Thursday, December 31, 2009

New Years Neuroses

Today is New Year's Eve.  Time to reflect upon the year that was, and look forward to the year that is coming.  To tell you the truth I am not a huge fan of New Years.  Rather than excitedly anticipating  what great things might happen in the next 12 months, I am more likely to worry about all the bad things that might happen (sorry to all the optimists out there - but I'm sure all the worriers will be able to relate!). 

I'm not a total kill-joy - I do have plenty of hopes for 2010 as well...Hope for:
continued good health for our whole family (well, you know what I mean)
more great progress for Ashlea - improvement in speaking particularly, enjoyment of preschool, a continued blossoming of her (rather bossy) little personality
for Emma to have a great first year at big school - that she enjoys it, makes friends, thrives on the learning
for Audrey to continue to enjoy preschool, and for the chance to spend time JUST with Audrey on Fridays when Ashlea is at preschool and Emma at school (Audrey has never before had the luxury of being 'just Audrey')
that no one vomits... (have I mentioned my phobia about vomit before???)
that we get a ramp built in the backyard

that Ashlea gets her wheelchair

that Ashlea miraculously gets up and walks and we can send the wheelchair back...


Its just that my fears tend to play louder in my mind than anything else...Fear:
that Ashlea's kidney function deteriorates

that Ashlea gets really sick and ends up in hospital or ICU

that 2010 might be a close family member or friend's last year

that we will get gastro and vomit (highly likely seeing as Emma is starting germ big school) 

that Emma hates school and struggles to make friends

that my dizziness gets worse again...
I guess the really big fear though is (and always has been):
'will something bad happen to Ashlea?'
Ever since she was born I have worried about something bad happening...and we got perilously close to that bad thing happening a few times.  Its a pretty hard fear to shake.  And now when New Years Eve rolls around I wonder...will something bad happen this year?


What are your hopes for 2010?  Do you have any fears? Which wins out in your head...the hope or the fear?

Sorry for putting my negative spin on NYE!!  Its not that I'm not looking forward to 2010 - I am actually looking forward to it more than previous years - there are lots of big things happening for us this year.  Its just something about the reflecting that we all do at this time of year that I don't like - being an 'anxious type' it presses my worry buttons.

We are actually going out to see the fireworks and have fun in spite of my dislike of the holiday.  We are going to the Lord Mayor's Picnic again this year.  It is a huge picnic for children with special needs - free food and entertainment and a great harbour side viewing spot for the early fireworks.  Its perfect actually because you can be at home and have the kids tucked up in bed in time to watch the midnight fireworks on TV!

Tuesday, December 29, 2009

Resolutions

Do you make New Years resolutions?

With 2 days until New Year's Eve I have started thinking about resolutions.  I have only ever successfully made and kept one resolution.  Two years ago I decided to read the bible from cover to cover in a year - and I did it - last year and this year.  I will try and do it again next year too.

Having perfectionistic tendencies I can of course think of millions of things I think I could or should be doing better, and could thus write a list a mile long of things I want to work on in the new year.  However I know that if I have any chance of keeping my resolutions they have to be achievable.

Here is the short list:

* pray.
Last year when I read the bible I used to pray as well.  This year I have gotten out of the habit (unless there is a crisis of course!).  I would like to be more prayerful about my life, others lives, all sorts of things.  This is my top priority resolution - if I only keep one I want it to be this one.  I think this is fairly achievable as I am already making the time to read the bible - all I have to do is pray a little afterwards.

* exercise a little.
Basically I HATE exercise with a passion.  I have been told however, that walking is very good for you - not just for your physical health but for your mental health.  I quite like the idea of having half an hour of peace and quiet to go for a walk BY MYSELF in the morning before the craziness of the day starts.  The difficulty with this resolution is that it means getting out of bed earlier than I'd like.  Which would also mean going to bed earlier than I'd like.  Chance of success on this one is probably something like .1/10.

* try to tame my tongue.
Sometimes the things that come out of my mouth horrify even me!  This is a hard goal to put into practise, so I am going to set some guidelines.
1.  Pray for help!
2. My guideline is going  to be to try and speak to the children the way I would speak to my friends (why is it that family always get the least patient version of you rather than the most?).  If a friend really pissed me off I would bite my tongue, but I find it really hard to bite my tongue with family.

