Sunday, November 29, 2009

Aaahhh bedtime

I love this time of day. The kids are in bed. The dishes are done piled up in the sink. The toys are put away neatly strewn all over the floor.

Well, aside from a few little glitches in my tidying up routine, I still love this time of day. Time to sit down with a cup of tea, check emails and blogs, and RELAX. It gets even better when you find an email with this photo in your inbox.

This is from the Brilliant Bill of TAD.



It is a picture of Ashlea's new bed rails - and as you can see they are nearly finished! I don't know about you but I think it looks fantastic. I am very excited about getting it installed and getting Ashlea into her own bedroom. Can you believe we are only paying $250 for this fantastic construction??? Bill said the reason it hasn't been finished sooner is that it has been too hot to go into his workshop recently. Fair call - this weather has been unbelievable.

Hopefully it will be a little cooler this week. We have 5 Christmas parties on offer - we are going to attempt to attend 4 of them. I will post photos of us at all of them so you can watch us disintegrating as the week goes on! I also want to put up the Christmas tree this week too. It might be cheesy but I LOVE this time of year - even the crazy Christmas shopping (which I finally started yesterday).

I have already had my first "Mum - is Santa real?" question for the year (from Emma). I feel bad telling bald faced lies to my children, but it didn't stop me. First I asked her what she thought - and she said yes she thinks he is real, so I agreed with her that he is. I can't believe these questions come up so early in life!! I'm sure I didn't cotton on to the facts about Santa until much older. What do you tell your kids? What do you think of the Santa lie???

Friday, November 27, 2009

The 'Its Not Thanksgiving' thanksgiving post

We don't celebrate Thanksgiving Down Under, and while I am usually not big on adopting overseas holidays I have been reading a lot of blogs of mums and dads who are really thankful for the progress their child with special needs has made this year.

I thought I would chime in with my own list because this has been an amazing year for Miss Ashlea.

In the last year she has:
  • learnt to crawl
  • learnt to W sit
  • learnt HEAPS of words - to the point where she can now tell you what she wants (sometimes). Eg take shoes off, I play toys, I love Mummy/Daddy/turtle etc.
  • not had a hospital admission (!!!)
  • learnt to point (she has just learnt this in the last few weeks). She doesn't point with her finger, rather she flings her whole hand in the direction of what she is pointing at. Good enough for me.
  • had stable kidney function - no deterioration this year - always a good thing
That is a pretty awesome list if you ask me and I am INCREDIBLY thankful for this progress. Of course it makes me a little greedy too...hoping for another year of great improvements to come.

So, Happy Thanksgiving to my American friends, and happy not-thanksgiving-but-we-still-want-to-give-thanks-for-our-children's-progress' to my Australian and other non-US friends. It would be remiss of me not to mention the One it is that we give this thanks to - our great God - the One loves and sustains us each and every day.

Wednesday, November 25, 2009

Special Exposure Wednesday

Due to popular demand...



I have another photo this week that also links back to a previous week's photo - here's another one of Audrey and her ability to fall asleep anywhere.

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

Last week some of your comments got lost - sorry about that. I read them all and approved them all but they didn't all appear on the post. I LOVE comments so am not happy about that and have no idea where they went! Don't let that stop you this week!

Sunday, November 22, 2009

Weekend Wrap Up

This weekend has been HOT!

Yesterday wasn't too bad at 32 degrees (89.6 F). In the morning we had the very exciting job of picking up Emma's school uniform. SO cute. We had to buy the smallest size of everything and it all still swims on her - particularly the sports shirt - it nearly comes down to her knees. At least we should get a lot of wear out of it.

After picking up her uniform Emma had a party at Clown Town - the "best place ever in the WHOLE world" if you're a 5 year old. A small piece of hell on earth if you're a germ phobic mummy like me. We went regardless of my misgivings. She had a ball. I took plenty of hand gel.

Last night the girls begged Aunty Carolin to play Abba Singstar with them. They can not get enough of that game.



Of course Ashlea got involved as well - complete with rock star hair style.



