ..... and is happy just to be hugging her mummy.  She's a lesson to us .... life goes on .... focus on the important things.

She has community excursion today where the kids are taken to shops or the city to experience the every day things that hopefully will be part of their life in the near future.

10am. I'm definitely 'codgerish'!  I had a doctor's appointment at 10:15 ..... I rolled up for it ..... and found that I'd come an hour early!

Later:  Don't trust the internet!  I've been trying to locate a doctor who I saw 16 years ago .... every phone number and every applicable bit of information about specialist practices is wrong!! Complete dead end street.



Magpies at the fast food outlet! The zapper gives them cooked food for a song.  One of these two is the "talker"  .... he has been trained by someone in the past and he says "Hello Boy" ..... he has been around for 14 years that we know of  ..... so he must be older than that.  He was talking to us in 2002.


After that spot, they move to the clothesline ..... and sit there while they search under the roof  for spiders.

#1395 Wednesday 9 November

Gaaarrhh ..... Full moon is coming! Next Monday!  So all the usual behavioral quirks will happen over the next few days.   ..... and we have the election tension as well!!

General comment: Kaylia is now much more aware of her surroundings ..... this morning she went out the front door and the door didn't close properly.  She noticed this and turned around and closed it.  This is excellent ..... It means that her brain is now better at filtering the inputs so that she can be aware of things that matter and ignore inputs that don't matter. This then results in much greater learning.

4pm Gaaarrhh.....  Gaaarrhh..... HE'S WON!  Disaster.  We have to build our bomb shelter ASAP.  

#1394 Tuesday 8 November

We're at the hospital ... The back brace is being fitted.  Kaylia is very excited about it all.After the final adjustments are done, the brace will be finished and we will start the adventure of seeing if she will accept it.

3pm. The brace is completed .... she's not wearing it to school yet ..... that will wait till we are sure that she is accepting it.  We don't want it to cause any problems at school.

9pm. She must have been worn out by the day ... she went straight off to sleep at 7pm without any iPhone time.

#1393 Monday 7 November

Wow!!  The ABC news reports that a group in South Australia has developed an approved method of using SCUBA equipment to provide "immersion therapy"  The group is receiving a National Disability Award today.

"Scuba gear is used, but immersion therapy is about more than just diving in a pool.
It is accessed through medical referrals and has been used to improve the lives of those who live with paralysis, cerebral palsy, and autism.
"Things like pain reduction, general wellbeing, mental health, and across the board everything's just getting outstanding results," Mr Wilson said.
The Adelaide-based facility is helping people with a disability go underwater to discover a freedom of movement that would otherwise be impossible.
For that reason it is one of 23 finalists nominated in eight categories for the 10th anniversary of the National Disability awards, which will be presented at ceremony at Parliament House in Canberra tonight.
There is only one criteria: finalists must do something to improve the lives of Australians with a disability, their families and carers."

Click on this link below to go to their website.

 Determined2

__________________________________
 So .... I made contact with the group straight away ..... and it will be great to see where it goes.
I'm told that the therapy has been developed with complete medical approval and  it can be funded by NDIS.   It all sounds very impressive. ..... and it sounds like something that Kaylia would be 'over the moon' with!

The group is hoping to get the therapy available in WA next year ...... but it sounds as if there may be funding to make it possible for Kaylia to go to Adelaide to experience it sooner than that.

==========================================




On the home front, Kaylia was being her most adorable self this morning ...... this is what happens when we do up her shoe laces!













I had to put on my plumbers hat today .... we had a pipe leaking inside the wall in the kitchen ..... so I had to demolish a part of the wall to replace the leaking pipe.  ..... but I saved a lot of money!

Some of you will recognize the place in the photo ... taken from the laundry doorway,  you are looking at the wall which is part of the linen cupboard at the rear of the kitchen sink .... I had to remove quite a bit to gain access to the pipes.

#1392 Sunday 6 November

In the midst of a lovely sleep in, we get a demand .... "PANCAKES". Ah well.

Today it will be the usual routine .... drive to Maxine's .... then to the op shop ....  then home.

Meanwhile .... in the real world, the tension is mounting .... Tuesday we will find out whether worldwide madness will reign for the next four years. Its scary.

..... and in Oz, we learn that our "wonderful" government has reverted to its delightful practice of arresting people at 2am to deport them. 

7pm .... she's had a long bath and now she's crashed in bed. I think she will sleep well tonight.

#1391 Saturday 5 November

I've been pondering the way Naomi and I have been raising Kaylia.  Some people might say that we are too easy on her .... she is probably capable of more than we insist on ..... but I figure that life is largely about relationships and we aim to keep her anxiety and stress at a low level. Quality of life is far more important than her 'scores'. 

