32 days to go till school starts again
The LAST DAY of 2010 - I'll tell you about yesterday and today ... and then I'll spend a little time reviewing the highlights of 2010. A quick look at the decade just gone too!
You'll recall that the day began badly yesterday .... with K rampaging from 1:30am .... it turned out well (considering) ... she had a outing in the middle of the day and a big swim at the pool late afternoon. After tea, Naomi & Zoe went on an "Ikea Outing" (to buy stuff for the new office)! Tina was also out and at 7Pm, Kaylia was asking for Mummy! When she found out that Mummy wasn't home, she wanted 'TEEWA!!' .... when she realized that Tina wasn't home either, she stormed off to her room and put herself to bed!
After the previous night, I was exhausted too and went straight to bed as well.
Today ..... Kaylia was up at 7am ..... a 12 hour sleep! By the way, this is the third night she has slept without nappies and without any accidents! I've said before, she's a champion! Kaylia has been quite a lot better today. Although she is still showing anxiety type behaviours, she is very cheerful. It's an acceptable way to be ... it would be better if she didn't have to restlessly pace the floor and constantly want car rides ... but at least she is happy!
Today we took possession of the building from which the next stage of the business will operate. For those who don't know, the business is the 'Child Wellbeing Centre' - a psychological practice providing a range of services for children to age 16. The new stage in Midland will have other people join Naomi to work with her extending the range of services.
Today we started moving in the furniture and setting up the infrastructure so it will be ready to open in about 2 weeks time.
2010 HIGHLIGHTS
Kaylia in Year One .... for her to cope with the mainstream class!!
Therapy for Kaylia now concentrates on thinking concepts and language concepts. Real progress is being made in both areas. Kaylia has gone from being non-verbal to having a basic language ability (about 3 yo).
Team Kaylee .... out of adversity was born the concept of adult team work being essential for kaylia's future.
Bali trip in August (- we'd thought after the January trip that we couldn't travel any more)
Business expansion - Naomi's private practice has gone well and is expanding in 2011
Balcony extension - I completed the construction of a small balcony (sitting on a tree stump!)
Happy ending to the toe saga! I battled with an in-grown toenail for months and finally got it fixed.
iPads! The coming of iPads into our household has made real differences to our lives.
THE PAST DECADE? ......
Kaylia born in 2004
Moving to Darlington in 2002
Naomi moving from the Ed Dept to private practice over the past 2-3 years
Ian "retiring" and then going back to work
Kaylia diagnosed as autistic in 2006
ABA therapy for Kaylia
The entry of aupairs into our life! We have shared our home & life with nine wonderful people.
Tina (#4) staying on as "big sister" for Kaylia.
< ..... and Zoe .... sheesh! ....>
Looking ahead to 2011 ......
Kaylia in Year Two! Continue making friends.
Therapy - continue her progress.
Trips to Bali - all of us in July 2011, individual trips for Ian in February and Naomi later in the year
Business growth - consolidating in the new Midland centre.
Health - we both need to seriously engage in an exercise program and Ian needs to maintain control of the diabetes.
- Posted by the Kaylee Blogger
Friday, December 31, 2010
Thursday, December 30, 2010
#132 Thursday 30 December 2010
33 days to go
The trial of the increased Lovan yesterday was positive ... we'll use the increased dose again today. She finished the day yesterday much happier than usual. She was calmer ..... not as calm as we'd like ... but better. Perhaps the lower stress level meant that her normally sunny character could shine through.
Last night she was late to sleep .... about 9:30 again .... this could have been influenced by the Lovan at midday. Lovan usually lasts from morning to evening so a late dose would mean that she was likely to be still influenced by it when she should be settling for sleep. One would expect that Lovan would make it easier for her to sleep though ......
Then she woke at about 1:30am .... she was quiet for a while and then by around 2:30 I could hear 'the elephant' downstairs again. She kept this up the rest of the morning and by 5am, I gave up and came downstairs to keep her company .... hopefully a bit quieter. It's now 5:55am and I have just tried getting her to stop pacing back & forth .... this was greeted with "NO ha ha!". The pacing could indicate stress or it could be a stim. She seems very happy while pacing so I think that it's a stim.
Today we will try swimming again and see if she has a better reaction. Vacation swimming classes start soon and we need to have her accepting the pool again by then.
Later today I'll take the trailer and collect the first lot of furniture for the new office ... Kaylia will enjoy the ride!
Just after that the stress went through the roof .... wanting "car" at 6am! We've now calmed her and she might rest for a while.
Resilience is a big factor here .... I feel as though I have only a small amount of strength (stamina? reserves?) left to deal with it .... I think I'll try and grab "the badge" today .... but that won't help ...(yes .. I need the badge!)
Later: We found out what she was doing at 3am!!! She raided all the lollie supplies in the pantry! Half a packet of jelly beans, a box of Tic-Tacs, left over Christmas stocking .... and that's just from the evidence left lying around!! No wonder she was pacing at 5am .... she was on a serious sugar high!
Now it's 8:30 and she is wanting "Car! .... Shop!"
- Posted by the Kaylee Blogger
The trial of the increased Lovan yesterday was positive ... we'll use the increased dose again today. She finished the day yesterday much happier than usual. She was calmer ..... not as calm as we'd like ... but better. Perhaps the lower stress level meant that her normally sunny character could shine through.
Last night she was late to sleep .... about 9:30 again .... this could have been influenced by the Lovan at midday. Lovan usually lasts from morning to evening so a late dose would mean that she was likely to be still influenced by it when she should be settling for sleep. One would expect that Lovan would make it easier for her to sleep though ......
Then she woke at about 1:30am .... she was quiet for a while and then by around 2:30 I could hear 'the elephant' downstairs again. She kept this up the rest of the morning and by 5am, I gave up and came downstairs to keep her company .... hopefully a bit quieter. It's now 5:55am and I have just tried getting her to stop pacing back & forth .... this was greeted with "NO ha ha!". The pacing could indicate stress or it could be a stim. She seems very happy while pacing so I think that it's a stim.
Today we will try swimming again and see if she has a better reaction. Vacation swimming classes start soon and we need to have her accepting the pool again by then.
Later today I'll take the trailer and collect the first lot of furniture for the new office ... Kaylia will enjoy the ride!
Just after that the stress went through the roof .... wanting "car" at 6am! We've now calmed her and she might rest for a while.
Resilience is a big factor here .... I feel as though I have only a small amount of strength (stamina? reserves?) left to deal with it .... I think I'll try and grab "the badge" today .... but that won't help ...(yes .. I need the badge!)
Later: We found out what she was doing at 3am!!! She raided all the lollie supplies in the pantry! Half a packet of jelly beans, a box of Tic-Tacs, left over Christmas stocking .... and that's just from the evidence left lying around!! No wonder she was pacing at 5am .... she was on a serious sugar high!
Now it's 8:30 and she is wanting "Car! .... Shop!"
- Posted by the Kaylee Blogger
Wednesday, December 29, 2010
#131 Wednesday 29 December 2010
34 days to go [ ta-da-ti-da ..... n-o-o-o-o! ]
Red Letter Day! We signed the lease for a new business office in Midland today ..... we gained a new business associate .... we set up power, phone & internet at the new office ..... we bought quite a bit of office furniture ..... it's all happening! We will be very busy for the next few months .... making the new systems work.
Kaylia continues to be ....... unusual?? ..... We wish we knew! Things that she normally loves she is rejecting ... she went to the pool today with Naomi ... and immediately wanted to leave! At this moment she is cycling between upstairs and downstairs .... changing DVDs .... singing to herself. She is choosing a low stress environment that she can handle. If she goes outside (in the car for instance) then she has to have the headphones on. In the car she holds a blanket over her head.
Our current thinking is that the change in routine brings high stress. This seemed to start about the time that she began the change to the new classroom at school. It has continued at home. We're trying an increased dose of the Lovan. In the past, this has had an immediate effect and so we gave her an extra dose at midday .... she seems to have been better this afternoon .... fingers crossed.
Earlier today I met a fellow Year One parent at the Post Office .... we discussed the idea of Kaylia having some time with her daughter - one of K's school friends. After a few ideas, we realized that it just wouldn't work. Zoe suggested a meeting at the playground ... that might work! It's worth a try.
The 'Purple Brigade' still have the jokes ban in place .... cheesh!
- Posted by the Kaylee Blogger
Red Letter Day! We signed the lease for a new business office in Midland today ..... we gained a new business associate .... we set up power, phone & internet at the new office ..... we bought quite a bit of office furniture ..... it's all happening! We will be very busy for the next few months .... making the new systems work.
Kaylia continues to be ....... unusual?? ..... We wish we knew! Things that she normally loves she is rejecting ... she went to the pool today with Naomi ... and immediately wanted to leave! At this moment she is cycling between upstairs and downstairs .... changing DVDs .... singing to herself. She is choosing a low stress environment that she can handle. If she goes outside (in the car for instance) then she has to have the headphones on. In the car she holds a blanket over her head.
Our current thinking is that the change in routine brings high stress. This seemed to start about the time that she began the change to the new classroom at school. It has continued at home. We're trying an increased dose of the Lovan. In the past, this has had an immediate effect and so we gave her an extra dose at midday .... she seems to have been better this afternoon .... fingers crossed.
Earlier today I met a fellow Year One parent at the Post Office .... we discussed the idea of Kaylia having some time with her daughter - one of K's school friends. After a few ideas, we realized that it just wouldn't work. Zoe suggested a meeting at the playground ... that might work! It's worth a try.
The 'Purple Brigade' still have the jokes ban in place .... cheesh!
- Posted by the Kaylee Blogger
Tuesday, December 28, 2010
#130 Tuesday 28 December 2010
35 days to go ( .... and boy! ... don't we know it!)
Today I was reminded of the bad times one year ago ... when we got back from Bali reeling from the experience ..... and then we had weeks of battling the anxiety ... not having any weapons in the arsenal.
Today has been bad too ... we're not sure why. It could be that she is still feeling sick with the wog .... or she may be struggling with the routine ..... or anxiety may be out of kilter from medication variation ... or she may just be a naughty seven year old .... or it may be any mix of the above! From minute to minute, we have struggled to understand what is happening and how to handle it. There have been a couple of time-out sessions .... leaving her bedroom a disaster area! At times she has flatly refused things which normally are her favorites.
We're left doubting ourselves, doubting what we're doing ......
Of course all this takes a toll on us .... we get pretty depressed about it .... so we've put a new rule in place today. Only one of us (out of the 4 adults) is allowed to be depressed at any one time! We have a "Depressed Badge" .... which you can only wear for 2 days at a time!
In addition, a certain majority of the household is allowed to wear something purple at certain times .... and then the oppressed minority (me) is not allowed to make puns or any other jokes!!! This is discrimination of an oppressed minority I say! Not Fair!
- Posted by the Kaylee Blogger
Today I was reminded of the bad times one year ago ... when we got back from Bali reeling from the experience ..... and then we had weeks of battling the anxiety ... not having any weapons in the arsenal.
Today has been bad too ... we're not sure why. It could be that she is still feeling sick with the wog .... or she may be struggling with the routine ..... or anxiety may be out of kilter from medication variation ... or she may just be a naughty seven year old .... or it may be any mix of the above! From minute to minute, we have struggled to understand what is happening and how to handle it. There have been a couple of time-out sessions .... leaving her bedroom a disaster area! At times she has flatly refused things which normally are her favorites.
We're left doubting ourselves, doubting what we're doing ......
Of course all this takes a toll on us .... we get pretty depressed about it .... so we've put a new rule in place today. Only one of us (out of the 4 adults) is allowed to be depressed at any one time! We have a "Depressed Badge" .... which you can only wear for 2 days at a time!
In addition, a certain majority of the household is allowed to wear something purple at certain times .... and then the oppressed minority (me) is not allowed to make puns or any other jokes!!! This is discrimination of an oppressed minority I say! Not Fair!
- Posted by the Kaylee Blogger
Monday, December 27, 2010
#129 Monday 27 December 2010
36 days to go
We've had to revert to the usual 'holiday strategies' .... Kaylee doesn't cope well with an absence of routine. The school day is just about perfect for her.... she knows what is to happen each day .... she can feel that she is in control.
Holidays however ... her known routine is gone! So we try to build a new routine for her .... at school she can look at the schedule on the wall .... so we have a schedule on the wall too! We build a schedule for the current day and the next day coming. Then she can know where she is in the day.
It doesn't help that she still has a bit of the head wog. Naomi still has the wog and she is suffering.
It's midday and Kaylia has just pulled out another tooth .... one from the bottom this time! We had no idea that this tooth was loose! She just pulled it out.
Her language use was significant .... she kept saying "open, open" as she wiggled the tooth out of her mouth.
We've been for two drives this morning .... each time we had to change plans. The first trip was to go to the movies .... but there were crowds of noisy kids and she couldn't stand it. Then we tried again .... this time she didn't want to get out of the car. So Naomi went shopping while I drove laps around the shopping centre.
It's a very hot day (37 degrees at 11am) and it will be worse before the evening. Fortunately the house is cool.
- Posted by the Kaylee Blogger
We've had to revert to the usual 'holiday strategies' .... Kaylee doesn't cope well with an absence of routine. The school day is just about perfect for her.... she knows what is to happen each day .... she can feel that she is in control.
Holidays however ... her known routine is gone! So we try to build a new routine for her .... at school she can look at the schedule on the wall .... so we have a schedule on the wall too! We build a schedule for the current day and the next day coming. Then she can know where she is in the day.
It doesn't help that she still has a bit of the head wog. Naomi still has the wog and she is suffering.
It's midday and Kaylia has just pulled out another tooth .... one from the bottom this time! We had no idea that this tooth was loose! She just pulled it out.
Her language use was significant .... she kept saying "open, open" as she wiggled the tooth out of her mouth.
