#660 Saturday 4 August

Welcome to Blog follower #16! Viorry met Kaylia at the Peek a Boo play centre in Sanur, Bali.



Viorry is a helper at  the centre and Kaylia really loved her time there.  I think Kaylia made quite an impression there.  Kaylia still talks about the place and it will be a 'Must' when we are in Bali next month.. (Notice that they have a large ball-pit?  Any ball-pit is an instant success with Kaylia.)
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Therapy today was a disappointment  .... very hard.  We  will have to think hard about what is being done and how to improve her ability to learn.  The whole therapy process is very wearing.  It's been going on for six years now and there's no end in sight. Parents of normal  children have life so easy .... the children just  absorb knowledge and conditioning without any real effort .... where we must analyse every aspect of behaviour and teach every minute part to Kaylia.
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This evening it is pink cup cakes!

Remember Naomi's superb method of handling the telemarketing phonecalls?  Well it really works!  Another one a short while ago .... same result ......  and we nearly fell over laughing.
Kaylia is in the shower again ..... fourth time today.  I don't mind because she only has a trickle of water .... and she turns it off often and spends much time dancing in the shower recess.  She loves the time in the shower.  She comes out frequently looking for reassurance that it's OK.
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A new idea! Imagine .... the phone rings.... Naomi sotto voce .... "please... If you're a telemarketer, then Ian will smash the phone again .... and I don't want to have to buy a new phone .....". and they hang up!

#659 Friday 3 August

She slept.
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We're having  an interesting time at school with medications ..... Kaylia's medication has a very real, strong effect on the school situation and the discussions are showing me that there is confusion about the task of each of the medications.  Risperdal has the task of reducing her stimming .... allowing her to focus her mind on the moment.  Without this focus, she cannot learn.  Risperdal does not make her happy or reduce anxiety .... it tries to slow down the 'bouncing ball' inside her mind.
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Lovan however aims to calm her anxiety.  When in the grip of an anxiety attack, Kaylia is unable to think at all .... it's as though she is trapped inside a ball of worry .... she tries to cope by focussing on her routines ... sets of known behaviours.  This is unpleasant for people around her and it must be horrible for her.
The Lovan breaks the worry/anxiety cycle so she relax and be her normal happy self.
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The two medications work very differently in her body .... Risperdal is a long-term drug that takes about a week to have any effect.  It also has a nasty side-effect of stimulating appetite and weight gain.   Lovan on the other hand works almost immediately .... it takes about 10 minutes for it to have an observable effect on her behaviour.  It also has no side effects within the correct dosage.  Once the correct dose is exceeded, it actually has a reverse effect .... it causes anxiety!
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Over the past 6 months we have learned to split the daily dose into smaller amounts.  Because Lovan seems to be a fast acting drug, it also loses effect quickly.  Instead of giving it to her once a day, we have learned to give smaller amounts when she is first showing signs of anxiety.  That way, the anxiety can be controlled through the day.  This has made a huge difference to our life.  When she is in the grip of an attack, we can actually help her!
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On another topic .... today I accepted a quote to sell all my tools and machinery from my shed. It's hard to do .... but it has to be done sometime .... and the money will be very welcome at present. The guys will come on Monday to empty the shed. The idea is for them to take anything of value ... and just leave stuff to take to the dump.
I feel that it's an end of that part of my life. In the foreseeable future, shed activity will be beyond my physical capacity .... so it's better to do the disposal while I am able. It's not a task that should be left for someone else.

