#932 Saturday 28 June

Well .... that went well!  It was a good dance and Kaylia really enjoyed herself.  I can foresee many sessions watching the videos.

Today is the last day that Kat will be looking after Kaylia and a zoo trip is planned.

#931 Friday 27 June

Tonight is a school disco dance!   Kaylia loves them.   She went to a dance when she was in Year 1 at Darlington Primary .... and she still loves to look at the videos I took of that occasion. 

So ..... I will have photos and videos again.

This Kaylia ready to go.

She had a really good time at the dance. We're proud of the way she has learned to cope with all the noise.  It was VERY noisy and a while back, she just wouldn't have been able to stay there.

#930 Thursday 26 June

It's 1:30am .... I'm not going to be able to sleep for a while .... I had another nightmare and it was a particularly bad one.  I hope that there's no life after death  .... because if there isn't then I can look forward to no more nightmares.

When the papers report accounts of people who have suffered childhood abuse and how they never get over the effects of the abuse,  I completely agree. Fifty years later and I still don't sleep.

Later ... Still awake .... I can't even settle enough to play Solitaire.  That's the one game that I can actually play .... I keep a rough tally of how many games ... it's about 5 and a half thousand.  The tally isn't exact because each time I have to do a "restore" of the phone, the tally goes back to zero.

Later again ..... the eyes want to sleep but the brain won't stop whirring.   Sorry .... the blog isn't about Kaylia tonight .... it's just me.  At times like this the brain won't let me even think about the techniques I've been taught to try and control it.

This is a poem I wrote years ago .... it just seems right to include it here.

Cry for the lost years

All time is three

and three is one

Past present and future

are with me always as one

but ever present as three

The past is our wisdom and experience

that guides us through the present and

leads us into the future

The mem’ries of the past have shaped

my past and have shaped my present

and will shape the time still to come

Part of the past is always present

but unwanted

It was not welcome or sought -

the space that it takes in my mind

was hacked .... and torn .....

stolen from my then present

to be the ever present thief of my future.

When present in the past the thieves stole the unborn future

Now they slowly creep through my mind

and mindlessly they steal again ...

my present time ripped blindly from my open hand

Damn you! ...  Damn you .....

You unthinking vandals of my life

have taken the present which might have been

and with callous cruelty you keep on stealing my present

and scrawl your obscene graffiti

onto the pages of my future

I cannot rewrite the pages which are wrote

I cannot reclaim a past which never happened

but I can accept the pain and learn .....

.... welcome the pain and build its bittersweet taste

into my present -

and use the lessons so painfully learned

to shape my future as I choose.

So cry for the lost years

Weep for them and grieve

but when the end is seen of all the tears ....

..... then welcome the time now

and welcome the time to come

© Ian Croft Jan ‘97

#929 Wednesday 25 June

It's 5:30am .... Kaylia has the headphones on while she watches nursery rhymes on YouTube .... and I talk to you.  Naomi sleeps because she has been up late working as usual.  

It's hard to imagine what our life would have been like without the iThingies ....   they burst onto the world just as Kaylia's autism really began to impact on our daily life.  Coping with ASD means compromise in so many ways.  I think I'd be bored out of my brain if I didn't have this "handful of distraction".

Yesterday during therapy, there was a 'bloggable moment' ..... Kaylia is often given the choice of which activity she'd like to do next.  Yesterday Alison said "What do you want now?"  .... and her response "HAPPY!" ..... meaning she wants to be happy.  In Kaylee-speak this means "I'm feeling really happy right now".  Isn't it good.

It's such a satisfying feeling to know that over the past few years we have brought Kaylia from a life of stress and emotional pain ..... to her life today ..... where she's a bubbly, happy child who dances around the house with pleasure.

There's been an email from Chris and Lara .... they're in the Pilbara right now .... so they're almost at the end of their travels.

#928 Tuesday 24 June

Progress!  At about 6am this morning, Kaylia woke herself up and took herself off to the toilet .... before she wet the bed.  It's a small step but it's important.  Don't worry ... she got lots of praise.

#927 Monday 23 June

Gee it was cold today.  At least the shortest day is past and the days are getting longer.  

Therapy was good as usual today.  Kaylia really loves that time.  She has so many good experiences in her life .... it will be a good foundation for her happiness as she grows.

#926 Sunday 22 June

Kaylia slept and slept and slept this morning .... we slept in till 10:30am!  Bliss.   The best sleep in we've had in ages.  The downside was a wet bed at 7:30 .... but we managed the bedding change without really waking her and we all slept on.  

After that it was too late for normal routine so it was just down for shopping and some office time.

Now it's relaxing afternoon .... I've just made "Tuna Treats". .... Yummy! I'm glad that Tuna Treats are ok on the diabetic regime .... 

Speaking of the diabetic regime .... it's going well.  My blood sugar levels are under control and my weight is steadily falling .... a steady 1 kg per month.  I need to lose around 20kg so it's a year long project.