Thinking

   My poor old chair was not plugged in properly last night, so I am stuck in bed, until it has enough "juice" to take me out.
Of course the forced inaction gives me too much time to think.

Today I have been thinking about my boy [big and black] and our relationship.
I have been under a lot of stress lately -- too many things that need doing, and therefore pushing myself too hard. Problem is, when I am tired my body doesn't work properly and I spasm a lot more.
If I am in my chair I know Middi is standing patiently by my side just waiting for me to "come back", knowing he is there gives me strength, and a feeling of security.
 No one is going to pinch my bag or anything else, with a big black poodle standing guard, when I am able, I will reach out my hand to rub his topknot, then we can  continue on our way.

If I have an anxiety attack or worse still a panic attack, I know he is there to hold, until I have mastered my feelings and calmed down.

The most precious thing he does is look after me when I go to the hospital each fortnight. He always lies in his corner and sleeps, until some sense tells him I am upset, then very quietly he will get up, move to my chair and nudge me with his long nose.
Some times I am not even aware of what he is doing  until my therapist tells me to look at what is happening.

None of these behaviours are taught, they are just the loving bond we have between us.
Yes, Middi  can pick up everything I ask, he can fetch the phone, even pull the door open if I let him, but none of those things are as important to me as the sense of security he gives me.

And you know what, these are the things  he is not allowed to be registered for!.
Panic attacks are "psychiatric" problems, and therefore not recognised!
So Middiwill just plod along with me and no one will officially know the support he gives me.
                                    CRAZY!

        

An aniversary!!

In a couple of weeks my eldest grandson turns ten.

This is a milestone that comes with mixed feelings for me.

I remember his birth so well

; the long trip up to the William Angus Hospital,

then sitting on the bed encouraging Rebekah,.

It was a text book birth, 

I think there is nothing more frightening

 than watching your daughter,

 give birth to her first child,

 but all changes when the head crowns

and out comes your first grandson, with a great pair of lungs.

I have five beautiful grand children,

 and remember very clearly the day each one was born.

Tali's birthday reminds me that another anniversary is coming up.

I have been disabled for 10 years. 

When I say the words, it sounds a long time,

but it has gone so quickly.

Lying in my bed, on a hot Melbourne day,

I naturally think about the changes that have occured.

Yes, some of them have been mind blowing to me,

and my family also.

I know all about the "BlackDog" of depression, he lived in this house for a very long time and still comes back to visit every so often.

BUT

these days he is met by another Black Dog,

who gives me love and strength to fight.

I do not subscribe to the statement that says --

"what doesn't kill you, makes you stronger".

For me it certainly does not.

Being disabled  frustrates me, 
sometimes I have no patience with this body 
that will not do what I want it to.

Sometimes I get angry and think Why me!

I am not Polly Anna, I can not play the "glad game",

there really is nothing positive about being disabled.

If I wasn't disabled, I would be living a very different life.

Now here come the positive things about my new life,

they are the internal things that no one sees.

My world is much smaller now, but much more intense,

 I really do stop and look at the flowers, 

and see the beauty of the world around me.

I listen to the sound of the birds and the insects,

 in my garden,or at the park.

 When you are in a wheel chair you do a lot of sitting, 

so you might as well use your time constructively!!

Of course I have learned the obvious things as well,

I know all about discrimination,

 what its like to have no money,

and the saddest one, 

to loose friends and acquaintances.

My body has become weaker, 

but my spirit has become stronger.

Now I use my voice to fight for equality,

as I keep telling everyone,
 [who may or may not want to listen]

I must use my voice for those who cannot speak. 

Strangely, my belief in God has become stronger,

I have more time to look at this beautiful world

 He must have created, 

and feel very sad how we are destroying it.

What a long and rambling post this has become,

it will be interesting to look back again in ten years

and see if I still feel the same.

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 !!!!

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!!!

WORKING!

Now that Middi is 12 months old and reasonably well behaved, it is time to start trying to push the boundaries.

When I got him , my aim was to train him as an Assistance dog, using Chris from Baybark as our trainer.

The first hurdle to get over is to pass the --

ASSISTANCE DOG PUBLIC ACCESS CERTIFICATION TEST.

