The Struggle for Equality...

I get so frustrated sometimes.

I hear and see people demonstrating and debating and getting riled up over equality for gay couples, equality for working parents, equality for single parents.

I see people weep for animal rights, for the right to love who they want, marry who they want, live where they want, recover from drug or alcohol addiction, and be educated like everyone else.

There are high profile people campaigning to protect the environment, the Orangutan, the rights of Indigenous people to their land and the footprints of Dinosaurs, millions of years old.

Who stands up for people with a disability?

What if ... you were Indigenous AND disabled...

... disabled AND had a same sex partner....

...disabled AND homeless...

...disabled AND substance addicted...

...who campaigns for YOU?

Where are the high profile Celebs who will put their name and face to the National Disability Insurance Scheme here in Australia?

They don't exist. And shame on them.

People with a disability are not soft and cute and fluffy, threatened with extinction, trendy or fun to be photographed with.

We, the families are their saviours, their heroes, the ones who stand up for their rights.

Equal rights.

And it's bloody tough.

Come on people. Put your name and face and energy behind something that's not trendy or beautiful.

Something that matters NOW.

Something that is truly life changing.

Please.

The environment and the Orangutans have enough supporters.

People with a disability do not.

Please care.

Celebrations...

Mr A turned 21 earlier this year.

This is one of many milestones he has reached recently.

Along with moving into his own home, setting up a ten pin bowling team, socialising regularly with friends, starting his own small business and owning a pet, it's one he's justifiably proud of.

It seems the norm these days for 21 year olds to still be living at home with Mum and Dad. Therefore Mr A is something of an anomaly in some circles. Add in his level of disability, and he is perhaps, somewhat unique.

The practical steps we needed to take to reach this outcome, are documented elsewhere in this blog.

The emotional ones are many and varied.

We never for a moment accepted that just because Mr A had a disability, that he would not just do what everyone else his age does...within reason. Riding a motorcycle is not a realistic goal, nor is becoming a brain surgeon, ballet dancer, or ball player. Although of those three, it was probably only ball player that was of any real interest...lol!

But attending a mainstream school, gaining a tertiary qualification, having a wide circle of friends, and moving into a home of his own, were all achieveable. And have been achieved.

So, what's next?

Number One, top of the list....a girlfriend.

Hmmm....online dating looks a possibility. With shaking hands and tremulous heart, we embark on the next mission. Surely it'll be easy compared to what we've done so far?

The Dr Seuss style cake depicted here is representative of our approach always. It doesn't have to be perfect. It just has to be right. For each of us there is a Miss or Mr Right out there. Surely for Mr A, it's no different.

Wish us luck!

1 thing, 1000 times or The Neverending Staircase

Did your Mother ever say to you 'If I've told you once, I've told you a thousand times....'? Did you ever wonder what it meant? In Mums' case, it was an expression of frustration. But let me say, you don't know frustration until you have a child with a disability.

This illustration is probably an appropriate visual. A neverending staircase, going round and round in circles, leaving you feeling like you're going nowhere.

When you have a child with a disaability, you learn that everyone's first answer is 'no'. And it doesn't matter what the question is.

Some questions we've asked that have been met with a no are:

"Can he play a sport?"

"Can he join in with the other kids?"

"Can he join your acting class/bowling league/football club?"

"Can we have a different sort of wheelchair?"

"Is there somewhere for our son to socialise with members of the opposite sex?"

It's all no-no-no.

What we've learned over 21 years and some few months, is that sometimes it's a case of doing one thing a thousand times to get the result we need. Whether it's making one phone call a thousand times to the same person, or the same phone call to a thousand different people, it seems to take that to make things happen.

After what seems like a thousand thousand phone calls, letters, emails and conversations, our son finally achieved some funding to live independently.

After nearly a thousand more, he is now setting up a bowling team of his own.

And I guess it'll take another thousand to help him find a life partner..his next dream.

As the Chinese proverb says... The journey of a lifetime begins with but a single step.

Many, many steps, a thousand thousand things done a thousand thousand thousand times.

It's all worth it in the end.

Look how far we've come already.

Stairway...er...Ramp to the sky...

