Sunday, October 31, 2010

Buying a new car

Car Salesman are a wiley lot aren't they?
Yesterday, despite my most excellent skills of non-committing, we very almost agree to buying a $56000 brand new car. In fact, despite my best efforts, that car in currently 'on hold' so that I can make decision by Wednesday.
Apparently these salesman pride themselves on 'not pressuring' people to buy new cars. I beg to differ.
David had already been down and had a test drive and really wanted me to have a drive of one too (I think secretly he hoped I would be seduced enough by the bells and whistles to say: "Damnnit I want it now") And it almost worked.
This car was red, so big tick already.
It had DVD player for the kids.
It had an amazing amount of safety stuff: reversing camera and beepers, some stability thingamy bob, and airbags all round.
It had leather seats (which personally I don't actually like, but ssshh).
It had 7 seats, which were tiered and folded down (because we have 2 kids and what if one wanted to sit way up the back?).

Anyway, the list of outstanding features go on and on. It drove like a dream.
As soon as I got back from my test drive, the shmoozing (is that a word?) started.
It is amazing what those sales people say to get a sale.
David would have bought it then and there I think. He had that glazed look in his eye as he imagined driving down to the beach complete with mega boat on the back.

Me, on the other hand, refused to commit. Yeah, it's nice, but we need to talk to our bank first.
Oh, but they have great finance options that very competitive.
Uh-huh, I replied, but we have a very small mortgage and make extra payments and pay very low interest rates (under 7%), so stick your finance mate.

So we walked out saying we would be in contact tomorrow, or the next day, or never.
I must admit, I tossed and turned last night as I tried to work out our finances and see if we can buy a way-too expensive car and our beach house.

The answer, my friend, is blowing in the wind.
The sea air, that is.

We can wait for a fancy shmancy car until we are mega rich.
For now, I think we can drive that troublesome Holden into the ground and continue to strive to reach our goal of buying a beach house.

(We may not be able to get to the beach house of course, but we will worry about that later!!)

Thursday, October 28, 2010

Tell Me About it Thursday

So this is going to be my new weekly blog post that you can be guaranteed to get.
It will be all about the wonderful and sometimes challenging world of disability.
I will warn you: There may be venting and there may be times I am up on my soapbox. 
There may also be times when I am writing about how life just doesn't get any better.

Do you have something you might like me to write about? You can email me, or send it through the Formspring link. Or you can just comment at the bottom of this post.

My first post next week will be: "Labels, Diagnosis and what next?"

Tuesday, October 26, 2010

A new direction

So I have been doing some thinking lately (not much else I could do while I was sick in bed), and have decided to trial some new things with the blog. Time to make it a bit more interesting to read.
Or at least try anyway.
So, here are some new things:
  • For November, I am going to try and post Every.Single.Day. This will be a challenge for me, but will hopefully inspire me to write again.
  • Each week, I am going write about a topic that is disability related. So, basically issues that face us. I might make that, say, on a Thursday. If you have any topics you would specifically like me to write about in the following week, just comment on that week's topic.
  • I am also going to post about our garden, because we are aiming to learn as much as we can about growing vegies, and eventually want to have the majority of our vegies coming from our garden (which may take some time, but that is our goal).
  • My other great love in life is cooking. I love creating new foods, or cooking new recipes, so some of that might make it's way into my blog as I strive to spend more time doing what I love. Plus Braeden shares my love of cooking, although, he is perhaps a little more adventurous than me?! Ryley also loves watching and touching the different textures, and David likes to eat, so whole family involvement!! 
  • And finally, I have been inspired by my friend Lauren who said she would never run a half marathon, but has!! So while that might be a bit ambitious for me right now, my aim is to be able to run 10km and complete a fun run. So you might hear a bit about that at some stage too.
So. Stay tuned for a (possibly) more interesting blog. If you are new to the blog, I will soon have my key posts in a link somewhere so you can get to know us and learn a bit more about Wolf-Hirschhorn Syndrome.

