#299 Sunday 26 June

The night is yet young .... already it feels as though it will be long! After the previous night, I struggled through the day and I crashed when Kaylia went to bed at 7pm .... now at midnight I'm awake with an aching wrist .... it seems worse than normal .... maybe it's protesting about the way I'm able to use it more as it improves??




5:00am .... it wasn't too bad after all. Kaylia is up early with a wet bed ... so it's early morning coffee and some daddy/Kaylee time on the lounge. She's found a dingle-dangle so so stim time is in order.

Sometimes in this blog I'm tempted to let loose with a rant on some topic .... but I try to resist unless it's related to Kaylee in some way. I've started another blog just for that purpose ... read it at your peril! .... find it in the index.

How is the wrist related to Kaylee? Poetic license.

8:00am ...... ooooooo .... I need a sleep!





Evening: Kaylia slept from 12:30 to 5 this afternoon! I had a catch up sleep too but not that long! Naomi & I took the chance to go out to a movie ... first time in ages!
Now it's 7:30 and she'll probably be up for a while tonight.

#298 Saturday 25 June

Well hello again! It's 3:00am again! This is getting monotonous .... Kaylia gradually woke and she's gone downstairs. This time she's quiet. It's swimming pool time later this morning so it will wear her out a bit.

I have a theory that the sleep issues stem from the auty problem of her having no ability to engage in imaginative play. At the end of the day Kaylia simply has no acceptable activity other than watching DVD or sleeping! Where an NT child would read or play games, these are meaningless to Kaylia as they involve imagination.




So she goes to sleep (too early in the evening) simply because she sees it as an OK thing to do ... then she wakes when her body has had enough rest (at 3am!) and goes back to her usual stimmy behaviours ... dingle-dangles and DVDs.

It's a theory. Maybe I can sleep now?

Morning: Bad night. Kaylia eventually came back to bed ... but couldn't find "pink piwo". (her pink pillow ... akin to Linus's blanket). After numerous attempts to ignore it, we got up and turned the light on for a concerted search..... found it! .... back to sleep.

#297 Friday 24 June

It's the post OT 'blues' ..... I always manage to overdo it in OT sessions .... and I suffer afterward. Aching muscles ..... aaarrgh! It's 2:30am and it won't let me sleep. I've resorted to a tablet and I'll write for a while till it takes effect.

You may have heard the radio talk-back yesterday on ABC about the Carson St School .... many of the callers had adult children who had been through school there ... some related their experience of a life raising a child with disabilities. It left me with two impressions ... firstly that we're fortunate .... Kaylia could be much worse. Thinking back to when she began therapy, if she had not been through therapy, we would not have Kaylia. I think the difference would have been that great.
Secondly.... it's the old issue of political expedience ... although the cost of inaction will be gigantic in comparison to the cost of early intervention, this cost blow-out will be a problem for some poor government many election cycles in the future! It's not an immediate vote catcher. It is easier to sweep the problem under the carpet.

..... and the children suffer as a result.

Kaylia has come downstairs to join me .... "Medicine!" (she says) .... it's wonderful that she can now tell us. Two years ago, this situation would probably have developed into a screaming melt-down in the middle of the night as she tried to deal with pain and was unable to tell us how she was feeling. Now she has had some Panadol and she's just quietly sitting on the lounge. In a while, she'll go back upstairs to bed again.

Evening:  She stayed up for the rest of the night!  I went back to bed and slept badly because she was so noisy.

School made a lovely comment today ... that Kaylia's smile has brightened the classroom!  Regardless of how Kaylia fares academically and in life-skills in the future ... she will be a sunny, happy personality.  While driving to school, she was chuckling away .... I'd love to know what about.  I know she has a very good sense of humour so the chuckling is likely to be real mirth (not a stim) ... but what is it that she finds so funny?

#296 Thursday 23 June

Another good day .... she's not eating much during the day but that's quite OK!

This afternoon we went to the 'shops' .... and met Dani! Dani was Kaylia's nanny till she was three and hasn't seen Kaylia for about 3 years. Dani has her own 3 week old baby girl!






