#127 Saturday 25 December 2010

38 days to go
Christmas Day ..... best wishes to you all!


The day started early (as usual) and by 7am, Kaylia was downstairs on her HUGE ball ... its a blow up plastic ball about 150cm in diameter ... she can climb on top and look through it (it's transparent) while I bounce her up & down .... she loves it.
Today we'll have lunch with the Ward family .... because of Kaylia's autism, we can't join my family - there will be three young children and Kaylia is extremely sensitive to the sound of small children ..... she would immediately be stressed out badly if we took her there. We have learnt that we shouldn't even attempt such a thing.
I'm sitting at Mundaring Weir as I write ... taking the others on a 'tour' ..... but K wouldn't get out of the car so I write while the other walk over the weir. Soon we'll complete the driving tour and K will be happy again.

Later: We're now at Dean's place for Christmas lunch. It's quite hot and it's good that he has a pool. Too hot for outside eating .... stay in the air conditioned area!
Naomi has not recovered from "the wog" that K so kindly passed on. Naomi is finding it hard to cope with all the Christmas events .... so its no wonder that Kaylia has had a tough time in the past week


- Posted by the Kaylee Blogger

#126 Friday 24 December 2010

39 days to go
Christmas Eve
GOOD MORNING ALL .... sorry for shouting! (Sl'mat pagi to you Pete!)
The day feels like Bali ..... hot & humid.

The sore toe is much better today. Kaylee seems happy .... lots of woggi-mewon for breakfast.
The schedule for today? Not much! Naomi is sick with a wog that Kaylee has probably had for the past few days ..... maybe thats why she's been grotty! Once again ... if only she could tell us how she is feeling.



Later
Its 8pm and Christmas Eve has been very special ..... with friends, food, presents ..... Kaylia has really understood that it is a special night .... when it was time for presents, she stayed in her room till it was time ... and then she gave out the presents. What a special time! What a long way she has come in the past twelve months.....
Tina prepared a s.l.l...o....o....w. meal ..... cooked on the table .... followed by present exchange ..... this is a Christmas that we will remember for a long time. Thank you Tina, Zoe, Anni, Barbara and Anita.

I'm now sitting outside while Kaylee has some spa time .... she calls it "Little spa" ... as distinct from the "Big Spa" at Kym's. Kaylee will sleep well tonight ... its been a big day for her.

- Posted by the Kaylee Blogger

#125 Thursday 23 December 2010

40 days to go

Today will be busy!
Anni & Barbara will arrive at some point - though we don't know when! I have an appointment at midday for the doctor to look at my toe .... I need to talk to the city council about business planning ...... there are final Christmas gifts to find ...... and through all of this we have to manage Kaylia's current high anxiety .....
We have to put first priority on Kaylee and everything else must fall into place around her ..... if Kaylia gets out of control, it becomes much, much harder to get anything else done.

Yesterday was a good Kaylee day ... although tired, she stayed on top till tea time ... then she lost it. We could see that she was very tired again ..... but she wouldn't let go and sleep!

Check out this video on YouTube: Autism Every Day - 7 minute version

http://www.youtube.com/watch?v=FDMMwG7RrFQ&feature=youtube_gdata_player

This shows what it's like to be a parent of a child who has autism ..... much of it is very real for Naomi & I ..... my impression is that Kaylia's autism is actually worse (than most of the children in the video) but she has made more progress in recovering ..... I feel that we're coping better than most.

Today, we were noticing how good it feels that Kaylia is actually using names when trying to get our attention.

[The blog will get lots of writing today .... I've just had the ingrown toe nail fixed ...so I have to keep my foot as high as possible ... good for writing!]


Another thing that caught our attention was that when Anni was about to go out shopping, Kaylia said "NO!" ..... this is the first time she has demonstrated awareness of someone leaving ..... normally there is no reaction at all. We had to reassure her that Anni would be coming back .... then it was OK. This is quite a significant development and we realized that there have actually been several small but significant developments in the past few weeks & months.
- Posted by the Kaylee Blogger

#124 Wednesday 22 December 2010

41 days to go

Well she survived .. and she survived well at that! After Monday morning (being up from 2am) she then coped with Monday (still pre full moon) .... slept right through Monday night and then during Tuesday, she slept for 3 hours during the day. So last night, she was not wanting to sleep! She was still awake at 10pm but once she finally nodded off, she was out till 7am.