We've been for two drives this morning .... each time we had to change plans. The first trip was to go to the movies .... but there were crowds of noisy kids and she couldn't stand it. Then we tried again .... this time she didn't want to get out of the car. So Naomi went shopping while I drove laps around the shopping centre.
It's a very hot day (37 degrees at 11am) and it will be worse before the evening. Fortunately the house is cool.
- Posted by the Kaylee Blogger
Sunday, December 26, 2010
#128 Sunday 26 December 2010
37 to go
Boxing Day ... is that for putting stuff back in boxes? .... or for going around boxing people?
Health .... Naomi is still sick as the proverbial. My toe has just given me a r.e.a.l.l.y bad night ... an hour after going to sleep the pain woke me (about 7/8) ... painkillers ... try to sleep .. no good ... more painkillers .... sleep a little .... more painkillers. I finally slept about 3am and when I woke, the pain was gone.
Kaylia slept late .... after all the swimming and time in the sun, she was tuckered out. Today she doesn't want breakfast ... she doesn't want presents .... she just wants "CAR!!"
She is now eating popcorn! At least it's something!
Recently I discussed blogging and Pete mentioned Samuel Pepys .... not having heard of Mr Pepys I went to Google .... and I was amazed! Samuel Pepys (1633 - 1703) wrote a daily diary in great detail - what an insight into the way life was lived at the time. He would have loved the idea of a blog on the net!
Today Anni & Barbara leave us to fly back to Germany .... weather permitting! Isn't it a strange time ... floods, snowing .... I won't ask "What's next?"
Later: Zoe & I have just returned from a drive to Toodyay, Northam and then back home. On the way, we found a macadamia farm! (This is a shared passion for Zoe & I!) Unfortunately no-one was home so we couldn't buy any .... but we know where the farm is now! The round trip to Northam & back was about 2.5 hours ... Kaylia loved it.
When we go driving, we take a supply of fruit and a drink for her ... she eats the fruit, covers herself up with her favourite blanket ... and at some point she asks for the iPad and watches videos .... the traveling itself is very calming for her. A trip like that is a little slice of heaven for her.
We're pondering an idea for Kaylia's next birthday (30 January) .... what about a stretch limo! Fill it with goodies, collect some friends ..... and go for a drive!! I think she'd enjoy that!
After tea .... she ate steak for tea and afterward I noticed that she was feeling around her loose front tooth .... or should I say .... feeling where her front tooth used to be! She was saying "... meat, meat." and we take this to mean that the tooth came out when she was eating meat!
- Posted by the Kaylee Blogger
Boxing Day ... is that for putting stuff back in boxes? .... or for going around boxing people?
Health .... Naomi is still sick as the proverbial. My toe has just given me a r.e.a.l.l.y bad night ... an hour after going to sleep the pain woke me (about 7/8) ... painkillers ... try to sleep .. no good ... more painkillers .... sleep a little .... more painkillers. I finally slept about 3am and when I woke, the pain was gone.
Kaylia slept late .... after all the swimming and time in the sun, she was tuckered out. Today she doesn't want breakfast ... she doesn't want presents .... she just wants "CAR!!"
She is now eating popcorn! At least it's something!
Recently I discussed blogging and Pete mentioned Samuel Pepys .... not having heard of Mr Pepys I went to Google .... and I was amazed! Samuel Pepys (1633 - 1703) wrote a daily diary in great detail - what an insight into the way life was lived at the time. He would have loved the idea of a blog on the net!
Today Anni & Barbara leave us to fly back to Germany .... weather permitting! Isn't it a strange time ... floods, snowing .... I won't ask "What's next?"
Later: Zoe & I have just returned from a drive to Toodyay, Northam and then back home. On the way, we found a macadamia farm! (This is a shared passion for Zoe & I!) Unfortunately no-one was home so we couldn't buy any .... but we know where the farm is now! The round trip to Northam & back was about 2.5 hours ... Kaylia loved it.
When we go driving, we take a supply of fruit and a drink for her ... she eats the fruit, covers herself up with her favourite blanket ... and at some point she asks for the iPad and watches videos .... the traveling itself is very calming for her. A trip like that is a little slice of heaven for her.
We're pondering an idea for Kaylia's next birthday (30 January) .... what about a stretch limo! Fill it with goodies, collect some friends ..... and go for a drive!! I think she'd enjoy that!
After tea .... she ate steak for tea and afterward I noticed that she was feeling around her loose front tooth .... or should I say .... feeling where her front tooth used to be! She was saying "... meat, meat." and we take this to mean that the tooth came out when she was eating meat!
- Posted by the Kaylee Blogger
Saturday, December 25, 2010
#127 Saturday 25 December 2010
38 days to go
Christmas Day ..... best wishes to you all!
The day started early (as usual) and by 7am, Kaylia was downstairs on her HUGE ball ... its a blow up plastic ball about 150cm in diameter ... she can climb on top and look through it (it's transparent) while I bounce her up & down .... she loves it.
Today we'll have lunch with the Ward family .... because of Kaylia's autism, we can't join my family - there will be three young children and Kaylia is extremely sensitive to the sound of small children ..... she would immediately be stressed out badly if we took her there. We have learnt that we shouldn't even attempt such a thing.
I'm sitting at Mundaring Weir as I write ... taking the others on a 'tour' ..... but K wouldn't get out of the car so I write while the other walk over the weir. Soon we'll complete the driving tour and K will be happy again.
Later: We're now at Dean's place for Christmas lunch. It's quite hot and it's good that he has a pool. Too hot for outside eating .... stay in the air conditioned area!
Naomi has not recovered from "the wog" that K so kindly passed on. Naomi is finding it hard to cope with all the Christmas events .... so its no wonder that Kaylia has had a tough time in the past week
- Posted by the Kaylee Blogger
Christmas Day ..... best wishes to you all!
The day started early (as usual) and by 7am, Kaylia was downstairs on her HUGE ball ... its a blow up plastic ball about 150cm in diameter ... she can climb on top and look through it (it's transparent) while I bounce her up & down .... she loves it.
Today we'll have lunch with the Ward family .... because of Kaylia's autism, we can't join my family - there will be three young children and Kaylia is extremely sensitive to the sound of small children ..... she would immediately be stressed out badly if we took her there. We have learnt that we shouldn't even attempt such a thing.
I'm sitting at Mundaring Weir as I write ... taking the others on a 'tour' ..... but K wouldn't get out of the car so I write while the other walk over the weir. Soon we'll complete the driving tour and K will be happy again.
Later: We're now at Dean's place for Christmas lunch. It's quite hot and it's good that he has a pool. Too hot for outside eating .... stay in the air conditioned area!
Naomi has not recovered from "the wog" that K so kindly passed on. Naomi is finding it hard to cope with all the Christmas events .... so its no wonder that Kaylia has had a tough time in the past week
- Posted by the Kaylee Blogger
Friday, December 24, 2010
#126 Friday 24 December 2010
39 days to go
Christmas Eve
GOOD MORNING ALL .... sorry for shouting! (Sl'mat pagi to you Pete!)
The day feels like Bali ..... hot & humid.
The sore toe is much better today. Kaylee seems happy .... lots of woggi-mewon for breakfast.
The schedule for today? Not much! Naomi is sick with a wog that Kaylee has probably had for the past few days ..... maybe thats why she's been grotty! Once again ... if only she could tell us how she is feeling.
Later
Its 8pm and Christmas Eve has been very special ..... with friends, food, presents ..... Kaylia has really understood that it is a special night .... when it was time for presents, she stayed in her room till it was time ... and then she gave out the presents. What a special time! What a long way she has come in the past twelve months.....
Tina prepared a s.l.l...o....o....w. meal ..... cooked on the table .... followed by present exchange ..... this is a Christmas that we will remember for a long time. Thank you Tina, Zoe, Anni, Barbara and Anita.
I'm now sitting outside while Kaylee has some spa time .... she calls it "Little spa" ... as distinct from the "Big Spa" at Kym's. Kaylee will sleep well tonight ... its been a big day for her.
- Posted by the Kaylee Blogger
Christmas Eve
GOOD MORNING ALL .... sorry for shouting! (Sl'mat pagi to you Pete!)
The day feels like Bali ..... hot & humid.
The sore toe is much better today. Kaylee seems happy .... lots of woggi-mewon for breakfast.
The schedule for today? Not much! Naomi is sick with a wog that Kaylee has probably had for the past few days ..... maybe thats why she's been grotty! Once again ... if only she could tell us how she is feeling.
Later
Its 8pm and Christmas Eve has been very special ..... with friends, food, presents ..... Kaylia has really understood that it is a special night .... when it was time for presents, she stayed in her room till it was time ... and then she gave out the presents. What a special time! What a long way she has come in the past twelve months.....
Tina prepared a s.l.l...o....o....w. meal ..... cooked on the table .... followed by present exchange ..... this is a Christmas that we will remember for a long time. Thank you Tina, Zoe, Anni, Barbara and Anita.
I'm now sitting outside while Kaylee has some spa time .... she calls it "Little spa" ... as distinct from the "Big Spa" at Kym's. Kaylee will sleep well tonight ... its been a big day for her.
- Posted by the Kaylee Blogger
Thursday, December 23, 2010
#125 Thursday 23 December 2010
40 days to go
Today will be busy!
Anni & Barbara will arrive at some point - though we don't know when! I have an appointment at midday for the doctor to look at my toe .... I need to talk to the city council about business planning ...... there are final Christmas gifts to find ...... and through all of this we have to manage Kaylia's current high anxiety .....
We have to put first priority on Kaylee and everything else must fall into place around her ..... if Kaylia gets out of control, it becomes much, much harder to get anything else done.
Yesterday was a good Kaylee day ... although tired, she stayed on top till tea time ... then she lost it. We could see that she was very tired again ..... but she wouldn't let go and sleep!
Check out this video on YouTube: Autism Every Day - 7 minute version
http://www.youtube.com/watch?v=FDMMwG7RrFQ&feature=youtube_gdata_player
This shows what it's like to be a parent of a child who has autism ..... much of it is very real for Naomi & I ..... my impression is that Kaylia's autism is actually worse (than most of the children in the video) but she has made more progress in recovering ..... I feel that we're coping better than most.
Today, we were noticing how good it feels that Kaylia is actually using names when trying to get our attention.
[The blog will get lots of writing today .... I've just had the ingrown toe nail fixed ...so I have to keep my foot as high as possible ... good for writing!]
Another thing that caught our attention was that when Anni was about to go out shopping, Kaylia said "NO!" ..... this is the first time she has demonstrated awareness of someone leaving ..... normally there is no reaction at all. We had to reassure her that Anni would be coming back .... then it was OK. This is quite a significant development and we realized that there have actually been several small but significant developments in the past few weeks & months.
- Posted by the Kaylee Blogger
Wednesday, December 22, 2010
#124 Wednesday 22 December 2010
41 days to go
Well she survived .. and she survived well at that! After Monday morning (being up from 2am) she then coped with Monday (still pre full moon) .... slept right through Monday night and then during Tuesday, she slept for 3 hours during the day. So last night, she was not wanting to sleep! She was still awake at 10pm but once she finally nodded off, she was out till 7am.
I've been discussing "blogging" with a couple of people .... talking about the purpose of the blog .... or the purpose of any blog ..... it's an interesting phenomenon ... at what other point in history has there existed a 'public diary' such as a blog? In past times, when someone published their diary, it was usually years after the fact ..... but now it can be a daily story! "..... Today I did XX" It's a new form of writing ... events can be described and published moments after they happen! Amazing!
The power of the internet ..... for instance, the Wikileaks saga .... I suggest that never before has there been such a public abuse / misuse of the justice system by those in power. Sure, there probably have been worse examples behind closed doors ... but the current public actions by US, Australian, and Swedish authorities are such a blatant and public abuse of process that it leaves me deeply disturbed ..... no - not that .... deeply disappointed that the corruption in powerful places seems to really be as bad as I feared.
Excuse this diversion away from Kaylia ...
- Posted by the Kaylee Blogger
Well she survived .. and she survived well at that! After Monday morning (being up from 2am) she then coped with Monday (still pre full moon) .... slept right through Monday night and then during Tuesday, she slept for 3 hours during the day. So last night, she was not wanting to sleep! She was still awake at 10pm but once she finally nodded off, she was out till 7am.
I've been discussing "blogging" with a couple of people .... talking about the purpose of the blog .... or the purpose of any blog ..... it's an interesting phenomenon ... at what other point in history has there existed a 'public diary' such as a blog? In past times, when someone published their diary, it was usually years after the fact ..... but now it can be a daily story! "..... Today I did XX" It's a new form of writing ... events can be described and published moments after they happen! Amazing!
The power of the internet ..... for instance, the Wikileaks saga .... I suggest that never before has there been such a public abuse / misuse of the justice system by those in power. Sure, there probably have been worse examples behind closed doors ... but the current public actions by US, Australian, and Swedish authorities are such a blatant and public abuse of process that it leaves me deeply disturbed ..... no - not that .... deeply disappointed that the corruption in powerful places seems to really be as bad as I feared.
Excuse this diversion away from Kaylia ...
- Posted by the Kaylee Blogger
Tuesday, December 21, 2010
#123 Tuesday 21 December 2010
New moon
42 days to go
Actually .... its not a new moon .. its a full moon. It appears that the link is to the period immediately before the full moon. I've been back for most of this year and most of the full moon dates have been just after a period of unsettled behavior ... I would say that there's a clear link already. If I keep track of this over the next year, we should see an interesting pattern emerge.
Last night, she slept well! Poor thing .... she was worn out from the night before so no wonder she slept.
Not long now till our visitors arrive! Christmas this year will be very unusual ..... it won't have the normal emphasis on family as Kaylia's current anxiety and sound sensitivity mean that we can't go where there are young children (this rules out joining in the Croft gathering) and we have to be ready to leave a noisy situation.