An aside ..... our immigration Minister says that there are sixty two thousand people in Australia illegally .... our indigenous people say that figure is wrong .... the number is actually closer to twenty three million.

#1390 Friday 4 November

Today, Naomi and I will be attending the wedding of a friend's son ..... Jelly will be doing the bed time routine so it will be interesting to see how Kaylia reacts.

6:30pm At the reception ....

The noise level is so high that it's isolation in the midst of chaos.

I wonder if Kaylia will improve to a point where a relationship is an option.

#1389 Thursday 3 November

The late nights have caught her!  After a string of nights where she has not slept till around 10pm ..... plus a swimming session after school ..... she went off to sleep early and didn't want to wake this morning!

Have you heard of a Trackr?  I got one and I'm thinking that if I put mine on Kaylia, we will be able to locate her if she gets lost!  .... or I can put one on me so Naomi can always find me!  (That's when I get so old and codgery that I wander off and get lost!)  .... or I can have one in my car so I can find the car in the car park!

Anyway .... they have a neat marketing tool.   If you want a Free TrackR you can use this link to purchase .... then we each get an extra one free.  Cool.

 Free Trackr 

and when you purchase a Trackr (about $35), we’ll both receive a Free TrackR each.

4:30pm. Kaylia is home from school and we're both on the bed.   She's droning away and watching YouTube on her iPhone.  I've recorded some "drone" and now I'm trying to work out how to add it to the blog.

 Kaylia's drone
..... mmmmm .... easier said than done! It looks as if adding video would be much easier so I'll try to record a video clip.

#1388 Wednesday 2 November

The article below is copied from the ABC News website ... it was brought to my attention by Margaret Forrest in Qld.  Kaylia's future employment prospects are a concern.

__________________________

Piggery seeks employees on autism spectrum for animal husbandry and welfare roles

891 ABC Adelaide

By Brett Williamson

What was seen as a hurdle is now a prerequisite as companies see the benefits of employing workers who are on the autism spectrum.

Information technology and cyber security organisations have discovered employees with autism are perfect for high attention to detail roles.

And in what is believed to be a world-first for the agricultural industry, Sunpork Farms has advertised for eight animal husbandry and welfare positions — but as a prerequisite, applicants must provide medical proof that they are on the autism spectrum.

Autism at a glance

• ASD is a group of neurobiological disorders affecting a person's communication and social abilities
• ASD affects about one in 160 children, with boys four times more likely to be affected than girls
• Symptoms are different in each person affected but can include repetitive behaviours, difficulty relating to people, and sensitivity to stimulation including touch, sounds and sight
• Symptoms can appear as early as the first year of life
• There is no cure but can be managed with appropriate and early intervention
• Genetic and environmental factors are being investigated as the cause which as yet is undetermined
• The rates of ASD are the same in both vaccinated and non-vaccinated populations
  
  ABC Health and Wellbeing

Dr Robert van Barneveld, managing director and group CEO for Sunpork Farms, said this unusual recruitment decision was made after seeing the success of other Specialisterne projects.

Dr van Barneveld consulted with the Autism Cooperative Research Centre (CRC) and then developed the Autism and Agriculture CRC.

"Prior to embarking on this program we'd had a number of industry workshops about priorities, and investing in people with a high attention to detail was one," Dr van Barneveld said.

"We've found a way that we might be able to accommodate that in quite an innovative way."

Tech giants already on board

Technology companies Hewlett Packard, Microsoft and Google currently seek out employees on the spectrum for IT and software testing positions.

The Department of Immigration and Border Protection has also sought out people with autism for specific roles in the past.

But Dr van Barneveld said to his knowledge this type of targeted recruitment for animal husbandry roles had not been done anywhere else in the world.

"These are specialist positions that we are putting in place — they'll be filled by the best candidates and paid a full wage for the job they have been employed to do," Dr van Barneveld said.

Dr van Barneveld said it made good business sense to seek out employees who were focussed, comfortable with routine and eager to work.

#1387 Tuesday 1 November

Melbourne Cup day and Jelly (Joe/Ellie) went to Ascot for the day .... both dolled up to the nines.  At 7:30pm they're not home yet.... must have been a good day!

I picked up Kaylia from school .... she was very happy as usual.  How fortunate she is .... and we are ..... that she enjoys school.  At the moment she's in the bath .... she sings and soaks till bedtime.  She has lots of bubble bath so she's a "clean machine"!

Preparation for the staff Christmas party continues .... the big job of cleaning the roof is half done.

In the past I've commented about not knowing who or how many are reading this blog.  Yesterday I heard that someone whom we haven't seen for some time still reads the blog regularly.  I'm glad that the blog is serving a good purpose.