#1452 Saturday 7 January

DandM!!!! Beware!   I've been pondering "imagination" again ... isn't it really the single most important factor that makes us "human"?  Imagination is essential to other characteristics .... without it we could not experience compassion, we could not reach out to the stars, our phones would not exist ..... on and on.

Evening:  it's been a tough day .... not because of Kaylia .... she's been a gem today.  Rather it was physically hard .... although I can mostly just supervise, I still had to be up and down the ladder many times .... and using the saw ... 'cos no-one else can use it ... or will use it.

This evening Ellie told us of their time swimming with turtles on Gili Island......

 From Naomi:
I'm loving this holiday with Kaylee (now that we're over the stress of transition). Two noteworthy incidents today.
First one - Kaylee often asks me to come into her room to spend time with her. Today she asks me to come in and promptly shoves her iPhone into my hand and tells me (in her way) that she needs help with Youtube. I work out what is wrong & fix the problem for her. Then, as I settle in along side of her, she tells me "go". When I complain that she's being unfair, she tells me in no uncertain terms to "go" again. As I leave the room (feeling a little unloved) she can be heard saying "hooray". My little girl's developing attitude...awesome :)
Second one- Kaylee comes in tonight wanting stories from me. Those of you who have lived with us will know she has a her personal favourite "mummy stories" at bedtime. As I'm leaving the room, I mumble under my breath "I wonder how many I'll have to tell tonight"...quick as a flash she comes back with "5". Then we have to negotiate which ones as I hold her to five stories only :)
I love these interactions where you get to see her personality. She may not have many words but she uses them effectively

#1451 Friday 6 January

Kaylia had an unsettled patch last night .... she woke up too hot at around 1am and I think she slept again at around 3am.  I say 'think' because I sort of slept during that time ..... every time she got too noisy, I'd just surface and tell her "go to sleep" .... and she'd quiet down for a while.   During that time she was quite restless .... she flings herself around .... and I copped an elbow in the face .... twice.  That's a big shock when you're fast asleep and she does that.

Today she slept till around 11am after I'd gone off to Mitre 10 gathering paint and other supplies.
This morning I began ripping up the timber pool deck .... this is to be replaced by stone. Other guys are here today installing a new internet cable.  The current connection is broken and we are being connected to the much better cable which runs along Jalan Mertasari.

We're at Acquaviva for tea .... this is Kaylia's bubblegum milkshake.

Followed by Naomi's taro milkshake ..... which tastes like marshmallow. 

This is my "koloke"  chicken with sweet and sour vegies .... it was delicious.

#1450 Thursday 5 January

From Naomi:
Living with a child with Autism is all about learning the daily rhythm and going with it. Our holidays have evolved into a routine, which funnily enough makes us....  parents.....  happy too. In the morning we sleep in. I then start a bath ..... and about 10 minutes into it, Kaylee joins me. Fortunately we have a huge outdoor bath.

Our bath time is spent communing with water, ..... the way it looks... the way it moves when it is poured from one container to the next. I often lay back and look at the sky or the birds in the trees. For Kaylee it's all about the water.

I've come to realise that Kaylee has her own internal visual vocabulary for the look and feel of water.  I wish she had the words to share this with me ..... but knowing is enough for now. Incidentally, at some point during our bath together she gives me "the look". When I ask her if she wants me to stay or go, she usually replies "bye, bye".  Exit mummy stage right :)

Now .... what happened today?  Kaylia was in the bath most of the day!!!!!

Late morning I went out to try and find out  what  timber costs per metre .... we have replace the decking round the swimming pool and I want to estimate the cost.  It was a waste of time .... we couldn't find any suppliers.  So I went home with a supply of sate for lunch instead.

Afternoon saw me much more successful ..... I found a good stone supplier instead.  So the timber deck will be replaced with stone.

Evening ..... home delivery pizza..... yummy.

#1449 Wednesday 4 January

Today the mad painter is going to be painting the bathroom ..... we will have to manage Kaylia's bathtime!  The "mad painter" is a woman who we employ ... we supply the paint .... she supplies the painting .... she's a real character.

Life with Kaylia is a bit better at present .... we're not so manically worried about her .... and we have a little space to be human at times.

2pm  We went to Hardys this morning for our 'excursion'  ..... Kaylia loves going to the DVD shop .... she gets to choose 4 or 5 DVDs each time.  Often the DVDs are ones she already has .... it's the thrill of buying.

Now it's Naomi's writing time ..... her thesis .... and K and I are relaxing.

#1448 Tuesday 3 January

It's been a quiet day...... a bath ..... a drive .... lunch ..... a bath ..... she's happy. 

There are other things happening .... but this blog is about Kaylia .... so I won't spoil it by adding the other stuff.

I made enquiries about 'retirement visa' today .... and found out that if I had a retirement visa to stay in Indonesia, it would not mean that Kaylia could have a visa .... so it's not an option for us. Ce la vie.

Tea at Gardenia ..... Kaylia sometimes wolfs her whole meal ..... tonight she just wanted the chips and the chicken burger was left.  The resident dog enjoyed the chicken.

9pm  She's having a really bad night tonight..... pain in her neck which means that her outlet is strong nagging and stimmy behaviour.  It's very unpleasant for us ... and much worse for her.  We've resorted to "Big Gun minus One"  ..... we've got one stronger analgesic in our arsenal ... I hope this one does the trick.  I don't think there's much worse than your child being in pain.

#1447 Monday 2 January

The day has dawned very overcast and now at 8:30am it's raining ..... Kaylia is in the bath .... which being outside, is in the rain ...... and she has just her nose above the water.  It's probably very pleasant in a warm bath like that .... she surfaces for a short time and chortles ..... she certainly sounds happy!

5pm  It's been a quiet day.  Our hired car has not been available today so we stayed home.  Kaylia had another bath this afternoon ..... and she has been flopping all over us ......

Isn't that brilliant?  Naomi was lying on the bed and Kaylia flopped on top!  I've been lying down reading ..... and Kaylia winds her legs round me .... I think she's thinking "You're mine."

#1446 Sunday 1 January 2017

The first day of the new year .... and a chance to 'stocktake' on 2016.
As it was Kaylia's first year of high school, that would have to be the best .... I'm sure she thinks so.  Not an hour goes past that she hasn't told us how much she likes school.
Then there is her progress in medication.
Her kyphosis and the brace.
.... I'll keep adding to this list.

Today ..... after a very leisurely morning .... breakfast at midday ..... we went for the obligatory drive ...... this time to Nusa Dua.  We went to a 'tourist shopping centre' .... for rich tourists.  We last went there about 10 years ago and it is now about three times the size! I saw this chipmunk while walking around .... I'd love to take a chipmunk home!

(Naomi says)  New Years day in Bali. Our neighbours (local Balinese family) have been using up left over fireworks during the day (random booms). This afternoon about four to six of the kids have been blowing horns (the ones you buy for NY Eve). They are very loud. So what do you do when the neighbours are having too much fun? Why... join in! I think in the end, we were doomed to defeat - our two horns were no match for their four. Indonesia wins this Olympic event hands down!

 

Evening:  We're at a spot on Jn Cemara .... set well back from the street.  Very pleasant and atmospheric. It's very reminiscent of Bali 20 years ago.