I can almost hear people saying "Surely she just has to get used to it??" ..... I can understand this viewpoint but its a solution that might be OK for a neuro-typical child - not for Kaylia at this stage of her development. At present, she is not able to understand what is happening and make adjustments for it .... for her, the stress just builds and builds till she erupts in a melt-down. She doesn't like being out of control and we try to manage her environment so she can manage own her stress levels ..... she has her own strategies for this and she does it well .... but there are limits to the amount of stress she can handle. She is good at her 'down-time' strategy ...... so we try to bring her into a physical place where she can then use her own strategy.
- Posted by the Kaylee Blogger
42 days to go
Actually .... its not a new moon .. its a full moon. It appears that the link is to the period immediately before the full moon. I've been back for most of this year and most of the full moon dates have been just after a period of unsettled behavior ... I would say that there's a clear link already. If I keep track of this over the next year, we should see an interesting pattern emerge.
Last night, she slept well! Poor thing .... she was worn out from the night before so no wonder she slept.
Not long now till our visitors arrive! Christmas this year will be very unusual ..... it won't have the normal emphasis on family as Kaylia's current anxiety and sound sensitivity mean that we can't go where there are young children (this rules out joining in the Croft gathering) and we have to be ready to leave a noisy situation.
I can almost hear people saying "Surely she just has to get used to it??" ..... I can understand this viewpoint but its a solution that might be OK for a neuro-typical child - not for Kaylia at this stage of her development. At present, she is not able to understand what is happening and make adjustments for it .... for her, the stress just builds and builds till she erupts in a melt-down. She doesn't like being out of control and we try to manage her environment so she can manage own her stress levels ..... she has her own strategies for this and she does it well .... but there are limits to the amount of stress she can handle. She is good at her 'down-time' strategy ...... so we try to bring her into a physical place where she can then use her own strategy.
- Posted by the Kaylee Blogger
Monday, December 20, 2010
#122 Monday 20 December 2010
SHD 4/47
a.a.r..rg.g.h.h!!! It's 5:30am at she's been running round downstairs for 3 hours! .... and the full moon isn't till tomorrow!!
Tea time: The day has gone surprisingly well. Although very tired, Kaylia has coped with challenging situations (crowds at the shopping centre) and finally performed well at her therapy session.
People have commented on the link between behaviour and the moon phases .... yes ... the link is very real. There are many people ... children and adults ... whose behaviour can be directly linked to the phase of the moon. We can see it very clearly with Kaylia .... nearly every month, her anxiety, sleep and general rattiness is affected. In the past we have remarked on the behaviour ... then noticed the moon! I plan to mark the new moon on the journal .... so we can adopt some pre-emptive strategies before the moon hits us!
- Posted by the Kaylee Blogger
a.a.r..rg.g.h.h!!! It's 5:30am at she's been running round downstairs for 3 hours! .... and the full moon isn't till tomorrow!!
Tea time: The day has gone surprisingly well. Although very tired, Kaylia has coped with challenging situations (crowds at the shopping centre) and finally performed well at her therapy session.
People have commented on the link between behaviour and the moon phases .... yes ... the link is very real. There are many people ... children and adults ... whose behaviour can be directly linked to the phase of the moon. We can see it very clearly with Kaylia .... nearly every month, her anxiety, sleep and general rattiness is affected. In the past we have remarked on the behaviour ... then noticed the moon! I plan to mark the new moon on the journal .... so we can adopt some pre-emptive strategies before the moon hits us!
- Posted by the Kaylee Blogger
Sunday, December 19, 2010
#121 Sunday 19 December 2010
Good start to the day ... rearranging all her DVDs to downstairs .... by 10:30 we all went for a drive (to look at a possible office building for the business expansion). Kaylia was happy to go for a drive while this was going on. After this we went home, then drove down to Stana & Dennis' place .... this was a disaster as Kaylia went into a full on 'melt down' soon after arriving. Naomi tried for an hour to calm her ... without success. It was a really bad one with Kaylia right out of control. We gave up and went home.
Driving home calmed her and she went into ''down-time" as soon as we got home. The rest of the day was fair to muddling ... she was anxious again by tea-time .... due mainly to hunger. Food in = anxiety gone! I wish it were always so simple!!!
Moon phase project is going well - it will be good to watch.
- Posted by the Kaylee Blogger
Driving home calmed her and she went into ''down-time" as soon as we got home. The rest of the day was fair to muddling ... she was anxious again by tea-time .... due mainly to hunger. Food in = anxiety gone! I wish it were always so simple!!!
Moon phase project is going well - it will be good to watch.
- Posted by the Kaylee Blogger
Saturday, December 18, 2010
#120 Saturday 18 December 2010
SHD 2/47 The day started at 7am with "... kool..."(school) and by 8am it was the usual negotiating tactic - 'car ..... playground ...... shop .... car!' (Such finesse at an early age!) We struck on a good diversion .... play shop! This she enjoyed and it kept her occupied for till it was time to get ready for swimming class.
Unfortunately, the swimming class was messed up by the anxiety and had to be aborted. Then it was the hot bubbly bath (wonderful thing!) ..... after that we tried shopping. The crowds were horrible so that turned into Kaylia staying in the car with Zoe while I did a 'power-shop' at Bunnings and at Officeworks. The Christmas shopping crowds are really bad but you can't explain that to a highly anxious Kaylia!
Nando's was a sort of bribe .... but we all enjoyed it so ... hey!
Kaylee's anxiety is really making life hard at present. I'm so glad we didn't persist with trying to look after K without an aupair. I think I'd be going around the twist (even more!) if it weren't for the help brought by an extra pair of hands. I realized that this (help that an extra 'presence' gives) is just what people find hard to understand ..... the extra person doesn't have to be specially skilled ..... or able to take over ..... just having a sympathetic friend sharing the hard times is great. Just for them to be there is so good. And not understanding this is probably why people don't feel that they can help ... or that they have anything to offer.
Later: The day recovered! From about 2pm, she made "downtime" for herself by shutting herself in our bedroom (where she sings and rolls around on the bed.) She eventually emerged as her usual enjoyable self. She OK for the rest of the day. Plans are now in place to better manage her transition anxiety.
Naomi pointed out the a new moon is coming and this will be influencing her anxiety behaviors. Task: check back for the dates of previous moon phases and match these to the sleep data. There should be a clear correlation.
- Posted by the Kaylee Blogger
Friday, December 17, 2010
#120 Friday 17 December 2010
SHD1/47
Its now 3:45pm at we've just started therapy. The afternoon has been bad with Kaylia in very high anxiety mode. When I got home from work at midday Kaylia had been very anxious all day ... this shows as wanting 'car' .... 'shop' ..... 'slee-poo-poo' .... 'spa' ..... the litany is repeated constantly and only driving in the car can be counted on as a reliable calming tactic. After trying to calm her for an hour without success, I decided to try a top up dose of the medications. An extra dose (20mg) of Lovan didn't have any immediate effect ..... 25mg extra of Risperdal with Painstop too ...she began to calm down. By 3:30pm she was calm enough that she could start therapy.
Later: Therapy went well and she was fine.
After tea, Naomi was to take Zoe shopping in the city ... so it was a good excuse to allow Kaylia another car drive. By mid-drive, she was pretty 'dopey' and she was ready to crash by the time we got home.
Looking back over the past few days, maybe the behaviour we saw today was what school had been coping with recently. Maybe it is time for an overall increase in medication.
Tomorrow I will try an increase in the Lovan and Risperdal.
- Posted by the Kaylee Blogger
Its now 3:45pm at we've just started therapy. The afternoon has been bad with Kaylia in very high anxiety mode. When I got home from work at midday Kaylia had been very anxious all day ... this shows as wanting 'car' .... 'shop' ..... 'slee-poo-poo' .... 'spa' ..... the litany is repeated constantly and only driving in the car can be counted on as a reliable calming tactic. After trying to calm her for an hour without success, I decided to try a top up dose of the medications. An extra dose (20mg) of Lovan didn't have any immediate effect ..... 25mg extra of Risperdal with Painstop too ...she began to calm down. By 3:30pm she was calm enough that she could start therapy.
Later: Therapy went well and she was fine.
After tea, Naomi was to take Zoe shopping in the city ... so it was a good excuse to allow Kaylia another car drive. By mid-drive, she was pretty 'dopey' and she was ready to crash by the time we got home.
Looking back over the past few days, maybe the behaviour we saw today was what school had been coping with recently. Maybe it is time for an overall increase in medication.
Tomorrow I will try an increase in the Lovan and Risperdal.
- Posted by the Kaylee Blogger
Thursday, December 16, 2010
#119 Thursday 16 December 2010
The Saga of the Morning!! For the past two nights, we've been trying Kaylia without 'Painstop' (a sedative) at night .... this morning she was up at 4:30am .... at 6:30am I heard sounds downstairs and went to investigate .... she'd got a new litre bottle of lemonade from the pantry, taken the lid off (no mean feat!) and emptied it into her drink bottle .... finished the lot! Then she proceeded to get the jar of jelly-beans (rewards) down from the shelf ..... and polished them off too!!!
At 8:00am she is rapidly pacing the room on a serious sugar rush! Just as well that its the last day of school!
By the way .... all households without school age children .... have you forgotten the disruption to life that the dreaded school holidays bring? ..... and now we're faced with 6 or 7 weeks of it! Ah ..... woe is us!
- Posted by the Kaylee Blogger
At 8:00am she is rapidly pacing the room on a serious sugar rush! Just as well that its the last day of school!
By the way .... all households without school age children .... have you forgotten the disruption to life that the dreaded school holidays bring? ..... and now we're faced with 6 or 7 weeks of it! Ah ..... woe is us!
- Posted by the Kaylee Blogger
Wednesday, December 15, 2010
#118 Wednesday 15 December 2010
Amazing ... we're actually getting used to sleeping all night again! What a difference it makes. Kaylia has been sleeping well for about a week now. We actually have to wake her up in the morning! (Touch wood!!)
She is still having mysterious anxiety attacks at school .... thrashing around and scratching herself ... I went to school yesterday to try and observe - to try and work out why ... by the time I got to school it was all over and she was working in 'happy mode'! (This means singing to herself as she works.)
Today she has a large bruise on the top of her right foot .... what ever happened, she would hardly have noticed ... but for a normal person, it would've really hurt. Once again, it shows the need to look out for her. She just doesn't notice things that hurt.
Last night I booked some accommodation in Bali for February ..... near Ubud above a deep river gorge. Hopefully it will be one of the places that look out onto the coastal plains. Some quiet time on the balcony will be "just the ticket".
- Posted by the Kaylee Blogger
She is still having mysterious anxiety attacks at school .... thrashing around and scratching herself ... I went to school yesterday to try and observe - to try and work out why ... by the time I got to school it was all over and she was working in 'happy mode'! (This means singing to herself as she works.)
Today she has a large bruise on the top of her right foot .... what ever happened, she would hardly have noticed ... but for a normal person, it would've really hurt. Once again, it shows the need to look out for her. She just doesn't notice things that hurt.
Last night I booked some accommodation in Bali for February ..... near Ubud above a deep river gorge. Hopefully it will be one of the places that look out onto the coastal plains. Some quiet time on the balcony will be "just the ticket".
- Posted by the Kaylee Blogger
Monday, December 13, 2010
#117 Monday 13 December 2010
Our theory about Kaylia being tired yesterday was correct ...... she slept from 7pm to 7am last night.
Today Kaylia was handing out Christmas cards to her classmates .... she was rather bemused by it all. It was a case of ..... "They're giving me strange things .... I've got strange things too .... what do I do with them? What do I say?"
Therapy was really good today. She is doing interesting things .... little sideways, unexpected actions and reactions
- Posted by the Kaylee Blogger
Today Kaylia was handing out Christmas cards to her classmates .... she was rather bemused by it all. It was a case of ..... "They're giving me strange things .... I've got strange things too .... what do I do with them? What do I say?"
Therapy was really good today. She is doing interesting things .... little sideways, unexpected actions and reactions
- Posted by the Kaylee Blogger
Sunday, December 12, 2010
#116 Sunday 12 December 2010
Happy Birthday Anni!
It's Anni's birthday today ... Happy Birthday from all of us here Anni. (Kaylia, Naomi, Ian, Tina, Zoe ..... and Teddy!) Woof, woof!
I think we may have a night owl type person developing .... and since this is very much Mummy's nature, it is not surprising! Last night Kaylia was up & bouncing till 10pm and didn't sleep till 10:30! Then she was awake and running around at 5am. She hasn't been well today ... just out of sorts and very 'sound sensitive'. We think it may be just over tiredness from the end-of-term.
I've been feeling odd today too ... I think it may be from too much Vit-D. I had increased the dose today because I've been having an increase in the muscle aches & pains .... so I tested a theory that more Vit-D may be needed ..... sho nuff, it did the trick for the pains .... but I have some strange nerve sensations which may be from too much Vit-D. I'll split the dose into AM/PM tomorrow.
The day in general was 'tiredness' ...... Kaylia is clearly tired and lost it a couple of times. When we're tired as well, it's good that we can operate as a team (Team-Kaylee!) .... it would be much harder for one person.
At bed time she went out like the proverbial light bulb!
The "little spa" had its first use this morning ... I think Kaylee likes it. She is so 'routine bound' though .... she was wanting to follow the same routine of activities as when she is at Kym's.
- Posted by the Kaylee Blogger
It's Anni's birthday today ... Happy Birthday from all of us here Anni. (Kaylia, Naomi, Ian, Tina, Zoe ..... and Teddy!) Woof, woof!
I think we may have a night owl type person developing .... and since this is very much Mummy's nature, it is not surprising! Last night Kaylia was up & bouncing till 10pm and didn't sleep till 10:30! Then she was awake and running around at 5am. She hasn't been well today ... just out of sorts and very 'sound sensitive'. We think it may be just over tiredness from the end-of-term.
