It's raining! It makes for a miserable day ... even though the water is very welcome.
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This morning Kaylia refused to sleep in .... so we miss out. The joys of 'aut'.
We've been tidying up .... started getting Zoe's room ready ... we found a suitable bed yesterday so we assembled it this morning. Then it was swimming pool time .... this didn't work well .... too many restricted areas (swimming classes etc)
Kaylia doesn't have any understanding that today she is not able to go to the section of pool that she was able to go to yesterday ..... in her world this "does not compute"! ... so she gets upset. Naomi had to cut short her swimming session today. .... so it was down to Midland Gate for shops. She has a set routine there too. We first go to Boost for a 'shake' .... then to the Red Dot store where she can buy a cheap toy ... usually a dingle-dangle ...... then we went to Big W to look for some shoes and clothes (the never ending story!).
Then it was over to the office for some 'down time'. She loves being there. 'Out of hours' time is very quiet and calm for her. ..... then we drove home for some "ABC4kids" ..... the weather means that there's no signal from the aerial ..... but I can connect the iPad to the TV and run the ABC iView app .... voila! ABC4kids!
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It's now evening ... she's been doing the blanket thing .... she 'collects us' under a blanket on the couch. She really likes the 'togetherness'.
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...... An hour later and she's in a melt down ..... she was cycling through all her routines ... many are completely ridiculous and some we can't do because of weather .... and we can't set a precedent of giving in. Her disturbance builds and builds. It's at times like these that we feel really alone .... that no one in our circle knows or understands what we go through.
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I've dosed her with everything we know works .... Now we wait it out and try to help her with calming actions ..... breathing etc. She's beginning to calm .... she's pacing the room with her dingle dangles ..... she's stopped the screaming and throwing herself around .... Phew!
Sunday, August 12, 2012
Saturday, August 11, 2012
#667 Saturday 11 August
Gee ... she's hard work this morning!
We're filling time till 'therapy' and nothing suits her. I have given up and she's in the shower. She will happily stay there for ages ..... so I can relax a bit.
While walking round the house with her, I noticed all the things that need to be done ... that I can't get more than a moment to do. I pulled out one weed!! That's progress. I looked at all the other weeds growing .....
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11:30. Therapy is going surprisingly well .....
She's made up a new song to sing while she's working ..... "ze ze ze ze Zoe ....,!". (repeat many times!)
Bloggable event! We'd just been outside for some "swing time" ...... she came back inside, pulled me through the door ..... and promptly locked Kat outside!
We're filling time till 'therapy' and nothing suits her. I have given up and she's in the shower. She will happily stay there for ages ..... so I can relax a bit.
While walking round the house with her, I noticed all the things that need to be done ... that I can't get more than a moment to do. I pulled out one weed!! That's progress. I looked at all the other weeds growing .....
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11:30. Therapy is going surprisingly well .....
She's made up a new song to sing while she's working ..... "ze ze ze ze Zoe ....,!". (repeat many times!)
Bloggable event! We'd just been outside for some "swing time" ...... she came back inside, pulled me through the door ..... and promptly locked Kat outside!
Friday, August 10, 2012
#666 Friday 10 August
"Self-centred"ness Selfishness Greed
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All these characteristics are seen as being really bad. They ARE bad! In my life 'pre-Autism' I always saw these as signs that the person was bad .... deficient .... (sinful!!).
Now? So much of these sort of behaviours can be a direct result of the faulty brain processes that autism produces in a person. Now when I encounter a person being self-centred, I run the behaviour through my "A Filter" to see whether I need to make allowance for the disability ..... or is the person un-diagnosed?
I wonder how many people in my past experience have actually been suffering from un-diagnosed disability? Nowadays we're much more conscious of disability .... but in past times, the behaviour was just assessed on scriptural guidelines. This of course opens another 'can of worms' ... how does disability fit into the biblical/Quranic worldview? Easy enough for a visible, external disability .... but what about a real disability that cannot be seen?
(BTW, it's completely by accident that this discussion occured on this particular blog number. )
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Enough philosophy for now.
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This morning Kaylia almost went back to the 'ear covering' walk .... when we walked into school she dragged me off in a different direction .... toward the rooms where she went for pre-school. "Do you remember these room?" .... "Yes" ... She spent a while looking at the room and then she was happy to go to her current classroom. There's a lot going on in her mind that we don't know about .... I wish we could communicate better.
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Afternoon. She's home early today .... quite upset at school. It sounds like a mix of several problems. She is in the shower and she just wants therapy. Kat will be here soon.
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Evening
During therapy time I found the remains of the morning dose of Lovan spread over the floor !!!! No wonder the day had gone pear-shaped!
