After a good night (with Kaylia sleeping right through the night) the day went down hill fast! For some reason Kaylia began the day in a state of high anxiety ... for her this showed as an obsession for "CAR!" The anxiety level could just be the fact that it is a full moon (don't laugh - its real!) or it could be a strange reaction to the recent increase in Lovan.
The drive over to Maxine's calmed her but soon after arriving there she was clearly anxious again. The situation deteriorated to a 'melt-down' and so the visit was cut short and we headed home. At home, the anxiety level went up as soon as we were out of the car! After a few attempts at distraction, Sophie took Kaylia for another drive and found playgrounds nearby. The playgrounds seemed to be calming for her today ..... more visits to a playground later!
(Incidentally .... "PECKAR" is "playground"! Another word of Kaylee-speak.)
Its been a l.o.o.n.g day!
Saturday, May 29, 2010
Friday, May 28, 2010
Friday 28th May 2010
A significant event has occurred a short while ago - let me share it with you! Every time in the past - when Kaylia has arrived home from school - she has charged down the stairs and ignored me. (My desk is near the front door and I always say hello to her.) Today ... for the first time ... I said "Hello Kaylia" and she looked at me, then ran over and jumped on my lap to give me a hug! What a special moment!
At this moment Kaylia is half way through her 2 hour therapy session (3:30 to 5:30, three days a week) and today her enunciation seems much better - the words are much clearer .... and she actually responded with a 'No' instead of 'No haha'. (This 'No haha' is something that crept in from somewhere and it is proving to be a battle to get to her to just say 'No')
The sleeping has improved but we're still not there yet ... last night she woke at 1am and after a 'sleepy dose' she slept again at 2am.
Tonight the school has a Year One dance! It will be marvellous to see her 'doing her thing'! (Of course her 'thing' is a little different to the other kids .... )
At this moment Kaylia is half way through her 2 hour therapy session (3:30 to 5:30, three days a week) and today her enunciation seems much better - the words are much clearer .... and she actually responded with a 'No' instead of 'No haha'. (This 'No haha' is something that crept in from somewhere and it is proving to be a battle to get to her to just say 'No')
The sleeping has improved but we're still not there yet ... last night she woke at 1am and after a 'sleepy dose' she slept again at 2am.
Tonight the school has a Year One dance! It will be marvellous to see her 'doing her thing'! (Of course her 'thing' is a little different to the other kids .... )
Tuesday, May 25, 2010
Tuesday 25th May 2010
Last night we tried a new idea ... the medicine to counteract insomnia was not working in the middle of the night .... so we gave Kaylia a smaller dose at bedtime and then a second dose when she started to wake up at around 2am. She went straight back to sleep and slept through to 7am. It worked! We think this is the first full night of sleep she has had in about 6 weeks. And of course, this is the closest we have come to a full night's slep in that time too!
The "cocktail" of medicines that she is currently on seems to be bringing a good result ..... reduced stimming without headaches or the insatiable appetite! She is a happy girl at present - although she is having periods of frustration where she tries to communicate with us ..... and we can't understand her! Her latest is "PECKHAR" ????
Linda Verachtert joined Team Kaylee yesterday as Kaylia's new aupair. Linda is from the Netherlands and is an experienced social trainer. She has been travelling for 18 months so far. Next weekend, Sophie will fly to Broome to start the rest of her travels.
I have written a small handbook that I call "An Operators Manual for Kaylia" .... it is full of information & suggestions for people who have a role in caring for Kaylia ...... if you would like a copy, email me and I'll send it to you.
It's Tuesday night and this means that Naomi & I can escape for a couple of hours!
The "cocktail" of medicines that she is currently on seems to be bringing a good result ..... reduced stimming without headaches or the insatiable appetite! She is a happy girl at present - although she is having periods of frustration where she tries to communicate with us ..... and we can't understand her! Her latest is "PECKHAR" ????
Linda Verachtert joined Team Kaylee yesterday as Kaylia's new aupair. Linda is from the Netherlands and is an experienced social trainer. She has been travelling for 18 months so far. Next weekend, Sophie will fly to Broome to start the rest of her travels.
I have written a small handbook that I call "An Operators Manual for Kaylia" .... it is full of information & suggestions for people who have a role in caring for Kaylia ...... if you would like a copy, email me and I'll send it to you.