Woolworths had an arch of balloons! What a pity we couldn't take it home.

I had another OT session today. I've met the target of being able to make a fist. Next week I have the next set of Xrays .... if the bones have healed properly, I won't need to wear the splint and the OT will then focus on getting the joint to move again.

The saga of the 'bwoo car' has ended. It went to the wrecker. Tina is going back to Germany and her car will stay 'in the family' ... Thanks, Tina!

#295 Wednesday 22 June

Mystery! Why does the lil' chipmunk like to roast herself? Each night lately she's gone to sleep .... then after a few hours she's really hot & sweaty. She wakes up and after cooling off, she can sleep again. Is it a childhood thing? .... learning to regulate body temperature?

I'm starting to do a bit of exercise (oh yuk!) .... I'm walking and using an app which records the route, distance, rate of walking .... all using the GPS. It saves the data so I can build a record. I can also email the data to my doctor. I can also do this for blood sugar data and blood pressure data. (By telling you this it makes it harder to just ignore it all ... I have to do it.)

#294 Tuesday 21 June

Shortest day of the year .... Don't blink! That means that last night was the longest night ....
Both Kaylia and Naomi were sick yesterday .... Kaylia had a great day at school but she went to bed as soon as she got home! She slept till 11pm then went downstairs. I thought she might be hungry so I followed ... but no - no food - just cuddle for about an hour and then back to bed.

We're going to try taking her off Risperdal next week. Very carefully. This is the one that makes her very hungry .... So if she can now cope without it, her health will benefit. Risperdal controls the stimming so that learning can occur .... so if her interest in school activities can overcome her inner focus, it may work! The removal of the Risperdal has to be done gradually ... Over 4 - 5 days. The Lovan will stay ... this helps with anxiety and we know from the time it was forgotten (the weekend before last) that it's still absolutely essential!! It's amazing how quickly it takes effect.

Evening: She's had a good day but she's crashed into bed without any interest in food. She is cuddled up beside me as I write. (A lot of the blog is written while I'm in bed .... either putting Kaylia to sleep or in the middle of the night.)

We had a scary ride this morning ... my "bomb" decided that it didn't like slow speed ... as in intersections! It's not safe any more .... so .... off to the knackery for you my lad! I now have to find another car .... (Tiwa???)

Busy day today .... at 7pm Naomi is still at work!

#293 Monday 20 June

It was a very unsettled night .... being up from 1 to 4am is becoming a regular event! It's not good.
Today Naomi & I will both take Kaylia to school so Naomi can learn the layout.

Afternoon:  Kaylia has had a good day at school ... she's very happy now .... she's in the middle of therapy.  The sleep is a puzzling thing.  If she doesn't need as much sleep as she is getting then she is going to have trouble changing bedtime ... the "routine"  problem.  .... but she already goes to bed late sometimes so maybe that isn't the problem.  It could be a temperature regulation problem ... she gets hot when sleeping and this can make it hard to sleep.  We need to get her sleeping in cooler pyjamas.

#292 Sunday 19 June

Kaylia was up late last night and slept well as a result. I didn't! Yesterday I had used a 'hot pack' and massage on my wrist to work on the tendons that are not moving well. The tendons now move a little bit more but I'm suffering! I was up from 1am to 4am last night.

Rant (stop reading ... you've been warned!)
Oh for the time when (or if) she becomes a little less routine-bound. Life is a roundabout ... HJ playground .... swim .... shops ... Hang on ... Shouldn't I be thankful? At least she knows what she wants and we don't get the "I'm bored" song!!

We've just been to HJs .... and had to retreat because of some kids that just wanted to scream at the top of their voice! (I guess it might fix a few latent issues for them!)
So now we're at Bunnings ... I've been to the chains & ropes section and she's chosen an assortment of small chains .... one metre of each thanks! She's very happy with her new dingle dangles. She was quite a sight standing on top of the play castle .... dangling at full throttle!