So far the theory has not been dis-proved! There are too many variables in the equations for me to say that it has been proved just yet .... but after 3 days on the higher dose of Lovan, she slept well again - so maybe.
Today she is on a play-date at her favourite place .... she was so happy to be there when we arrived .... when I went back 2 hours later to collect her, she tried to push me out the door! She wanted to stay! So I rearranged things so she could have more time.
This confirms something I read in a book written by an adult auty .... he said that his "stand-offish", unsociable behaviours were not because he didn't want social contact ... it was just that he didn't know how to behave. Kaylia obviously wants the social contact with her friends ... she just doesn't have the "social language" so that she can communicate in a way that we see as 'normal'.
Saturday, September 4, 2010
Thursday, September 2, 2010
Thursday 2 Sept 2010
If my theory is correct, then the effect of the increase in Lovan has not kicked in yet .... last night was the second night that she was up at 3am. She is very happy about it all and she goes down to watch a DVD .... maybe she is just a night owl!
Today I completed the process of selling some of my workshop equipment (lathe & thicknesser) and used the money to buy an iPad .... Kaylia was entranced to see the videos (that she knows from the iPod) on the iPad at about eight times the size! The whole Apple iPod/iPad scenario is excellent for Kaylia .... it gives us something that she is able to manage herself ... and it keeps her occupied for ages. .... and they are great for adults too!
Today I completed the process of selling some of my workshop equipment (lathe & thicknesser) and used the money to buy an iPad .... Kaylia was entranced to see the videos (that she knows from the iPod) on the iPad at about eight times the size! The whole Apple iPod/iPad scenario is excellent for Kaylia .... it gives us something that she is able to manage herself ... and it keeps her occupied for ages. .... and they are great for adults too!
Wednesday, September 1, 2010
Wednesday 1st September 2010
September already!
I'm pondering a theory that the nights of poor sleep are being partly caused by poor medication level ... if she wakes, her mind is whirling so much that she can't settle. For the past 10 nights, she has slept well - and stimming level has been good. Then last night, she was up at 3am ... and this is after a day where she had a toilet accident that appears to be from being lost in 'stimmy-land'. It also follows from our 'experiment' to see whether Risperdal could be removed.
We'll need to assess whether high stim level is linked to poor sleep.
Lovan has been increased to 1.75 tablets (from 1.4 tablets) to see if it has an effect. If I'm right, she will sleep better tonight.
I'm pondering a theory that the nights of poor sleep are being partly caused by poor medication level ... if she wakes, her mind is whirling so much that she can't settle. For the past 10 nights, she has slept well - and stimming level has been good. Then last night, she was up at 3am ... and this is after a day where she had a toilet accident that appears to be from being lost in 'stimmy-land'. It also follows from our 'experiment' to see whether Risperdal could be removed.
We'll need to assess whether high stim level is linked to poor sleep.
Lovan has been increased to 1.75 tablets (from 1.4 tablets) to see if it has an effect. If I'm right, she will sleep better tonight.
Monday, August 30, 2010
Monday 30th August 2010
Well ... that was fun! (NOT) .... we found out that we can't take her off the Risperdal! The Risperdal was reduced from 0.3ml to 0.2ml on Saturday and 0.1ml on Sunday. By Saturday evening she was getting worried about where her toys were being placed ... and by Sunday noon, she was in very stimmy behaviours and becoming hard to manage. So by 3pm, we stopped the experiment and topped her dose back up to 0.3ml. By bed time, she was better and this morning, she is back to the current version of normal.
This shows that Lovan and Risperdal are either :-
a) working on different problems so that the lack of either will cause a particular problem to occur .... or
b) working together so that they are needed in combination to deal with stimmy / anxiety issues.
I think it probably shows that stimming and anxiety are two separate problems.
This shows that Lovan and Risperdal are either :-
a) working on different problems so that the lack of either will cause a particular problem to occur .... or
b) working together so that they are needed in combination to deal with stimmy / anxiety issues.
I think it probably shows that stimming and anxiety are two separate problems.
Saturday, August 28, 2010
Saturday 28 August 2010
Today was Kaylee's 'day with daddy' - Naomi was working a near full day. Kaylee spent 2.5 hours in the swimming pool and was very happy! I noticed (while at the pool) a good demonstration that Kaylia is now able to think sequentially - that is she expressed a desire for "X" but worked out for herself that she would need to do "U","V", & "W" before she could get to "X" ... and she went ahead and did it without prompting.
This was a confirmation to me of something that had been said in her therapy program review (yesterday). The clinical psychologist is very happy with Kaylia's progress this year and we are seeing behaviours that show a blossoming ability to think.
You might wonder "So what ... don't all children learn to think?" ..... No .... my understanding of autism is that the child can be so wrapped up in their own world that they never notice how we adults do things .... and that is how children learn - by watching us. So for Kaylia .... if she had been left without therapy ..... she would never have watched how we 'do things' - and so she would never have learned to think.