#658 Thursday 2 August

Woo hoo!  What a night!  It's full moon tonight and we find that the couple of nights around a full moon can be very disturbed.  Last night was a good example.  She woke at 1am for a loo trip .... and then she didn't settle again till 4am.  I took her downstairs at 1:30 so Naomi could sleep ... and I didn't sleep till 5am.  Last night Kaylia also seemed quite upset .... probably the change in routine caused by Kat leaving.  The melt-down last night was the worst we've had for quite a while.  Hopefully she will settle to the new routine quickly.
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It can be very easy to just drift into la-la land and just survive ... to fail to examine just what is going on.  When this happens, we fail to understand the factors involved.
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Today I'm thinking about whether to accept a quote from a dealer to purchase all my tools and machinery.  It needs to be done at some point .... it has to be done before we move house (whenever that happens) and I haven't really had much use from all the equipment in the past few years .... Kaylia is all consuming and I rarely go into the shed these days.  The offer is fair but not brilliant.  The alternative is to wait till October/November and then hold some garage sales.  I'll probably get more $$ that way .... but the cash right now is tempting.

#657 Wednesday 1 August

Today is the last day of Kat's time with us.  On Friday she flys out to start working with Emirates as an air-hostie!  What a change it will be for her ... very different from looking after Kaylia.
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.... and then in 2 weeks - on the 16 August .... AJ will arrive to take over!  We have begun the process of preparing Kaylia for the change over.  She needs a shedule to tell her what is happening.
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After a pleasant tea time followed by the usual shower time, she has now dissolved into quite a bad melt-down .... I suspect that the midday Lovan top up has been missed. We might have to consider making the top up a standard. At present it is given on an 'as needed' basis but the anxiety attacks seem to becoming more of a problem.
She's had the top up about 15 minutes ago and she's calming down a bit now. It's not much fun for her or for us.

#656 Tuesday 31 July

A pinch and a punch ... for the last of the month!  The year is flying by.
Last night Naomi got home quite late (dratted uni!) and Kaylia was bouncing round waiting for her .... as soon as Naomi was home, Kaylia settled and was soon off to sleep.  She's "Mummy's little girl"!  It is sometimes quite remarkable that she can be so lacking in social awareness at the same time as being such a little social bunny.
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Kaylia is still hanging out for the next holiday .... I think she figures that if she nags enough, it will happen sooner!  Unfortunately, it jus don't work dat way!
She seems to understand "five weeks" though .... it's just that an hour later, she has forgotten that she has five weeks to wait and she again wants "holiday".... NOW!
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Kaylia has a fixation on ABBA music when in the car.  A year ago it was the Wiggles and ABC Nursery rhymes .... now its ABBA!  She likes to sit in the front seat of the car and control the iPod that plays on the car stereo .... she is very good at navigating through all the music but she only has a few songs that she really likes.  She keeps going back and playing them over and over ... and she sings along with them.  She doesn't quite get the words right but it sounds good.
The strange thing is that she only wants to listen to music when in the car.  She seems to link music or videos or YouTube to particular situations .... they must be played in the correct place.  The big "A"!
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Evening
Naomi has a new tactic for dealing with the all too frequent telemarketing callers ........ One rang a short while ago and I heard her saying ".... You want to talk to him? You're sure? And you're not a telemarketer? He will slam the phone down if you're a telemarketer!". She hands the phone to me ...... and there's no one there! It took me a while to stop laughing!

#655 Monday 30 July

I was explaining the 'au-pair system' to a friend today .... and explaining how important it is to us. Having an au-pair living with us has made a world of difference to us .... dealing with the constant stress and pressure of a special needs child - combined with managing two businesses plus Naomi's study .... it would have been impossible without the help of the au-pairs.    I "take my hat off" to you all!
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#654 Sunday 29 July

Back home and I've missed a day already!  Sorry.  It's a comment on the day that was yesterday.  Naomi was away all day at a study course .... and at the start of the day, Kaylia showed very clearly that she wanted Daddy ... so Kat had a day off.  It was a good day but as usual, Kaylia dominates the day and I don't get much done.  I was also half asleep - I'd got home from the airport at 2:30am.
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Today began with a visit to Woodbridge Park .... cut short after 20 minutes when she decided that she wanted to visit "Auntie Moo Moo".  Her scooter skills are improving .... she can do long 'scoots' ... 20 metres or so.... and her confidence is increasing.
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At Auntie Moo's she was happy (as always)
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These are 'play' photos using various filters on the iPhone.



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