#803 Saturday 12 January

She went to sleep at 11pm .... Awake at 4am .... Up at 6am. She has still managed a full day of activities but now at 6pm she's slowing down. Not surprising ....

Maybe we will all get a good nights sleep tonight.

#802 Friday 11 January

AJ has been doing a wonderful job of setting up Kaylia's room so that it can be kept more tidy.
                                                                                  Look at this!







After this, Kaylia put on a dressing gown and was saying 'dentist' .... we realised that she was pretending to be the dentist! So we continued the game .... I was the dentist and Kaylia sat in the 'chair' (a small cupboard) ..... she sat there with wide open mouth while I used a torch to do an examination. We looked at photos from her last real dentist visit. She loved it. The significant thing is that I think it was the first real imagination she has shown.


Earlier in the day AJ had been explaining to Kaylia what the program was for the day .... and she used the terms first, second, third ....
Kaylia handled it well.

#801 Thursday 10 January

Busy day again! I picked up Deb from the airport this morning .... Deb will spend some holiday time with us before taking over when AJ leaves next month.

Kaylia has had another good day at the 'yake' ..... this time when Zoe went for a long swim out into the lake, Kaylia took off after her!  Out in the really deep part of the lake she was swimming round Zoe and AJ .... and diving down to see how deep she could go!  From AJ's description, Kaylia was probably down about 4 metres.  Her swimming ability is quite something for a 9 year old!.... and it's good for her parents that we don't have to worry about her.  Her ability to float is much more instinctive than mine ... and I consider myself a good swimmer!

The chart (which we set up to control the nagging) is working quite well now.  She is still 'trying it on' but the nagging is diminishing.

#800 Wednesday 9 January

So much for the experiment!  At least it showed us what does NOT work!  This morning she is very 'spacy'  .... the big question is whether this is due to tiredness or is it due to the Risperdal?

There's a a program on ABC iView at the moment ... a valuable insight into the lives of families on the spectrum.

http://www.abc.net.au/iview/#/series/12023

It's hard for me to watch ... I can identify with the father who is clearly grieving for his child who will never be a doctor or a teacher.    At the same time I chuckle at the TV production that shows amazingly neat homes ... in real life, we are forced to put such things in the "desirable but not vital" basket.  .... and the program doesn't mention the parent being stressed out because they can't go to the toilet or have a shower without being worried about what their child is doing.
One of the heavy costs of having a child on the spectrum is the almost total lack of  "me time" ... we snatch at moments as they are offered ... and then realise that we have forgotten how to make use of those moments.

This afternoon AJ took Kaylia to the water fountain in Forrest Place ..... it was a HUGE hit! Kaylia was ecstatic.

#799 Tuesday 8 January

Last night was really bad again.  She took the nagging to new heights!  Naomi took the brunt of it with Zoe pitching in too.  I find that I can't stay awake so I had gone to bed at 9:30.  Kaylia finally wore herself out and crashed in bed at 10:30.

The doctor has suggested a variation to the medication .... it will be wonderful if it works!

10pm
Well ... the new strategy to give her a feeling of control over events has worked quite well .... the nagging is greatly reduced.   But the change in medication doesn't seem to have worked .... she is still going 'gang-busters' at this time of night!   We're all sitting round - each with our own PC .... and Kaylia is having a great time in her room .... once again she's doing stuff with her clothes.  I've just heard her putting things in the washing machine!  One day soon  she's going to start pressing buttons trying to make the machine work.   She's a smart cookie.  Now there's an idea ..... I suppose we can train her to do the washing!

(She finally hit the sack soon after 11pm)

#798 Monday 7 January

It seems as though the effect of 'no Risperdal' has been creeping up on us ..... last night was a doozy. She just didn't want to sleep and even after she was asleep she was still demanding "car .... downstairs ..... ". We have decided that she must go back onto Risperdal today. This is about a week or two earlier than we had planned ..... but we can't take it any longer.

The experiment has been successful in that we can see that she loses weight quickly when she comes off the drug .... and that she retains the learning and behaviour gains made.

Evening:
At 9:30 she's in full high pressure nag mode. We've run out of strategies and ideas. It's going to be another torrid night.
The horrible thing is that ... as bad as it is for us, it's worse for her .... None of this anxiety type behaviour is anything that she wants .... she is driven by this horrible affliction.

#797 Sunday 6 January

We started the day (after a good night!) with a plan to go to the 'yake' to meet friends for brunch ...... but it rained ..... and rained. After a swim in the rain .... all the while watching the people who had the shelters to see if they left .... we packed up and went home to BBQ there instead. Zoe went for humungous long swims out into the lake .... I was glad that Kaylia was underwater and didn't see ... because I'm quite sure that Kaylia would have swum after Zoe had she seen her!

After brunch Kaylia was dead set on more swimming ... so Naomi did the right thing while I crashed for my afternoon siesta.