On the medication front, we are going to try 'weaning her off' Risperdal to see if the Lovan is sufficient alone. She is on a small dose of Risperdal but it still seems to be producing an undesirable weight gain. A few days to taper off the Risperdal and we will watch for any increase in stimmy behaviours. If this increase is seen (about Monday or Tuesday), we will try a different drug to see if we can control the stimming while avoiding the weight gain.
This was a confirmation to me of something that had been said in her therapy program review (yesterday). The clinical psychologist is very happy with Kaylia's progress this year and we are seeing behaviours that show a blossoming ability to think.
You might wonder "So what ... don't all children learn to think?" ..... No .... my understanding of autism is that the child can be so wrapped up in their own world that they never notice how we adults do things .... and that is how children learn - by watching us. So for Kaylia .... if she had been left without therapy ..... she would never have watched how we 'do things' - and so she would never have learned to think.
On the medication front, we are going to try 'weaning her off' Risperdal to see if the Lovan is sufficient alone. She is on a small dose of Risperdal but it still seems to be producing an undesirable weight gain. A few days to taper off the Risperdal and we will watch for any increase in stimmy behaviours. If this increase is seen (about Monday or Tuesday), we will try a different drug to see if we can control the stimming while avoiding the weight gain.
Wednesday, August 25, 2010
Wednesday 25th August 2010
Life is back to normal and she is so happy to be back at school. Each morning she looks forward to getting there and she loves the routine. Despite the trials and tribulations of 'autiness', she is a joy to have around us. (I'm told - on good authority - that much of what we are experiencing is common to all 6 year olds .... and it does get better .... I hope they're right!)
Communication is a big hurdle for us almost every moment .... so often we wonder what it is that she is trying to say .... and we have to resort to "Show me!" so she will take us by hand to show us what she wants.
Counting backwards (10 minutes .... 9 minutes ..... and so on) is a great tool for helping her to accept a change or a finish.
Her weight is a concern .... one of the side effects of the medications is weight gain .... I have started recording her daily percentage weight gain to get a grasp of how it is going .... this has varied from 0.03% per day to 0.2% per day. When this is matched to the medcation record, a picture is developing.
(Do you like the new background? Billiard balls - one of her favourite things!)
Communication is a big hurdle for us almost every moment .... so often we wonder what it is that she is trying to say .... and we have to resort to "Show me!" so she will take us by hand to show us what she wants.
Counting backwards (10 minutes .... 9 minutes ..... and so on) is a great tool for helping her to accept a change or a finish.
Her weight is a concern .... one of the side effects of the medications is weight gain .... I have started recording her daily percentage weight gain to get a grasp of how it is going .... this has varied from 0.03% per day to 0.2% per day. When this is matched to the medcation record, a picture is developing.
(Do you like the new background? Billiard balls - one of her favourite things!)
Monday, August 23, 2010
Sunday 22nd August 2010
Bali day #9
The night was good and the last day began with the usual breakfast and then 'slee-poo-poo'. Then it was final packing and checking out from Novotel. On arrival at the airport, it finally sank in to Kaylee that we were going on the plane ..... and the response was 'car, car'! We spent the waiting time at the Prada Lounge (very good value at Rp 200k/ person .... you get comfortable quiet waiting with food & drinks on tap) . The flight home was perfect and customs in Perth was uneventful. What a change from the last trip! There were a few anxious moment when a badly behaved child behind us was making a rukus ... but she handled the stress OK and went to sleep for about an hour. The iPods have been the best! Kaylia spends ages playing her games .... she uses the calendar to practice counting! (I wish iPads didn't cost so much!)
Tina was waiting and then it was off to home. Kaylee wanted to go straight to bed!
Overall? The trip was good ... much better. Still hard work and we'll have to work on a strategy to make it feel like a 'holiday'.
We seem to have the anxiety management in control at present.
The night was good and the last day began with the usual breakfast and then 'slee-poo-poo'. Then it was final packing and checking out from Novotel. On arrival at the airport, it finally sank in to Kaylee that we were going on the plane ..... and the response was 'car, car'! We spent the waiting time at the Prada Lounge (very good value at Rp 200k/ person .... you get comfortable quiet waiting with food & drinks on tap) . The flight home was perfect and customs in Perth was uneventful. What a change from the last trip! There were a few anxious moment when a badly behaved child behind us was making a rukus ... but she handled the stress OK and went to sleep for about an hour. The iPods have been the best! Kaylia spends ages playing her games .... she uses the calendar to practice counting! (I wish iPads didn't cost so much!)
Tina was waiting and then it was off to home. Kaylee wanted to go straight to bed!
Overall? The trip was good ... much better. Still hard work and we'll have to work on a strategy to make it feel like a 'holiday'.
We seem to have the anxiety management in control at present.
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