* be more consistent with disciplining the children.
We have a system of rewards and time out for discipline, but I often don't enforce it.  Often I am tired and fed up and can't be bothered to deal with the scene that will occur if I try and enforce something so I let things slide.  I want to be more consistent with use of rewards and time outs.

* spend less time on the computer.
Ouch - this one is going to hurt! Sometimes I'd rather ignore the drama in my real life and read about other people's dramas. I don't think I need to spend less time on the computer - just limit it to the evenings when the kids have gone to bed... maybe? Haven't thought this one through yet - I just know I feel guilty for ignoring the children and sitting in front of the computer screen (rightly so).

So, is 5 resolutions too many? It is really only 4 because even though people keep telling me to take up walking I know I'm not going to do it!  Is 4 unrealistic given the busy-ness of my life?

The summary (so I can remember them) is:

* pray
* parent
* prose
* 'puter

For me the secret of keeping resolutions isn't starting out with lots of enthusiasm, it is deciding in advance that WHEN you fail (not if ) you WILL get back on track and not give up altogether.

So, what (if any) are your resolutions for 2010?

Saturday, December 26, 2009

Christmas Unwrapped

After all the anticipation, Christmas is now over for another year.  We had a great day - I hope you all did too.

The kids woke us up at 6:30am which wasn't too uncivilised  - except that I had been up until nearly 1am wrapping presents.

The girls had a great time opening their gifts.  Their favourite presents this year were the fur-real chicks...





I hope they are fairly sturdy as they are in danger of being loved to death, having been carried around every minute since yesterday morning.

Ashlea was able to get into the whole Christmas present thing a lot more this year.  I even heard her say "I got a present" which was very cute.  Pretty much everything she got was "In the Night Garden".  I think we must own their entire toy range by now.



The surprise hit present of the day was this laughing lion that Carolin bought for Ashlea  We weren't sure if she would love it or hate it as she often hates toys that make noise.  The lion  has a motion sensor and whenever it senses movement it rolls around on the floor laughing hysterically - and surprisingly it was a huge hit with Ashlea.  She chased it around, laughing with it, for ages.  At one point she even had it pinned down at the neck, laughing hysterically as it tried to roll away from her.  Hmm...possibly a good idea we didn't get that kitten I was considering for Murray's birthday...



The most fun came at the end of the day when everyone had gone home, and it was just us and a huge pile of wrapping paper.



All in all it was a great day.  Today was more relaxing.  I love Boxing Day - we usually just hang out at home, eat leftovers and play with our new toys (or gadgets in the case of the big people).  The silence was only interrupted by one almighty tantrum from Ashlea. As we were putting the kids in the bath Ashlea started fussing.  I thought it might have been from all the noise so we ignored it for awhile.  The fussing soon became wailing.  And howling.  Murray was bathing the girls and starting to get frustrated so I went down to see what was going on.

I marched into the bathroom ready to tell Ashlea to 'just stop it' - because we all know how effective that is at getting a child to stop having a tantrum.  After demanding of her "What's wrong?" this was the reply I got...

(amid much wailing of course)

                   'Ding dar' (translation: Singstar)
                   'Aunty Calola' (Aunty Carolin)

She wanted to play Singstar with Aunty Carolin. 

SO cute! A real, bona fide tantrum!  You know your life is slightly different to everyone else's when you see a tantrum as being a major milestone rather than a pain in the neck.  After the bath Ashlea did indeed get to play Singstar with Carolin - although she doesn't appear to be as much of a fan of Queen as she is of Abba. And just to reassure you, at no time did any of the (completely sober) adults ignore the children's cries of protests and continue singing "We are the champions" at the top of their lungs.  Nope.  Not in this house...






Thursday, December 24, 2009

Merry Christmas

Here is the Christmas newsletter for 2009...sorry to those who haven't received their snail mail copies yet...

Well ‐ it’s that time of year again! The tree is up, the children have already sat on Santa’s knee three times, parties and concerts are in full swing – it must be time for some Christmas news.

This year has been our least eventful since the twins were born! Life for the grown ups has continued on without much change…Murray is still working for the Police, still playing squash and killing orcs in computer games. Alison is still working for ACU, chauffeuring children around and eating a lot of chocolate. The most notable event of the year was appearing on ‘RPA Where Are They Now?’ We were really happy with the story and the way it showed all of Ashlea’s achievements. Don’t worry if you missed it…I have it on tape…come over for a cuppa and I’ll subject you to it we can watch it. As usual we have time off after Christmas and would love to catch up with you if you are around.