After several car trips and a vist to Nandos she has recovered her equilibrium and hopefully she will be OK tomorrow.
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All these characteristics are seen as being really bad. They ARE bad! In my life 'pre-Autism' I always saw these as signs that the person was bad .... deficient .... (sinful!!).
Now? So much of these sort of behaviours can be a direct result of the faulty brain processes that autism produces in a person. Now when I encounter a person being self-centred, I run the behaviour through my "A Filter" to see whether I need to make allowance for the disability ..... or is the person un-diagnosed?
I wonder how many people in my past experience have actually been suffering from un-diagnosed disability? Nowadays we're much more conscious of disability .... but in past times, the behaviour was just assessed on scriptural guidelines. This of course opens another 'can of worms' ... how does disability fit into the biblical/Quranic worldview? Easy enough for a visible, external disability .... but what about a real disability that cannot be seen?
(BTW, it's completely by accident that this discussion occured on this particular blog number. )
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Enough philosophy for now.
.
This morning Kaylia almost went back to the 'ear covering' walk .... when we walked into school she dragged me off in a different direction .... toward the rooms where she went for pre-school. "Do you remember these room?" .... "Yes" ... She spent a while looking at the room and then she was happy to go to her current classroom. There's a lot going on in her mind that we don't know about .... I wish we could communicate better.
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Afternoon. She's home early today .... quite upset at school. It sounds like a mix of several problems. She is in the shower and she just wants therapy. Kat will be here soon.
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Evening
During therapy time I found the remains of the morning dose of Lovan spread over the floor !!!! No wonder the day had gone pear-shaped!
After several car trips and a vist to Nandos she has recovered her equilibrium and hopefully she will be OK tomorrow.
Thursday, August 9, 2012
#665 Thursday 9 August
The new walking behaviour contiues .... this morning she was even more independent and didn't want to hold hands! She skipped along and was very happy to be at school. She even ran around greeting people!
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This afternoon we will give the Circus Quirkus a try .... (holding breath!) We have a spare ticket since Naomi can't come ... so Aunty Maxine will come and share some Kaylia time. I'l make sure I have plenty of Lovan and Panadol and headphones .....
We'll go to the swimming pool after school ... then have Subway ... before driving into the Convention Centre in the city centre. If all goes well, we will be home around 8pm. If we have to abort, it will be much earlier!
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8:30pm. After school we went to the Waves Pool in Bayswater .... It's a magic spot and Kaylia just "zoned out".
Then we drove into the Convention Centre .....the show began at 6pm ..... but the intrepid expedition had to abort! Kaylia took one look inside the auditorium ... then turned and bolted back the way we'd come. All was not lost though and the evening turned out to be very pleasant ... there was a comfy couch next to a window overlooking Riverside Drive .... Kaylia just lay down and watched ... entranced by all the lights. Maxine and I had a good chat as well.
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Tomorrow? Therapy! Yay!
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This afternoon we will give the Circus Quirkus a try .... (holding breath!) We have a spare ticket since Naomi can't come ... so Aunty Maxine will come and share some Kaylia time. I'l make sure I have plenty of Lovan and Panadol and headphones .....
We'll go to the swimming pool after school ... then have Subway ... before driving into the Convention Centre in the city centre. If all goes well, we will be home around 8pm. If we have to abort, it will be much earlier!
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8:30pm. After school we went to the Waves Pool in Bayswater .... It's a magic spot and Kaylia just "zoned out".
Then we drove into the Convention Centre .....the show began at 6pm ..... but the intrepid expedition had to abort! Kaylia took one look inside the auditorium ... then turned and bolted back the way we'd come. All was not lost though and the evening turned out to be very pleasant ... there was a comfy couch next to a window overlooking Riverside Drive .... Kaylia just lay down and watched ... entranced by all the lights. Maxine and I had a good chat as well.
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Tomorrow? Therapy! Yay!
Wednesday, August 8, 2012
#664 Wednesday 8 August
Kaylia is still unsettled with the changes in routine. This is seen in some nagging behaviours .... she constantly wants 'swimming pool' and she goes to her drawers and brings out all her bathers! We have to 'count her down' .... she knows what it means and it's funny to see her tactics .... she thinks if she whispers, then it won't count! So she comes up to me and I hear a tiny voice .... slee-poo ..... That's ONE Kaylia!
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We were offered some free tickets to a children's circus in the Convention Centre for tomorrow night .... I accepted but then remembered the time we took her to see the Wiggles! She can't handle crowds of noisy children .... specially if there are any crying babies. There always are. I think we won't be able to go. But then .... it IS a freebie ..... (the Wiggles fiasco was $100 down the drain) ... I may give it a go .... I can always abort and go to a playground instead.
