Last night was bad! She woke at 2am and then was awake till 4:30! She wasn't very noisy for a change but she decided that for 2 hours she would slowly bang on the wall! So I didn't sleep.
Today has been hard .... it feels like I'm in a fog. Early to bed tonight.
Later: This evening we played 'Scrabble' on the bed while Kaylia crawled over us. Unfortunately at one point she moved one way and my hand moved the other ... and collided to give me the worst wrist incident yet! It was very bad and it was a while before I recovered.
Saturday, January 22, 2011
Friday, January 21, 2011
#151 Friday 21 January 2011
Hello there! Two days since the last blog entry again ..... a sign of the busy-ness of our current life. When I consider the activities we fill our day with at present, I think that much of it is to feed the voracious appetite of the therapy monster! We are filling our days with money generating activities so that we can pay for more therapy time for Kaylia .... that's the main motivator although the activities themselves are also satisfying .... despite taking all our time and energy. One day we will be able to slow down and it will be hard to adjust to that!
We had a review of Kaylia's therapy program the other day ... interesting things are planned for the coming months. One of the fascinating parts of the program is the experiment into using video on the iPad. We have a planned set of short (10 to 20 second) videos of specific parts of the therapy. These are not just of the therapy ... they're clips of various people saying or doing things which will prompt a response in Kaylia. The plan was to use them as part of the therapy program .... but they would also be available to Kaylia at all other times and we wanted to see if she then began to 'self-teach' ...... it has worked! Kaylia spends a lot of time looking through all these videos .... I may be wearing 'rosey tinted glasses' but I think we can see improvements in day to day behaviour as a result.
Or these changes could be due to the combination of therapy with the effect of having the full-time attention of an experienced Montessori teacher. I have been impressed by the Montessori approach to the learning process ... very sensible & logical. Kaylia could not survive in a Montessori school .... but the Montessori approach added to one on one therapy clearly has benefits.
Boy what a ramble this blog has been!
Later:
We have a new resident in the house! Toby the spider! He's HUGE. 11cm from toe to toe in this photo.
We quite like him ... he'll be useful to chase any mice away. I now have to be careful that he's not around when I spray the other spiders.
We had a review of Kaylia's therapy program the other day ... interesting things are planned for the coming months. One of the fascinating parts of the program is the experiment into using video on the iPad. We have a planned set of short (10 to 20 second) videos of specific parts of the therapy. These are not just of the therapy ... they're clips of various people saying or doing things which will prompt a response in Kaylia. The plan was to use them as part of the therapy program .... but they would also be available to Kaylia at all other times and we wanted to see if she then began to 'self-teach' ...... it has worked! Kaylia spends a lot of time looking through all these videos .... I may be wearing 'rosey tinted glasses' but I think we can see improvements in day to day behaviour as a result.
Or these changes could be due to the combination of therapy with the effect of having the full-time attention of an experienced Montessori teacher. I have been impressed by the Montessori approach to the learning process ... very sensible & logical. Kaylia could not survive in a Montessori school .... but the Montessori approach added to one on one therapy clearly has benefits.
Boy what a ramble this blog has been!
Later:
We have a new resident in the house! Toby the spider! He's HUGE. 11cm from toe to toe in this photo.
We quite like him ... he'll be useful to chase any mice away. I now have to be careful that he's not around when I spray the other spiders.
Thursday, January 20, 2011
#150 Wednesday 19 January 2011
Tuesday night she slept all night ...bliss. Not suprising after the almost sleepless Monday night followed by a Tuesday where she didn't nap at all. After the full night of sleep, her performance during Wednesday was top notch. She is very pleasant to have around ... very smiley and cheerfull. She can be very definite when she wants something .... but it's not done in an unpleasant way .... just definite!
Last night after tea she was playing in her room and I went to check .... she pulled me into the room, pushed me down onto her bed and then pushed my legs up onto the bed .... she wanted me lying down. The strange thing was that she then went out of her room and upstairs to our bedroom! I wonder if she was aware that I was very tired after a full day at the new office .... and she wanted me to have a rest.
The new office is very "full on" already with just two consultants working ...... when another two are there (about this time next month) it will be very stressfull for me. I've budgeted for clerical assistance and we'll have to get that in place soon. I'm getting too old for this game! I like the idea of sitting in a rocking chair dispensing advice.
- Posted by the Kaylee Blogger
Last night after tea she was playing in her room and I went to check .... she pulled me into the room, pushed me down onto her bed and then pushed my legs up onto the bed .... she wanted me lying down. The strange thing was that she then went out of her room and upstairs to our bedroom! I wonder if she was aware that I was very tired after a full day at the new office .... and she wanted me to have a rest.