One new hobby for Al this year has been starting a blog (that would be this blog...just in case you're wondering). For those of you who want to keep up with our news you can read along online. Actually for those who read the blog there is nothing new to write in this Christmas letter – you are already up to date!
 
Emma is now 5 years old and off to big school next year – we have purchased the school uniform (all size 4 and WAY too big) and are just psyching ourselves up for getting her there by 8:55am every.single.day. As you can guess by the size 4 uniform Emma is still a tiny thing at 104cm and 16.4kg. I asked her what her highlight of this year was and she could only recall as far back as the weekend – the special party with Santa, presents and a chocolate fountain. Emma has continued having swimming lessons this year and has also recently started learning the piano and just ‘performed’ in her first concert. Her other passions include playing Wii (she is the family champion) and watching Escape from Scorpion island. She keeps telling me that I won’t be able to find her when she is eleven as she’ll be on Scorpion Island.

 
 

Audrey is catching up to Emma fast. She is 99cm and 14.8kg. She started preschool in April which she has absolutely loved. When I asked her for her highlights of the year she said she likes: chocolate fountains, playing at preschool, ice cream, swimming and doing bubble cheeks ‘so I don’t get water up my nose’. She still loves all things penguin although letting her watch March of the Penguins proved to be a bit of a mistake.

Audrey is now officially caught up in terms of her prematurity. When she turned 3 she had a developmental assessment and scored well within the normal range for all areas tested. Audrey’s only drama this year has been developing a little bit of asthma but so far it is pretty minor.
 
Ashlea has had an AMAZING year. As usual the smallest person in the house has the biggest news. Ashlea is still little at 15.1kg and 91cm. We have tried hard this year to get her to grow – but have only had success with her width rather than her length! She has continued with physiotherapy, occupational, speech, hydro and vision therapies. The only new thing this year was that she had botox in her legs to help reduce the spasticity. It has worked really well, however it only has a short term effect so she is due to have more next March.


In February this year Ashlea learnt to crawl and hasn’t stopped since. She is very fast – especially if there is an open door in sight. Since then she has also learnt to W‐sit (she still can’t sit on her bottom unsupported), has recently started pointing, has learnt HEAPS of words, has had stable kidney function and NO hospital admissions.

But wait – there’s more! Our wonderful church purchased a walking frame for Ashlea during the year so she can now potter around in the backyard with Emma and Audrey. Ashlea has also developed some definite obsessions preferences this year. She is addicted to In The Night Garden, loves her toy turtle (actually if you are ever out shopping and hear a child yelling ‘T U R T L E ‘ at the top of their lungs come over and say hi – it is undoubtedly us), and her favourite song is Dancing Queen. Actually all the girls love to play Abba Singstar with Aunty Carolin.

Next year Ashlea will start preschool 2 days a week. She will attend the same preschool as Audrey, and will have a special needs teacher or assistant with her at all times. The preschool have purchased a standing frame, chair and floor seat to accommodate her needs. We have applied for funding for a wheelchair (which has been approved ‐we are just waiting for availability of funds) so she will attend preschool in her chair and we will probably take her walking frame as well so she can have some freedom to walk around to the different activities just like the other children do. We are very excited about her starting preschool and hope it is a great experience for her.


A big thanks again to all the people who help us along this journey – the washing folders, child minders and Ashlea’s assistants at Noah’s deserve particular mention, as well as all those from church who contributed to Ashlea’s walking frame and those who pray for us regularly. We couldn’t do it without you all! We appreciate your prayers for our family and particularly for Ashlea’s health and development.


We have recently studied the book of Revelation at church and been reminded of our great hope for the future. Al created this picture for an exhibition at church based on Revelation…it sums up what we are looking forward to. Not just the day that we will be healed and whole, but also the day when all our sin will finally be behind us.

Oh what a feeling!

We hope you have a wonderful Christmas as we celebrate our Lord’s birth and look forward to the day He will return.

Lots of love

Alison Murray Emma Ashlea & Audrey

Tuesday, December 22, 2009

Oops - she did it again...

Oops...Audrey fell asleep at dinner time again yesterday.