I've been feeling odd today too ... I think it may be from too much Vit-D. I had increased the dose today because I've been having an increase in the muscle aches & pains .... so I tested a theory that more Vit-D may be needed ..... sho nuff, it did the trick for the pains .... but I have some strange nerve sensations which may be from too much Vit-D. I'll split the dose into AM/PM tomorrow.
The day in general was 'tiredness' ...... Kaylia is clearly tired and lost it a couple of times. When we're tired as well, it's good that we can operate as a team (Team-Kaylee!) .... it would be much harder for one person.
At bed time she went out like the proverbial light bulb!
The "little spa" had its first use this morning ... I think Kaylee likes it. She is so 'routine bound' though .... she was wanting to follow the same routine of activities as when she is at Kym's.
- Posted by the Kaylee Blogger
Saturday, December 11, 2010
#115 Saturday 11December 2010
First off today is swimming lesson at the slee-poo-poo .... followed by time at Kym's. The swimming seems to be going well .... she has learned how to do overarm and backstroke in basic format ..... now we must wait till she realizes that she wants to do do them well .... the aim was to give her the skills so she could join in social situations as they arise.
I was able to share a cuppa with some friends yesterday ... fellow parents of the auty ones. It was good to hear how the auty experience has affected others. The impression I came away with was of how different each of our experiences has been. The solutions that worked for others would not have worked with Kaylia.
I was able to share a cuppa with some friends yesterday ... fellow parents of the auty ones. It was good to hear how the auty experience has affected others. The impression I came away with was of how different each of our experiences has been. The solutions that worked for others would not have worked with Kaylia.
Friday, December 10, 2010
#114 Friday 10 December 2010
The new ear protection is really appreciated!
Christmas Letter 2010
As I read the newsletters from other people, the big difference I notice is "intensity" .... 2010 for us has been a year of almost overwhelming intensity. Not that this is a good thing! In many ways, I'd rather that 2010 had not happened ..... but as well as the bad times, there have been many good times. And good people too! We have shared a lot with Team Kaylee this year. Without the support of the team, I don't think we would have made it through the year ..... there have been several periods where both Naomi & I have felt as though we couldn't keep going. For me, the writing of our "Team-Kaylee" blog (www.team-kaylee.blogspot.com) has been a source of strength .... to be able to talk about all that has been happening helps to put things in perspective. And it makes us feel a little less lonely.
I must pay tribute to the wonderful people who share our home and family - Tina is with us long term .... and Zoe is Kaylia's aupair at present - Sophie and Linda earlier in the year. They share the tough times with us and their encouragement helps us along the way.
For those of you reading this Christmas newsletter who haven't been reading the blog, you'll be wondering "What's been going on???" It all seemed rosey last year! I'll try to summarize the year .... but the summary will miss out on so much .... the blog has it all!
In the 2009 newsletter, we were about to head off on a Bali holiday. The holiday turned into a torrid time .... not a holiday at all. We came home feeling that (because of Kaylia's behavior) we wouldn't be able to go on a holiday again. In hindsight, at that time, Kaylia was going into a period of big changes in emotional temperament .... her anxiety levels were zooming up but we hadn't really noticed it. We were trying to find a medication mix which would help her and from the end of 2009 through a fair bit of 2010, it has been a battle to control Kaylia's anxiety levels .... with medications and with behavior management strategies. Boy ...... we've learned a lot!
Dealing with Kaylia's autism has meant that we have been through some really tough times. The whole year has been an uphill battle which has tested our physical and emotional capacity to the limit. We can finish 2010 on a positive note though ......
- we feel as though we have regained control of the autism monster
- Kaylia has successfully coped with mainstream Year One at school and is raring to go in Year Two
- Naomi has grown her business well! She has exceeded the targets and milestones set in the business plan and we are now planning to move to the next stage of business growth.
- Ian has had a very full year with managing the day to day operations of Naomi's business .... and at the same time, managing the accounts for two other business clients.
A bright spot in shared interest for the family has been the iPods, iPhone and iPads! It's just one year since we bought the first iPod Touch ..... then we bought a second iPod Touch .... then an iPad 3G ..... then an iPhone 4 .... then another iPad for Kaylia at school! We're a six iPod/iPad family! They've become a consuming interest .... this is being written on my iPad. The iPad also has clear benefits in Kaylia's therapy and we have many videos of therapy sessions. Kaylia enjoys watching them in her quiet times and this revises the therapy work! We also now have an iPad solely for Kaylia's classroom use.
Kaylia is an avid iPad user .... it is part of her bed-time routine .... she spends time looking at her favourite photos, then goes to a selection of bed time movies (Charlie & Lola, Peppa Pig, Wiggles)
One of the reasons that I went into "iPad Land" is that it's a replacement for my workshop interests .... this lifelong interest has had to be put aside due to severe arthritic problems in my right wrist. I'm trying to find interests which are less physically demanding. The medical solution for my wrist is surgery to remove the offending bones!!! I plan to delay this as long as possible.
Well .... that's our 2010 in a nutshell ..... we hope your year has been good for you and that you have a satisfying Christmas!
Best Wishes from Ian, Naomi and Kaylia.
- Posted by the Kaylee Blogger
Christmas Letter 2010
As I read the newsletters from other people, the big difference I notice is "intensity" .... 2010 for us has been a year of almost overwhelming intensity. Not that this is a good thing! In many ways, I'd rather that 2010 had not happened ..... but as well as the bad times, there have been many good times. And good people too! We have shared a lot with Team Kaylee this year. Without the support of the team, I don't think we would have made it through the year ..... there have been several periods where both Naomi & I have felt as though we couldn't keep going. For me, the writing of our "Team-Kaylee" blog (www.team-kaylee.blogspot.com) has been a source of strength .... to be able to talk about all that has been happening helps to put things in perspective. And it makes us feel a little less lonely.
I must pay tribute to the wonderful people who share our home and family - Tina is with us long term .... and Zoe is Kaylia's aupair at present - Sophie and Linda earlier in the year. They share the tough times with us and their encouragement helps us along the way.
For those of you reading this Christmas newsletter who haven't been reading the blog, you'll be wondering "What's been going on???" It all seemed rosey last year! I'll try to summarize the year .... but the summary will miss out on so much .... the blog has it all!
In the 2009 newsletter, we were about to head off on a Bali holiday. The holiday turned into a torrid time .... not a holiday at all. We came home feeling that (because of Kaylia's behavior) we wouldn't be able to go on a holiday again. In hindsight, at that time, Kaylia was going into a period of big changes in emotional temperament .... her anxiety levels were zooming up but we hadn't really noticed it. We were trying to find a medication mix which would help her and from the end of 2009 through a fair bit of 2010, it has been a battle to control Kaylia's anxiety levels .... with medications and with behavior management strategies. Boy ...... we've learned a lot!
Dealing with Kaylia's autism has meant that we have been through some really tough times. The whole year has been an uphill battle which has tested our physical and emotional capacity to the limit. We can finish 2010 on a positive note though ......
- we feel as though we have regained control of the autism monster
- Kaylia has successfully coped with mainstream Year One at school and is raring to go in Year Two
- Naomi has grown her business well! She has exceeded the targets and milestones set in the business plan and we are now planning to move to the next stage of business growth.
- Ian has had a very full year with managing the day to day operations of Naomi's business .... and at the same time, managing the accounts for two other business clients.
A bright spot in shared interest for the family has been the iPods, iPhone and iPads! It's just one year since we bought the first iPod Touch ..... then we bought a second iPod Touch .... then an iPad 3G ..... then an iPhone 4 .... then another iPad for Kaylia at school! We're a six iPod/iPad family! They've become a consuming interest .... this is being written on my iPad. The iPad also has clear benefits in Kaylia's therapy and we have many videos of therapy sessions. Kaylia enjoys watching them in her quiet times and this revises the therapy work! We also now have an iPad solely for Kaylia's classroom use.
Kaylia is an avid iPad user .... it is part of her bed-time routine .... she spends time looking at her favourite photos, then goes to a selection of bed time movies (Charlie & Lola, Peppa Pig, Wiggles)
One of the reasons that I went into "iPad Land" is that it's a replacement for my workshop interests .... this lifelong interest has had to be put aside due to severe arthritic problems in my right wrist. I'm trying to find interests which are less physically demanding. The medical solution for my wrist is surgery to remove the offending bones!!! I plan to delay this as long as possible.
Well .... that's our 2010 in a nutshell ..... we hope your year has been good for you and that you have a satisfying Christmas!
Best Wishes from Ian, Naomi and Kaylia.
- Posted by the Kaylee Blogger
Thursday, December 9, 2010
#113 Thursday 9 December 2010
Kaylia is a champion ... she slept right through the night (or if she didn't, she was quiet!) .... and came upstairs at an appropriate time. This is right on the ideal progression .... I hope she keeps it up in the coming nights.
This morning the lawn mowing contractor was here and the noise of the blower/mower etc really bothered her. She was shielding her ears for all she was worth and even when she got to school, the slightest noise was too much for her. The ear protectors seem to be good for her at these times. I'll try and find a pair of better quality and see if it helps.
In the meantime, the family "Christmas Present" (the spa) has arrived ..... do I
assemble it before Christmas??? .... hide it????
- Posted by the Kaylee Blogger
PS Follower #11 (Copyboy) still has not presented their passport for stamping at the "Team-Kaylee Customs Entry" .... anyone who can identify this errant follower will receive a 'booby prize'!
This morning the lawn mowing contractor was here and the noise of the blower/mower etc really bothered her. She was shielding her ears for all she was worth and even when she got to school, the slightest noise was too much for her. The ear protectors seem to be good for her at these times. I'll try and find a pair of better quality and see if it helps.
In the meantime, the family "Christmas Present" (the spa) has arrived ..... do I
assemble it before Christmas??? .... hide it????- Posted by the Kaylee Blogger
PS Follower #11 (Copyboy) still has not presented their passport for stamping at the "Team-Kaylee Customs Entry" .... anyone who can identify this errant follower will receive a 'booby prize'!
Wednesday, December 8, 2010
#112 Wednesday 8 December 2010
The sleeping improved again .... she stayed in her room ..... she was awake playing but she stayed there and didn't come upstairs. Now we have to convince her that she doesn't need to wake up at 3am!
As I write the entry for our blog for today, it occurs to me that I can include the Christmas Letter in the blog! .... after all, the blog is sort of a Christmas newsletter every day. So I will email the newsletter to the people who are not following the blog as part of "Team-Kaylee" ...... and include the newsletter in the blog. If I include the blog address in the newsletter then perhaps someone reading the newsletter will know someone else who can benefit from sharing our experiences.
- Posted by the Kaylee Blogger
As I write the entry for our blog for today, it occurs to me that I can include the Christmas Letter in the blog! .... after all, the blog is sort of a Christmas newsletter every day. So I will email the newsletter to the people who are not following the blog as part of "Team-Kaylee" ...... and include the newsletter in the blog. If I include the blog address in the newsletter then perhaps someone reading the newsletter will know someone else who can benefit from sharing our experiences.
- Posted by the Kaylee Blogger
Tuesday, December 7, 2010
#111 Tuesday 7 December 2010
As we expected, Kaylia's second night on the new regime was a lot better ... she
came upstairs twice but accepted going down again.
The puzzling recent headaches issue may have been solved .... we think it's the dreaded constipation again! Once again, it would be so good if we could hold a better conversation with her ... if she could tell us what she was feeling, we would have a much better chance of finding out what was wrong!
Therapy today sounded so good! Lia started a new activity that involved Kaylia telling her what music was being played .... Kaylia really got into it and was very excited.... doing the actions and singing along. The whole therapy thing is very good for Kaylia ..... not just from the basic aim of developing her abilities ... also from the viewpoint of satisfying interaction and activity. Most activities for a child involve imagination ..... and for a little person who has no imagination, therapy gives her something other than mindless 'stimming'! She gets structured social interaction .... she gets rewarding feedback .... she gets mental stimulation (distinct from stimming).
Today I received the first Christmas newsletter .... it will be hard to know where to stop when writing ours this year!
- Posted by the Kaylee Blogger
came upstairs twice but accepted going down again.
The puzzling recent headaches issue may have been solved .... we think it's the dreaded constipation again! Once again, it would be so good if we could hold a better conversation with her ... if she could tell us what she was feeling, we would have a much better chance of finding out what was wrong!
Therapy today sounded so good! Lia started a new activity that involved Kaylia telling her what music was being played .... Kaylia really got into it and was very excited.... doing the actions and singing along. The whole therapy thing is very good for Kaylia ..... not just from the basic aim of developing her abilities ... also from the viewpoint of satisfying interaction and activity. Most activities for a child involve imagination ..... and for a little person who has no imagination, therapy gives her something other than mindless 'stimming'! She gets structured social interaction .... she gets rewarding feedback .... she gets mental stimulation (distinct from stimming).
Today I received the first Christmas newsletter .... it will be hard to know where to stop when writing ours this year!
- Posted by the Kaylee Blogger
Monday, December 6, 2010
#110 Monday 6 December 2010
She has been awake (and VERY noisy) since 2am!! We expected it when we went to bed because we'd removed the extra bed in her room .... we've been taking turns sleeping in her room for some time - as a survival method to allow us to get enough sleep. Since she was consistently sleeping through the night again, we planned a staged withdrawal ..... and last night was a big step. (It wasn't practical to cut the bed up to remove it in sections!) It was a bad night. Strangely, Kaylia never seems to suffer from her bad nights .... we do though!!
Hopefully .... now she has accepted the change in her room .... she will sleep again.
Over the past 24 hours, I feel as though we are hearing a big change in her language use and diction .... firstly the things I commented on yesterday .... then this morning she said "up stairs" ... previously it has been "...dair.."