Monday, October 25, 2010

Tomato sauce on Fruit Toast

Not quite what Braeden thought it would be. But, sometimes, you just gotta let them learn for themselves. Bear in mind that he loves cooking, so maybe he was just trying to create a new dish. Either way, he only managed to eat one piece!!!

Saturday, October 23, 2010

Snow Peas

So, back to fluff in the blog for a while. Fluff Fluff Fluff. Nothing more, nothing less.

Here is a picture of our first harvest of snow peas. It will be the only time we will ever collect so many at once because Braeden eats them before I can collect them.
Yum. Snow Peas.

Friday, October 22, 2010

I found this over at Kidz. I think all parents who have a child with a disability need to read this!! 


Wednesday, October 20, 2010

Who Cares about Carer's?

So here is the cynical post that you all know I am going to write (given the status update over at Blogaboutabloke Facebook).

I have been sick for the past 5 days. So sick that I have had to stay in bed. In fact, I slept for the WHOLE DAY yesterday, waking only to eat and then at 3pm when I realised I had to pick Braeden up from daycare.
Ryley has been sick also. He had to stay home on Monday he was so unwell.
I am rarely so sick that I can't get out of bed. And, even as I sit here typing this, I am at work, but should be at home, in bed, because to be honest, I feel like I am going to faint.

So, who cares about the carers, really? I don't get help. When I am sick, there is basically only David to help me. He has been too busy at work to help me out. So that leaves no one. I am not going to turn this post into a poor me one. No point in drowning in self-pity. BUT. It does raise a good point. How many people out there who care for people with a disability truly have people they can call upon to help them out when they need it?
I can't see too many hands raised there.

The point is, that Carer's week really doesn't do much to recognise what Carer's actually do. For me, it is almost like giving me a smiley stamp and saying "Good Job". 
I would like more money please.
So I can PAY someone to care.
That is all.

Off my soap box. And really, should probably go home and back to bed. But, being the goddamn 'hero' I apparently am, I am going to pop a panadol and suck it up.
(I might even drink a cup of concrete and harden up).

Thursday, October 14, 2010

Ya just gotta love...

  • When you get a phone call from the school to tell you Ryley has somehow pulled his Mic-Key button out.
  • When you can't get Ketocal, and the fact that it is your child's ONLY source of nutrition doesn't really matter to anyone. Not to mention the fact that he CANNOT just go eat something. But then again, if he starts having lots of seizures, that is pretty much my problem, right?
  • When you have to change your top before you come to work because you have poo on it.
  • When you get to work with new top on and proceed to spill coffee down it.
  • When you decide to eat chocolate for lunch and then feel really sick after eating it.
  • When your toddler wants to pick his own clothes (and his brothers) and then put them on himself WITHOUT any help thankyou Mum.
  • When you really need more coffee and you are at work and can't be stuffed going to get it.

Tuesday, October 12, 2010

Dance off

We were lucky to attend the wedding of our friend Jen and Lachlan on the weekend, and we all had a wonderful time. As soon as the band started to set up, Ryley was sitting as close as he could get patiently waiting for them to start. He started dancing as soon as the band started playing. Braeden (despite being ever-so-overtired) was doing his best to keep up!

Here are a few snapshots of the dancefloor hoggers:

Look at how red Ryley's cheeks are from the dancing!!

Yeah, What?

Waiting for the next song to start
WOOHOO!!










We had SO much fun!!

Thursday, October 7, 2010

Carer Relationships

I have been meaning to post something like this for a while. A while ago I wrote this piece to base a powerpoint presentation on for a workshop. So it definitely doesn't go into lots of detail, but does present some interesting points I think.

Not many people talk about the relationship they have with their partners. And I have written many a time on here about the extra stress having a child with a disability has on a relationship. Anyway, here is the piece of writing. Please tell me what you think.