I've been discussing "blogging" with a couple of people .... talking about the purpose of the blog .... or the purpose of any blog ..... it's an interesting phenomenon ... at what other point in history has there existed a 'public diary' such as a blog? In past times, when someone published their diary, it was usually years after the fact ..... but now it can be a daily story! "..... Today I did XX" It's a new form of writing ... events can be described and published moments after they happen! Amazing!

The power of the internet ..... for instance, the Wikileaks saga .... I suggest that never before has there been such a public abuse / misuse of the justice system by those in power. Sure, there probably have been worse examples behind closed doors ... but the current public actions by US, Australian, and Swedish authorities are such a blatant and public abuse of process that it leaves me deeply disturbed ..... no - not that .... deeply disappointed that the corruption in powerful places seems to really be as bad as I feared.

Excuse this diversion away from Kaylia ...


- Posted by the Kaylee Blogger

#123 Tuesday 21 December 2010

New moon
42 days to go
Actually .... its not a new moon .. its a full moon. It appears that the link is to the period immediately before the full moon. I've been back for most of this year and most of the full moon dates have been just after a period of unsettled behavior ... I would say that there's a clear link already. If I keep track of this over the next year, we should see an interesting pattern emerge.

Last night, she slept well! Poor thing .... she was worn out from the night before so no wonder she slept.

Not long now till our visitors arrive! Christmas this year will be very unusual ..... it won't have the normal emphasis on family as Kaylia's current anxiety and sound sensitivity mean that we can't go where there are young children (this rules out joining in the Croft gathering) and we have to be ready to leave a noisy situation.

I can almost hear people saying "Surely she just has to get used to it??" ..... I can understand this viewpoint but its a solution that might be OK for a neuro-typical child - not for Kaylia at this stage of her development. At present, she is not able to understand what is happening and make adjustments for it .... for her, the stress just builds and builds till she erupts in a melt-down. She doesn't like being out of control and we try to manage her environment so she can manage own her stress levels ..... she has her own strategies for this and she does it well .... but there are limits to the amount of stress she can handle. She is good at her 'down-time' strategy ...... so we try to bring her into a physical place where she can then use her own strategy.


- Posted by the Kaylee Blogger

#122 Monday 20 December 2010

SHD 4/47
a.a.r..rg.g.h.h!!! It's 5:30am at she's been running round downstairs for 3 hours! .... and the full moon isn't till tomorrow!!
Tea time: The day has gone surprisingly well. Although very tired, Kaylia has coped with challenging situations (crowds at the shopping centre) and finally performed well at her therapy session.

People have commented on the link between behaviour and the moon phases .... yes ... the link is very real. There are many people ... children and adults ... whose behaviour can be directly linked to the phase of the moon. We can see it very clearly with Kaylia .... nearly every month, her anxiety, sleep and general rattiness is affected. In the past we have remarked on the behaviour ... then noticed the moon! I plan to mark the new moon on the journal .... so we can adopt some pre-emptive strategies before the moon hits us!

- Posted by the Kaylee Blogger

#121 Sunday 19 December 2010

Good start to the day ... rearranging all her DVDs to downstairs .... by 10:30 we all went for a drive (to look at a possible office building for the business expansion). Kaylia was happy to go for a drive while this was going on. After this we went home, then drove down to Stana & Dennis' place .... this was a disaster as Kaylia went into a full on 'melt down' soon after arriving. Naomi tried for an hour to calm her ... without success. It was a really bad one with Kaylia right out of control. We gave up and went home.
Driving home calmed her and she went into ''down-time" as soon as we got home. The rest of the day was fair to muddling ... she was anxious again by tea-time .... due mainly to hunger. Food in = anxiety gone! I wish it were always so simple!!!

Moon phase project is going well - it will be good to watch.


- Posted by the Kaylee Blogger