The question is WHERE did she fall asleep?  I did a lap of the house looking for her, and then realised that the last place I saw her was near the dining table.



I have no idea what possessed her to go and get right under the table...but there you have it.  Can you see her under there?  No wonder I nearly had a heart attack wondering where she was!





Oh and some good news - I have finally posted my Christmas newsletters so you should receive them shortly - assuming that the mail strike ends and you live in Australia.  Those who live overseas won't get theirs for awhile.  And those who are overseas who are getting a little something extra with their newsletter - like a copy of the TV show we were on and perhaps a packet of tim-tams will have to wait even longer - as I haven't made any copies of the show yet and any tim-tams brought into the house may or may not have already been consumed (I'm not admitting to anything!).  You know who you are Lacey, Jenny and Barbara.

Saturday, December 19, 2009

Preschool Graduation

This week was the last week of preschool for the year, and Emma's last day of preschool forever.  Both girls had preschool parties and concerts to attend.

Here is Audrey on the stage doing her thing...  She has loved attending preschool and has adapted really well.  She got right into the concert:



 

Receiving her preschool portfolio...




Sigh...she is so grown up now!

Emma's concert was the following day.  It has taken 3 years but Emma is now able to co-operate at the concert.  I have used the preschool concert as my measure of school readiness and it has taken until this year for her to be able to stand on stage and sing and do what she is meant to.  Usually she is doing her own thing and trying to get everyone's attention.  Here she is singing AND doing the actions:



Of course she still did need to call out to the entire audience at one stage..."I'm SWEATY".  In her defence it was 40 degrees celsius that day.

 


The high point was at the end of the concert when Emma played the piano.  We were so proud.  She played Jingle Bells (one hand only) and did really well.  Just quietly I thought she might have freaked out at the last minute and refused to play but she did it and enjoyed it.


Then she got her portfolio.



And with that she is no longer a preschooler.

I think she feels a bit sad about finishing preschool (as do I), and a bit apprehensive about starting school (as do I).  We are all happy to be on holidays until the end of January though!

Sorry for the quality of some of the photos - I had to either chop or pixelate out other children.  Also I was on a funny angle for the portfolio photos and ended up needing to chop out unflattering photos of the teacher's backsides - I should be nice to them as we still have another 2 year there with the twins!

Wednesday, December 16, 2009

Special Exposure Wednesday

Ashlea's physio at the kids hospital arranged for these hand and knee pads to be made for her so that she can crawl around on the concrete in our backyard.



We tried them out this afternoon.  Lets just say she was not a huge fan...

 
 
Once the hand pads were removed she calmed down and decided to explore a little...



Her hands didn't seem to sustain any damage while crawling on the concrete, so I guess we'll try it again another day!

Don't forget to check out all the other Special Exposure Wednesday photos here.

Monday, December 14, 2009

A good laugh

11 sleeps until Christmas.  Shopping not finished.  Cards not started.  So what am I doing?

Wasting time on youtube of course.  It was worth it though - I needed a good laugh.  If you do too check out this video.

Friday, December 11, 2009

The J Word

If anyone wants to know how NOT to get comments on their blog...just mention the J word - Jesus.  You have been warned...I'm going to mention Jesus.

On Wednesday night I had the privelege of attending the Jesus Club's annual Christmas play.  The Jesus Club is a group that runs at our church for adults who have an intellectual disability.  Every year they put on a Christmas play and every year it is fantastic.  Often it turns out to be the best thing I have attended at church all year!

I can't tell you enough how much I love going to this night.  The first time I went I was blown away.  To be honest it restored my faith in humanity a little - to be reminded that there are people out there who can see past a person's disabilities and see them for who they are - people loved by God. 

I will admit to quite a few tears throughout the show usually.  Seeing how proud and excited the members are to put on the play, seeing how much love and respect the volunteers show to the group members, seeing our church packed full of people supporting this great ministry. 

It is also an incredibly humbling night.  To have the story of the gospel told out by the group members is an incredibly moving experience.  It always reminds me of that verse in the bible where it says:

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.
1 Corinthians 1:27

Never has that verse seemed so meaningful than at Jesus Club.  Here are people the world considers foolish and weak - yet they were

shining like stars in the universe as they held out the word of life
Philippians 2:15-16 (paraphrased)

What a great night!

