Friday 25th June 2010

Wow - another follower of the blog!
(I suppose that an "in-house" follower is probably cheating - but I don't mind.)
Last night we went back to using Melatonin - and it worked! (Just as well as I was getting lots of comments about how bad I looked from the lack of sleep.) Kaylia is still at a level of anxiety which is not desirable but I feel as though we have made a bit of progress .... hopefully it will continue.
It is strange how Kaylia obviously enjoys all the attention that comes from having 5 adults in the house - but it still upsets her routine and she suffers at the same time as a result.

Strange things that make her tick .... I have some video clips of Tina Arena on my Ipod .... and they are favourites for Kaylia. She has stopped watching the 'childrens' videos and now goes straight to the photo album (mostly of her) and then to the school videos followed by the Tina Arena music clips!

Wednesday 23rd June 2010

Well it has be an interesting time ..... we have been reminded about the importance of routine in Kaylia's world. In recent weeks we have had a new au-pair arrive, a change in aides at school and this week, another new person in the house. And its been too much! The last two nights have been very disturbed with high anxiety in the middle of the night ..... and so we are rearranging things to restore Kaylia's feeling of routine. Hopefully she will have a better night tonight.

Unfortunately the changes in routine will keep coming over the next few weeks as Tina heads off to Germany and then Anni leaves for Queensland. We will need to be doing all we can to keep the routine constant where possible.

Monday 21st June 2010

Over the past two days several situations have occurred which have shown me just how lucky we are to have Kaylia, how well she is progressing and also what a lovely person she is becoming. I can't detail all the situations but they have been a good reminder for us. Anni has been here for a few hours now and she is impressed by the positive differences in Kaylee. As Anni was leaving in Dec 2007, Kaylia was getting ready to start preschool .... now she has been through preschool and she is in Year One.

Friday 18th June 2010

Today I was discussing (with Kaylia's therapist) how we will decide when Kaylia should end therapy. This is going to be some time in the future .... but we are in an unusual situation where Kaylia is likely to benefit from the therapy program for a long time. (In many ASD cases, the child gets to a point where they are not making improvements because they have reached 'normality' .... however Kaylia is quite likely to continue improving because she is so far from being 'normal') Much of this dilema revolves around her use of language. Although we are seeing frequent real improvement, she is still a long way from being able to join in a conversation at a six year old level. In my mind, this is the goal .... for her to be able to join in a conversation at an age appropriate level.
Of course if we are to continue with therapy, it boils down to the $ ... how long can we continue to pay out $2,000 per month? We will probably need to re-mortgage the house at some point but I hope we can do this in a planned manner.

The medications continue the work well in 'stim control' and we seem to have found a good method for sleep! ... and through all this, she is very happy. It's good!

Wednesday 16th June 2010

The past 2 days have been good ... she has been sleeping quite well, the medication has been working well. Kaylee is cheerful and fun to have around! This evening she was having a ride on Tina's back and she was being 'jogged' up and down .... now normally Kaylia doesn't make a lot of noise ... but tonight she was making loud enjoyment noises! It was good to hear. Put this together with the phone call a few nights ago and perhaps we have trend developing ... perhaps she is emerging from her shell.
A lot of our day to day work is making sure that Kayia doesn't train us to do what she wants! If she had her way, she would not have to use a sentence to ask for something ... she would just say the name of the object .... "PEE BUDDER" instead of "I want peanut butter". It is hard to remember.
In a few days time, we will have Annemarie returning! Anni was here from July to December 2007 and was present for some very important stages of Kaylia's progress. It will be fabulous to see them together again and to watch how Kaylee reacts.

Monday 14th June 2010

Saturday night was good after she wore herself out during the day! Sunday was also a big day for her and she was in bed early ...... BIG MISTAKE! Sho 'nuff she was up at about 1 or 2am last night and she was wide awake again. (Maybe she just wanted to watch the Socceroos play Germany!!) We have got the point now where when she wakes, we just tell her to play in her room. She played till about 5am this morning! After bad nights like this, we let her sleep in before going to school ... so she at least has a productive day.
Someone asked if we were still using Melatonin ..... only as a last resort before midnight. If we use it after midnight, she is still sleepy the next day at school. We have found that keeping her up a bit later works as well as Melatonin.

Tonight, she spoke quite loudly on the phone! This is unusual as so far she has only used a little voice ... I wonder whether she realised that she was actually speaking to someone ....

Saturday 12th June 2010

Last night she started the night well but woke at 4am and was UP! There was no getting her to sleep and Naomi retreated to store some zeds so she could get through the day. I tried to keep the beast under control till dawn! By 9am, Kaylee was starting to climb the walls with "CAR" and "PECKAR" at 1 minute intervals .... she figures that repetition will do the trick! Fortunately, we found that the chemist who had dispensed the Lovan would give us another packet pending a new prescription (since SSRI's should not be stopped suddenly) ... so it was off in the car to get some Lovan. A dose of Lovan a 10am was having a clear effect by midday and by evening, she was back to normal. In a way, this has been a good experience as it shows that we are on the right track with the current mix of medications.
While at the chemists I met a friend who I hadn't seen for a couple of years and as soon as I was asked "How are things going?", I couldn't really answer .... so I handed over a card with the web address of this blog ... the blog hopefully can give a clearer picture - much better than I can verbally. I still struggle with the question of whether we're being 'wooses' or whether we have genuine cause for feeling 'up against the wall'.