Wednesday, June 30, 2010

Special Exposure Wednesday: Artworks

In last week's SEW, I talked about Ashlea's love of preschool - and particularly her love of painting.  One of my commenters asked what she likes to paint.  So, for your viewing pleasure, a few of Ashlea's recent works...

And the artist herself...

As you can see, she has had some assistance from her teacher for some of them.  Ashlea's favourite new thing is to write her name.  Her teacher holds her hand and they do it together.  Nothing short of amazing for this sensorially defensive child who HATES having her hands touched.
For more Special Exposure Wednesday click here.

Sunday, June 27, 2010

Do you feel self-conscious?

Do you ever feel self-conscious when out and about with your special needs child?

In the lead up to getting Ashlea's first wheelchair, I was very apprehensive about going out in public in it for the first time.  Not because I was in any way embarrassed or ashamed of her, but because I felt like it was such a public 'coming out'.  I felt like it would be like going back to the beginning again and feeling like I had no skin.  Prior to having the wheelchair I was under the illusion (delusion perhaps?) that it was possible that people didn't realise Ashlea had a disability.  I felt like I could duck through the shops fairly anonymously, without too many stares.

But the arrival of the wheelchair meant that it was bloody obvious that my child has a disability.  Someone commented on my blog earlier in the year that something about the age of 4 is hard for parents to cope with.  I agree - and I think it is because it is the age of 'coming out'.  Before that your child just looks like a young child - the differences aren't so obvious.  But when they hit 4 and start going to preschool and getting ready for big school, the differences smack you in the face.

Anyway, back to my original point.  The wheelchair.  I have been surprised at how quickly I have adjusted to being out and about with the wheelchair.  I often don't even think about it - except for the when people stare, but mostly people just smile because Ashlea is so cute with her pigtails and sunglasses as we potter around the shops.

The one time I DO feel self-conscious though, is when I see 'before' friends.  People who knew me before Ashlea, before disability.  All my current friends know our situation.  At the birthday party last weekend, I bumped into a 'before' friend.  I haven't seen her much since the girls were born (due to circumstance - nothing deliberate).  Then I saw her a year ago and she asked how the girls were going and when I said they were really good she asked:

So, they're both walking now?

Um.  No.

It's kind of shocking to tell people that your child can't walk.  And they probably never will.  Not many places for the conversation to go after that clanger.

Anyway, I felt self-conscious seeing her on the weekend.  Not because she made me uncomfortable in anyway (the opposite in fact), it was just that it reminded me of how confronting it can be to see a child in a wheelchair.  Of how confronted I still am by the fact that my child is the one in the chair.  There is no denying that Ashlea can't walk when she is out and about in her chair.  The thing is that the denial doesn't belong to anyone else but me!  I can't deny that I have a child with a disability as I carry her to her wheelchair.  I can't deny how different my life is now.  I can't help but think back to life before.  Before disabiltiy and wheelchairs and heartache.

Friday, June 25, 2010

How do you want to be remembered?

The other day I went out to a historic little cemetary not far from us to take take some photos.  I know that sounds morbid, but it really wasn't!  I didn't take any good pictures though as I became fascinated with the old headstones and the things people had engraved on them, and spent most of my time just reading the headstones.

There was one that was absolutely heartbreaking.  This is all it said.  No explanation.  No dates.  The simplicity of it conveys its absolute tragedy:

But that isn't the one that stayed with me the most.

This one is:

Look at that inscription!

I have suffered.


Imagine suffering so much that that is how you would want to be remembered.  I'm really curious to find out what happened in his life.  Maybe things were so awful that he was completely justified in writing that?

Do you think of yourself as someone who has suffered, or is suffering?  I don't usually think of myself that way, although I suspect other people may.  Whenever the topic of 'suffering' comes up at church or bible study, people often look to me to see what I think.  They obviously think of me as someone who 'has suffered'.

Even if in other people's eyes I am someone who 'has suffered', it is not how I would want to be remembered.  I don't want this situation (our suffering apparently) to be the defining thing in my life.  I don't want people to think of me and think of suffering.

If people do think of suffering when they think of me I would rather they think of persevering through suffering.  Or remaining positive in spite of suffering (I can hear all my friends who know what a pessimistic realist I am laughing out loud at this point).

I don't know, I think I'm rambling.  For some reason that headstone has stuck with me.  Imagine being so consumed with your suffering that you felt that was all you had to say at the end of your life.  That there was nothing else to you or your life's work.

I don't want to be that person, who can only see their own suffering, and is so consumed by it that it defines them.  What is the key do you think?  How do you not become that person?  For me I think the key is perspective.

Yes, my life is more difficult than a lot of my friends, but, really, all my children are alive.  We live in a nice area of Sydney.  We have food on the table and a roof over our heads.  We have PLUMBING.  Compared to a lot of people, I am not suffering.