- Posted by the Kaylee Blogger
Hopefully .... now she has accepted the change in her room .... she will sleep again.
Over the past 24 hours, I feel as though we are hearing a big change in her language use and diction .... firstly the things I commented on yesterday .... then this morning she said "up stairs" ... previously it has been "...dair.."
- Posted by the Kaylee Blogger
Sunday, December 5, 2010
#109 Sunday 5 December 2010
Yay!! She slept right through the night! What a champion!
(Unfortunately she has trained me well .... I woke at 3am and waited for Kaylia to come ... and waited ..... and waited ...... till 6am. I finally slept for an hour till she actually did come!)
In the scheme of things it was a very successful night. Definitely a "two buck" night!
I have completed the transfer of the blog record to the new journal and I can now create a PDF file of the whole blog! In the process I read most of the blog .... gee it has been a tough year! I had forgotten. Things seem cruisey now in comparison.
Today will be a Kaylee/Mummy time .... Kaylee is showing signs of missing her Mummy. Even though Naomi is only a few metres away in physical terms, Kaylee doesn't have much access time because Naomi is having to work so hard.
Later .... it has turned out to be a day of high anxiety. This shows as K wanting to do things .... car, whatever ..... this then raises our anxiety levels as well and we strive to calm K and hence ourselves. The easy answer is to blame the medication. We can't rule this out but we need to be sure that hasn't become a scapegoat which masks a different cause.
More later .... a little milestone. Tina came home and Kaylia (unprompted) said "Hi Tiwa!" I think this is the first time Kaylia has ever initiated a greeting!
Later again!! Another precious moment! In the corner of the living room is a folding table on which a musical keyboard lives ..... a short time ago, Kaylia was playing under it .... and it collapsed on her. (Not heavy enough to do any damage) Mummy was heard to exclaim "..... oh sh*&^!!... " as she rushed to assist. Seconds later a small voice says "..... oh sh*&^!!... " Entirely in context and not echolalia! Mummy has taught some bad language!
(Unfortunately she has trained me well .... I woke at 3am and waited for Kaylia to come ... and waited ..... and waited ...... till 6am. I finally slept for an hour till she actually did come!)
In the scheme of things it was a very successful night. Definitely a "two buck" night!
I have completed the transfer of the blog record to the new journal and I can now create a PDF file of the whole blog! In the process I read most of the blog .... gee it has been a tough year! I had forgotten. Things seem cruisey now in comparison.
Today will be a Kaylee/Mummy time .... Kaylee is showing signs of missing her Mummy. Even though Naomi is only a few metres away in physical terms, Kaylee doesn't have much access time because Naomi is having to work so hard.
Later .... it has turned out to be a day of high anxiety. This shows as K wanting to do things .... car, whatever ..... this then raises our anxiety levels as well and we strive to calm K and hence ourselves. The easy answer is to blame the medication. We can't rule this out but we need to be sure that hasn't become a scapegoat which masks a different cause.
More later .... a little milestone. Tina came home and Kaylia (unprompted) said "Hi Tiwa!" I think this is the first time Kaylia has ever initiated a greeting!
Later again!! Another precious moment! In the corner of the living room is a folding table on which a musical keyboard lives ..... a short time ago, Kaylia was playing under it .... and it collapsed on her. (Not heavy enough to do any damage) Mummy was heard to exclaim "..... oh sh*&^!!... " as she rushed to assist. Seconds later a small voice says "..... oh sh*&^!!... " Entirely in context and not echolalia! Mummy has taught some bad language!
Saturday, December 4, 2010
#108 Saturday 4December 2010
Nerd Stuff - Beware!!!!
Today I'm trying a new way of keeping the blog. Up to now, it started as email ... then it became the online blog that you're familiar with. With the blog, I have always been concerned that there is no simple method to backup the data contained! This is being written on a "journal" app for the iPad. The app allows the journal to be exported to PDF so I can keep backups. I'll write an entry in the journal .... then paste it into the blog. That way the blog becomes just a publication/sharing tool ... rather than the actual record.
This is being written at 8am in bed .... Kaylia went well with her sleeping last night ... she tried to come upstairs at 3am but I took her back to her room and told her to stay there till the sun came up .... and she did! She's still asleep but I''m pleased with the night.
She has swimming lesson this morning followed by "Kym time" .... she loves that! Yesterday I ordered a small spa for Christmas ... she will love that too! We're getting an inflatable spa ... firstly for the price ... 25% of the normal cost ... secondly for ease of installation. A normal spa would be very difficult to get down into our yard ... this one just comes deflated in a box ... easy!
PS: Later I found out that after I marched Kaylee downstairs at 3am, she then went into Tina's room and woke Tina! Kaylee was disgusted when Tina wouldn't cooperate ... and she the went back to bed.
- Posted by the Kaylee Blogger
Today I'm trying a new way of keeping the blog. Up to now, it started as email ... then it became the online blog that you're familiar with. With the blog, I have always been concerned that there is no simple method to backup the data contained! This is being written on a "journal" app for the iPad. The app allows the journal to be exported to PDF so I can keep backups. I'll write an entry in the journal .... then paste it into the blog. That way the blog becomes just a publication/sharing tool ... rather than the actual record.
This is being written at 8am in bed .... Kaylia went well with her sleeping last night ... she tried to come upstairs at 3am but I took her back to her room and told her to stay there till the sun came up .... and she did! She's still asleep but I''m pleased with the night.
She has swimming lesson this morning followed by "Kym time" .... she loves that! Yesterday I ordered a small spa for Christmas ... she will love that too! We're getting an inflatable spa ... firstly for the price ... 25% of the normal cost ... secondly for ease of installation. A normal spa would be very difficult to get down into our yard ... this one just comes deflated in a box ... easy!
PS: Later I found out that after I marched Kaylee downstairs at 3am, she then went into Tina's room and woke Tina! Kaylee was disgusted when Tina wouldn't cooperate ... and she the went back to bed.
- Posted by the Kaylee Blogger
Friday, December 3, 2010
#107 Friday 3 December 2010
The Advent Calendar was good.... a week in a day! (Kaylee was very quiet this evening and we finally realized that she had pulled down a number of 'presents' from the calendar and she was helping herself to the chocolate!)
We may have found the answer to the odd anxiety type behavior at school. It looks as though the headaches have returned. Today I went back to school mid-morning with some 'medicine' .... you should seen the look of relief on her face! Of course the big question is why have the headaches returned? Apart from the Ritalin being added to the mix, there hasn't been any change. Maybe the Ritalin has an interaction with the others which causes the headache?
I will now begin to carefully adjust the levels and look for a sign that points to the culprit.
- Posted by the Kaylee Blogger
We may have found the answer to the odd anxiety type behavior at school. It looks as though the headaches have returned. Today I went back to school mid-morning with some 'medicine' .... you should seen the look of relief on her face! Of course the big question is why have the headaches returned? Apart from the Ritalin being added to the mix, there hasn't been any change. Maybe the Ritalin has an interaction with the others which causes the headache?
I will now begin to carefully adjust the levels and look for a sign that points to the culprit.
- Posted by the Kaylee Blogger
Thursday, December 2, 2010
#106 Thursday 2 December 2010
Update: The toe lives ... and it didn't hurt a bit! That's 'cos there was a mix up at the doctor's and there was no appointment! Since the wait time for the next appointment is so long .... and because the pesky nail is almost through .... there's no need for a painful operation!
Frivolity aside ..... Kaylia is happy. We didn't do the bedtime routine change .... we realized that we hadn't prepared her for it. So rather than mess it up, we have delayed till tonight. We've explained to her about what is happening tonight ...... and we'll see what the night brings!
Kaylee opened the first Advent Calendar 'present' tonight .... she likes presents!
- Posted by the Kaylee Blogger
Frivolity aside ..... Kaylia is happy. We didn't do the bedtime routine change .... we realized that we hadn't prepared her for it. So rather than mess it up, we have delayed till tonight. We've explained to her about what is happening tonight ...... and we'll see what the night brings!
Kaylee opened the first Advent Calendar 'present' tonight .... she likes presents!
- Posted by the Kaylee Blogger
Wednesday, December 1, 2010
#105 Wednesday 1 December 2010
Wow, time has rushed past since the last post to the blog! Kaylee is well and happy so we are too! Zoe has put together an 'Advent Calendar' and it looks good to us .... Naomi & I haven't seen a real one before .... so we're impressed. It will be interesting to see what Kaylia makes of it as we count down the days to Christmas.
At school, Kaylia's transition (to the classroom she will be in next year) is going well ... each morning she is keen to get into the new room to start work!
The need for ear protectors has continued .... she genuinely seems to be more sensitive to sounds than normal. We can't see any simple reason for this ... so it remains a puzzle.
Tonight we are going to try getting her to sleep in her room on her own. She used to do this but hasn't been able to since late last year when the heightened anxiety struck. We have been gradually working up to it and we'll see how she goes.
I get a day of forced rest from tomorrow night .... recovering from an operation on my big toe to fix a badly in-grown nail. I have to keep my foot above my head .... So I'll be calling for my slaves!
- Posted by the Kaylee Blogger
At school, Kaylia's transition (to the classroom she will be in next year) is going well ... each morning she is keen to get into the new room to start work!
The need for ear protectors has continued .... she genuinely seems to be more sensitive to sounds than normal. We can't see any simple reason for this ... so it remains a puzzle.
Tonight we are going to try getting her to sleep in her room on her own. She used to do this but hasn't been able to since late last year when the heightened anxiety struck. We have been gradually working up to it and we'll see how she goes.
I get a day of forced rest from tomorrow night .... recovering from an operation on my big toe to fix a badly in-grown nail. I have to keep my foot above my head .... So I'll be calling for my slaves!
- Posted by the Kaylee Blogger
Sunday, November 28, 2010
#104 Sunday 28 November 2010
Today Kaylia went to the Wiggles Concert! (This is a big step for her and excuse enough for an extra blog post!)
She didn't last through the whole show ... but she lasted for an hour. As you can see in the photo, there were lots of people and the noise level was high ... so we had a set of ear protectors which she wore the whole time.
It tired her out though .... she has been a mess of anxiety this afternoon
Saturday, November 27, 2010
#103 Saturday 27 November 2010
Did you read page 27 of this morning's West Australian? It was about the use of anti-psychotic drugs in our community. The article was mainly about one person who years ago did some questionable research ... but the article also touched on the movement to control "over use" of the drugs. For the first time in my life I was moved to put pen to paper in response to such an article.
I said:
"Hi Colleen
I said:
"Hi Colleen
As a parent using several anti-psychotics (under close medical supervision) for my severely autistic six year old daughter I was very interested to read your article.
It is very easy to jump on the populist bandwagon and decry the over prescription of these drugs ...... however ....
Consider the other viewpoint.
For many children, these drugs offer their only realistic hope of gaining enough control over their behaviours that they can begin to learn and think.
The ability to think is something that most people take as a completely basic ability ... yet I have watched my daughter so lost in her self-stimulation behaviours (stimming) that thinking cannot even begin.
And I have seen the stimming brought under control by Risperdone. I have verified this by carefully regulating of the amount of Risperdone administered daily ... and I can see that drug is having the right effect for her.
I have watched helplessly as she is racked by anxiety attacks that mean that she is unable to function .... and I know that I can control the onset and severity of these attacks by use of a different drug. Just a day without it and she sinks back into huge anxiety.
The combination of several different anti-psychotics in carefully monitored amounts has meant that our daughter has successfully completed Year One in a mainstream class! And this is a girl who was non-verbal to the point where she could not even say YES or NO correctly a year ago! She can now use sentences to communicate!
The road to finding the correct drug combination is hard and it's painstaking ...... and from the outside it could well appear that drugs were being thrown at her! Over-prescription!! Horror!
The process is of finding a drug that her body will react to in the right way ... and hence many drugs have to be tried. There is no way to predict what reaction an individual person might have to a particular drug ..... so they have to be tried in minute doses till the right one is found.
Please lend your support to all the autistic children in our community. One day an answer to their nightmare will be found ... but till it is found, these drugs are our best hope. Don't let a mis-guided popular crusade destroy that hope."
Thursday, November 25, 2010
#102 Thursday 25 November 2010
The Ritalin seems to be doing the right thing at the higher dose .... Kaylia is calmer and largely free of the anxiety. She will need to be watched closely (as always!!) to see that the improvement continues.
The arrangements for next year at school are taking shape and the process of transition from Year 1 to Year 2 has begun. For Kaylia this process needs to be well managed if we are to avoid higher anxiety from the changes in her routine.
On the sleeping front, things are going well. She is now staying asleep all night most of the time. We're planning the next phase .... getting her used to sleeping alone. The strange thing about many of these issues is that she was coping OK with them a year ago .... then it all went backward!
Autism is a bugga!
The arrangements for next year at school are taking shape and the process of transition from Year 1 to Year 2 has begun. For Kaylia this process needs to be well managed if we are to avoid higher anxiety from the changes in her routine.
On the sleeping front, things are going well. She is now staying asleep all night most of the time. We're planning the next phase .... getting her used to sleeping alone. The strange thing about many of these issues is that she was coping OK with them a year ago .... then it all went backward!
Autism is a bugga!
Tuesday, November 23, 2010
#101 Tuesday 23 November 2010
The unusual swings in anxiety levels (that we experienced on the weekend) have continued and Kaylia spent half a day at home yesterday. Today, she is going to school but I'll stay home from work and be on standby to go to school if needed. She has started a higher dose of Ritalin today ..... the Ritalin may be the cause of the anxiety ..... or it may help remove it! We don't know and we'll watch closely over the next 24 hours to see which way the pendulum swings.
This uncertainty is the same as we had last year when we were trying different medications .... Risperdal was the 4th one tried. We can never rely on the medication effect being constant .... the way that the body reacts to the drugs can vary from day to day and the changes must be observed / assessed.