On the front page it states --

"The Test is to ensure that dogs who have public access are stable, well-behaved, and unobtrusive to the public. It is to ensure that the client has control over the dog and the team is not a public hazard".

Sounds very sensible to me, 

it is a shame that all dogs and their owners don't have to sit this test!

It is done at a shopping centre, in 14 sections----

1. Controlled unload from a vehicle.

2. Approaching the building  [in our case shopping strip]

3. Controlled entry through a doorway.

4. Heeling through a building [large shop]

5. Six foot recall on lead.

6. Sits on command.

7. Downs on command.

8. Noise distraction.

9. Restaurant.

10. Off lead.

11. Controlled exit.

12. Dog taken by another person.

13. Controlled load into vehicle.

14. Team relationship.

When I first read the requirements I thought it was very hard, 

now nearly nine months later I don't think it is really that bad.

Every time Middi and I go out, we are practicing parts of it.

On Wednesday Chris and I started restaurant training,

this means Middi has to behave beautifully in an eating place.

He must lie quietly next to my chair [with his tail tucked in], and of course he must not scum food!!!!!

It was an interesting experience,

I am used to taking him to coffee shops and sitting outside, I like the fresh air and there is more room for my wheelchair to maneuver.

I was so nervous, Chris keeps saying it is me she is training,

if I am calm he will be calm and do as he is told.

Of course he was good, 

once Chris worked out how to fit both of us into the shop and reminded me to keep praising him and giving him treats, he went to sleep!

The most important thing I forgot, was to stop him shaking himself when he stood up to leave, no one wants dog hair in their coffee!

It was a good experience for all of us, 

now I feel more confident, so Middi and I might join the coffee set!

Until next time ------ hug a puppy!!!

Stop press:

Middi and I went to the park for lunch today,

here is a photo to prove that he does stay beautifully beside me!!

Melbourne on a sunny winter's day is heaven on earth.

Another experience!

Remember Chris suggested we should go to dog school?

I think it is time for an update on our progress.

Before we started It was agreed,
that Middi and I would stay in the beginners group with the least trained dogs,

he and I are learning  how to get on with all sorts of dogs.

We do all the exercises the others do,

but we use our own words and signals.

I cannot believe the change in  Middi and I!
in the few weeks we have been going,

he has calmed right down 
and I am confident that I can manage him.

Here are a couple of pictures showing

"going through a gate"

Compared with the narrow doors we have to squeeze through this is a breeze!!!

Agility is one of the exercises we do each week,
because of his wonky legs Middi can only do part of the course.
He can step sedately over the jumps,
climb carefully along the dog walk,
and sit beautifully on the platform.

Here are the photos to prove it!!

 Sometimes I don't judge distances very well,

look where Middi's tail is!!!!

Now I am really glad Chris encouraged me to go,

Middi and I have such a good time that last Sunday morning 

we got up really  early and attended two different classes.

The people at the school are very supportive of what I am trying to achieve with Middi and the trainers ask me lots of questions about our training.

This week we were asked to visit a different group,

so the dogs could get used to a big wheelchair

and a "working dog".

Dogs are often afraid of this big silent chair.

I am really enjoying the challenges of dog school.

That Hoist again and again!

This new hoist of mine is turning out to be a real treasure,

I have found another use for it!

I am making one of my felt mobiles ........

it  is perfect for hanging the mobile,

to join all the pieces together.

I sit under the hoist and rest the mobile on my tray,

when I want to see how every thing is going I just press the up button.

I wonder what other uses I will find for it.

All suggestions will be accepted!!

Until next time ....... Enjoy Life!!!

Fun with Felt.

 I love working with my hands,

when I became disabled I was encouraged to "make things".

Not so easy with eyes and hands that had minds of their own.

Eventually I rediscovered felt.

When I was a child I made stuffed animals from felt, 

I remember having a stable of felt horses, 

I wish I had kept them for my girls to play with.

Felt is so easy to work with, 

the colours are bright, it doesn't fray

and it is very easy to sew with your eyes shut!!

Bella is turning 2,

I know she loves playing in the home corner at play group,

so I thought pretend food would be a good present.

 Some of the ideas came from the internet,

and some are my own.

ENJOY!

Bacon and fried eggs for breakfast.

