Happy Birthday Pete! ..... and Happy Birthday to Sue too!
No call from the hospital during the night.
Kaylia has been wide awake since 3am .... she was very noisy so we took turns trying to settle her. At 4am I had had enough and roundly told her off and locked her door. No more noise ... and when I went down 2 hours later to let her out, she was sitting on the floor and she'd made her bed!
After coming out she has decided that she doesn't want to be quiet! At 6:30am she's "hefalumping" downstairs! At least it's a form of exercise for her!
I spend a lot of my waking hours pondering the ramifications of autism for an adult ..... not just at this sort of time but all through the day. So much of our life is changed by A ..... not just at our work but also in the effect that A has on family relationships .... the little things that we all do .... normally you'd get annoyed by these things ..... but when you veiw them through the A-filter you can see that the odd behaviours aren't selfishness or self-centredness .... really they are the actions of a person with a disability who is coping with situations the best way they can. We may not enjoy the effect on us .... but it helps if I can understand that it is not done with personal malice!
Saturday, February 12, 2011
Friday, February 11, 2011
#171 Friday 11 February 2011
5:00pm We've just had word from the hospital that Mum is expected to die in the next hour. It's been such a long experience that all the goodbyes have already been said .... all that remains is to put the full stop at the end of the sentence.
Thursday, February 10, 2011
#170 Thursday 10 February 2011
The hospital situation continues ...
It's very wearing on all of us but especially on Naomi. Each day brings the tension of the need to cancel appointments vs the need to keep income coming!
Of course the absence of Tina and Zoe at this time couldn't be helped .... but it could hardly be worse timing. Today as I drove away from school in the afternoon I heard a plaintive voice ... "Zoe ... Zoe". I think Kaylia will be very happy to have all her people back on Monday.
And my Bali trip is still a looming question mark.... if the funeral isn't over by Tuesday, may have to cancel the trip again!
It's very wearing on all of us but especially on Naomi. Each day brings the tension of the need to cancel appointments vs the need to keep income coming!
Of course the absence of Tina and Zoe at this time couldn't be helped .... but it could hardly be worse timing. Today as I drove away from school in the afternoon I heard a plaintive voice ... "Zoe ... Zoe". I think Kaylia will be very happy to have all her people back on Monday.
And my Bali trip is still a looming question mark.... if the funeral isn't over by Tuesday, may have to cancel the trip again!
Wednesday, February 9, 2011
#169 Wednesday 9 February 2011
Another hot day ... Darlington (fortunately) has missed any effect from the fires that have been raging to the north and south of us. It's a reminder to ensure that our fire plan is in up to date.
No large change at the hospital .... just a slow deterioration. We wait.
Kaylia seems to be enjoying being back at school ... she has slipped back into the familiar routine and she knows just what to do.
She doesn't seem to suffer much effect of her middle of the night antics .... most of it seems to happen without her fully waking .... so she just goes back to sleep - usually.
At this moment (5:30pm) she is tired of not having her favourite people gathered round her. (Remember she likes to "collect"people?) She's saying "Mummy" .. "Zoe".. "Tina" .... and I respond that Mummy's coming home .... Zoe is in Bali (she understands that) but she's coming back! .... Tina's coming back!
No large change at the hospital .... just a slow deterioration. We wait.
Kaylia seems to be enjoying being back at school ... she has slipped back into the familiar routine and she knows just what to do.
She doesn't seem to suffer much effect of her middle of the night antics .... most of it seems to happen without her fully waking .... so she just goes back to sleep - usually.
At this moment (5:30pm) she is tired of not having her favourite people gathered round her. (Remember she likes to "collect"people?) She's saying "Mummy" .. "Zoe".. "Tina" .... and I respond that Mummy's coming home .... Zoe is in Bali (she understands that) but she's coming back! .... Tina's coming back!
Tuesday, February 8, 2011
#168 Tuesday 8 February 2011
It's been 12 days since Naomi's Mum was admitted to hospital. The family is on the edge of exhaustion. There are times when Kaylia's lack of empathy is a problem .... but right now it's a blessing! She is unaware of all that is going on and her world continues to revolve to her satisfaction.
This morning Zoe left bright & early for a break with her father in KL (Malaysia) .... and as I write this at tea time I have decided that Zoe will be nailed to the floor when she gets back. Life is much easier with her around.
Things will be better next week .... Tina will be home from NZ and Zoe home from KL ...
This morning Zoe left bright & early for a break with her father in KL (Malaysia) .... and as I write this at tea time I have decided that Zoe will be nailed to the floor when she gets back. Life is much easier with her around.
Things will be better next week .... Tina will be home from NZ and Zoe home from KL ...
Monday, February 7, 2011
#167 Monday 7 February 2011
....... and we still wait. The waiting is taking a toll on Naomi and her siblings .... of course some of the heartless inane hospital actions have also been adding to the stress. These are a story in their own right but cannot be repeated in a public forum such as this blog.
Today Kaylia has been to the first day of the swimming lessons .... Tomorrow will be a test of the new regime ... Kaylia's aide time has been cut to 0.6! Tomorrow there will be no aide for her and we will find out later how she has coped with the change. It's a worry.
Today Kaylia has been to the first day of the swimming lessons .... Tomorrow will be a test of the new regime ... Kaylia's aide time has been cut to 0.6! Tomorrow there will be no aide for her and we will find out later how she has coped with the change. It's a worry.
Sunday, February 6, 2011
#166 Sunday 6 February 2011
.... and we still wait. The family is on a 24 hour roster at the bedside.
Kaylia notices the absence ... "I want Mummy." is regularly heard.
On the home front we're developing a library of "Zoe-isms" ..... such as complaints that there's only a small amount of memory left on the hard drive .... No, Zoe .... there's only a small amount of memory used ....there's plenty left! And constant reminders of how we REALLY need to go to Bali .... all of us!!
Kaylia notices the absence ... "I want Mummy." is regularly heard.
On the home front we're developing a library of "Zoe-isms" ..... such as complaints that there's only a small amount of memory left on the hard drive .... No, Zoe .... there's only a small amount of memory used ....there's plenty left! And constant reminders of how we REALLY need to go to Bali .... all of us!!
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