Friday, August 27, 2010

Stress

I'm feeling a little overwhelmed at the moment.

Life isn't any more stressful than usual, its just that sometimes it feels more overwhelming than at other times.  And its the little things that are starting to push me over the edge.  Those little things that happen, or have to happen every.single.day without fail in order for life to continue.

Things like...
- making up medications
- making sure we have enough of the medications as well as current scripts (anyone else feel like they're at their pharmacy nearly every week?)
- making up formula
- 2nd hourly feeds
- cleaning feeding equipment
- lifting the wheelchair in and out of the car

There are also the things that don't need to happen every day, but they still happen.... things like Ashlea having a screaming fit every night at bedtime.  She is especially vocal tonight as she had a late cat nap this afternoon - so her strength for protesting has been renewed.

I sound like a whinger right?  I really try hard not to whinge, and I don't even feel like I need to have a whinge about these things as such.  I don't mind doing each of those things, it is just the unrelenting monotony of these tasks.

I suppose a lot of parenting, special needs or otherwise is monotonous, but I guess that as your kids get older you can be a bit more flexible.  There is no flexibility in our routine.  No let up to the daily things that need to be done.  Anyone else have some of 'those' tasks that just have to be done?

But the really big worry at the moment is MONEY.  Or rather lack thereof.  We always run at a bit of a loss, but my emergency dental treatment has pushed our credit card debt to a limit that is just frightening.  Maybe I should have just got them to pull the tooth out?  At least it would have saved me over $2K!!  Anyway, I am thinking that I am going to have to increase my hours at work from 1 day a week to 3 days.  I just don't know how I will cope physically and mentally with doing all the things I do now, but adding in 2 extra days work.

Working SN mums....I need your help!  How do you manage to get everything done???  I know a lot of you do it - I just need to know HOW!!

Wednesday, August 25, 2010

Hat On


The scene: Preschool morning tea.

The children are getting ready to go outside and play.  A small girl sits in her wheelchair with a colourful hat on her head.

Presently she takes the hat off and throws it on the floor.

Her teacher patiently places the hat back on her head.

The child rips it off and tosses it on the floor.

Again.

And again.

The teacher patiently explains to the child that to go outside and play she must wear her hat.  It is a rule at preschool.

The child continues throwing the hat on the floor.

Eventually the teacher explains that it is going to be a very boring morning tea as they will be staying under cover while everyone else plays outside - and that the child won't be able to go on her favourite equipment - climbing up the ladder to the cubby house (with assistance of course!).

The child pauses for a moment then tosses the hat on the floor again.

They sit, not moving, while the other children play.

Eventually a small voice is heard from the child:

"Hat please"




Edited to add don't forget to check out the rest of special exposure Wednesday here.

Sunday, August 22, 2010

I got it on film!!!

For those who haven't seen it on f***book yet, I got some video of Ashlea pulling up to stand.  Enjoy!!!

Friday, August 20, 2010

Botox, Building and Big Milestones

Its been a busy few days in our house.

Busy with building, because work on our ramp has finally begun! Ashlea has discovered she can crawl all the way from the back door to the middle of the yard ALL BY HERSELF. Unfortunately we still have that bat shit situation going on so it isn't ideal for her to be crawling around on the ground. However once that problem gets solved she - actually all of us - will be very happy. Sadly it will be costly for me as she is going to wear through many pairs of pants crawling across the wood and concrete.



We have also been busy because Ashlea had botox today - her 3rd series of injections. They did the same muscles as last time (hamstrings and calves). When they examined her they noticed that the muscles at the front of her legs were showing signs of spasticity, but as she is still able to crawl and move freely they didn't botox them this time, but they did say she may need those muscles treated in the future.

I asked the doctor another of the 'hard questions'.  Even though I know that Ashlea is unlikely to walk, I still felt the need to ask "Will she walk?".  I have accepted that she won't, but then she keeps surprising me with her achievements, and so I have started to wonder... maybe... what if .... should I get my hopes up???  The doctor's feeling was that as someone with a GMFCS level 3 cerebral palsy, she could possibly walk with a walker, but not independently.  Which is what I expected him to say.

And you know what?  I'm not disappointed with his answer.  If (and that is still a big IF) she could learn to walk with a hand held walker - and if she could use it for a reasonable amount of time, that would be a HUGE achievement - something that no one would have predicted for her.

