Look what I have!

The picture above shows my front door ramp,

it has given me "interesting" service for the last nine years or so.

When Flav and his dad built it, 

I was still using my manual chair and could maneuver very well. My power chairs do not like going backwards down ramps, and had a nasty habit of falling off!

Not a happy feeling for me, because I was stuck until someone rescued me.

Now I have a beautiful big, strong ramp.

Ron built it in his  Aladdin's cave of a work room.

It is made of solid steel and has 9 fins underneath and a nice big lip on each side so I can't fall off!!

He and his mate came to install it on a very windy day, 

they man handled it from the motor bike trailer, 

up my very narrow steps and into place, using only four little wheels, a couple of pieces of wood, 

and a lot of experience.

I sat taking these pictures terrified that  they were going to be flattened by the heavy steel.

Here is the story in pictures -------

 

Testing the ramp!

A job well done.

The ramp has made such a difference to my comfort,

I no longer have the fear of being stuck out in the cold,

waiting for someone to come along.

I have some wonderful friends!

Now I just have to teach Middi to open the door.

Better sit down!

On Thursday I learned that my chair is going to cost round 

$22,500!

That is certainly a lot of money!

I will need to find at least $12,500 maybe more, 

because wheel chair parts have a habit
of suddenly costing more.
At this stage I have no idea where all the money
is going to come from.
At least it is slightly less than I was expecting,
that is because I can't have all the modifications I was wanting.
Now comes the hard part;  
We all know that the chair will make my life easier
and more comfortable,
BUT,
the physio has to make S.W.E.P. believe it too.
Then when they eventually agree that it is necessary,
we wait, usually for about 12 months!!
Nothing is easy or straight forward.
I guess I can hope, that one day I will have
a beautiful purple chair!!

MUSINGS

It has been one of those crazy days, when I try to do too much and end up getting all wobbly.

Now of course I have stabilised and I am wide awake!! 

I went to a disability expo today, not a big one in the city, 

just the local one, where I know most of the participants.

Decided to take the boy, 

I knew it would be a great place 

to explain what I am trying achieve with Middi.

He is such a great ambassador for Assistance dogs.

He walks in with his head up, looking like a prince.

First thing I do is tell him to "relax",

I know everyone is going to put their hand out and pat him, before they read the large signs on his harness, and my tray, telling them he is working, and not to pat!!

This is an on-going problem

and I have decided the only way to deal with it ,

is to let him sell my my goal of getting him registered in Victoria.

You never know, I might tell our story to someone

who can help us.

He certainly had a lot of admirers today!

No, Middi hasn't turned into a beetle,I just liked the photo!!

Anyway,

Nik and I, rock up to the expo in the big green Moira bus 

and there were -----

NO disabled parking spaces free!!!!!!!

and no parking permits on the cars in them.

Nik parked the bus in the only bit of room available,

and I stormed off to find a policeman.

[ I saw the community police car parked near us]

I was so angry, I am sick of not being able to get a parking place, because some able bodied person,

thinks they are above the law.

That evil bit of me was exceedingly happy

when Nik came in, and told me the policeman had slapped a ticket on the car.

Parking is a nightmare when you have a large van

and some selfish person, has taken the only space

that allows Nik the room to off load me

.

I have spent 5 years fighting with

Glen Eira Council about disability parking,

and I haven't won----- Yet!

On that note, I am going to bed,

GOODNIGHT

PS:  we scored 6 new pens, they will last a while !!!!

FOOD?

As you can see, I have been sewing again,.

This time it is for my little grandson.

I have a bit of a problem -- he is a vegetarian,

most of the food he eats is shades of brown.

I have done my best, so here it is --

Vegetables of course,

there is tomato, onion,lettuce,lovely orange carrots

 funny little mushrooms that I am rather pleased with,

and broccoli which is hiding at the top.

*************

Here is the brown bread, two sorts of cheese,

fried eggs

and of course peanut butter for a sandwich.

**********

Feel like a pita bread pizza?

this one has tomato, white cheese and basil.

It is cut into four pieces to share.

***********

Fancy some tofu?

nice to eat with tomato, onion and broccoli.

I had trouble getting the colour of soft-fried tofu

so I soaked the felt in tea, for a couple of days 

and it came out perfect. 

Shame my photos aren't a better colour!

***********

Fancy a snack with your herbal tea?

You could try an orange-choc donut, a P.B. tart,

a choc bikkie, or if you want something savoury, how about some 

biscuits and cheese?

I love making felt food, 

believe it or not, I find it helps me to relax,

I can sew it with my eyes shut!