Carer Relationships

Forty years from now when we are sitting on our front veranda sipping our wine in the peace and quiet, with no kids around, we will be able to spend all the time in the world with each other.

Yeah. That’s if you have managed to make it that far without splitting up. Or you have managed to ensure your adult with a disability is in safe and suitable independent living. Not to mention the financial side of things.

Relationships are hard work. Let’s face it. Whatever your circumstances, it truly is bloody hard work. Add kids to the mix, and your time with your partner fades into the distance. Along with work pressures, social pressures and maintaining day to day living, it becomes very difficult to remember it was once just the two of you.

Now add a child with a disability into the mix.

Suddenly, you have medical appointments, therapy appointments (which means strangers in your home quite often), a child who can’t walk, a child who can’t talk, or even a child who screams at certain sounds. You have other children, a job, friends who don’t understand, family who don’t understand. You want to cry, share the highs, and find someone to help carry the load for a while.

But when you turn around to your partner, they aren’t there. They too, are lost in a world of coping. They might be working more than ever, escaping to their friends house, or avoiding the “talking”.

Everyone copes differently

It sounds cliché, but it’s true. Men and women are different. End of story. Traditional roles within a family do, for the most part, still exist. So, Dad goes to work every day, and Mum stays at home or maybe works part time. Mum largely still maintains the home, and often is the one attending all the appointments.

Mums, do tend to find support through their friends, social networks, or mothers groups. And this can help enormously with their ability to cope. They often are the ones to seek support, or at the very least try and have a break.

Dads, on the other hand, often cope by throwing themselves into work, or some kind of task. Something that will take their mind off things they don’t understand, or don’t want to understand. Sometimes it is a relief for them to go to work and be away from the issues at home, because often they hope that their partner will sort it out. More often than not though, Dads want to do more. They desperately want to have a happy partner, they want to help and attend appointments. They just aren’t sure how to (or perhaps aren’t given the opportunity).

Key Relationship Issues

There tend to be four main issues that affect carer relationships, and this is what makes them so unique and complex.

• Communication

• Honesty

• Intimacy

• Burden of Care/Grief

All of them affect the other. You will notice that the first 3 are issues that are important in any relationship.

Communication

I know. Everyone talks about communication being important. Here’s the thing, it IS so important. But it is something you have to learn. Being able to talk to your partner is not easy, although it should be. Arguments happen. They are healthy in any relationship. But constant arguments which turn into conflict are not healthy.

So how on earth do you achieve wonderful communication with your partner? There is no magic solution that will suit everyone. You need to think about how you communicate as a person first. Does it match up with your partner? Is your instant reaction to assume you know what your partner is thinking and is going to say? Remember non-verbal communication says more than words sometimes. Think about what your body is doing.

If you don’t feel you can express what you want to say in words, write it in a letter. See a counsellor who can act as a mediator. Sometimes having a third person can help you talk about things easier.

Keep working at it. Find time to spend together without the kids. Use respite services if you can. Or if you have family to help out, use them! Sometimes it is good to just go out together and NOT talk about your kids or your child with a disability or whatever appointments are coming up. But sometimes it may be your only chance.

Honesty

Being honest with your partner and yourself about your situation is crucial. It is ok to not be coping. Tell your partner. Trust them. Be honest if you are feeling sad. Be honest if you are angry that you don’t feel like you are getting the support you need from them. Again, this opens up communication, and helps you stay on the same side!

Intimacy

I know people often wonder what the hell this means...I mean, all that stuff goes out the window when you are married, right? It shouldn’t! Having a child with a disability can mean no sleep, it can mean co-sleeping arrangements, it can mean night feeds, and it can mean that 24 hour round the clock care leaves very little energy for any kind of intimacy.

But it is important to maintain at least some intimacy. Sit down together and watch a movie once a week. Hold hands every now and then. Give each other a hug when they need it. Kiss each other hello and goodbye. It is simple things that help maintain long-term intimacy. It is easier said than done though. But don’t let that deter you!!