May be a salad sandwich for lunch,

or perhaps you would like ham or a drumstick with it.

A roll up made with sorj bread or wholemeal might be nice, there are so many things to put in it.

How about pasta for tea, you could eat it with tomatoes, or even cheese strips.

fancy something sweet for morning tea,

how about a sweet biscuit or a jam tart?

or may be an iced donut with sprinkles on top.

they are always good with a cup of tea.

I had so much fun making this food, 

now I need to find some more "birthday children"

Until next time ---  enjoy a donut!!

Continuing the questions.

Tonight I have decided to finish answering Annies questions.

It has been a very interesting experience, working out the answers.

Here we go again.......

2.      How did you end up in the position you are in now?

Fl    Flu >> pneumonia >> a virus.

4.      What do you think is the most difficult about having a disability?

DiDifficulties are many, losing my independence, having to be dependent on other people for the basic things of washing, toileting, dressing, moving from bed to chair. Other people thinking that because I live in a power chair I have lost my intelligence, my power of speech and I am deaf. People talk to my carer about me e.g. what does she want to eat? Lack of access to most buildings – wheelchairs do not climb stairs. Lack of Job opportunities.

5.      Have you achieved anything in your years in your chair (medals, trophies e.t.c)? What are/were they?

Y Yes I have achieved many things, in sport I won the first “run” I did as a disabled athlete.

MMy main achievements have to do with advocacy, after two years I have at last persuaded City Link to allow me and any other power chair user ,who feels capable, to run in the long RCH good Friday run.This is a run through the Domain tunnel and over the Bolte Bridge,it was a hard fight, as they could not understand that I am as safe, if not safer than someone running on two feet.

 I   I am still trying to persuade the Victorian Marathon to allow power chair runners to compete in the Vic Marathon and other Marathons.

I II have persuaded local Government to put in a path for people in chairs to access the local bike paths. I  had a curb cut put in at Caulfield station so that people with a disability of many sorts can use the taxi rank without “walking” down the middle of a busy road.

MMy latest achievement is to persuade the Glen Eira Council to look at disabled parking spaces in the municipality and change the way they are made e.g. Long cuts in the foot paths for parallel parking, and a designated bus parking place in Elsternwick shopping centre. If this passes the final council approval it will be a first in Victoria.

“ To me the advocacy wins are much more important to winning at sport; these things will benefit many people, not just me”

6.      What are some of your goals for the future?

MMy goals for the future – to continue fighting for equality for people with a disability, to keep myself as active both mentally and physically as I can.

TTo train and register, the first privately trained service dog in Australia, this would give many people the chance to have a dog to help them live their lives a little easier. Overseas this happens; if there is a test that service dogs have to pass I want my beautiful, well trained dog, to be able to sit the test.

7.      If you met a Genie and they granted you 3 wishes, what would the wishes be?

 

   Not the one that many able people seem to want for me – to walk again! There are many things that I think are important. >>>>

1.              Tolerance and equality for all people, no matter their race, their colour or their religion [or lack of]. This would mean no more wars; unfortunately I am certain this will not occur in mine, or my grand children’s life times.

2.              A world that is not being destroyed by our human greed.

3.              A chance for all people with or without a disability to reach their potential, this would mean enough food, shelter, and schooling, these are basic human rights.

8.      Have you gotten better over the years?

   How?

   The simple answer to that question is no!

  I have however worked out many alternate ways to do things that I used to do before I became disabled. I am always thinking of solutions to problems. E.g. I can play with my dog by getting in my sling. [ Annie, look at my blog for further information about this, and use your own words]

9.      Tell me a bit about your disability

  I    I think I covered this in an earlier question, see above.

   How did your life change at first?

    I was devastated! I became very depressed for quite a long time. 

 Then I realised that like everything else in my life, I had two choices, 

I could give up and die, or I could fight for life.

   For me the decision was life, it is different now, but it is still an adventure that I will follow until it ends.

A         Anne. 26 / 5 / 2011

 Well that is what I wrote, it made me think, and probably if I had more time I would have writen more. Probably just as well I didn't.

           

      Until next time ---- Think of the world we are leaving

                                     for our grandchildren!!

postscript, sorry about the double letters at the beginning of paragraphs -- blame Blogger!!!!!!