Wednesday, December 9, 2009

Special Exposure Wednesday - Toys

My kids have way too many toys.  The other day however I was wondering how many families play these games....

See dolly get an NG tube?



See Dolly use a bath aid?

 

See Dolly practise using her walker?

 

And it isn't just Dolly who cops it...




These aren't staged pics - this is how I find the toys - although I will confess to providing the tape for Dolly's NG tube.  I often overhear toys being subjected to physiotherapy or medical procedures by Emma or Audrey, and it is not uncommon to find them re-enacting therapy of some sort.

Do your non-SN kids do this too?  Or perhaps even your SN kids do...Ashlea's play skills aren't that advanced yet.

Don't forget to check out all the other great Special Exposure Wednesday photos here.

Monday, December 7, 2009

Thanks Bill

Ashlea's big girl bed is ready!

This is the wonderful Bill from TAD standing beside his handiwork...



Ashlea couldn't wait to check it out.  While I was making the bed she kept saying "Lie on the bed", although it sounded more like "Loi on a beedddddddd" - she was channelling a little Kath and Kim with her accent.  As soon as we put her in the bed she crawled all around it - every time she came to a new Night Garden character on the doona she would shout their name in excitement.  Piggle!  Uppy Daisy!



Of course then everyone wanted to get in...



The first night in the bed was a resounding success.  I wasn't sure how things would go as it is the first time Ashlea and Audrey have had separate rooms.  It feels a little sad to separate them - I've kept them in the same room up until now as I felt there were social benefits for Ashlea.  I still think Ashlea would benefit from sharing a room - the problem is her room-mate doesn't benefit from all the night time activity!  Last night they both slept for nearly 12 hours and in the morning Audrey still said "I didn't get enough sleep last night Mum".  Hmmm...I think she takes after her dad.

THANK YOU BILL!  And thanks for fixing the front door while you were here too!

Saturday, December 5, 2009

I see Santa

This week has been party week.  We have been to 4 Christmas parties and the kids have had a ball. 

First up was the RIDBC party.  This one was great for Ashlea as it was at their centre - which meant she could crawl around to her hearts content.

They hired a music therapist to wander around and sing and play instruments with the children.  Ashlea loved her and requested Dancing Queen and Incy Wincy Spider.



Emma tried to collect every single helium balloon in an attempt to fly...or at least float.  In case you're wondering it takes a LOT more balloons than that to get even a small 5 year old off the ground.



And you can't have a Christmas party without Santa and presents...



Ashlea's tolerance of the big fat man - as seen in this photo - has improved ENORMOUSLY since our first unsuccessful photo attempts. So much so that in the car on the way to the second party she was saying "I see Santa".

The second party was a Christmas concert with Santa at Parramatta Westfield in conjunction with the Spastic Centre.  It was fantastic.  There was free food, a concert (which Ashlea hated), show bags for the kids with heaps of stuff in them - and even a show bag for Mum that contained a $100 Westfield gift voucher!  As I said Ashlea hated the show and spent the whole time howling "Crawl on the floor" - so I had to let her crawl around on the shopping centre floor.  DIS-GUSTING.



 

 

The 3rd party was the Spastic Centre Christmas party - otherwise known in our house as 'the one with the chocolate fountain'.  For lunch today we had strawberries and marshmallows dipped in chocolate, followed by fairy floss, followed by Paddle Pops after which we made a return trip to the chocolate fountain and devoured this:



There were heaps of activities...



 

And of course another trip to Santa and more presents.



The last party was a far more relaxed affair at a friend's house.  Ashlea made herself at home and crawled all around their floor (and came home black) - the only thing that set her off screaming at that party was when the 'band' played - and by band I mean the host's teenage son and his mates.

Wednesday, December 2, 2009

Special Exposure Wendesday

I have a special photo for today.

At church we are currently studying the book of Revelation which has been fantastic.  There is so much imagery in the book that at the same time the church is having an art and photography competition.  There are several categories you can enter, but the category I have chosen is called 'new beginnings'.

This photo is my entry.  It is actually 4 photos combined into one - with a lot of photoshop involved!  I love the result.  It is a little glimpse of the future - of what it will be like for Ashlea in heaven - healed and whole.  I also love the feeling of joy and freedom the picture gives - the promise of freedom from sin and sickness and everything that weighs us down in this world.



Don't forget to check out all the other Special Exposure Wednesday photos here.