Yet again, we find ourselves thwarted by the ignorance of others, in our mission to show our son that the sky is the limit for him as much as it is for them.

Who would think a simple thing like joining a bowling league would be such a pain in the proverbial?

Most league bowlers take their sport very seriously and don't have the time or patience to foster a disabled team player. This we already knew from our previous attempts to have him join an existing bowling league.

So now we find ourselves doing the rounds, yet again explaining, and singing Mr A's prowess as a bowler to the ten pin bowling alleys in an attempt to set up a small league for him.

Why does it need to be so jolly hard?

Stay tuned. Let's hope it's good news this time.

A different 'normal'....

Mr A is a great guy.

He considers himself so normal, it's ridiculous. Sometimes he's so convincing, I almost expect him to rise from his wheelchair, point at me and wink and go 'ahhh...gotcha'...before cracking up laughing.

That would be  a 21 year old joke on me!
 

Remember that Mr A has Cerebral Palsy Spastic Quadriplegia, so that scenario is unlikely to say the very least.

He loves dining out and is a real 'foodie'. He can pick storebought lasagna from homemade with his eyes shut. He loves sport and is a walking...sorry...wheeling sports encyclopaedia. He likes doing what other guys his age like doing...perving at girls, talking about girls, tryng to come up with ways to meet/impress girls, and making plans...to meet girls. He wants to travel, have his own business, work on getting a 'six-pack' (abdo muscles)...to impress the girls, and take Japanese Language Lessons. In short, we try anything and everything we can, to make sure he has very normal life experiences, and has the conversational topics at his disposal that we all do.

When I recently raised the topic of Mr A starting up a business with my husband, his first reaction was 'but he's not going to make much money out of that'...to which I replied 'does it matter??'. The thing about having a business, is that it's a talking point...and equaliser. Now when someone says 'so what do you do Mr A?'...he doesn't have to say 'I'm on a Disability Support Payment'. He can say 'I have my own business'...and he's off. Talking being one of Mr A's strong points :P

This, I think, is one of the reasons he is living independently with such cracking success.

From a very early age, he saw his brothers, older by 10 and 11 years, study, move out of home and lead lives very separate from ours. So, for him, that was 'normal'. He then had an expectation that he would do the same.

Whilst this was a terrifying thought for me, particularly, we had to accept that for his long term future, this was the most sensible prospect. We had to face our own mortality within that picture, which is never easy, but for parents of a disabled child, this must be done. Our greatest fear is always 'what will happen to Mr A when we are gone?'. The best way to ensure that his life without us, remains as close as possible to the life we want for him and that he wants for himself, is to put that life in place while we are still around to guide the process.

Our path to helping Mr A live independently has been frustrating, exhausting, excruciatingly slow sometimes, eye-opening, time consuming, life altering, and ultimately, exhiliarating. We always knew we weren't just doing this for our guy, but for all the other young men and women out there like him, who also expected to live an equal life to their peers.

We have lobbyed politicians over many long years, bombarding them with mail, email, phone calls and threats with legal action, armed with the United Nations Convention on the Rights of Persons with Disabilities, which you can read more fully here.

This was actually a very important tool for us, and I believe, entirely instrumental in our success. Certainly our Prime Minister and her underlings jumped when we waved it at them and threatened a Human Rights Action. Were we serious...you blinkin' betcha we were.

Fortunately it didn't come to that, and strangely we set some sort of record for the length of time Mr A spent on a Community Housing waiting list....a short and sweet six weeks!

In fact, in the end it all happened so quickly that we were largely unprepared and were caught out on many different levels.

But we knew it was an opportunity not to be reckoned with, so we went with the flow. We learned much and things haven't always gone smoothly, but here we are, two years later, with recurrent funding approved to support Mr A (again only won with a long hard and bitter battle) in his lifestyle, and the family managing his funding to make the best possible use of it.

If you'd told me three short years ago, that we'd be where we are now, I'd have laughed and called you a fool.

But it just goes to show that slow and steady wins the race.

As for Mr A, as he approaches his second anniversary in his own place, things couldn't look better. He has a wonderful team of Personal Assistants, three guys his own age and one more Maternal lady to keep things on an even keel, and everyone is dedicated to seeing things move forward in the most positive way.