It's Tuesday night and this means that Naomi & I can escape for a couple of hours!
Sunday, May 23, 2010
Sunday 23rd May 2010
Lots of thoughts today .... first - housekeeping - I have been asked about the 'missing' start to the blog ... so I have added #1 to #6 at the start of the first post. That way, any one just starting with the blog can go back to the beginning and see the whole story.
Second - do you know that you can easily create a shortcut on your desktop that will take you straight to the blog? Just point to the desktop, right click, new, shortcut ..... then put in the blog address (http://team-kaylee.blogspot.com/) and save ... Done!
Thoughts: I've had a couple of instances recently where I've mentioned this blog and people have made comments about how they have friends or family with ASD or suspected ASD children ... they have liked the idea that they can pass on our blog ... so their friends can share too.
Then we have found that people we already know have ASD in their lives too .... and the blog is a way that we can be more open & sharing with them.
Kaylia: today I feel that we have a good medication mixture again. Kaylia is happy .... a little stimmy but obviously enjoying herself. She's been sitting in her room reading books - something she hasn't done for a while. She is still trying to add another box to her floor collection .... but doesn't object when I say No.
The coughing prevents us from overcoming the sleep problem .... so we must get rid of the cough!! (Note the tone of desperation?) Last night, Kaylia woke herself at 3am with the cough .... and went to sleep again at 6:30. Fortunately, Sunday morning means we can sleep in. Sleep in time is a big favourite for Kaylia .... she is full of happiness to be in a warm place with Mummy & Daddy.
One of our friends has recently had problems with how people in authority perceive & interact with children with ASD .... it reminded me again of my Centrelink experiences. When registering with Centrelink for carer benefits, you MUST attend in person ... which means standing in a queue for ages waiting to be seen .... even if it is only to hand in a completed form .... and with an ASD child there is rarely any chance of a baby-sitter .... so you're standing in the queue with a child who may 'melt-down' at any moment. And of course that situation is almost sure to produce a melt-down. There are many situations which are incredibly hard for people with a disability ... and there is little flexibility allowed for them!
Second - do you know that you can easily create a shortcut on your desktop that will take you straight to the blog? Just point to the desktop, right click, new, shortcut ..... then put in the blog address (http://team-kaylee.blogspot.com/) and save ... Done!
Thoughts: I've had a couple of instances recently where I've mentioned this blog and people have made comments about how they have friends or family with ASD or suspected ASD children ... they have liked the idea that they can pass on our blog ... so their friends can share too.
Then we have found that people we already know have ASD in their lives too .... and the blog is a way that we can be more open & sharing with them.
Kaylia: today I feel that we have a good medication mixture again. Kaylia is happy .... a little stimmy but obviously enjoying herself. She's been sitting in her room reading books - something she hasn't done for a while. She is still trying to add another box to her floor collection .... but doesn't object when I say No.
The coughing prevents us from overcoming the sleep problem .... so we must get rid of the cough!! (Note the tone of desperation?) Last night, Kaylia woke herself at 3am with the cough .... and went to sleep again at 6:30. Fortunately, Sunday morning means we can sleep in. Sleep in time is a big favourite for Kaylia .... she is full of happiness to be in a warm place with Mummy & Daddy.
One of our friends has recently had problems with how people in authority perceive & interact with children with ASD .... it reminded me again of my Centrelink experiences. When registering with Centrelink for carer benefits, you MUST attend in person ... which means standing in a queue for ages waiting to be seen .... even if it is only to hand in a completed form .... and with an ASD child there is rarely any chance of a baby-sitter .... so you're standing in the queue with a child who may 'melt-down' at any moment. And of course that situation is almost sure to produce a melt-down. There are many situations which are incredibly hard for people with a disability ... and there is little flexibility allowed for them!
Saturday, May 22, 2010
Saturday 22nd May 2010
She Slept!!
Last night it was clear by 8:30 that the cough was not going to let her sleep ... so Ian went down and cuddled her so that she could get through it. The cuddling is very soothing for her and it meant that she stayed asleep despite bad coughing and a stuffed up nose. Then at around midnight the coughing stopped and the breathing cleared! She then slept the rest of the night.