Funny how your perspective changes.  Once upon a time I would have been devastated to hear that her only chance of walking was with a frame - now I think that if she can master walking with a kaye walker I will be over the moon.  I'm still not convinced it is a realistic goal, but we are going to aim for it anyway!!

And now for the Big Milestones of the week.

Firstly, Emma has lost her first baby tooth.  It's very exciting and I have to remember to play tooth fairy tonight otherwise there will be a very sad girl tomorrow morning.



Flattering photo I know - I'll start save for her therapy now.

But the really BIG milestone of the week, is that Ashlea pulled herself up to standing ALL BY HERSELF.  Well kind of all by herself.

If an adult is sitting on the couch, Ashlea can crawl over and push up on the couch / pull on the adult's jeans and get up into a standing position.  The first time she did it was for my mum, so I didn't quite believe it (aside from being miffed that she chose to perform such a huge milestone for someone else).  But later that evening she did it again.

Twice.

You can see why I keep wondering if I should get my hopes up can't you?  Who would have thought she would be able to do that???

I tried to get it on film the next day with no luck (that is how I discovered that she needs someone to sit on the lounge to help her stand up).   I was standing up filming her and she just couldn't get up, but as soon as I gave up and sat down on the couch she came over and was able to get up.  I'll try and get it on video for you over the weekend!!!  For the time being you'll have to be content with this dodgy snapshot!


Excuse the pants falling down - she often crawls out of her pants!

Wednesday, August 18, 2010

Special Exposure Wednesday: Craft Carnage

On Saturday the girls decided they would like to do some craft, so we set ourselves up in the garage with all our supplies.

Emma and Audrey wanted to do painting.




Seeing as Ashlea also loves to do painting at preschool, I decided to take her standing frame and the easel out to the garage so she could join in too...


As I have explained before, children like Ashlea who have a vision impairment like to examine the world 'close up'.  This even applies to paint brushes...




Don't forget to check out the rest of Special Exposure Wednesday here.

Sunday, August 15, 2010

SHE DID IT!!!

Today was the preschool church service where all the children got up on the stage and sang some songs.  Guess whose children BOTH stood on the stage singing and doing the actions???

Well, maybe that is a slight exaggeration - but they both definitely stood on the stage - Audrey sang and did the actions, and Ashlea sang a few words while her teacher helped her do the actions.  That was good enough for me!!  We were bursting with pride.

Of course I have pictures...

Ashlea on stage (her fabulous teacher Mrs Cook is supporting her from behind)...



Audrey on stage...


Awww...cute.  I was really worried about how Ashlea would go on the stage.  This morning she woke up at 4am and stayed awake until it was time to leave for church.  Of course she fell asleep just as we were leaving and then woke up grumpy when we got to preschool!  When the kids first came into church she had a bit of a meltdown, but when it was time to get up on stage, she got up there with her teacher and joined in with all the other kids.


Words cannot describe what a great moment it was.  This is one of those moments that I thought I would have to forego with Ashlea - a rite of passage that she would not be able to participate in - so to see her up there on the stage with all the other kids was absolutely amazing.

Just as I was starting to feel very teary and like I could start sobbing, she did this....


On stage.

In front of everyone.

Too funny - I couldn't help but laugh.

All the other kids were crouched down quietly, ready to jump up and sing loudly for the next part of the song.  Ashlea was obviously anticipating the loud noise that was coming and had gotten herself in the ready position to deal with noise - hands over her ears while screaming loudly.  I'm not sure what the rest of the audience thought of that little moment but our family thought it was funny.  A typically Ashlea moment.

Fortunately she recovered quickly and was able to go on with the rest of the concert.  Then it was time to go outside and play.

The church goes to great lengths to make all the kids feel welcome.  They even had a jumping castle...which of course meant I had to go on the jumping castle as Ashlea loves them - not a fun experience for someone with balance issues.

Here are some photos from inside...




And of course there was face painting too...



What a great day!!!

Friday, August 13, 2010

Who to vote for??

For those who live in other parts of the world, you may not be aware that in Australia we are in the middle of an election campaign (unfortunately).

Both sides of parliament have made some promises regarding funding for disabilities - however I still don't know who is offering the best package, and which party is most likely to support the introduction of a National Disability Insurance Scheme.

The Labour Party has offered $6000 a year to families to spend on early intervention.  Beauty I thought.  I could use that for private OT to deal with Ashlea's sensory issues.  I could use that for more speech therapy.  I could use that for.....any number of things.

