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.
Saturday, December 11, 2010
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!
Subscribe to:
Posts (Atom)