Its funny, over the last few months Ashlea has gone from being the quietest of my children to the noisiest. She LOVES to make all sorts of noise, and is constantly yabbering away about something. She no longer just makes baby babble type noises, it is usually attempts at speech. Mainly it is singing. Often at the top of her lungs. The other day I was in the queue at Target and she was yelling at the top of her lungs T U R T L E (her favourite toy). She thought it was hilarious.

Today was ridiculously hot - 42 degrees in this part of Sydney (107 F). We stayed inside all day in the air conditioning and didn't venture out until after dinner - when it was still 39 degrees. It was bath time so I decided to kill 2 birds with one stone...

Emma in the tub...



Audrey waiting for her turn in the tub...



Audrey refusing to look at me while in the tub...



We thought it highly likely Ashlea would start screaming if we put her in the tub so she had cuddles with Aunty Carolin instead...



We have a quiet week planned this week, and then next week we have 3 special needs Christmas parties to attend. I'm not sure if we'll be able to get to all of them but we're going to try!

Friday, November 20, 2009

Fame...

So we had our 15 minutes of fame the other night on RPA Where Are They Now? - actually it was really only about 8 - 10 minutes - but that's OK.

We were really happy with how the piece was put together. It was a really positive story about Ashlea and there was some great footage of the girls - they all looked GORGEOUS (no bias of course). It would have been very easy to do a 'pity piece' that focused on all the difficulties Ashlea faces, but instead it focused on all her achievements in the last 3 years. We have had lots of positive feedback about it which is nice. We even got recognised by a few strangers - 5th graders mainly - at school orientation yesterday!

Life returned to normal today with a visit to the physio. We tried out standing frames and have decided to apply for funding to get one - we are getting a fairly basic one (much cheaper) that forces Ashlea to do more of the work herself rather than a fancy one that does a lot of the work for her. While discussing the standing frame I got rather excited about the idea of also getting an adjustable table for her to use at home. I then thought it would also be nice to get an adjustable chair as well. If we had a table that was the right height for her equipment then she could either stand or sit at the table with the other children. At the moment Emma and Audrey sit at their IKEA table all the time but Ashlea doesn't have an appropriate chair - she uses a little wooden chair that is too low for the table. I like the idea of them all being at the one table.

The standing frame is called the Dynamic Standing Frame - it is quite affordable (as far as equipment goes) at around $800ish.

.

As you can see it is pretty basic - but the whole point is to make Ashlea do more work when standing up. Also it isn't huge - I am sick of huge pieces of equipment taking over my house. The good news is that the preschool may be prepared to buy one for themselves so Ashlea can use it while there - and so that I don't have to lug this to preschool - along with the walker and the wheelchair.

In the same catalogue I saw these adjustable tables.

We would probably get the tallest one as it would be a good height for her when standing, and we would get it with a cutout (semicircle) shape in one side to make it easier for her to stand.

We're still thinking about what sort of chair would work best. The chair we are getting for preschool (CAP Adjustable Chair) would be good although it may not be high enough. Hopefully with a bit of padding we could build it up so we wouldn't need to adjust the table height every time we changed from walker to stander.


If anyone has a better idea for a chair and table let me know. It needs to be able to be used with the stander as well - the table will become the children's main play table and Ashlea will be able to access it easily - I am really excited about this and hopefully we will be able to get funding through Variety club for all 3 pieces of equipment.

Wednesday, November 18, 2009

Special Exposure Wednesday - Trick Photography

I think I have mentioned previously that I have been learning how to use Photoshop. It is quite fun - but as you will see from this pic I am still quite the beginner. Even so - I've 'cured' Ashlea where no doctor has been able to!

I just need some ideas for what sort of a background to plonk her into. Any thoughts???

Don't forget to check out all the other great Special Exposure Wednesday photos here. And also - tonight's the night! Channel 9 - 8:30pm RPA Where Are They Now? (Australian viewers only).

Tuesday, November 17, 2009

Wheelie good news!

Can you tell from my terrible pun that we have good news on the wheelchair front?

The funding for the wheelchair (Quickie GTX) we applied for just a few months ago has been approved!

Of course there are no actual funds available at present but when they become available the wheelchair will be ordered (there's always something isn't there!?). I would imagine that the absolute latest would be towards the end of the financial year, but I am expecting and hoping for much sooner than that.

