Friday, August 31, 2012

Drivin'


Today's post is actually about Murray but seeing as he hates having his photo taken Ashlea will be his picture substitute.  You need to imagine that it is Murray sitting in his car rather than Ashlea in hers - although she is doing quite a good job of channeling him with her hand on the horn there :)

Yesterday Murray had a driving assessment to see if it was safe for him to start driving again. He passed with flying colours - even a test involving using a street directory to navigate to unfamiliar locations - a test that I would fail even without a brain injury.  The only recommendation they made (actually it may be a requirement not just a recommendation - I need to check that) is that he have a GPS installed in the car...just in case.

In other big Murray news his OT is very happy with his progress and feels he may be ready to graduate from rehab.  The next step for him is to work with the Commonwealth Rehabilitation Service.  Their role is to attempt to get him ready to return to work.  He is still a long way off being ready to do his old job but the OT believes he may be able to work in a job where he has a lot of support.  I don't really know how all that fits with the job he already has but it sounds like they may help him find some sort of interim work that allows for his current strengths and weaknesses and helps him build up his skills to see if he can get back to his old job.

All this excitement and he hasn't even seen his fabo Father's Day present yet (and no - it's not a GPS).


Saturday, August 25, 2012

Who, What, When, Where and why?

WHO replaced my first born baby with this big girl?


And WHAT happened to my 570gm second born?




WHEN did the baby of the family get so grown up?



I still don't know WHERE to find a bribe big enough to get them to all sit still for a group photo though.



And WHY (sorry this one is totally random) but why oh why is my backyard filled with mysterious (dead) sea creatures???

I hope you're enjoying the sunshine this weekend like we are!


Thursday, August 23, 2012

Band WIN!



Ashlea's support class at school have a fabulous percussion band and today was Ashlea's first ever band performance.

What a proud Mummy moment.  I wasn't sure if she'd be able to hold it together for the performance but she did such a great job.  I can't even describe how good it felt to see her up there performing with her class.

I wish I could put the entire band photo up for you to see - but if you can imagine 20 or so kids with disabilities playing their instruments with huge grins on their faces - and all their parents watching with tears streaming down their faces - that will give you an idea of how awesome our band is!

I can't wait for the next performance!


Monday, August 20, 2012

Tantrum Time

Ashlea had a tantrum today.

A Very.  Big.  Tantrum.



The kind of tantrum that went on for an hour.

It was over the ipad of course.

She was cross about something so she pulled everything off my desk onto the floor - including my camera.  I was not happy.  The only currency with her is the ipad so I thought I'd try taking it away from her as a consequence.  Problem was that it turned into just as much of a punishment for me as it was for her.  She was not at all happy with me and she let me know it!

Anyone got any tantrum-taming tips?  Or ipad-addiction strategies???

PS For those who are wondering she did eventually calm down.  After I turned the TV on. Parenting...I think we're doing it wrong...

Friday, August 17, 2012

Age of Anxiety



Yesterday Emma had her assessment for - and was accepted into - the Enhanced Exposure Therapy clinical trial at the Centre for Emotional Health.  Once she has completed the trial she will then go on to do their Cool Kids program next term.  Hopefully these programs will help her with her anxiety (which shows no signs of abating otherwise).

While we were there we also participated in another research project looking at genetics and anxiety (that's Emma doing her cheek swab there).  Now the whole family have participated in some form of international clinical trial - Ashlea and Audrey were in the Inis trial and now Emma, Murray and I have taken part in this one.

While Emma will be having actual therapy to help her with her anxiety I have an alternate plan for the management of my own stress:



Thanks to Aussie friends living in Switzerland I now have a VAST supply of the good stuff!

Tuesday, August 14, 2012

Carnival of Cute



Ashlea attended her very first school athletics carnival today.  She did really well and participated in all her events - wheelchair races, wheelchair obstacle races (above), discus (below), shot put (with bean bags) and of course a relay race.


Ashlea didn't freak out and seemed to really enjoy it.  I also achieved a personal best when I helped Ashlea and her team to 3rd place in the relay race - my best ever finish in a sporting event!

In the early days of disability I would have attended an event like this and been overwhelmed with sadness that my Ashlea had a disability.  Now I attend things like this and love seeing the children and their abilities rather than their disabilities.  Every child at that carnival has overcome more obstacles than most of us will ever face in a lifetime - now that is ability - and it is something to celebrate!

Saturday, August 11, 2012

Blessed

We have been very blessed by our church family at Norwest.