This week I got a letter in the mail from the RIDBC saying that they are very supportive of this initiative.  I was wondering if they were hinting at who they thought we should be voting for.  Anyway, that wasn't the part of the letter that bothered me.  As I read further, they revealed that if this were brought in they would start to charge us for their services - and isn't that great we'd all be able to use our $6000 to pay for it.

ARE THEY SERIOUS???

How can they not see that families like mine have other needs as well?  Why would I support them in this push if it is going to mean that I end up getting charged for a service that I now get for free?  There would be no net gain for me at all - I would get the same level of service from them and still have no money for the extra services that Ashlea needs.

I was under the impression that they already get government funding for each child on the service anyway.  Isn't that double dipping???

I'm a little bit outraged, and think I will have to take a leaf out of Di's book and start writing some letters. It is just so disappointing as they are by far my favourite service and have done absolutely amazing work with Ashlea.  I know they are a charity and struggle for funding, but it really feels like a low blow.

I'm not sure if any other services are going to consider doing the same thing.  I asked at the Spastic Centre - sorry Cerebral Palsy Association (YES - finally a name change!!!) - and they hadn't heard of anything like that.

So, letter writers, any ideas on how I should word my letter?

Wednesday, August 11, 2010

Special Exposure Wednesday: Twin Cuddle

You all know how much I like a twin cuddle.


You also know that one of the things that breaks my heart the most about Ashlea's disabilities is the loss of her twin relationship with Audrey.  Slowly but surely though, Audrey is starting to interact a little more with Ashlea.  She would still much rather spend time with Emma, but she will initiate giving Ashlea a cuddle from time to time now, which is just lovely and melts my twin-mummy heart.





And for those who have been wondering...

Ashlea is feeling better.  Today while my mum was looking after her she was apparently still quiet and listless, but since I have been home she has been very chatty and chirpy.  We still don't know quite what was / is wrong.  Her PEG site got very red and inflamed so the doctor gave her antibiotics for that.  There was also shall we say, an 'explosion' of sorts (while we were at the doctors surgery of course, and while my tooth was still killing me), so the constipation is no longer an issue either.

My tooth is feeling much better.  I had the first part of my root canal treatment on Monday.  Is it sad that in my busy, busy life, I was actually looking forward to having the root canal because it would give me an hour or so to rest.  Although maybe what I was looking forward to was the IV sedation.  Have I told you how much I really, really like those sedation drugs?

Midazolam.  Aaahhhh.

AND, I also got the preschool DVD done (thanks to my sister's editing skills).

AND the ramp people came to measure up.

Not bad for someone who was off their head on painkillers.

Don't forget to check out the rest of Special Exposure Wednesday here.

Sunday, August 8, 2010

You know your baby is sick when...

She goes to bed without screaming and putting up a fuss.

Ashlea is sick.  Unfortunately she can't tell me what is wrong so I'm not sure how serious it is.

She has been gagging more than usual the last couple of days, and then yesterday afternoon she seemed a little out of sorts - nothing I could put my finger on - just not her usual self.

This morning she seemed better, but by tonight she was very quiet and had developed a temperature.  The only other symptom is that her tummy seems a bit sore to touch.  She is pretty constipated at the moment - but she has been constipated before and never been like this.  Could constipation cause this???

My current theories / guesses are:
- constipation
- urinary tract infection
- random childhood virus

Of course my mind is running into overdrive.  What if it is appendicitis?  What if she has an intestinal blockage???  What if???

I'm going to take her to the doctor in the morning.  I don't know whether to go to the GP or the ED.  A mild temperature and an upset tummy can be handled by the GP, but if they recommend an x-ray or blood test then we'd be better off at the hospital.  Any thoughts?

The other problem is that I have a RAGING toothache and am booked in for root canal in the afternoon.  I can't not take Ashlea to the doctor, but also I can't miss my root canal as this pain is becoming unbearable.  I also happen to be a little...stoned...on painkillers.  And I'm meant to be filming for the preschool video AND having someone come over and measure up for the ramp.

It never rains but it pours right???

Saturday, August 7, 2010

Shock horror: A successful family outing!

Yes, you read that correctly!  Today we went on an outing with the whole family - and I think it is safe to say that it was a success.  I'm still in shock.

We had free tickets to Circus Quirkus - thanks to the Lions Club of Manly - who were performing at Darling Harbour.  After previous attempts at outings like this, with disastrous outcomes, this time we went with a plan.

