#414 Saturday 29 October

Happy birthday Dad.

It's a bad night .... for me that is .... Everyone else is fast asleep but it's 3am and I've been awake since midnight. Worrying about finances ... Worrying was Dad's 'bête noir' auci. Never mind ... it won't last forever.

I learned of 'Evernote' this evening .... great tool .... check it out!

Later:  I've loaded up the trailer with the Kanga and all its attachments .... the new owner will come to collect it tomorrow .... so long, mate!  The Kanga has been a lot of fun since I bought it in 2002.











Afternoon:
It's sometimes hard to 'frame' Kaylia's behaviour as being from the Big-A .... it gets so annoying at times ... hard to be patient when she's behaving in a manner that (for an NT child) would be very bad. Even the term 'behaving' is questionable ... do you say to a child who's hurt his leg that limping is 'behaving badly'? 

At Bunnings the playground fuehrer has struck! Bunnings has a big sign saying 'No responsibility taken' ... Yet a staff member is attempting to stop children from certain play .... even though the parents are there supervising! No responsibility = no power to control.

#413 Friday 28 October

A holiday! Naomi had a sleep this afternoon .... the first time that's happened in a long while!

..... and while we relaxed after tea, Kaylia got up to her tricks again. This time she found a bottle of craft glue .... and emptied it over the computer keyboard! Action stations everyone! The glue was on the carpet too .... so it was out with the carpet cleaner. The keyboard went into the sink and it's now drying. If it doesn't survive? A keyboard is cheap!



Then it was time for a little talk with Kaylee.

This morning she began the day with a bad anxiety attack. Perhaps the trigger was the fact that she wasn't going to school .... who knows. After an abortive trip to the pool, Naomi went for a long drive. Kaylia has been fine since. Car trips are wonderful.

#412 Thursday 27 October

She's a blanket hog. We all have our own blanket because she either pulls the blanket off you or she gets too hot and sleeps on top of the blanket .... so you lose the blanket that way! I hear people saying "why doesn't she sleep in her own bed?". ... once again I refer you to that book .... John Robison recounts the Aspergian trait of 'sleeping in a pile' .... Kaylia has it bad! If we get her to sleep in her own room, we will not sleep because of the noise of her complaints .... or because of the elephant going up and down the stairs! .... and she doesn't 'get used to it' ....

Another musing resulting from 'that book' .... the Big-A (both Aspy and Auty) is a name for a group of common characteristics. Of itself, the Big-A is not a justification for failure in life. A child who fits the descriptor is not condemned! We're surrounded by successful adults who are 'on the spectrum' ....
If a child's version of the Big-A is severe enough, it may prove to be a massive problem .... but success can still be achieved in some areas.

A big obstacle is the fact that an Auty child is highly likely to have Auty parents ... it has to come from somewhere! The Auty-ness of the parents makes it harder for them to manage the Auty-ness in the child ..... and there is such a paucity of community help in our society.

If our society were more communal, help for this problem would be feasible .... but in our segregated, nuclear society help is rare. The 'help' in our society is seen as money ... money will pay for early intervention therapy for Auty-ness but so much more help is needed .... it ain't hap'nen!

#411 Wednesday 26 October

A good night! Last night Naomi and I had our first 'night out' in ages .... thanks Kat.
In true form, Kaylia didn't settle ... she was still wide awake when we got home at 9.

I've been re-reading "Look in my eyes" by John Robison .... learning still more about the Big-A ..... there are so many "ah ha" moments when reading that book. Memories of my own life ... wondering if I've found an explanation for some of the puzzling and hard parts of my life. Plus sudden clarity about many facets of Kaylia's behaviour. ....

At a certain place (where she spends most of the day) the staff have asked that she wear a T-shirt 'cos she's looking down her front .  My first reaction is .... er ... duh ... so what?  I 'spose though that some people may find that disconcerting?  What do you think?
Of course with her metabolism, she can't wear a T-shirt under her uniform ... she'd melt!  She's a "hot box"!

#410 Tuesday 25 October

Missed a day ..... Yesterday was a very good day for Kaylia ... and an 'eggsellant' day for us! Naomi had a medical issue checked out and the result was "all clear"!! It is a real load off the shoulders.

#409 Sunday 23 October

It wondered recently ... is this blog sounding too much like a tale of woe? Am I dwelling too much on the negatives? The blog is s'posed to be a narrative of life with Kaylia .... Is it doing that?

Each time a new au-pair joins us we have many sessions where we explain the history of Kaylia .... things are going pretty well at present and it's easy to forget the bad times we've gone through in the past. (it's good to forget them! :-) ) The blog is a very good way to re-gain a sense of perspective.

BTW .... I create a backup of the blog as a PDF file ..... This puts in "normal" order ... oldest first .... much easier to read. If anyone would like a copy, I can email it.


B'fast .... Nomi is having a much needed sleep in .... Kaylia is outside stimming to the world at large. The weather is kind. We can use the balcony sitting area.

Today is a communal birthday gathering .... father, brother and Naomi. It's sad for Naomi .... The first such event without her mother.





It's hard to adjust to life without a parent ... I remember the sudden absence of that special person who was interested in me. I couldn't tell them that little story anymore.

Afternoon:  It has been a rotten day.  Naomi was looking forward to her birthday family gathering and we had to abort after about 20 minutes.  Kaylia had an anxiety attack and we had to get out before she exploded.  Fortunately the car is a reliable calming event.  We both feel trapped by the Big-A.  There's no real answer apart from doing our best and 'hanging in there'.  .... hoping that things will improve some day.  It's hard to keep going at times.

5pm   The Kanga has been sold!  It's the end of an era for me.  My little earthmover has been such a good machine.