Later .... by the afternoon, the school had not called ... so fingers crossed - all may have gone well.
(Harry Potter tonight!!)
- Posted by the Kaylee Blogger
This uncertainty is the same as we had last year when we were trying different medications .... Risperdal was the 4th one tried. We can never rely on the medication effect being constant .... the way that the body reacts to the drugs can vary from day to day and the changes must be observed / assessed.
Later .... by the afternoon, the school had not called ... so fingers crossed - all may have gone well.
(Harry Potter tonight!!)
- Posted by the Kaylee Blogger
Sunday, November 21, 2010
#100 Sunday 21 November 2010
The blog's centenary! That's a milestone eh wot? .... and we now have 11 followers .... but number 11 is a mystery! Who is "Copyboy"?
Today .... in fact all this weekend .... has been difficult again. Kaylia has been alternating between highly anxious and normal. We don't know why and it is really adding to our stress. One minute she is fine ... then she becomes anxious ..... then she settles down. We'll need to observe and try to see just what is going on.
Life for Naomi is still highly stressful .... with Kaylia stress, business stress and family stress .... it's all very hard to handle. Not long to go the Christmas break. This year we need it! (Zoe has just been looking at the photos from our trip to Bali in December 2008) ... it would be great to be heading off to Bali again now!
In the photos, we noticed just how much Kaylia has changed in the past 2 years ... appearance, behaviour .... lots of changes!
Friday, November 19, 2010
#99 Friday 19 November 2010
Gee it was hot today! I wonder if that was a factor in Kaylia's day? I'm told that she was a bit 'flat' at school today .... I wonder if it was the heat or was it her lack of sleep? She was up at around 3am this morning .... it was elephant time at the zoo as the little feet pounded round her room! Poor Naomi! It was her turn for downstairs sleeping ....
Eating has certainly slowed .... she has gone right off food during the day .... she eats a good meal at night. The scales are not showing the desired result yet but I guess it must happen sometime.
When watching the wonderful energy of the Team-Kaylee members, I sometimes feel guilty that I'm not doing such things with Kaylia .... then I remember that Naomi & I are the marathon runners compared with the sprinters who are with us for a short while. We have had years already and we must deal with Kaylia for years to come ..... while our wonderful au-pairs are only here for a short time ... and they can afford to burn lots of energy with Kaylia.
Wednesday, November 17, 2010
#98 Wednesday 17 November 2010
Morning relaxing .... Kaylee is ready for school and she's watching 'Telly Tubbies' ... so we do too! And she flops all over us. It's a lovely time.
The anxiety has receded and Kaylia is very happy again. In hindsight, the past few days have been quite stressful for us all ..... Kaylia's anxiety makes us all anxious as we try to work out the cause and a solution.
Zoe has settled in well and she is already making a strong contribution to the team. It is fascination to watch the effect that a different approach brings ..... each of the past team members has made a contribution to Kaylia's development .... the way that everyone tackles the issues is quite different. Not right or wrong .... different. Kaylia learns something from everyone and we are so fortunate to be able to share Kaylia with you all.
Sunday, November 14, 2010
#97 Sunday 14 November 2010
Today has been interesting! It started good .... went pear-shaped .... then recovered!
Kaylia's routines have been upset over the past couple of days by several separate issues that have all combined to send her anxiety levels way too high ... she has been unable to control or recover. She started today with a visit to her favorite aunty (Maxine) but after 30 minutes she was very upset .... so it was into the car for a long drive. This calmed her ..... but when we arrived home her anxiety went very high again and she couldn't recover.
I decided that an extra dose of Lovan was warranted .... with 30 minutes she was visibly calmer .... and after an hour she was able to lie down and rest. It's a good lesson.
- Posted by the Kaylee Blogger
Kaylia's routines have been upset over the past couple of days by several separate issues that have all combined to send her anxiety levels way too high ... she has been unable to control or recover. She started today with a visit to her favorite aunty (Maxine) but after 30 minutes she was very upset .... so it was into the car for a long drive. This calmed her ..... but when we arrived home her anxiety went very high again and she couldn't recover.
I decided that an extra dose of Lovan was warranted .... with 30 minutes she was visibly calmer .... and after an hour she was able to lie down and rest. It's a good lesson.
- Posted by the Kaylee Blogger
Friday, November 12, 2010
#96 Friday 12 November 2010
It's been a big day! Zoe arrived at 7:05am .... Kaylia and Ian were there to collect her from the airport. It was too early then for school so we went home again for some K-downtime while Z unwound and found her feet. After school delivery, Z & I spent the morning in "Autism-101" ... giving Zoe a quick history of Kaylia. Fortunately Zoe has been reading this blog and so she was already halfway there. Zoe has already made contact with the school so that she can observe in the classroom.
After lunch we did a shopping trip and a bank trip .... and an introduction to the Bunnings playground! Other highlights - a traffic jam due to a rolled over truck which was blocking the major intersection.
Kaylee's highlight? In the morning she had all her front teeth .... by home time she had lost a top front tooth! The gap will be great for sucking on a straw .... and for a 21st birthday photo!
After lunch we did a shopping trip and a bank trip .... and an introduction to the Bunnings playground! Other highlights - a traffic jam due to a rolled over truck which was blocking the major intersection.
Kaylee's highlight? In the morning she had all her front teeth .... by home time she had lost a top front tooth! The gap will be great for sucking on a straw .... and for a 21st birthday photo!
Wednesday, November 10, 2010
#95 Wednesday 10 November 2010
Kaylee is watching a "Telly Tubbies" DVD at the moment ..... if you aren't familiar with that particular form of slow torture, then I'll leave you in your state of bliss.
Kaylia has become quite adept at the use of DVD players ... she finds what she wants, turns the machines on and then gets the whole shebang working .... it makes our life easy!
We're still waiting to see the hoped for Ritalin effects. Her appetite is less than before but we hope for a big appetite change so that she will become less 'chubby'.
This year has been quite a momentus period for us .... the challenge of finding a successful medication regime for Kaylia has absorbed much of our attention. Fortunately, I think we have succeeded (touch wood) .... although this is something that can change. We have to be constantly observing, comparing, discussing ... changes occur slowly much of the time and we can miss them if we're not consciously assessing on a daily basis.
In hindsight it is clear that Kaylia's success in mainstream school would not have been possible without the medication.
The 'end of year' pressure is ramping up .... we're looking forward to the Christmas break. It will be a German Christmas in our house this year .... we will have 3 Aussies and 4 Germans in the house .... so we look forward to experiencing a different style of celebration.
- Posted by the Kaylee Blogger
Kaylia has become quite adept at the use of DVD players ... she finds what she wants, turns the machines on and then gets the whole shebang working .... it makes our life easy!
We're still waiting to see the hoped for Ritalin effects. Her appetite is less than before but we hope for a big appetite change so that she will become less 'chubby'.
This year has been quite a momentus period for us .... the challenge of finding a successful medication regime for Kaylia has absorbed much of our attention. Fortunately, I think we have succeeded (touch wood) .... although this is something that can change. We have to be constantly observing, comparing, discussing ... changes occur slowly much of the time and we can miss them if we're not consciously assessing on a daily basis.
In hindsight it is clear that Kaylia's success in mainstream school would not have been possible without the medication.
The 'end of year' pressure is ramping up .... we're looking forward to the Christmas break. It will be a German Christmas in our house this year .... we will have 3 Aussies and 4 Germans in the house .... so we look forward to experiencing a different style of celebration.
- Posted by the Kaylee Blogger
Monday, November 8, 2010
#94 Monday 8 November 2010
Our little shopping expert has struck again! Yesterday Naomi took her shopping for a fix .... and K went straight for K-Mart .... straight to the swimming pools section .... and announced clearly "Buy me a swimming pool!" Wow! This comes from her visits with Kym where she loves being in the spa .... now she wants one as well! Naomi bought her a tiny blow up wading pool ($15) and K spent ages in it .... stretched out .... I'm sure she was imagining herself in a spa.
This is good! ...... imagination is a goal to be achieved (for her).
It has put the purchase of a spa on the agenda ..... water play is such a big thing for Kaylia ... and a swimming pool is not really an option ..... but maybe a spa?? (Watch this space....)
The weigh-in was disappointing - up 1.2kg .... this means that her daily weight gain % has not decreased as we had hoped.
Today she is home ... sick (I think .... ) ..... she is just wanting to sleep. I'll watch her and see what develops.
LATER:
Well she slept till midday ... then off to school. Therapy this afternoon has been great - really good results. So maybe she was just tired from yesterday?
This is good! ...... imagination is a goal to be achieved (for her).
It has put the purchase of a spa on the agenda ..... water play is such a big thing for Kaylia ... and a swimming pool is not really an option ..... but maybe a spa?? (Watch this space....)
The weigh-in was disappointing - up 1.2kg .... this means that her daily weight gain % has not decreased as we had hoped.
Today she is home ... sick (I think .... ) ..... she is just wanting to sleep. I'll watch her and see what develops.
LATER:
Well she slept till midday ... then off to school. Therapy this afternoon has been great - really good results. So maybe she was just tired from yesterday?
Saturday, November 6, 2010
#93 Saturday 6 November 2010
Welcome to follower #8 ... Jodie! (Where are you now?)
The "No ha ha" is still a feature of K-speak ...... it can be quite emphatic at times!
Articulation is a big problem and when you've learned k-speak, it's clear that she knows most of the words .... she just can't get the sounds right! We'd like to work on this but the practicalities of time and money mean that we must prioritise the problems .... and speech is close to the top but not quite there. In an ideal world, she'd be getting lots of speech therapy.
The unusual pacing continues .... it's becoming a concern.
Naomi's mum is out of ICU and the future is beginning the take shape
- Posted by the Kaylee Blogger
The "No ha ha" is still a feature of K-speak ...... it can be quite emphatic at times!
Articulation is a big problem and when you've learned k-speak, it's clear that she knows most of the words .... she just can't get the sounds right! We'd like to work on this but the practicalities of time and money mean that we must prioritise the problems .... and speech is close to the top but not quite there. In an ideal world, she'd be getting lots of speech therapy.
The unusual pacing continues .... it's becoming a concern.
Naomi's mum is out of ICU and the future is beginning the take shape
- Posted by the Kaylee Blogger
Thursday, November 4, 2010
#92 Thursday 4 November 2010
It's 7:30am .... waiting for school time and saying Hi! to you all. I often wonder how many (of the original "Team Kaylee") are still with us ... there is no way to tell if people don't become 'followers'.
Naomi's mum is still in hospital ..... for a while yet I suspect. Rehab will follow. Life is settling to new routines .... more time spent traveling - no objections from Kaylee!! It's still "car time"!
Kaylee is showing some effect from the Ritalin .... not in behaviors
.... but in reduced appetite. She is not wanting to eat as much .... this was a large part of the reason for Ritalin. Her next weigh in is next Sunday so it will be good if we can see a second reading where the weight has gone down!
- Posted by the Kaylee Blogger
Naomi's mum is still in hospital ..... for a while yet I suspect. Rehab will follow. Life is settling to new routines .... more time spent traveling - no objections from Kaylee!! It's still "car time"!
Kaylee is showing some effect from the Ritalin .... not in behaviors
.... but in reduced appetite. She is not wanting to eat as much .... this was a large part of the reason for Ritalin. Her next weigh in is next Sunday so it will be good if we can see a second reading where the weight has gone down!
- Posted by the Kaylee Blogger
Tuesday, November 2, 2010
#91 Tuesday 2 November 2010
Turmoil! Naomi's mother is in hospital after a heart attack & stroke. Obviously this causes turmoil in Naomi's family and the waves spead out to engulf us all .... I'm maintaining 'normality and routine' for Kaylia while Naomi deals with the issues.
Through all this, Kaylia is a little trouper .... of course!! .... this evening I was remembering little bits about the Kaylia we had a couple of years ago ... she has come such a long way. One day she will read this blog and she will be proud of what she has done .....
Through all this, Kaylia is a little trouper .... of course!! .... this evening I was remembering little bits about the Kaylia we had a couple of years ago ... she has come such a long way. One day she will read this blog and she will be proud of what she has done .....
Sunday, October 31, 2010
#90 Sunday 31 October 2010
Kaylia has been on the Ritalin for a week now but I can't see any clear changes that can be linked to it. She has been wanting more 'med-sin' lately (for her this means Panadol or Pain-stop. She can now tell us what is hurting.) ... this may be due to another growth spurt coming as the other medicines haven't changed and Ritalin shouldn't cause headaches. Headaches and body pains have been a common problem during her earlier growth spurts.
Kaylia had a wonderful day out yesterday with Kym & the boys ... going to the show! She came home with lots of goodies and spent ages going through them after she got home. She was very happy! Thanks Kym!
The sleep situation is getting much better but we haven't solved it yet .... last night she was awake from 2am to 6am .... and then slept till 11:30am!! At least she has learned to stay in bed when she wakes up .... before she would start galloping round the house .... elephants at 2am!!
Kaylia is getting to be very good at identifying the places that are important to her .... Subway, Nandos, playground, $2 Shop .... and so on! We drive along the road with a little voice in the back telling us just what she can see.
Two weeks till Zoe arrives and we're looking forward to her arrival. I'm showing Kaylia a photo of Zoe .... but it isn't really needed. Kaylee always accepts new people really well.
Kaylia had a wonderful day out yesterday with Kym & the boys ... going to the show! She came home with lots of goodies and spent ages going through them after she got home. She was very happy! Thanks Kym!
The sleep situation is getting much better but we haven't solved it yet .... last night she was awake from 2am to 6am .... and then slept till 11:30am!! At least she has learned to stay in bed when she wakes up .... before she would start galloping round the house .... elephants at 2am!!
Kaylia is getting to be very good at identifying the places that are important to her .... Subway, Nandos, playground, $2 Shop .... and so on! We drive along the road with a little voice in the back telling us just what she can see.