Today all the blokes from Murray's bible study group came to our house to tidy the garden - although I think it was really just an excuse to play with power tools :)

One example of their hard work - this is down the side of our house BEFORE the clean up:


And after:



Notice you can actually get down there now!

Thank you all - Jon, Malcolm, Ian, Mick, Jason, Jonno and Craig - so much - your efforts are very much appreciated.  We feel really blessed and overwhelmed by all of your support.

An extra special thank you needs to go Super Neighbours Greg and Kate who I suspect were behind the idea in the first place and did most of the organising for today - as well as the feeding of the workers after.  Having you guys as neighbours is truly a blessing - and an answer to prayer - a prayer I hardly even knew I needed to pray!  Too soppy?  Maybe - but it's true!


Wednesday, August 8, 2012

My Spy in the Classroom

Ashlea's vision support teacher is a bit of a tech head like me - which is great because he often takes pictures of what goes on in the classroom with the ipad and then uses them to make social stories for Ashlea.  The best bit is he then emails them to me.  It is SO CUTE to get this sneak peak into the classroom.

Here is a picture of Ashlea doing numbers:


Obviously as her vision support worker he 'gets' vision impairment and what she needs but it is very reassuring for me to see her with such a great setup (dark non-slip background, large brightly coloured numbers, sloping board for reading etc).

Here is another one of her doing phonics on the smartboard:



Thanks Mr R - we really appreciate all your hard work.  And I REALLY appreciate getting these little insights into what goes on in the classroom.

Friday, August 3, 2012

Family Update

Now that the photos are finished I thought it might be time for a family update.

Murray
Murray is still off work and going to rehab 3x per week.  He is starting to get back into playing squash and is definitely back into playing computer games (priorities right?).  He had a neuropsych assessment last month that showed vast improvement since his first assessment but still significant memory impairment and problems initiating tasks.  The neuropsychologist felt this would have a significant impact on any return to work and recommended he not even attempt to return until he has been reassessed in 6-9 months.  He also felt that it would be unlikely that he would regain his full level of cognitive functioning and unlikely be able to return to work at his previous level - although he did stress that it is still early days and there is still room for a lot more improvement.  I am using his time at home to try and retrain him in the domestic arts - folding washing, showering children, helping with homework and the like.  If nothing else it might act as good motivation to get him back to work :)

Emma
Emma is still struggling with anxiety.  She started an anxiety group at school this week and is also being assessed to do the Enhanced Exposure Therapy clinical trial at Macquarie Uni's Centre for Emotional Health.  Their programs have a great reputation so we would prioritise that over the school based group (unfortunately we can't do both as it could effect the results of the study). We have also had her on a trial gluten-free diet for the last two weeks to see if that helps with any of her tummy symptoms.  I'm not sure that it's made a difference but we'll see what happens on Sunday when she's allowed to start eating gluten again!  In spite of the anxiety Emma is still a whizz at Minecraft and Skylanders and is up to chapter 12 of her first chapter book - yes I am still bribing her.

Audrey
Audrey is loving kindergarten although she is still completely clueless when it comes to learning sight words - I'm not sure if one day it's just going to click or if this is a sign of a potential learning issue (seeing as ex-prems have a >50% chance of them).  Seriously - Ashlea is better at sight words than Audrey - that is not something I ever expected to see!  At the moment she has a cold which has resulted in some ex-prem-cough-up-a-lung-asthma but otherwise she is her usual princess-loving, dancing, twirling, singing, happy self.  It is such a relief to have one 'low-maintenance' child!

Ashlea
Champion Ashlea is going really well at school.  Her teacher is very impressed by her ability to read sight words and told me excitedly on Wednesday about some words Ashlea had read.  Then yesterday she told me in a rather perplexed manner that Ashlea had refused point blank to read any words that day.  Ha ha.  Seems I had forgotten to warn her about Little Miss's stubborn streak!  Ashlea's kidney function is still great and she has now finally graduated to FORTNIGHTLY blood tests.  Luxury!

Me
Hmmm.  Me.  I'm pretty stressed juggling everyone and their needs.  Most days I wake up and wonder how I am going to get through the day but somehow I manage to do it - although not always very gracefully.  One thing I am enjoying is not having the extra stress of work.  I love that I can go and watch the school Olympathon and the athletics carnival.  I even did Kindy reading groups this week which pretty effectively served to remind me that I am NOT cut out for teaching - I do not have the patience for it and the sight of all those snotty nosed little darlings made me want to come home and shower in bleach.  Otherwise I am filling my time with coffee dates (yes I tried the real thing - couldn't hack it - the caffeine nearly blew my head off) and other less enjoyable tasks like doing our tax returns and filling in large numbers of centrelink forms.