Burden of Care/Grief

This is what makes relationships of carers so different from others. I have chosen to use the word ‘burden’ because often that is what it feels like. Both parents often feel the burden, although they feel it very differently. The grieving process is so complex and so many parents haven’t yet acknowledged that it is ok and normal to feel sad. Not just once, but over and over again. This alone affects relationships with your partner or other people. Having a child with a disability shouldn't always mean you are unhappy. There is so much joy in watching your child achieve something, or just enjoy life. So sometimes the burden is more about the future, and the unknown and whether you will always be able to provide your child with everything they need.

The complex needs of our children means that we are constantly trying to find a sense of normality in a life that really is far from being straightforward. The stress and worry of caring for a child with complex needs can sometimes be too much. Usually it is your relationship that takes the backseat, as you simply need to just survive.

Financial concerns come into this section too. Increased costs associated with having a child with a disability place extra stress on families. This often leaves little room for luxuries and can leave families struggling.

Sometimes you can only take one day at a time. Try not to let resentment build up. It is easy to resent your partner for not doing xyz or for doing xyz instead of helping out. Talk to them about it. Be honest. Look for a solution together. Encourage each other to grow and change. Don’t get stuck in the rut of thinking that your life will always be a battle.

Try and have time out together. Try and encourage each other to do something with their friends regularly. Try and attend some appointments together. Communicate the therapy goals with each other, and be realistic about what you hope for your child. Don’t forget about the siblings, and try and become involved in their lives too. It shouldn’t always be about the child with a disability!

I could probably write a book on this subject. Maybe one day I will.

Sunday, October 3, 2010

Sunshiney Sunnity Sun Sun Sun Sun

How many times can I change the word sun and make it into a nonsence word? Hmmmm (And that took me ages to write seeing as my fingers have suddenly decided not to work).

Today, quite simply, we enjoyed the sun and warmth.
Given that my car is dead still, and our current family vehicle 'da camry' is...well...let's just say old, no power steering, and...small?..we had to stay home.
We had no choice in that matter.
(Da Camry is not known for its lightening speed or endurance).

Ryley was in a bad mood all day, and Braeden barely stopped for lunch.
David started yet another new project.
I did some pruning, weeding, planting of seeds and cleaning of the house.

It is so nice to be outside.

Fingers crossed this weather stays around a bit.
Oh. And having my car all fixed, that would be bloody great.

Friday, October 1, 2010

Um...updates?

I don't know how to title this post.
Life has been so busy that I have barely had time to check my emails. Blog? What's that!
These holidays have flown by and I can't believe we are back at school and work next week. Final term before our long summer break...yay!
The sun has finally decided to come out and warm us all up a bit so we are all loving that!
Ryley has continued to enjoy holiday program! Can't wait for him to go again next holidays. He actually cracked it with me yesterday because he didn't want to go home, and I battled to get him in the car!! Shows how much fun he was having.

We have had no car for two weeks which has been a joy. Then to top it all off I get the car back and drive to Melbourne for Ryley's RCH appointment and lo and behold I break down in the middle of four lanes of traffic on the way home. Um...NOT HAPPY. Had to pay a zillion dollars to rejoin RACV (because me, being the slacker I am, forgot to pay the bill). David and Braeden came to my rescue. As did my Dad. Although, Dad arrived about 1 minute before David. Now given that David had to come from Ballarat and my Dad had to come from only across the other side of the city....hmmmm....not sure that says much for the public transport system in Melbourne!

Anyhoo.
The sun's been out.
Have I mentioned that yet?

The Grand Final is on again this weekend, so this time we will have a little party. I can barely put up with watching one grand final let alone two, so this time I am not watching it without my friends around (might help pass the time).

Well. That's about it. I haven't really taken any photos. But now that the sun has been out, I might be inspired to take some again.

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