This was very good as the lack of sleep has been making life very hard for Naomi as she struggles to meet work demands .... it was so good for Naomi to have a full night of sleep.
This morning Kaylia is calm and happy. Wonderful! This doesn't stop her from asking for a car drive! But she accepts that she will have a car ride later. The Saturday routine is to go and visit Aunty Maxine (while Naomi works). Kaylia loves being at Maxine's and she usually manages to have at least two bath sessions while there! Since these visits have 2 car rides as part of them, Kaylia LOVES going to Aunty Max's. Before that we will visit the doctor to discuss the cough.
Last night it was clear by 8:30 that the cough was not going to let her sleep ... so Ian went down and cuddled her so that she could get through it. The cuddling is very soothing for her and it meant that she stayed asleep despite bad coughing and a stuffed up nose. Then at around midnight the coughing stopped and the breathing cleared! She then slept the rest of the night.
This was very good as the lack of sleep has been making life very hard for Naomi as she struggles to meet work demands .... it was so good for Naomi to have a full night of sleep.
This morning Kaylia is calm and happy. Wonderful! This doesn't stop her from asking for a car drive! But she accepts that she will have a car ride later. The Saturday routine is to go and visit Aunty Maxine (while Naomi works). Kaylia loves being at Maxine's and she usually manages to have at least two bath sessions while there! Since these visits have 2 car rides as part of them, Kaylia LOVES going to Aunty Max's. Before that we will visit the doctor to discuss the cough.
Friday, May 21, 2010
Friday 21st May 2010
Kaylia has had a good day despite another disturbed night. The coughing - which she has generously passed on to the rest of us - is enough to wake her .... so we can't tell how good our sleep making ideas are! Last night she slept till 3am and then was awake till 5:30 when she slept again. Tonight we will try to give her some medicine before she starts coughing again ... so that the coughing doesn't wake her. Or so the theory goes!
The stimming has not reduced again but it is still much better than a week ago. Tonight she went to bed earlier than usual. Naomi thought she had settled her and had left her to sleep. The next thing she's up and racing around downstairs. Ian stepped in and she's asleep again. She's a tricksy little thing at times!
Despite all her coughing and spluttering she's gone to school every day this week. She may be sick but she's tough little thing. Tougher than her parents anyway :) We're going to take her to the doctor tomorrow as her cough is a little too croupy plus Naomi has is in her head that she may be developing her asthma symptoms again. In any event, Kaylee will enjoy the outing as she associates going to the doctor with jellybeans. That and that fact that stethoscopes make awfully good dingle-dangles :)
The stimming has not reduced again but it is still much better than a week ago. Tonight she went to bed earlier than usual. Naomi thought she had settled her and had left her to sleep. The next thing she's up and racing around downstairs. Ian stepped in and she's asleep again. She's a tricksy little thing at times!
Despite all her coughing and spluttering she's gone to school every day this week. She may be sick but she's tough little thing. Tougher than her parents anyway :) We're going to take her to the doctor tomorrow as her cough is a little too croupy plus Naomi has is in her head that she may be developing her asthma symptoms again. In any event, Kaylee will enjoy the outing as she associates going to the doctor with jellybeans. That and that fact that stethoscopes make awfully good dingle-dangles :)
Thursday, May 20, 2010
Thursday 20th May 2010
The trial of the new 'sleepy drug' was interesting but inconclusive - K has a bad chesty cough at present and it wakes her up from sleep - then keeps her awake. (and us too!) The new medication actually worked well ... administered 30 mins before bed and she was out like a light when her head hit the pillow .... but then she woke up at 10pm and was awake till about 4am. We need to control the cough before we can say whether it will work all night.
Fortunately, the stimming has continued at the reduced level without any headache. Tomorrow should see another small change in 'stimmy' levels.
I may be a strange bunny but I enjoy the process of thinking through the medication program and pondering the reactions observed. At present, the process is producing a fairly happy Kaylia!
Fortunately, the stimming has continued at the reduced level without any headache. Tomorrow should see another small change in 'stimmy' levels.
I may be a strange bunny but I enjoy the process of thinking through the medication program and pondering the reactions observed. At present, the process is producing a fairly happy Kaylia!
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