Seeing that headstone really made me think.  It made me think about how I see myself, about how others might see me, but mainly it made me think about how I want to live.

Wednesday, June 23, 2010

Special Exposure Wednesday: Had a good day Mrs Cook!

How do you measure a successful day at preschool?

Ashlea usually tells me she has had a good day by saying:
Had a good day Mrs Cook
Which means she had a good day with her teacher Mrs Cook.

However, she tells me this everyday, regardless of whether it was a good day or a bad day.  So I measure preschool success in terms of dirt and paint stains.

Paint all over her hands...  check.

Paint on her face...  check.

Paint on her clothes...  check.

Yep, another great day at preschool.

Ashlea is absolutely LOVING preschool.  There was a time when I wondered how on earth she would cope in that environment, but she has come so far and is thriving at preschool.  She loves painting and drawing, she loves stories and letters, she loves the pet bird Stormie, she loves her teachers.  Everything.  She loves it.  Her language is improving all the time too and I'm sure preschool is helping with that.  The other day she was having a grizzle because she wanted to see Stormie.  I knew she wanted to see him, but wasn't going to give in until she asked for what she wanted.  Once upon a time she would have just said:
Then over time it became:
Wan' see stormie
On Friday it was:
I want to see him.

Look at all those prepositions (is that what they're called?)!!!

Amazing.  And of course for language like that she definitely got to see Stormie!

For more special exposure wednesday photos click here.

Sunday, June 20, 2010

A big weekend of partying

For the 4 year olds, not the adults unfortunately.

Today was the birthday party Ashlea and Audrey got invited to at preschool.  So exciting - their first party invitation.

The girls had a great time.  And guess what???  There was an ACCESSIBLE CUBBY HOUSE.  I was so excited.  Instead of having a ladder up into the cubby, they had a lovely ramp off the deck.  Here is a pic:

Of course I am now wondering if this might be a possibility for my backyard??  Perhaps with our next lot of FAF funding???  But I digress...

The party was great.  They had the cubby (with slippery dip), a fabulous swing that I could sit on easily with Ashlea on my lap, AND they hired a jumping castle. Ashlea had a ball requesting that I carry her back and forth between each activity.  She loved it all!!  Fortunately Audrey is at the age where she is now quite independent at parties, as I end up having to leave her to her own devices while I help Ashlea participate.  No sitting with the other mums and chatting for me.  I was up and down to the cubby, down the slide, on the swings, in the jumping castle, round and round and over and over again.

But, it is SO worth it to see Ashlea enjoying herself - and enjoying the same things as other 4 year olds.  It is also so lovely seeing Ashlea's preschool group starting to relate to her.  They are starting to become more familiar and friendly towards her.  The birthday girl in particular is very fond of giving her tickles, and always comes up and talks to her.  Another lovely thing was that we weren't just invited to the party 'because everyone was invited'.  Only a few preschool children were invited.  We were chosenAshlea got chosen.  How delightful - I could cry thinking that my Ashlea was chosen to attend a party - something I worried might never happen.

The birthday girls mum went out of her way to include Ashlea, and even made her a special lolly bag full of hair bands and clips as she knows Ashlea doesn't eat (Emma was disgusted as she had appointed herself recipient of Ashlea's lolly bag).  It is so, so lovely when people show their thoughtfulness like that.

All in all a GREAT party!

Friday, June 18, 2010

FAF Funding FIxes Friday Fatigue

I am so tired tonight.  Between spending all my spare time at preschool this week filming the feature length ahem 5 minute preschool movie (it's a tradition), and being woken up at 3am most nights by Audrey trying to cough up a lung, I am tired.

BUT, I had to share some exciting news.

We recently put in our FAF funding application.  This is a $2000 grant (maximum) available every financial year for families who have children with a disability.  I don't know if it is just a NSW thing, but if you don't get this funding already, here is the link to their factsheet.  Go get the funding!!!

Anyway, in previous years I have applied for useful but 'boring' items - for example we used the funding to purchase our twin Mountain Buggy pram - very useful, but not really fun.

I'm getting smarter at this funding caper as the years go on.

This year we applied to get an iMAC and some intellikeys.

I don't know if it is because the financial year is ending, but the application was approved in less than 2 weeks.


We love new toys.  Especially technological ones.

We are getting the basic intellikeys package, along with overlay maker which allows you to customize many more 'keys'. (I will of course write a review once we've tried it out).  It is basically a customizable keyboard for people who aren't able to use a regular one.  We will start with using only 2 or 3 large 'keys' for Ashlea to practise pressing, and then see if we can build up from there.  The long term goal being for her to be able to use some sort of a computer to assist with her schooling as we are not sure yet if she will be able to learn to write.