Two weeks till Zoe arrives and we're looking forward to her arrival. I'm showing Kaylia a photo of Zoe .... but it isn't really needed. Kaylee always accepts new people really well.
Saturday, October 30, 2010
#89 Saturday 30 October 2010
{The following is an email sent to a few and it was suggested that I put it on the blog}
Hi all, It's early morning and I've been cogitating the wristy future .....may I share my thoughts? The pain involved in yesterday's cortisone injection has changed my plans. After seeing the video of a SLAC operation and thinking about the results, I want to delay having the operation done as long as possible. The operation removes S & T (in the image) and then fuses C & L to the Ulnar ... the long arm bone ... it results in usable fingers but a degree of inflexibility in the wrist. According to websites etc, there is still some pain but reduced.
If I am to delay the SLAC operation, then I need the 'warning' pain that I normally have without the cortisone. Without cortisone, I can cope but it reminds me to change lifestyle, to avoid impacts, to use aids to open bottles etc .... anything which reduces the bone on bone movement I still have full flexibility and strength but with warning pain ... so I can avoid these actions ALAP [as long as possible] and still have that ability if really needed. The biggest issue is avoiding the impacts on wrist/hand ..... the ones that bring instant blinding pain. If I wear a wrist brace, then it warns me to take care and it warns other people not to touch. So the plan for now is to find the perfect wrist brace .... that I can wear all the time without restricting abilities too much.
A big part of these plans involves interests. My life pre Kaylia was in the shed .... K halted that but I thought the halt would be temporary. The SLAC wrist would have developed sooner if I were still in the shed .... Now, the future has changed and I need to find new interests. I think it will be down the technology road and this letter is an example of what can be done using an iPad .... it allows me to do stuff with minimal wrist movement as the absence of a mouse .... a nuisance .... also allows me to use just the fingers while keeping the wrist fairly immobile. [Thanks for listening to my news]
Thursday, October 28, 2010
#88 Thursday 28th October 2010
You know, one of the hardest things to deal with is 'partial communication' ..... when she has enough language to know how to express her wants .... but not enough to understand delay ... or to understand that she can't have it. During the day, we're able to use to "no nagging" concept with time out after three .... but at night when you're half asleep ( and struggling to sleep again) it is very hard to use such tools.
At that time it becomes an endurance match .... who will last longest! Resentment is hard to avoid .... it is hard to remain in 'adult dealing with child' mode. I'm writing this at 5am after being awake since 2am. K has a sore tummy with the gastro and as a result she's wide awake.
We had a survey on the Federal autism early intervention assistance program yesterday ...(we were able to use it last year to pay for much of Kaylia's therapy ..... it was interesting to fill it in and tell them that it's a great idea ... just not enough .... that despite the assistance program, we still have to re-mortgage the house to pay for therapy ...
The problem is that the monetary benefits ( of solutions applied now ) don't occur till several terms of government have passed .... there's no short term political pay off! .... and democracy doesn't work for long term gain .... as we can see with the climate inaction!
Later (evening) Today I had a cortisone injection in my wrist .... it was one of the most painful things I have ever experienced. If it doesn't do wonderful things, it will be the last time I have one! The ultrasound done (while finding where to inject) showed that my wrist is a mess .... rough spots and bone spurs abound.
- Posted by the Kaylee Blogger
At that time it becomes an endurance match .... who will last longest! Resentment is hard to avoid .... it is hard to remain in 'adult dealing with child' mode. I'm writing this at 5am after being awake since 2am. K has a sore tummy with the gastro and as a result she's wide awake.
We had a survey on the Federal autism early intervention assistance program yesterday ...(we were able to use it last year to pay for much of Kaylia's therapy ..... it was interesting to fill it in and tell them that it's a great idea ... just not enough .... that despite the assistance program, we still have to re-mortgage the house to pay for therapy ...
The problem is that the monetary benefits ( of solutions applied now ) don't occur till several terms of government have passed .... there's no short term political pay off! .... and democracy doesn't work for long term gain .... as we can see with the climate inaction!
Later (evening) Today I had a cortisone injection in my wrist .... it was one of the most painful things I have ever experienced. If it doesn't do wonderful things, it will be the last time I have one! The ultrasound done (while finding where to inject) showed that my wrist is a mess .... rough spots and bone spurs abound.
- Posted by the Kaylee Blogger
Wednesday, October 27, 2010
#87 Wednesday 27th October
Over the past few days, Kaylee has presented us with a new mystery ..... the absent appetite! At the start of last week, she reduced her food consumption. This was well before Ritalin was started ... so that is ruled out. It has reached the point that she is only eating 2 bananas during the day. She then eats some tea .... but her behavior has changed .... high anxiety etc ... and the behavior returns to normal if she eats. So my theory is that the behavior change is due to hunger pangs.
The mystery remains ... why has this happened? If she is constipated, it would explain all the symptoms plus some that we hadn't connected. (We took her to the doctor recently for suspected UTI - negative - but constipation can show the same symptoms.)
So she is now on Parachoc as well!
Unfortunately, it seems that it can take as long to correct constipation as the problem has existed .... I think she's had it for at least a month .... so she has to be treated for a month also.
Later:
Well, it ain't constipation! She came home early today with a touch of 'gastro' ...... quite happy ... but filling nappies at a great rate! Perhaps the changes in behaviour prior to today have been early signs of the tummy wog.
- Posted by the Kaylee Blogger
The mystery remains ... why has this happened? If she is constipated, it would explain all the symptoms plus some that we hadn't connected. (We took her to the doctor recently for suspected UTI - negative - but constipation can show the same symptoms.)
So she is now on Parachoc as well!
Unfortunately, it seems that it can take as long to correct constipation as the problem has existed .... I think she's had it for at least a month .... so she has to be treated for a month also.
Later:
Well, it ain't constipation! She came home early today with a touch of 'gastro' ...... quite happy ... but filling nappies at a great rate! Perhaps the changes in behaviour prior to today have been early signs of the tummy wog.
- Posted by the Kaylee Blogger
Monday, October 25, 2010
#86 Monday 25th October 2010
Kaylee seems to have 'got' the sleep thing .... last night was the 6th in a row and we're now planning on moving to the next stage. Keep you posted.
Today has been interesting / unusual ... over the past week, her apetite has decreased (she has lost some weight!) and today she had eaten nothing by end of school! The therapy session started with a highly anxious Kaylia ..... I made her a filling egg-flip milkshake and in minutes she was back to normal! It was hunger!
It's such a balancing act to manage our little girl ... interpreting behaviours and working out the whys and wherefores. If something goes wrong, it can happen quite quickly. Fortunately, when it does go wrong, if you find the right fix, then it can also be corrected fairly quickly.
Today was day 3 of Ritalin ... no effect can be seen yet. Today was also the first day of Kaylia having her own iPad at school. The plan is to ease into using it as a teaching tool. The teaching 'apps' need to have their data prepared and the teachers need to become familiar with the things that can be done with it. The iPad is really a new type of technology and it needs to be used in a completely different way.
Today has been interesting / unusual ... over the past week, her apetite has decreased (she has lost some weight!) and today she had eaten nothing by end of school! The therapy session started with a highly anxious Kaylia ..... I made her a filling egg-flip milkshake and in minutes she was back to normal! It was hunger!
It's such a balancing act to manage our little girl ... interpreting behaviours and working out the whys and wherefores. If something goes wrong, it can happen quite quickly. Fortunately, when it does go wrong, if you find the right fix, then it can also be corrected fairly quickly.
Today was day 3 of Ritalin ... no effect can be seen yet. Today was also the first day of Kaylia having her own iPad at school. The plan is to ease into using it as a teaching tool. The teaching 'apps' need to have their data prepared and the teachers need to become familiar with the things that can be done with it. The iPad is really a new type of technology and it needs to be used in a completely different way.
Saturday, October 23, 2010
#85 Saturday 23 October 2010
Hi all. Naomi has had a tiring day - 7 hours straight consulting .... that's a heavy workload! Kaylee has had a tiring day too ..... swimming classes followed by an afternoon with Kym and her family. She is very popular with Kym's 4 boys ..... they look after her really well and the social interaction (which is essential to the day) is very good for Kaylia. ..... but she is tired tonight and I hope that she sleeps through the night. Last night she woke at 3am and was then awake till 6am. She seems less affected than I (by the lack of sleep).
She has made huge progress over this year .... learning to communicate, to express herself. The instructions she uses can be hilarious at times. On her therapy drills is to instruct others on what they are to do ... she has to name the action and the object that is being referred to. Kaylia has generalised this into daily life and uses it to arrange people the way she wants them ..... "GET UP ..... walk out!" Most of the time it is completely appropriate and OK ... but occasionally it cannot be complied with and we have to try to explain to her why we can't do it that time.
Kaylia's iPad arrived yesterday and it has been set up ready for school. Already I have found some problems with one of the most useful apps .... but an email to the app writer has produced very fast response .... the changes needed will be made in a couple of months at the next update.
Later:
The child is a genius! I went upstairs to find that she has been on my main computer, found a picture of herself ... and set it as the desktop! (Naomi watched her do it) Now if she had done this on the iPad, I'd be fairly impressed ... but to do it in WinXP, I'm amazed.
- Posted by the Kaylee Blogger
She has made huge progress over this year .... learning to communicate, to express herself. The instructions she uses can be hilarious at times. On her therapy drills is to instruct others on what they are to do ... she has to name the action and the object that is being referred to. Kaylia has generalised this into daily life and uses it to arrange people the way she wants them ..... "GET UP ..... walk out!" Most of the time it is completely appropriate and OK ... but occasionally it cannot be complied with and we have to try to explain to her why we can't do it that time.
Kaylia's iPad arrived yesterday and it has been set up ready for school. Already I have found some problems with one of the most useful apps .... but an email to the app writer has produced very fast response .... the changes needed will be made in a couple of months at the next update.
Later:
The child is a genius! I went upstairs to find that she has been on my main computer, found a picture of herself ... and set it as the desktop! (Naomi watched her do it) Now if she had done this on the iPad, I'd be fairly impressed ... but to do it in WinXP, I'm amazed.
- Posted by the Kaylee Blogger
Thursday, October 21, 2010
#84 Thursday 21 October 2010
Today was the day I went to the wrist doctor .... my wrist is bad! Not the worst he's seen (he showed Naomi & I pictures of a worse one, even some video of the operation itself...blood and gore to boot). He said that my wrist is not a repair job ... just a "salvage what we can to reduce the pain" job! The plan is to try cortisone injections to see if it helps the pain ... and then plan toward an operation where he removes two of the wrist bones (which cause much of the pain) and fuse the remaining bones together so they're not rubbing. Great.
My hope is that I can delay the operation for a while (with the cortisone) and maybe some other medical miracle will come along. It still means that my workshop interests are over.
On a different note, I forgot to give Kaylee her melatonin tonight. It's 9.30pm and she is still awake. Naomi has just worked out what has been going wrong. Apparently for the last two hours, Kaylee has been going "pink iPod, black iPod, big iPod", requesting one after the other. When Naomi got fed up with giving her the iPod that she was using, Kaylee started saying "Mummy - little iPod". After two hours of this Naomi asked me if Kaylee had had her meds tonight. Guess who is in the sin bin.
My hope is that I can delay the operation for a while (with the cortisone) and maybe some other medical miracle will come along. It still means that my workshop interests are over.
On a different note, I forgot to give Kaylee her melatonin tonight. It's 9.30pm and she is still awake. Naomi has just worked out what has been going wrong. Apparently for the last two hours, Kaylee has been going "pink iPod, black iPod, big iPod", requesting one after the other. When Naomi got fed up with giving her the iPod that she was using, Kaylee started saying "Mummy - little iPod". After two hours of this Naomi asked me if Kaylee had had her meds tonight. Guess who is in the sin bin.
Wednesday, October 20, 2010
#83 Wednesday 20 October 2010
Procuring a supply of Ritalin has become a saga! Quite involved but hopefully we may get some today .... Eight days afters being prescribed. Then we wait for it to kick in so we can gauge the effect.
Sleep has been messed up by the full moon as usual ... Tuesday was bad! She seems to be getting more and more noisy. Happy noise ... But it means that no-one in the house sleeps as she sings and makes her happy noises!
A couple of people have noted that Kaylee is a bit 'spacey' for yesterday & today ..... this may be due to a small increase in the Lovan dose I started on Monday. If so, it indicates that the dose has gone too high ... tomorrow, I'll try reverting to the 50mg dose.
Still no Ritalin today!
At the recent meeting at school, it was decided that we would get an iPad for classroom use with Kaylia ... so that she can continue to use the iPad for writing practice, for phonics, for motivation .... a tax refund has come in so I'll be ordering one tonight. (Just the base model)
- Posted by the Kaylee Blogger
Sleep has been messed up by the full moon as usual ... Tuesday was bad! She seems to be getting more and more noisy. Happy noise ... But it means that no-one in the house sleeps as she sings and makes her happy noises!
A couple of people have noted that Kaylee is a bit 'spacey' for yesterday & today ..... this may be due to a small increase in the Lovan dose I started on Monday. If so, it indicates that the dose has gone too high ... tomorrow, I'll try reverting to the 50mg dose.
Still no Ritalin today!
At the recent meeting at school, it was decided that we would get an iPad for classroom use with Kaylia ... so that she can continue to use the iPad for writing practice, for phonics, for motivation .... a tax refund has come in so I'll be ordering one tonight. (Just the base model)
- Posted by the Kaylee Blogger
Sunday, October 17, 2010
#82 Sunday October 17th 2010
It's been an interesting day .... I realized this morning that we had run out of Lovan ... I'd forgotten to get a new prescription and our local chemist is not open on Sundays (I leave the script with them).... by midday we could see the altered behavior and so we called into another local chemist who does open on Sundays. After I explained the dilemma, he gave us a few tablets to keep us going till I can get a new supply tomorrow. I think I'll change chemists!
