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 ....