Actually there are 2 hiccups this time - seeing as 'they' - the PADP - also funded Ashlea's special pram (the Swifty Stroller), they figure that now that we are getting a wheelchair we no longer need the pram and should give it back. I understand that funds are tight and what not, but really, we still need the pram and I am going to fight to keep it awhile longer.

The pram and the wheelchair really serve different purposes. The wheelchair is for attending preschool and being seen as a child rather than a baby in a pram. We will use the wheelchair as much as possible, but there are times when a pram is more appropriate. The pram has more of a recline in the seat, so if I were going out for the entire day (because we all know that is such a good idea with a special needs child) I would take it rather than the wheelchair as Ashlea would most likely need to fall asleep at some point. Also the pram has a shade and rain cover which make life easier in hot or rainy weather. The pram is lighter and easier to get in and out of the car for short trips into preschool / school pickups. If Ashlea were sick and needed to go to the doctor or hospital she would be more comfortable reclining in her pram. And then there is my personal favourite reason - sometimes you just don't want to be that conspicuous, and you want to duck through the shops with a pram rather than a stare-attracting wheelchair.

I don't think it is being greedy to want to keep both - well I hope not anyway. If we find Ashlea doesn't need the pram after awhile I am more than happy to pass it on to the next person. It has been fantastic and we love it. Which is why I plan on keeping it awhile longer!

PS Don't forget - only 1 more sleep until RPA Where Are They Now? Channel 9, 8:30pm Wednesday 18th November.

Monday, November 16, 2009

American Candy

A new and hopefully quieter week has begun.

We had a great time with my sister on Saturday. The girls were very excited to see her, and VERY excited to see all the 'candy'. I must admit that I am now so terrified of flying that I nearly shed a tear when I saw the word "Arrived" beside Carolin's flight number on the arrivals board. My mother was worried about terrorist attacks and muggings while overseas, I was just worried about the international flights...something about flying over water that is very alarming (to me anyway)!

Note to self: must stop watching Air Crash Investigation.

We all got a couple of t-shirts each as presents - Audrey got a very cute one of a person being chased by a bear with the slogan "Canadian fast food". Wish they had an adult size version of that one. I got a nice Harvard t-shirt so I can pretend I've been there.

The first thing we did when Carolin got home was open up the all the bags of 'Candy'. And I have to say - and I'm sorry to offend my American friends - we didn't like most of it. Funny how people in different places like and dislike different things (vegemite is a perfect example).

We tried Candy Corn - Emma was very excited to try it after seeing it on Wow Wow Wubzy. None of us are particularly fussed with that - its a bit too sweet. We also sampled Hershey kisses - again not great. For my Australian readers they taste like easter egg chocolate - a bit sweet and not creamy like Cadbury chocolate. And for the last clanger - I even didn't like Reeses peanut butter cups which I have heard other people rave about. I actually had to spit that one out as it tasted salty as well (I am on a strict no salt diet due to my Menieres). Carolin didn't bring back any Reeses Pieces which I have also heard people rave about. Who is Reese? And what is so good about his piece???

Now I hope I haven't offended anyone too much. Please feel free to tell me if I just haven't tasted the RIGHT candy to make a judgement! For what it is worth I have heard that you guys do REALLY good ice cream in the US. And we did enjoy the lollies in the shape of eye balls and severed toes and noses - that was fun.

So, what is your favourite 'candy'. What should we have tasted? And as Australians what should we be recommending to our overseas guests?

Friday, November 13, 2009

Friday ramblings

It's been a busy week this week with lots of ups and downs. We've had to cancel our regular therapy busy-ness in order to just get through this weeks busy-ness.

It started with the funeral of my friend's husband on Monday. So so sad. It brought back that collective feeling of sadness that I used to have all the time when Ashlea was a baby - I didn't just feel sad for me and Ashlea but for all the children and families in situations they didn't expect to find themselves in. The funeral brought that feeling back - I was sad for H in her situation but also for all my friends going through difficult situations.

Tuesday was Ashlea's preschool meeting which I have already blogged about.