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This afternoon I struck pre-emptively! (so and so dubya). As soon as we got home it was into bathers and down to the swimming pool. Kaylia was very happy. I'd forgotten how difficult it can be to manage her at the pool. She constantly wants to go into areas which are 'out of bounds' because some group is using it. She can't understand. While there I realized that I hadn't brought any Lovan with me .... Horrors! We survived though.
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There's been an interesting change in her behaviour .... Remember how she likes to put her head under your arm as she walks beside you? .... to shield her ears. Well for the past three days she has completely stopped this! Why? Mystery. I wonder if the change will continue. I wonder if this is a new phase of independence.
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We were offered some free tickets to a children's circus in the Convention Centre for tomorrow night .... I accepted but then remembered the time we took her to see the Wiggles! She can't handle crowds of noisy children .... specially if there are any crying babies. There always are. I think we won't be able to go. But then .... it IS a freebie ..... (the Wiggles fiasco was $100 down the drain) ... I may give it a go .... I can always abort and go to a playground instead.
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This afternoon I struck pre-emptively! (so and so dubya). As soon as we got home it was into bathers and down to the swimming pool. Kaylia was very happy. I'd forgotten how difficult it can be to manage her at the pool. She constantly wants to go into areas which are 'out of bounds' because some group is using it. She can't understand. While there I realized that I hadn't brought any Lovan with me .... Horrors! We survived though.
.
There's been an interesting change in her behaviour .... Remember how she likes to put her head under your arm as she walks beside you? .... to shield her ears. Well for the past three days she has completely stopped this! Why? Mystery. I wonder if the change will continue. I wonder if this is a new phase of independence.
Tuesday, August 7, 2012
#663 Tuesday 7 August
A good day. I think she likes having me to herself after school. She was so excited when I picked her up today.
We stopped at the skate park on the way home for some scooter time......
There were some other kids the same age there .... they find it hard to understand why Kaylia ignores them when they talk to her. I don't think she is aware that they're there.
Now we're heading for Nandos for tea .... she has been asking for Nandos since 2:30!
We stopped at the skate park on the way home for some scooter time......
There were some other kids the same age there .... they find it hard to understand why Kaylia ignores them when they talk to her. I don't think she is aware that they're there.
Now we're heading for Nandos for tea .... she has been asking for Nandos since 2:30!
Monday, August 6, 2012
#662 Monday 6 August
Last night she calmed down and had a good 'play-time' with us ..... she likes us to sit on the lounge with her and we cover ourselves with a blanket .... after her unsettled evening, this is clearly calming. She slept well during the night ... better than me! She's quite a bed hog at times and likes to fling her arms wide.... so I headed downstairs at about 2am.
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This morning the guys were supposed to come to empty the shed .... it didn't happen .... maybe tomorrow. At a gut feeling level, part of me is screaming about this process .... but it has to happen. C'est la vie.
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Almost time to go to school to collect Kaylia. In the break time while we wait for AJ to arrive, I'm "IT". This means that I down tools at around 2:20pm and drive to South Ballajura .... it's a pleasurable task as Kaylia is always happy to see me .... and happy to have the munchies on the drive home. Tonight Naomi will be working late so I get to have Kaylia to myself for tea at Nandos.
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7pm
Kaylia has had a good afternoon. Happy with little nagging. When we got home she had an hour in the shower followed by a drive down to Midland for tea at Nandos. This is a "path of least resistance" .... but it keeps her calm ..... and keeps me sane.
Naomi is home now and Kaylia is in the middle of an anxiety episode. Tension is rising and we're trying to manage our way through it ..... but we're tired too ... so it's hard. Lovan to the rescue.
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The Lovan kicked in after about 20 minutes .... and saved the day as usual.
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This morning the guys were supposed to come to empty the shed .... it didn't happen .... maybe tomorrow. At a gut feeling level, part of me is screaming about this process .... but it has to happen. C'est la vie.
.
Almost time to go to school to collect Kaylia. In the break time while we wait for AJ to arrive, I'm "IT". This means that I down tools at around 2:20pm and drive to South Ballajura .... it's a pleasurable task as Kaylia is always happy to see me .... and happy to have the munchies on the drive home. Tonight Naomi will be working late so I get to have Kaylia to myself for tea at Nandos.
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7pm
Kaylia has had a good afternoon. Happy with little nagging. When we got home she had an hour in the shower followed by a drive down to Midland for tea at Nandos. This is a "path of least resistance" .... but it keeps her calm ..... and keeps me sane.
Naomi is home now and Kaylia is in the middle of an anxiety episode. Tension is rising and we're trying to manage our way through it ..... but we're tired too ... so it's hard. Lovan to the rescue.
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The Lovan kicked in after about 20 minutes .... and saved the day as usual.
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