I sometimes wonder whether I'm not making the whole "poor us" scenario up ..... is it really that bad? Don't all parents have the same experience?
Then I listen to a friend arranging for baby sitting for the kids (similar age to Kaylia) and the whole process is so much simpler, the kids are so much more independent and capable ..... the freedom that the parent of an NT child has is huge in comparison.
So .... I think "No I'm not exaggerating .... Life is pretty tough for us.". After six years of constant ASD induced stress, we're probably doing pretty well! Our strategy (of gathering extra adults into our family) is working for us .... It's helping us to stay sane!
Saturday, June 23, 2012
Friday, June 22, 2012
#620 Friday 22 June
6:30am .... It's been a good night ... No wet bed ... No running up and down. At 9pm last night she was still in hyper-bunny mode so I tried a dose of "Painstop" (which has a mild sedative) to get her to wind down ..... thankfully it worked.
Today, I will be interviewed to get my statement for the inquiry into abuse at the boys hostel in Northam. My experience wasn't as bad as others that are being reported but it was bad enough to scar me for life. I still deal with the effect of that time ... and it was 47 years ago!
Last night I added another ticket to Bali .... AJ will now be coming with us in September! It will be a good time with AJ, Zoe, Kaylia, Naomi and myself all in residence!
Today, I will be interviewed to get my statement for the inquiry into abuse at the boys hostel in Northam. My experience wasn't as bad as others that are being reported but it was bad enough to scar me for life. I still deal with the effect of that time ... and it was 47 years ago!
Last night I added another ticket to Bali .... AJ will now be coming with us in September! It will be a good time with AJ, Zoe, Kaylia, Naomi and myself all in residence!
Thursday, June 21, 2012
#619 Thursday 21 June
Yay!! Zoe's got her flight to Bali booked ..... she meets us there on 6 September and then comes back to Perth with us to begin her search for a teaching postion near home. Kaylia will be very excited.
From time to time, Kaylia sees photos of Zoe on the iPad and I hear her quietly saying "...Zoe, Zoe" I wish there were some way we could help her grasp the concept of Zoe returning and when. Closer to the time, we will start a count down timeline .... but for now, it is too far away.
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We're sleeping better lately .... so much so that we slept through a wet bed last night .... we woke at 4am to find the bed wet and cold! Maybe the discomfort of a cold bed will get through to her .... maybe we have been too good to her when we change the sheets before they get cold!
From time to time, Kaylia sees photos of Zoe on the iPad and I hear her quietly saying "...Zoe, Zoe" I wish there were some way we could help her grasp the concept of Zoe returning and when. Closer to the time, we will start a count down timeline .... but for now, it is too far away.
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We're sleeping better lately .... so much so that we slept through a wet bed last night .... we woke at 4am to find the bed wet and cold! Maybe the discomfort of a cold bed will get through to her .... maybe we have been too good to her when we change the sheets before they get cold!
Wednesday, June 20, 2012
#618 Wednesday 20 June
Busy day ... Naomi goes to hospital short for a day procedure ... home tonight.
I've just had a frustrating time on the phone to a government respite funding agency .... I have found a source of respite care for Kaylia during the school holidays and the provider has applied for Commonwealth funding. We go right through a 45 minute interview with the commonwealth agency ..... and then they ask ".... and how much are you prepared to pay for this?" !!!!!
Sheesh! If we had the resources to pay for it we wouldn't be asking for funding .... duh!
And all this from an interviewer who clearly knew very little about autism.
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Evening
All's well with Naomi.
There's been fun and games at the villa today .... The water pump is not working .... but instead of just fixing it, the villa manager has been waiting till I approve any repairs! This after me clearly saying many times .... "Water is essential. If its broken, just fix it .... Don't wait for approval"
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On top of this I've had to move my next trip forward to 22 July to fit in with aupair changeover .... Turns a very cheap ticket into a very expensive one.
I've just had a frustrating time on the phone to a government respite funding agency .... I have found a source of respite care for Kaylia during the school holidays and the provider has applied for Commonwealth funding. We go right through a 45 minute interview with the commonwealth agency ..... and then they ask ".... and how much are you prepared to pay for this?" !!!!!
Sheesh! If we had the resources to pay for it we wouldn't be asking for funding .... duh!
And all this from an interviewer who clearly knew very little about autism.
.
Evening
All's well with Naomi.
