#676 Saturday 10 August

Yesterday was busy .... Kaylia had a "bonus" therapy session and she was delighted.  After that we had a farewell tea with Brynn .... she leaves us this morning.   Sad .... So sad.....   it has been a very special time over the past few months.

I have a dream that Kaylia will start her independent travels in about 10 years time by going to Canada to stay with Brynn.   It's a goal .... a biggie but who knows!

Of course in 2024 we may be able to teleport from here to Canada instead of flying .....   (I'm told that it is sort of possible now ... they just have trouble getting the molecules to re-assemble in the right way at the destination!)

Later
Well .... she's gone.  It was very hard to drive away.

Evening 

Tonight Kaylia wanted to go to IGA .... still no jelly-cups!   While there I was looking at some evening treats ..... no need to buy dark chocolate Tim-Tams for Brynn anymore .... and when I got home I found that there are still 2 left in the freezer!  Gee this is hard.

#675 Thursday 8 August

What's normal?  Naomi, Kaylia and I are sitting up in bed at 7:30pm .... each of us on our iThingy .... while downstairs Brynn, Heather and Joanne talk and laugh ..... what gives?  

A short time ago we headed upstairs as an almost instinctive reaction to signals in Kaylia's behaviour ..... we know that if the signals are ignored, a meltdown will be not far away.  I suppose that were it not for this, we would probably be downstairs socialising too.  So I guess the answer is that we choose to be "abnormal" as a form if protective behaviour ..... I would do almost anything to avoid the melt-down.

How long will this go on?  Who knows? How long is a piece of string?

Although our behaviour habits are 'functional' and work for us, it still makes us sad.  We're invisible in our own home.

#674 Wednesday 7 August

The eagle has landed!  Heather (Brynn's mum) arrived today and is recovering from the long trip.  She almost couldn't land as the weather was so bad at the time. Since then  Kaylia has been showing off in her usual way.... she's quite a performer at times .... not intentional but it's still good.

During tea tonight she had a long giggle-attack.

#673 Tuesday 6 August

A hard work day for Naomi. At 7:40pm Naomi isn't home yet.    A hard day for me too .... but Kaylia's had a good day and that's what matters.  

#672 Monday 5 August

She was a hyper-bunny last night ..... dancing and noisy till 10pm when the battery finally went flat and she came to bed!  It messed up the toilet routine because she only had an hour till the usual 11:30 time ..... no result then .... so when I woke at 3am, I took her off for a wee at that time ... and it worked!

Afternoon
Therapy is in session (at 3:45pm)  .... she is enjoying it so much!  The delight in her voice is good to hear.

Yesterday we had a Skype call with Phoebe and Declan in Portsmouth UK.  Phoebe is interested in being Kaylia's next aupair in January 14 after Joanne moves on.  We're maybe being premature .... but membership of the Aupair World website is quite pricey so we thought we might as well use the time we'd paid for.  Phoebe sounds interested in joining  us .... and we like her .....  so we hope it all works out.  It would be an experiment as it would be the first time we've had a couple sharing our home.

7pm. Therapy was quite startling .... her expression and use of language is really coming on at a surprising pace.  She is using tone and inflexions in ways which show that she is using them properly .... not just by rote.

#671 Sunday 4 August

Each night as she settles to sleep, Kaylia wants to climb into our bed between us and have cuddle time .... it's such a good thing for her .... and so delicious for us!  When she is nearly asleep we move her back onto her own bed and tuck her in.  She sleeps soundly ..... no tossing and turning or talking in her sleep.  I think we're on a good tactic.

It's always hard to know if we're doing "the right thing" ..... things are so different for a child with autism .... her life is so different to a mainstream child .... so different to the life that had been experienced by the people who make "the rules" .... the theories put forward (about the best way to raise a child like Kaylia) are just that.... theories.  

The "proof of the pudding" for the way we're doing it .... is the happiness of the little person we have!   Now that we have been able to take away the masking effect of the anxiety attacks, we find that we have a delightfully happy child .... her happiness and contentment is so obvious.


Evening
Forgive my next bit .... I get quite chuffed by the number of people who seem to enjoy reading this blog .... 33,046 page views so far .... an average of 28 per day!  I feel humbled.

... and the spread across the world?

#670 Saturday 3 August

I'm stealing a photo from Brynn's FB .... it's such a nice photo that I want it in my blog .....

.... We only have a week of Brynn left.   I feel that it has been a very special five months ... being able to share a little bit of Brynn's life.  Thankyou Heather .... for sharing your daughter with Kaylia, Naomi and I.

.. and then I noticed this on her FB too .....

How profound!   If I were still a teacher I would frame this and hang it prominently in my classroom.

Midday
Kaylia is still out and about with Brynn. 
Naomi and I have just had a phone call from  "Human Services"  (now there's a joke!) regarding an appeal I had lodged about 18 months ago .... the appeal was against the rejection of a claim for the 09/10 Family tax benefit.  The government had changed the rules some time back so that this benefit was no longer automatically paid to families.  Prior to that point, it was just calculated and paid when the income tax return was lodged.
Somehow I missed the announcement of the news that I now had to remember to manually claim the benefit.  When I I found out about this change  I proceeded to lodge claims for the three intervening years  .... only to find that I was 5 days too late for the first year!
I had appealed this rejection on the basis that this was a major change to expect a family under stress to keep up to date with ..... but the response delivered today was that their policy does not allow any grounds for appeal!

We feel as though we have been kicked in the teeth .... once again the Australian cultural attitude that disabilities are a problem for the parents .... the community isn't going to help.