Wednesday was Remembrance Day which is always sad. We had a service at work around the flag pole - the Last Post always reduces me to tears. For anyone wondering why I get emotional about Remembrance and Anzac Days my Grandfather was an Anzac so I am quite passionate about the importance of remembering the sacrifice of previous (and current) generations. Wednesday night I got my first glimpse of the "Next week on RPA" trailer. I am much more anxious about being on TV this time than last time and was on edge throughout the whole show just waiting for the last minute when they showed what would be on next week. I hate to think how nervous I will be next Wednesday!

Thursday Emma had kindergarten orientation. Don't tell her but that made me feel teary too! The current kindies sang a song to the new kindies - something about look at you you're coming to school. It was very cute but I think all the parents teared up at the thought of their little ones being big enough to start school. I think Emma is still quite hesitant about the whole thing but starting to look forward to it too. She is very friendly and talkative which covers up the fact that she gets very anxious about things - especially new things. The children met their buddies' (year 5 kids who befriend them) yesterday and the buddies had made them a card to welcome them to school. Emma carried hers around all afternoon.

And now the best part of the week - tomorrow my sister gets back from overseas. I am SO excited - don't tell her but I've been a bit lost on the weekends without her (we often disappear to the shops for awhile on Saturday afternoons). The kids are pretty excited too - especially as they have heard about the bags of 'Halloween candy' that are coming their way. Tomorrow night I'm also catching up with my good friend S who is newly back from Ireland - very exciting! Tomorrow is going to be a great day.

Wednesday, November 11, 2009

Special Exposure Wednesday




I had a completely different photo in mind for today...until this happened.

Sleeping child (Audrey) complete with sauce covered face:



But where is she sleeping I hear you wondering...good question. Lets pull back a little and have a look:




She often threatens to nod off during dinner if she hasn't had a sleep during the day - but this is the first time she has turned the chair into a bed!

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

We will remember them



Lest we forget

Tuesday, November 10, 2009

Preschool Planning Meeting

Today we had a meeting at preschool to plan for Ashlea's arrival next year. We had quite a few people at the meeting and quite a few things to discuss!

As well as the preschool director and the special needs teacher, the Spastic Centre sent along Ashlea's OT, physio and the early educator. Unfortunately Ashlea's therapist from RIDBC was unable to attend.

Our list of hot topics included the following:

* disabled parking - the preschool are going to apply for a disabled parking space out the front of the centre

* Ashlea's level of supervision - next year there will be a special needs teacher and a teacher's aide to work with the 3 children with special needs. I'm not sure what their needs are but I'm pretty sure one of them is the child I blogged about on Audrey's first day at preschool - who I am guessing is ASD. He has pretty high needs too so I hope the preschool haven't 'bitten off more than they can chew'. Hopefully 2 staff members to 3 children should be plenty. I stressed to them again that they need to have their eyes on Ashlea at all times. And that means ALL TIMES.

* physical handling of Ashlea - we talked about her use of her walking frame and wheelchair, and how we are trying to get away from carrying her around and moving towards her using her mobility aids as much as possible.

* nappy changing - they have a change table but I suggested they use the floor otherwise someone will end up on compo with a back injury from lifting my little pork pie.

* feeding - I am unsure whether I will 'train' the staff myself or see if I can get a nurse from the hospital to come out and do the training. It would feel strange training people to tube feed Ashlea seeing as our 'training' involved being given the equipment and the child and a wave as we were sent on our way!

* vision support - the RIDBC are going to continue to support Ashlea while she is at preschool. As well as providing a visual assessment of the centre, they are happy to train staff and produce large print materials.

* equipment - the funding application for her 2 chairs is under way - I just wanted to make sure today that the chairs had actually been ordered - someone is checking on that!

After all this discussion we won't really know how its going to work until we 'suck it and see'. I'd be interested to hear from other preschool Mums about how the routine works for their child. At the moment I am thinking that on arrival at preschool Ashlea will be in her walking frame so that she is able to walk around to the different activities and participate. At group time she will be in her corner chair on the floor - same as at morning tea. Usually after that they have outdoor play - I'm not sure whether she should be in her wheelchair or her walker at that stage. Which will give her more freedom? Will she be too tired for the walker? Not sure how that will work yet. When they have free time indoors I think she will need to have some crawling time on the floor - it is her primary method of getting around and she will get antsy if she doesn't get to get down on the floor and move around!