The recipe to a successful outing seems to be:
1. Take an extra helper.  
2. Have an alternate outing planned for Ashlea.  
My sister came with us specifically to look after Ashlea.  Seeing as we knew Ashlea would freak out due to the noise of the show, we arranged for Aunty Carolin to come to Darling Harbour with us.  Her mission?  To entertain Ashlea while Murray and I took Emma and Audrey to the circus.

It was a great plan.

We all sat in the sun at Darling Harbour and ate lunch before the show.  Emma and Audrey engaged in one of their favourite activities - chasing seagulls.  I on the other hand only managed to sit in their poop.  Lovely.




Then, Aunty Carolin took Ashlea to the aquarium while the rest of us went to the circus.  I believe there were still a few meltdowns - but none as severe as if we'd tried to make her sit through a noisy performance that she wouldn't really be able to see.  She is very clingy to me at the moment, and was quite sad to be separated from me.  Occasionally she would just say:
Mummy?
That was until someone tried to make conversation with her and told her that her sunglasses matched her mum's shirt.  Well that was it.   It very quickly became:
MMMUUUUUUUMMMMMMMMMMYYYYYYYYYY!!!!
Anyone else having clinginess issues with their SN kids at the moment???



After the show we had some afternoon tea, and then on the way back to the car, the girls had their first experience on a ferris wheel.  I have no photos from inside the ferris wheel as Ashlea and I stayed firmly on the ground.  I've got a little height phobia going on...




Ashlea was knackered by that stage...



All in all it was a great day out - and just what we needed.  It's a shame Emma can't use this for news on Monday (they have set topics).  The last time the topic 'recount a recent family event' came up she told the teacher we hadn't done anything.  Sadly it was true.

Thanks Lions Club and Circus Quirkus - we had a great day!!

Wednesday, August 4, 2010

Why are they always funny???

Why are farts always funny???  Doesn't matter how old you are, or what your level of education - or even if you have a disability - they are always funny.

Ashlea thinks they are hilarious.  Actually all my girls do.

Ashlea has this speech output device.  We only ever use it as a toy now as her speech has improved so much.  During the week Emma and Audrey recorded themselves blowing raspberries on it.  Of course you can imagine what it sounds like when played back.  Ashlea found it hilarious and has played with it for hours.  She presses the button repeatedly, giggles to herself, and says:
Stinky pop pop.
Funny.
Very silly.




We all thought it was funny that Ashlea found this so amusing.  But then we found something EVEN BETTER.

My sister recently got an iPad and downloaded the burp and fart piano application.  It is what it sounds like - a keyboard that when 'played' makes the sounds of burps and farts.  Oh boy did that keep my girls amused for ages.







All the girls loved playing with the iPad - as you can imagine Emma was all over it.  Ashlea was fascinated by the piano, and even Audrey - who normally couldn't give a fig about computers - got into it.




I wonder if computer and software developers realise that this is what we do with their 'great inventions'???

Sunday, August 1, 2010

Revelation: I'm one of "those" people

Yesterday the girls and I went to hang out with some new friends.  We know M and her mum through swimming lessons - the girls all get on well so we went over for a play.

We had afternoon tea, went to the park, played dress ups, put on make up...




Emma may have got a little carried away...I'll let you be the judge...


And how do you get cleaned up when your hands look like this???



Apparently this is where you wipe your hands...





After we had done all that, the children invited themselves to stay for tea (mini frankfurts) and dessert.  Then it was late, dark outside and definitely time to go home.

That is when I had the revelation.  I am one of 'those' people.  Those people who come to your house for 'a play' and stay the whole day.  Its funny, because I have other friends that I can identify as 'day-stayers', but I never thought of myself as one.  But I think if you turn up to someone's house that you only met through your kids swimming lessons and then stay for hours - that qualifies you as a day stayer.

Oops.

The kids all had a great time though (even though mine totally forgot their manners in their exuberance).  Does that make it OK?  They would have stayed for a sleep over if they'd have been allowed.

My defense - and I'm sticking to it - is that it is such a damn achievement to get everyone out of the house, that once I get somewhere I'm not leaving again in a hurry!


I guess the test will be if we ever get invited back!

Thanks for a great day M & M's mum.


Oh and PS  we've had no apparent vaccination side effects from Ashlea so far.  All good.