I have a large collection of patterns now, 

it is addictive, 

part of the fun, is thinking up new things to make.

Maybe I might try and sell some, 

the money could go towards my new wheel chair.

Tomorrow I think I am going to find out the cost,

I know it is going to be a lot,

but,

I will have to wait and see.

Sleep well!

Uniforms!!

Its funny, I haven't talked about disability for ages,
this week I am full of it!
I have been talking about uniforms for carers, 
its another one of the things I really HATE!
As I have said before, 
any agency that insists their staff wear a uniform
when taking me out, does not get my business.
A lady a lot older than me said it makes her feel as though she is an inmate of an asylum, and not safe to be let out alone!!
The one time it happened to me I could see the people in the street looking at me ---horrible.
Carl, in his article, said he hated going out in the evening with a uniformed carer. More like a warder I think!
Disabled children used to be taken out in blue buses,

that no longer happens, so why should we still have to put up with the indignity of "uniformed warders".

Nik and I go out in many different outfits, 

comfy clothes if we are going to the park,

or formal clothes if we are attending a function.

People often think she is my daughter, 

I explain that she is my companion,who will help me if I need it.

Think about it, 

companion is a much nicer word than carer,

 

maybe one day,

we will all have companions.

Sometimes we just have to wear crazy clothes!!!

Carers?

Carers play a very large part in my life,

I have them 7days a week, usually three times a day.

Apart from feeding me my meals and taking me out,

they do all the intimate things that other people do for themselves.

Yesterday I read an article on the DeVine web site,

it was written by a young guy who wants more say,

in the care he receives.

He mentioned that he would like to choose who wipes his bottom

and takes him out.

It made me think about how things are changing,

or perhaps I am changing, and becoming more assertive.

I have been a wheelie for almost ten years,

my first "care" was for 3 hours a week, 

this gave me two bed baths in seven days!!

Not much, my Jessika did all the rest!

Now I have a lot more hours, and a lot more say

about my care and who gives it to me.

Most of the money comes from DHS, 

they have strict rules which change frequently, 

not always for the best, 

but they are improving.

At one stage, I had to leave an agency that I was very happy with,

just because I was given more hours.

I was given a choice of specific agencies,

none of which I was happy using, so I will not mention names.

I am very lucky, I have some wonderful carers,

who moved from agency to agency with me,

it has been an interesting experience, to put it mildly.

Now I have an Individual Support Package that I look after my self.

This means each month a sum of money magically appears 

in a special bank account, 

it is used to buy care for me, from what ever agency I wish to use.

Now I choose who I want to look after me,when I want them,

and for how long. 

I do have to budget very carefully, to make the money last for the whole month.

I have come a full circle, 

I started my journey with Moira Family Services, 

and now I am back!

We have an interesting relationship, 

my care requirements change from week to week, even more frequently some times. 

If I have a talk to give, or a meeting to attend, 

things get moved around.

It works because I have my dedicated carers

and an agency that is willing to meet the challenges 

of disabled people who want to be  full members of society.

Things are changing at last,

well at least for some of us!!

I am lucky to have a family that cares about me

and a great support group, who want the best for me,

and are willing to push the boundaries with me.

If you are interested to see what a disability agency

can do, have a look at Moira's site --

                              http://www.moira.org.au/

If you have followed my blog,

you will know there is another

service provider?? that looks after the other part of my life,

if you can't remember who

go search  :-)  ;-))

More about care later!!!

I need a new wheelchair!

I have mentioned this before,

now I am really organised. 

I went with my physio and Niki, to meet Ashley, the man who will build the chair for me.

Here is what it looks like before it is customised.

 It's about as close to a 4X4, or a motor bike, as I am ever going to get.

Of course it will not look much like this picture when it is finished being customised.

This is when the problems start getting big.

The chair is "loaned" to me by the government,

the good thing about that is - they pay for its maintenance,

[but not tyres].

The trouble is we only get $6000 for the chair

and $2750 for the "mods".

To make this chair work for me ,I will need --

a special back that can fold flat,

a seat that can both tilt and stay flat ,

leg rests that go up and down 

and a specially designed foot plate that will keep my feet in the correct place.

The seat will also rise so I can reach cupboards and high counters when I am out.

As well as all these new  gadgets I will hopefully be able to use my old headrest, chest harness, 5 point seat belt,

dead brake, tray, knee pads, chest pads 

and my Roho pressure cushion.

If any of these don't fit the new chair, I will need new ones.

The chest pads alone cost $500!!

It all adds up to an enormous amount of money.

BUT, it means my freedom,

once I am in my chair I can do just about anything I want,

except climb stairs!