The bottom line is that we are going to have to play it by ear and see what works and what doesn't. I'm pretty excited for her to have this opportunity to go to preschool - I really hope she enjoys it and it is a positive experience for her.

I am REALLY looking forward to Tuesdays next year when both Audrey and Ashlea will be at preschool and Emma will be at school. A whole day of freedom. Well a whole 5 hours anyway! I have been counting down the days since the beginning of this year!

Sunday, November 8, 2009

Camp Outing

The other day Emma and Audrey decided they wanted to camp out in the backyard for the night. Seeing as they are only 5 and 3, and we don't have a tent and rain was forecast, I managed to talk them out of it. They were pretty keen on the idea though, so we settled for a camp out in the lounge room instead.

We decided to do it on Saturday night so it wouldn't matter too much if nobody got any sleep. They have been looking forward to it all week, with Audrey repeatedly asking if today is 'camp outing day'.

The day arrived with much excitement. I was sent off the to shops to buy the camping snacks - the most important part of the event of course - and the camping beds were made up. As you can see from the pictures I don't really like to camp so we made sure we were comfortable. I set up the mattresses on the floor with their doonas and we snuggled in to eat popcorn and untoasted marshmallows while watching the Cars movie. Emma was very excited and there was a lot of talking and getting up and down. Audrey flaked at the first opportunity.



Of course I had to stay in the lounge room with them which meant sleeping on the couch. I am actually pretty used to sleeping on the couch as I am very good at falling asleep in front of the TV - and sometimes not waking up until the next morning!!

Emma declared it the 'best camping out day we've ever had'.

Saturday, November 7, 2009

RPA Where Are They Now?

We have a date for when we are going to be on TV again!

Our episode is airing on Wednesday 18th November - Channel 9 8:30pm (in the eastern states - not sure about others).

We don't get to see the episode before it airs, so there is always some anxiety leading up to watching it...what if we totally embarrass ourselves??? I guess you can all watch and see for yourselves!

For those overseas I don't think there is anyway to view it online unfortunately. Let me know if you really want to watch it and I'll see what I can do.

Friday, November 6, 2009

Mother's Group

Not long after Emma was born I joined a Mother's Group through the local community centre. It has been a great way to meet other mums with children the same age as mine. At first I was a bit worried that MG would be a bit competitive - you know those mums who are always telling you what their child can do, and how advanced their child is compared to yours? Or how great their house / car / whatever is.

Thankfully our group didn't turn out to be like that at all. In fact ours is almost the opposite - if we were competitive it would be in terms of what can go wrong in life!

Out of our group so far:
- 3 of us have lost a parent
- one has secondary infertility
- one is currently going through chemo for breast cancer
- that same one's 5 year old daughter is losing her hearing

And then there is me...extremely premature twins, one left with lifelong disabilities.

Out of this list of shocking things that has happened, my friend N's breast cancer shocked me the most. That reminder of our human frailty and lack of control is what terrifies me as a parent. That is until now. Now something even more shocking has occurred within our little group. One friend's HUSBAND died unexpectedly on the weekend. Something to do with his aorta. Totally shocking. None of us would have expected when we first met that within 5 years one of us would have a child with multiple disabilities, one would have breast cancer and one would be a widow!!

I haven't spoken to her yet. I don't know what to say. "I'm sorry" just doesn't seem to cut it. From my experience with Ashlea though, I now feel that it is better to say something rather than nothing. Saying nothing is like pretending it all hasn't happened.

For those of you who read this who are pray-ers please keep this family in your prayers. Their son is due to start school next year, and my friend H has to now figure out life as a single mum while grieving for her husband.

Wednesday, November 4, 2009

Special Exposure Wednesday

Yesterday it was 38 degrees here (that's 100 degrees for those of you in other climes). When its that hot the only way to play outside is to add water.

Our Western Suburbs beach:





Plenty of snacks:



Pretending to be penguins (you have to imagine a squealy penguin type noise coming out of those mouths):



And kisses from your big sister:



This last photo is my Special Exposure Wednesday photo - I love it even though Ashlea has her eyes closed - look how kissable those cheeks and lips are!!!



Make sure you check out all the other great Special Exposure Wednesday photos here.