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!
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