There's been fun and games at the villa today .... The water pump is not working .... but instead of just fixing it, the villa manager has been waiting till I approve any repairs! This after me clearly saying many times .... "Water is essential. If its broken, just fix it .... Don't wait for approval"
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On top of this I've had to move my next trip forward to 22 July to fit in with aupair changeover .... Turns a very cheap ticket into a very expensive one.
Tuesday, June 19, 2012
#617 Tuesday 19 June
Government by stealth! Significant changes that affect our daily life .... decisions made without notice or discussion! How many of you knew that from July 1, we will no longer be able to get a cash claim payment from Medicare? The claim has to be paid into your bank account. This seems like a relatively small thing .... but if we cannot get a cash claim, why go into the Medicare office? ..... If people aren't going into the Medicare office, why have the office? The next step? Close the offices ..... the office isn't needed...... Exit hundreds of jobs across the country!
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.... and this does not even begin to touch on the effect that this change will have on medical service providers .... who will now be forced to upgrade the Medicare facilities in their offices to cope with the changes!
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Kaylia is in fine form tonight! She is nagging for a shower ..... nagging and nagging and nagging. She has been banned downstairs .... she comes upstairs again after a while. When she starts nagging again, we count her out .... and then it's "Downstairs!" again. Hopefully she'll get tired soon and go to bed.
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.... and this does not even begin to touch on the effect that this change will have on medical service providers .... who will now be forced to upgrade the Medicare facilities in their offices to cope with the changes!
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Kaylia is in fine form tonight! She is nagging for a shower ..... nagging and nagging and nagging. She has been banned downstairs .... she comes upstairs again after a while. When she starts nagging again, we count her out .... and then it's "Downstairs!" again. Hopefully she'll get tired soon and go to bed.
Monday, June 18, 2012
#616 Monday 18 June
Life is strange. I'm awake after the middle of the night loo run .... so I'm pondering the path that life creates for us. It's our decision whether we walk the path that opens in front of us .... or whether we refuse that path and choose the alternative that results.
Sometimes ... in the many possible paths .... we're presented with a choice which will create a radically different future. Looking back in my life I can identify critical points where this has happened for me ..... where the choice made at the time resulted in a future that went in a new direction.
At the time the path seemed straight .... yet now I look back and the path has meandered along .... changing reality as each choice is made.
Naomi and I have recently watched a TV series about alternate realities .... and how the differing realities might affect each other.
Sometimes ... in the many possible paths .... we're presented with a choice which will create a radically different future. Looking back in my life I can identify critical points where this has happened for me ..... where the choice made at the time resulted in a future that went in a new direction.
At the time the path seemed straight .... yet now I look back and the path has meandered along .... changing reality as each choice is made.
Naomi and I have recently watched a TV series about alternate realities .... and how the differing realities might affect each other.
Sunday, June 17, 2012
#615 Sunday 17 June
Movie day ..... we went to see "Brave" .... it's a good story and I enjoyed it. Kaylia wasn't interested today. It's one of her problems .... her routines dictate what she wants to do .... even if she's not interested. Today she walked round, flopped over Naomi and I used the timer to give her 3 minute intervals to concentrate on ... with two rolls of Mentos, that got us through the bulk of the movie. It's not cheap to go to the movies .... even with memberships and vouchers it still cost $33 .... It would have been $57 without! When the prime reason for going isn't interested it makes for an expensive waste of time.
We then drove round for a while .... ending up at Red Rooster to get Kaylia her "once a week treat". We were in the drive through ..... we waited ... and we waited ..... and we waited. 20 minutes till we ordered .... 35 minutes till we were able to leave! We were boxed In by cars in front and behind. It's the last time we go to the Midland Red Rooster!
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We got home to find the there's no internet. Fixed after a while .... just annoying.
Kaylia slept well last night .... all night in her own bed! Maybe we're getting somewhere!
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- Posted using BlogPress from my iPad
We then drove round for a while .... ending up at Red Rooster to get Kaylia her "once a week treat". We were in the drive through ..... we waited ... and we waited ..... and we waited. 20 minutes till we ordered .... 35 minutes till we were able to leave! We were boxed In by cars in front and behind. It's the last time we go to the Midland Red Rooster!
.
We got home to find the there's no internet. Fixed after a while .... just annoying.
Kaylia slept well last night .... all night in her own bed! Maybe we're getting somewhere!
.
- Posted using BlogPress from my iPad
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