The new office is very "full on" already with just two consultants working ...... when another two are there (about this time next month) it will be very stressfull for me. I've budgeted for clerical assistance and we'll have to get that in place soon. I'm getting too old for this game! I like the idea of sitting in a rocking chair dispensing advice.
- Posted by the Kaylee Blogger
Tuesday, January 18, 2011
#149 Tuesday 18 January 2011
I realised late yesterday that I had forgotten to give Kaylia her morning medications! It explained a change in her behaviour during the day .... and it goes a long way toward explaining last night!! She didn't sleep till nearly 10pm .... then woke at 12:30 and was wide awake for the rest of the night! She was quite well behaved .... just wide awake! (At one stage she had tired of mummy trying to get her to sleep and at 4am it was "Mummy ... get out!!" How's that for language development!)
During yesterday afternoon, I noted that she was playing with some very stimmy toys that she hadn't touched for about a year .... the lack of the Risperdal! It's been supressing the stimmy-ness and without the drug, the stimming returns.
Today she has not slept (suprisingly) .... but the swimming class in the morning was a disaster.
Two days to the full moon! I couldn't have picked a worse time to miss the medication.
- Posted by the Kaylee Blogger
During yesterday afternoon, I noted that she was playing with some very stimmy toys that she hadn't touched for about a year .... the lack of the Risperdal! It's been supressing the stimmy-ness and without the drug, the stimming returns.
Today she has not slept (suprisingly) .... but the swimming class in the morning was a disaster.
Two days to the full moon! I couldn't have picked a worse time to miss the medication.
- Posted by the Kaylee Blogger
Monday, January 17, 2011
#148 Monday 17 January 2011
The morning began at 4am .... Kaylia has learned to change her clothes when she wets the bed in the night ... so when she comes upstairs, she seems dry! So I send her back down saying "Wait till 6am and then come upstairs". After several tries, I go downstairs and find that her bed is sodden! No wonder she's not sleeping. So I change the sheets and then she is happy to stay down. It will be wonderful when she is able to say "The bed
is wet." Although her use of language is improving day by day, it seems that it requires conscious decision in her mind before she actually commits to saying something .... her natural action is to not use words.
I often ponder the effect of autism on the mind ... obviously it affects people differently as no two forms are exactly the same ..... but for people similar to Kaylia, the image of a glass sphere (with Kaylia inside) seems apt .... or at least it provides a way for me to understand. She is inside the ball .... she is entranced by the sounds & images that bounce around inside the ball. Sounds & images from the real world struggle to penetrate the 'ball' and when they do, they're distorted, muted .... not nearly as interesting as her own "ínside ball" sounds.
If this is the sort of experience that Kaylia can be having, what must it be like for adults who have lived their whole life with autism? ... but without any help! They have learned to cope with a strange outside world but they still struggle to deal with the distractions.
I note from my new calendar reminders that a full moon is coming on Thursday at 5:20am! Not much sleep this week!
16 days till I go to Bali! When I booked this trip, we hadn't started on the new office venture .... now that the office is up & running, I have to deal with the worry that it might fall into a mess if I'm not there! Pinch, pinch .... get real .... others will cope.
- Posted by the Kaylee Blogger
is wet." Although her use of language is improving day by day, it seems that it requires conscious decision in her mind before she actually commits to saying something .... her natural action is to not use words.
I often ponder the effect of autism on the mind ... obviously it affects people differently as no two forms are exactly the same ..... but for people similar to Kaylia, the image of a glass sphere (with Kaylia inside) seems apt .... or at least it provides a way for me to understand. She is inside the ball .... she is entranced by the sounds & images that bounce around inside the ball. Sounds & images from the real world struggle to penetrate the 'ball' and when they do, they're distorted, muted .... not nearly as interesting as her own "ínside ball" sounds.
If this is the sort of experience that Kaylia can be having, what must it be like for adults who have lived their whole life with autism? ... but without any help! They have learned to cope with a strange outside world but they still struggle to deal with the distractions.
I note from my new calendar reminders that a full moon is coming on Thursday at 5:20am! Not much sleep this week!
16 days till I go to Bali! When I booked this trip, we hadn't started on the new office venture .... now that the office is up & running, I have to deal with the worry that it might fall into a mess if I'm not there! Pinch, pinch .... get real .... others will cope.
- Posted by the Kaylee Blogger
Sunday, January 16, 2011
#147 Sunday 16 January 2011
It's been a good day. This morning we went shopping for a pot plant for the office and while installing the pot plant, Kaylia once again made her enjoyment of the new office very clear!
In the afternoon, Zoe went for a drive to the nearby camel farm (for a ride on a camel!) and Kaylia & I tagged along. On the return trip we once again tried to buy macadamias at a farm in Mundaring .... only to be told that the farm doesn't sell them as the black cockatoos eat all the nuts and leave none for sale! Those birds must have mighty tough beaks!
- Posted by the Kaylee Blogger
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