Finding the money for my wheels is a giant worry,

the money must be found, before the the government

will even consider providing the chair.

This is a problem for all us wheelies, 

just imagine if you needed a ventilator , 

or special controls so you can drive your chair 

with your mouth or head. 

There are so many wonderful pieces of equipment 

that can be used , 

if you can pay for them!

The trouble is, "disability is at the bottom of the government priorities and wheelies are even further down.

I think we are still seen as "poor cripples",

"confined" to our wheelchairs, just sitting around, waiting to die.

That of course is far from the truth in most cases, 

we have goals and dreams like everyone else in society.

I think the media is one of our biggest enemies,

they still portray us really negatively, we are either "inspirational" 

or "bravely battling our disabilities".

Now I am going to get very controversial,

this is my blog and I can say what I think.

A while ago there was a case in Western Australia;

a man became a quad and was put in a nursing home, he was fighting to have the right to end his life, because he had nothing to live for.

I cried for this man, I know what it is like to feel there is no future that is worth having.

Where were the people who should have been helping him  to learn new skills and become part of the world again?

Stuck in a nursing home, with no positive support, 

is hell on earth.

Perhaps he had received all the physical and emotional support he needed, if he did that is good, but in the media it was not mentioned, only that he was a quad, and could do nothing for himself.

Of course the public are going to think that acquiring, or having  a disability means your life is not worth much at all.

I love life,certainly it is different to what it was ten years ago,

the challenges are different to what they might have been, 

but the sun still shines and my dog still kisses me!!!

Well that was a rant!

Now I will have to move, as my big boy has woken up and is starting to pile everything on my tray,

his way of saying "lets go out"!

Until next time --- keep fighting!!

Well,I guess I had better post a picture of 

my Cheeky Boy!

 

I cant resist that face!

I found a web site that frames your photos,

I had to make one of our girl.

Isn't she beautiful!

One of those days!!!

Do you ever have one of those days when everything goes wrong?

Today was one of those days!

It should have been a great day,

the sun was shining and there was no wind,

a perfect day to do "fetch it" training in the park, 

with just a few distractions.

Trouble was, a certain skinny black boy had other ideas.

Look at this face ---

have you ever seen anything more mischievous,

look at those big brown eyes,

and the cheeky grin.

TROUBLE!

The park was beautiful, a couple of magpies,

a toddler, butterflies and of course Chris.

I had brought the big bag of his favourite "fetch" junk

It started off well, this is what should happen--

I drop, he picks up the object and puts it in my hand,

simple!

If I cant hold it properly, no trouble, just give it to me again.

I love this activity and so does Middi, it is our star turn, 

we can do it  in the street, in the pet shop, at the beach, even in the little Super Market. 

But not at the park, on a sunny day, with the camera!

 I would like to blame Chris,  the magpies or even the butterflies,

but I think it was just Middi "blowing me off".

Look at this video, I could do nothing right --

                     This video really is awful, but I think it is important     to show the failures, as well as the successes, 

not everything is easy!!!

It shows Middi taking no notice of me at all. 

he even walked on cloth and ignored it!

I can laugh now, but I was really frustrated at the time.

As Chris said, we have to practice, where there are lots of things that interest poodle boys.

Here are some photos showing what boys are not supposed to do when asked to pick up dropped items.

What a clown!!!

These last pictures show what he was supposed to do!

Incidentally, it is much harder to pick up a slippery jar than a rag.

Middi picked it up with no problems at all.

Guess what we will be doing this weekend, rain, hail, or shine.

Until next time --- always count to ten!!!

This is how I want to remember our girl.

That happy, smiling face,

enjoying being part of a loving family. 

Beyond The Rainbow

As much as I loved the life we had 

nd all the times we played,

I was so very tired and knew my time

on earth would fade.

I saw a wondrous image then of a place that's

trouble-free

Where all of us can meet again to spend eternity.

I saw the most beautiful rainbow,

and on the other side

Were meadows rich and beautiful--

lush and green and wide!

And running through the meadows as

far as the eye could see

Were animals of every sort as healthy as could be!

My own tired, failing body was fresh and healed

and new

And I wanted to go run with them,

but I had something  left to do.

I  needed to reach out to you, to tell you I'm

alright

That this place is truly wonderful, then a bright

Glow pierced the night.

'Twas the Glow of many Candles shining bright

and strong and bold

And I knew then that I held your love in its

brilliant shades of gold.

For although we may not be together in the way

we used to be,

We are still connected by a cord no eye can see.

So when you need to find me,

we're never far apart

If you look beyond the Rainbow and listen

with your heart.

By Cate Guyan 1995