The timing is perfect, because at the moment Ashlea is obsessed with letters.  Whenever she sees writing she says 'letters', and then will start naming random letters.  At this stage she can't actually read or recognise any letters, but I am hoping this interest in letters (and singing the alphabet song) is a good sign for future literacy.

Don't you love it when funding just 'works'?  And the best part is that in a few weeks it will be July and I can start thinking about what to apply for next.  Any ideas???

Wednesday, June 16, 2010

Special Exposure Wednesday: Good Sitting Mummy

Since having botox in March, Ashlea's legs are much more supple.  She has recently started to do this lovely side sitting ...

And then in the last couple of weeks she has started to do THIS!!!

And even very briefly with no hands...

It has happened so quietly and effortlessly that I barely noticed that she was starting to try to sit independently. Then the other day I was in the lounge room (not paying particular attention to her) and I heard a little voice say "Good sitting Mummy".  I looked over and lo and behold she was sitting up.  On her bottom.

What a milestone.  I can't tell you how excited I am that she is still meeting milestones.  They might be few and far between, but boy do we celebrate them when they are reached.

Now if I ask her to show me 'good sitting' she will try and get up onto her bottom.  She can't always do it, but she always tries.  Once she gets there she can only hold the sitting position for half a minute or so, but the fact that she can get herself into the sitting position is a HUGE achievement. Hopefully she will be able to maintain it as the botox wears off.

For more great Special Exposure Wednesday pics click here.

Monday, June 14, 2010

Long Weekend

We have just had a long weekend in the land down under. It was lovely. We did NOTHING. No outings. As little housework as possible. We barely even set foot in the backyard. There was a fair bit of TV watching and Wii playing though. Pretty much from dawn 'til dusk (please don't tell the parenting police). It was just what we all needed. The kids all have coughs so it was nice to just hang around at home.

Audrey's cough is the worst out of the girls, and she regularly wakes me up at 4 in the morning because she can't stop coughing. Today I didn't mind as I figured I could watch the soccer while I was awake.

Wasn't that worth it?

I did manage to squeeze in a child free outing - to Vivid. I'm not going to post any of the photos I took because, basically, I'd rather post photos of the girls!

Especially for Bron...more beanie photos.

'Grandma' Ashlea:

'Butter wouldn't melt in her mouth' Audrey:

Emma - the flying nun:

Also, a reminder!!!
For those coming to my house for morning tea next week.  Don't forget - next Tuesday 22nd June. I'm looking forward to having you all over. So far it is me, Sarah, Ally, Susan, Kathy and hopefully Rosalie. I will f***book you my details.

I hope you all have a good week.  We have a busy one coming up.  I am filming, and Carolin and I are producing the preschool DVD this year.  Because I'm just not quite busy enough...

Saturday, June 12, 2010

Aarghhh...showering advice needed!!!

HOW do you shower your special needs child without getting saturated???

As you know, after slipping while bathing the children last week, I have declared our house a bath free zone.  I am not prepared to risk another fall, so now we just use the shower.  Showering the children all together is easy if I let Ashlea crawl on the floor with her sisters - although it doesn't work for hair washing night (and probably isn't a particularly good long term option).

Tonight was hair washing night.

I think the whole neighbourhood is now aware of that fact, as there were a few choice, loud words from me as I attempted to shower Ashlea and not get wet.

So...the specifics...I need to know...
- what shower chair do you use?

- how do you get your child into the chair?

- how do you position yourself to not get wet?

- is your shower head fixed or on a rope?

- have you modified your bathroom?  if so - how?

and anything else you can think of that might help?

At the moment we are trialling a shower chair that looks very similar to this one.

The worst part about it is getting Ashlea in.  I have to lift her, and as it has no foot plate (or not one that you can stand on anyway), Ashlea stiffens her whole body and refuses to sit down.  I have to somehow karate chop her in the middle to get her to sit.  Not easy when she is suspended in mid-air.  Tonight I ended up holding her by one arm and one leg and almost tossing her in.  Neither of us was happy, and it was definitely NOT safe!

I think we will have to use one that is low enough to the ground for her to do a standing transfer into.  It won't be good for my back, but I think it has the potential for less injuries in the long term!

Things I have learnt so far...
- do not give the shower hose to a 4 year old to mind while you get the shampoo

- do not give that giving it to the 6 year old will be any better

- the shower hose has a mind of its own

Please God don't let Ashlea repeat any of the choice language she heard tonight at Sunday School tomorrow!!

Obviously we are in need of all the showering advice we can get!! Please leave me your tips!!

PS In kind of related news, I found some great non-slip shoes today.  They are these Sketchers.  Who knew they had a whole range of specifically non-slip shoes???

Friday, June 11, 2010

Where's Audrey been?

Can you guess where Audrey went today?

The clues are stuck to her face...

Chocolate biscuits....