After her dose was topped up, the anxiety decreased within hours. It's a very clear effect and it confirms that we're on the right track.
Since Naomi will be away all day at uni tomorrow (on her birthday!), we decided to swap days and we had her birthday today ..... Kaylia loved it!
We have found a new aupair! Welcome to "Team-Kaylee" Zoe! (in anticipation of your arrival next month.)
It's 6:00pm and Kaylia is in her nightie already. She has made this part of her routine .... she gets dressed for bed and then has downtime with DVDs & iPods & stimmy toys till she is ready to sleep. This usually happens around 8:00pm ....
- Posted by the Kaylee Blogger
After her dose was topped up, the anxiety decreased within hours. It's a very clear effect and it confirms that we're on the right track.
Since Naomi will be away all day at uni tomorrow (on her birthday!), we decided to swap days and we had her birthday today ..... Kaylia loved it!
We have found a new aupair! Welcome to "Team-Kaylee" Zoe! (in anticipation of your arrival next month.)
It's 6:00pm and Kaylia is in her nightie already. She has made this part of her routine .... she gets dressed for bed and then has downtime with DVDs & iPods & stimmy toys till she is ready to sleep. This usually happens around 8:00pm ....
- Posted by the Kaylee Blogger
Friday, October 15, 2010
#81 Friday 15 October 2010
What a busy day! It was the school sports carnival and I went along .... Naomi missed out as she was working. I watched Kaylia come third in a running race ..... somewhere in the day she was able to score a 1st, 2nd, 3rd and a 4th ribbon! She needed help to participate (thanks Zeta) but she was right in there ..... she is not able to do it on her own yet but I feel as though it is within reach for her to be able to be 'age appropriate'. 'On ya Kaylee!
We had a review meeting at school yesterday ... very satisfying .... the school is doing such a good job with her ... plans are being made for kaylia's transition from year one to year two. It should be a good start to the next year. The iPad (not iPod) is proving to be really valuable as a teaching tool for Kaylia .... we're planning to get another iPad which will stay at school to help her in class.
This week I've started a new thing in therapy .... I have trouble remembering how to do the therapy exercises ... so I made a 1 minute video of the exercise and then put it on the iPad ... this worked really well and we are now planning to build a 'library' of videos of therapy exercises. We started this today .... and ran up against a baffling situation where Kaylia just couldn't do an exercise ... one where she has succeeded many times in the past. The video I made may be useful in her monthly review next Friday .... to help her psychologist to work out what is happening.
Naomi & I have decided on a new tactic to force ourselves to have a break .... we are each going on a solo holiday! Since Jetstar are having a sale, I've booked a very cheap flight to Bali next February. Naomi will do the same ... so we will both have a break.
Wednesday, October 13, 2010
#80 Wednesday 13th October 2010
Sometimes I think to myself that I'm probably writing this blog just for myself ... then someone makes a comment about reading it and it is all worth while! Maybe Kaylia will value it herself in future years .... very few people have a detailed record of a part of their childhood life. I have so many memories of my own childhood - very detailed memories!..... but there is nothing written at all .... we have a few photos but there's not much written down which can add credibility to my memories. In contrast, Kaylia will have so much! She has thousands (1,643 at least) of photos, lots of video .... she has this blog .... she has all the therapy records (written & video) .... not to mention all the travel photos! So far she has been overseas 6 times .... when she has the iPad, she nearly always spends some time looking through the travel p
hotos of the trips she has shared.
She is still addicted to shopping at the Two Buck shop and she is working hard for her rewards! ... though it didn't work last night and she gave me a bad night .... awake from 2 to 5am! She also loves the 'Wiggles Roundabout' at the shopping centre .....
Yesterday we visited her paediatritian and as a result we're going to try adding ADHD medication to the mix ..... partly to control ADHD type behaviours (which have become evident now that the 'mask' of stimming is reduced ...... but mainly because a side effect of this type of drug is loss of appetite. She badly needs help to control the ravenous hunger which comes from the drug which is controlling the stimming. Her weight has increased by 25% since January and this has become a serious problem.
hotos of the trips she has shared.She is still addicted to shopping at the Two Buck shop and she is working hard for her rewards! ... though it didn't work last night and she gave me a bad night .... awake from 2 to 5am! She also loves the 'Wiggles Roundabout' at the shopping centre .....
Yesterday we visited her paediatritian and as a result we're going to try adding ADHD medication to the mix ..... partly to control ADHD type behaviours (which have become evident now that the 'mask' of stimming is reduced ...... but mainly because a side effect of this type of drug is loss of appetite. She badly needs help to control the ravenous hunger which comes from the drug which is controlling the stimming. Her weight has increased by 25% since January and this has become a serious problem.
Sunday, October 10, 2010
#79 Sunday 10th October 2010
The tenth of the tenth of the tenth!
This morning we took Kaylia to the movies - this was her third time ... once with school and twice with us. We saw "Cats & Dogs" and she really enjoyed it. She was scared by the 3D effects and took the glasses off for most of the film ... but she was very excited by it all. She had some pop-corn and she lasted for most of it ... but then she just tipped the box over herself!!
It was a good morning.
Her reward system for sleeping is still going well. We've incorporated a money reward component into the therapy sessions and she digs that! She loves the trips to the Two Buck shop!
This morning we took Kaylia to the movies - this was her third time ... once with school and twice with us. We saw "Cats & Dogs" and she really enjoyed it. She was scared by the 3D effects and took the glasses off for most of the film ... but she was very excited by it all. She had some pop-corn and she lasted for most of it ... but then she just tipped the box over herself!!
It was a good morning.
Her reward system for sleeping is still going well. We've incorporated a money reward component into the therapy sessions and she digs that! She loves the trips to the Two Buck shop!
Wednesday, October 6, 2010
#78 Wednesday 6th October 2010
Its only 7:30am and already another little milestone! (Actually, its quite a big one) I had explained to Kaylia that we would be going to the library and she repeated her version as usual .... then paused and repeated it several times, each time a bit clearer till she pronounced it correctly! This is the first time I can recall the she has shown awareness that the word was not correct ... then practiced till correct!
Today is a Kym day ..... which means an opportunity to spend her $2 earned by good sleeping!
Two days ago, I expressed doubt that the increased dose of Lovan was having any effect .... I think I may revise that opinion. Although it hasn't been a major change, I think her anxiety has decreased a little ... she seemed calmer yesterday. The change has not been in proportion to the increase in the dose so the idea (that the drug effect is levelling out) is probably still true.
One of our concerns (when we started down the medication path) was that the medication would alter her personality ..... thankfully, this has not happened and she has stayed the same delightful character.
- Posted by the Kaylee Blogger
Today is a Kym day ..... which means an opportunity to spend her $2 earned by good sleeping!
Two days ago, I expressed doubt that the increased dose of Lovan was having any effect .... I think I may revise that opinion. Although it hasn't been a major change, I think her anxiety has decreased a little ... she seemed calmer yesterday. The change has not been in proportion to the increase in the dose so the idea (that the drug effect is levelling out) is probably still true.
One of our concerns (when we started down the medication path) was that the medication would alter her personality ..... thankfully, this has not happened and she has stayed the same delightful character.
- Posted by the Kaylee Blogger
Tuesday, October 5, 2010
#77 Tuesday 5th October 2010
The sleeping regime change is working! Our little girl is a real shopping fiend and the prospect of a shopping trip is obviously very motivating! Last night she slept right through without stirring. Way to go!
Yesterday she had most of the day with Kym .... and loved it! It's so good for her to have places/activities (other than home) that she loves.
Today she has "Mummy Time" .... Naomi is having a Kaylee-break from work and they will be doing girl-stuff together.
Yesterday she had most of the day with Kym .... and loved it! It's so good for her to have places/activities (other than home) that she loves.
Today she has "Mummy Time" .... Naomi is having a Kaylee-break from work and they will be doing girl-stuff together.
Sunday, October 3, 2010
#76 Sunday 3rd October 2010
Anxiety has been an underlying theme lately .... today Kaylia has just been able to cope ... but it has been difficult for us to manage and there's not much relaxing time ... we need to be on guard to implement management strategies at the first sign that things are going haywire.
At present her anxiety produces repetitive, nagging behaviours .... these get very wearing and we handle them by a clear warning followed by a count down for continued nagging ... and a "time out" period in her room at number 3. This is working ... but the anxiety is still there and it makes it very hard for Kaylia to self-regulate.
I have been experimenting with an increased Lovan dose to try to reduce the anxiety ... but it isn't working and I think the Lovan has reached the limit of its effect.
The "new regime" for sleep has gone well - Kaylia is excited by being able to earn money that she can spend at the "Two Buck" shop (she loves this).
The search for aupair # 9 continues .... nothing to report yet!
At present her anxiety produces repetitive, nagging behaviours .... these get very wearing and we handle them by a clear warning followed by a count down for continued nagging ... and a "time out" period in her room at number 3. This is working ... but the anxiety is still there and it makes it very hard for Kaylia to self-regulate.
I have been experimenting with an increased Lovan dose to try to reduce the anxiety ... but it isn't working and I think the Lovan has reached the limit of its effect.
The "new regime" for sleep has gone well - Kaylia is excited by being able to earn money that she can spend at the "Two Buck" shop (she loves this).
The search for aupair # 9 continues .... nothing to report yet!
Saturday, October 2, 2010
#75 2nd Oct #2
We've just had another "Ah hah!" moment ....
For ages, Kaylia has been saying "..... doh ta! ...." ... which we have thought meant "doctor" (because she likes going to the doctor .... for the jelly beans!)
But we were driving through Midland a short time ago and while going past the "Play Centre Midland", we heard a little voice say ".... doh ta! ...."
The mystery was solved!
The mystery remains of why she has created that word ... she can very clearly say "Play Centre" and she knows what it means .... so why does she have a different word?
- Posted using BlogPress from my iPad
For ages, Kaylia has been saying "..... doh ta! ...." ... which we have thought meant "doctor" (because she likes going to the doctor .... for the jelly beans!)
But we were driving through Midland a short time ago and while going past the "Play Centre Midland", we heard a little voice say ".... doh ta! ...."
The mystery was solved!
The mystery remains of why she has created that word ... she can very clearly say "Play Centre" and she knows what it means .... so why does she have a different word?
- Posted using BlogPress from my iPad
#74 Saturday 2nd October 2010
Forgive me ... I'm going to have a rant!! I've been to the local swimming pool with Kaylia this morning .... for some time now, we have been eligible (on presentation of her Centrelink Health Care card) for a concessional entry - Kaylia pays but her carer is free.
This morning I was told that to get the free carer entry, I must have a "Companion Card"! I thought ... "This is odd! Why do I have to have a card to prove I'm a carer for Kaylia?" .... so I downloaded the application for the Companion Card ..... and it is not about the carer at all .... to get the card, you have to prove that Kaylia is disabled!!
This has got me angry! Why must we go through the trauma of proving that she is disabled for a second time? She already has a card from Centrelink saying that a government department accepts that she is disabled .... why do we now have a different government department saying that we must prove her disability again!! Surely the Centrelink card should be sufficient to allow the issue of the Companion Card?
I have written an email to this Companion Card department and I will take this to Julia if I must. It is unjust!
On the home front, the poor sleep continues ... I think it is safe to say that increasing the Lovan dose is not increasing the effect on anxiety. We need to find a different solution.
For the immediate future, we have decided to change Kaylia's routine so she only sleeps in her own room. This will mean that we take turns to sleep in her room till she has accepted this. But it will mean that we have a good night's sleep every second night at least.
It will be a noisy few nights till she accepts the new routine ... C'est la vie!
This morning I was told that to get the free carer entry, I must have a "Companion Card"! I thought ... "This is odd! Why do I have to have a card to prove I'm a carer for Kaylia?" .... so I downloaded the application for the Companion Card ..... and it is not about the carer at all .... to get the card, you have to prove that Kaylia is disabled!!
This has got me angry! Why must we go through the trauma of proving that she is disabled for a second time? She already has a card from Centrelink saying that a government department accepts that she is disabled .... why do we now have a different government department saying that we must prove her disability again!! Surely the Centrelink card should be sufficient to allow the issue of the Companion Card?
I have written an email to this Companion Card department and I will take this to Julia if I must. It is unjust!
On the home front, the poor sleep continues ... I think it is safe to say that increasing the Lovan dose is not increasing the effect on anxiety. We need to find a different solution.
For the immediate future, we have decided to change Kaylia's routine so she only sleeps in her own room. This will mean that we take turns to sleep in her room till she has accepted this. But it will mean that we have a good night's sleep every second night at least.
It will be a noisy few nights till she accepts the new routine ... C'est la vie!
Thursday, September 30, 2010
#73 Thursday 30 September 2010
Today Kaylia went to a party! She was invited to a friend's "Not A Birthday" party with a few others from her school class .... and it was good! She worked hard to overcome her fear of a new situation. She was interested in the others .... it was all positive. She was quite disturbed by the trampoline but by the end of the party she had gathered her courage and climbed aboard.
Here she is helping to ice some cookies.
The past few nights have all been nights where Kaylia has been up for a few hours in the middle of the night .... last night she at least was a little more quiet! The nights are bad when she makes so much noise that she keeps us awake.
I'm still in favour of my theory that it is anxiety that is the enemy here ... decreasing effectiveness of medication equals increasing anxiety ... when she wakes, she can't go back to sleep.
Here she is helping to ice some cookies.The past few nights have all been nights where Kaylia has been up for a few hours in the middle of the night .... last night she at least was a little more quiet! The nights are bad when she makes so much noise that she keeps us awake.
I'm still in favour of my theory that it is anxiety that is the enemy here ... decreasing effectiveness of medication equals increasing anxiety ... when she wakes, she can't go back to sleep.
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