There were a few lollies thrown in as well.  Have you worked it out???  That's right - its Grandma's house!!

Thanks for those who prayed and sent positive thoughts regarding my post on Monday.  It appears at this stage that Murray's mum's cancer hasn't spread.  She had surgery to remove it today (took something like 8 hours) - at this stage it appears to have gone well.  My friend T's surgery went well and I think she came home today.

Other than that, the only thing going on around here is a whole lot of coughing.

How many days until summer???

Wednesday, June 9, 2010

Special Exposure Wednesday: Mummy's Little 'Helper'

Ashlea has developed the delightfully normal habit of going around behind me and emptying out the kitchen drawers.

I love it - although I am trying to keep her out of the plastic cupboard at the moment - it is temporarily tidy thanks to Grandma!

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

Monday, June 7, 2010

Strength for today...

We sang the great old hymn 'Great Is Your Faithfulness' in church yesterday.

There is a line towards the end that says...

Strength for today and bright hope for tomorrow

Today is a day that requires strength.

For me it only requires a little bit of strength.  Strength to get Emma to school, the twins to swimming, return a shower chair... you know the usual stuff.

For Murray's mum it requires a lot of strength.  Today she finds out the extent of her cancer, if it has spread and what her treatment options are.

And for my dear friend T, it requires an unimaginable amount of strength.  Despite having her breast cancer removed and doing chemo, she still has a 40% chance of recurrence.  40% is too high a risk when you have little kids. Today she is having a double mastectomy. 

So, for those of you who pray, please pray for strength - for me (a little), for Murray's mum (a LOT) and for T (a truckload).

And the bright hope for tomorrow???

** except we couldn't dot the i or cross the t's without ruining the look of the photo **

*** go here for an explanation if you're a confused non-Sydney-sider ***

Friday, June 4, 2010

Winter Slump

I think I'm in the middle of a winter slump.  Its cold.  School holidays are still weeks away.  I can feel myself sliding.

The other day I was talking to a friend, who asked me how I was feeling.  She had said that something I had told her made her feel sad.  She asked me how I felt.  Could I answer?  NO.  Because I am still emotionally stunted and never tell anyone how I feel. 

What I wanted to blurt out was how unhappy I feel at the moment.

I just couldn't say the words.  I don't know if it was because I didn't want to admit it, or whether it was just too hard to say the words out loud.  It's much easier just to type them 'out loud' to you guys.

Now, I don't think there is any huge reason to worry.  I don't think I am depressed.  Things aren't dire.  I just feel tired and ...  I don't know what...

In need of a holiday perhaps???

I did find a bit of an antidote to my slump yesterday when I went to preschool drop off.  For the first time EVER, both my twins were invited to a birthday party!!!  What a lovely moment.  I nearly cried.

They have been to parties before, but this is the first ever preschool party invite for either of them.  I am so thankful to the birthday girl and her Mum for including Ashlea.  One of the things that makes me sad about Ashlea's disabilities is the idea that she may not have close friendships and get invited to birthday parties, so it was a very special moment to receive Ashlea's first party invitation.

Our first party invite.  Can I include this as an 'official' milestone???  It has certainly lifted my mood I can tell you!!

Do you have any other tips to help me through my winter slump?  I did some furniture re-arranging yesterday.  I don't know why, but that always seems to help too!!

Wednesday, June 2, 2010

Special exposure Wednesday: Favourite Toys

Does your child have a favourite toy? Over the last year or so Ashlea has developed some specific toy 'loves'. OK they are more like obsessions rather than loves. It is delightful to watch. She showed very little interest in toys for her first couple of years, so it has been lovely to see her develop some favourites.

Her first ever favourite toy was this turtle. It is still a big favourite and regularly gets played with. Her therapist from the RIDBC brought it out as a loan never went back. Ashea was instantly smitten.

Another favourite is her Night Garden Bridge - you may remember that this is the one she asks for loudly...but her pronunciation is a little off so it sounds like she is swearing. Wan a BIDGE she says. (Say it out loud to see what I mean).

I am so used to seeing Ashlea's 'up close and personal' style of play that I don't notice it anymore. But for those of you who don't have children with a vision impairment....this is how kids with low vision explore the world - with their fingers and by bringing the object up very close for a good inspection. Ashlea likes things to be around 5 - 10 cm from her eyes for best viewing.

And of course, all my girls loves penguins. Here is Ashlea cuddling Audrey's 'mumble' (from Happy Feet for those who aren't indoctrinated).

What is favourite in your house?

For more Special Exposure Wednesday photos click here.

Oh and in other news... thanks for the sympathy regarding my tooth.  I went to the dentist yesterday and he said it doesn't look cracked, so to give it a week or two to heal, and hopefully it will be OK.  Phew.  It is still quite sore, but a little better today so hopefully he is right.