Not enough is done to encourage young male workers in this field and I can only credit Mr A himself with attracting the right sort of people. The three guys we have are worth their weight in gold and I pinch myself every day that things have gone as well as they have.

 

And perhaps that is the most important of all.

Make plans, move forward, have an equal life mapped out for your loved ones. Don't let their disabilities restrain you or them in your thinking. Allow them to live the best possible life they can.

Dream big for your disabled children. If you don't, no-one else will.

Parents are the only ones who can enact change. Don't fear politicians. We know that they are just humans like we are. Lord knows some of them only barely fall into that category...lol! Lobby, argue, rant and rave, call current affairs programmes and newspapers to engage them in your story, write letters, send emails, and most importantly, have a PLAN. And work slowly and steadily towards it. Be informed, follow politics, both local and global, be informed, arm yourself with success stories like ours.

You can achieve the 'impossible'. We're living proof of that.

Challenge your beliefs...

Challenge what you believe about what people who are disabled can be, do and achieve.

Meet someone who has a disability. Engage them in conversation. Ask them intelligent questions...not just 'how's it going'.

Go on... do it.

You'll be surprised.

Perspective....

source:http://media-dis-n-dat.blogspot.com.au/2010/06/colorado-wheelchair-user-complains-that.html

It was while I was searching for an image of a smiling, happy person in a wheelchair, that I stumbled across this one. I laughed. This picture represents the twin things that have ruled our lives for the past several years.

My son in his wheelchair, and my daughter with her dance aspirations. It's a photo I could have taken myself to depict 'my family'.

Interestingly the content of the blog from which I sourced the photo (linked above), had a very different story attached to it.

It was a story of a face-off between a lady in a wheelchair, and the choreographer of a ballet. It's a thought provoking recount of how one's own situation, dictates how we react to various scenarios.

Certainly I have been known to be hyper-sensitive to many disability related issues.

I recall getting in to a fiery debate regarding the use of disabled rest room facilities by a plethora of 'others' who are not 'disabled', but consider themselves so. They are not 'disabled' by nature of having young children in tow, or being in a hurry to 'go'. That is 'incovenienced', not 'disabled'. Or so I said at the time.

The debate did not go well, with me leaving the discussion fairly upset.

I couldn't make them see, and clearly they felt I was being unreasonable.

The sign on Rest Rooms and Parking Spaces clearly depicts a person in a wheelchair. It does not depict a mother with a shopping trolley or a pram, or someone whose left their run to the loo too late to want to wait in a queue. People in wheelchairs can not use other facilities. Mothers with prams, and people with bladder control issues, can. It's actually a simple courtesy.

I have a big van with a ramp and a government issued Disability Parking Permit, which clearly states 'to be used only when transporting the person listed hereon'. I would no more park in a disabled parking bay without my son on board, than fly to the moon. Yet I see others do it all the time. They take exception when I say something...and I always do.

Similarly, no matter how many children or babies I've had in tow (and I have four children), I have never ever used the Disabled toilet facilities. It's wrong. There are Parent and Baby Rest Rooms in most modern shopping centres these days. Why use the very few Disabled toilet facilities when the Disabled have nowhere else to go?

I accept that 'some' Disabled facilities are dually used by customers mobilising in wheelchairs and Parents with children where signed as such. But that is not in the majority.

I've had to haul up stakes half way through shopping and go home with Mr A in his younger days, because someone decided that their needs for 'convenience' were greater than his for 'necessity'.

Please, please, please remember that it's tough enough for people in wheelchairs and their families.

Don't make it tougher by parking in their parking bays and using their Rest Rooms.

Thankyou.

The importance of Family...

There was a time not so long ago, when parents surrendered their disabled children to 'the authorities' for care. A disabled child was considered a burden and 'normal' folk, not considered qualified to care for them.

This resulted in enormous grief for many parents, and a terrible situation for many of the children concerned. Abuse was rife, and neglect, commonplace.

Even now, there is a culture that suggests that it's best for the family to allow 'the experts' to manage the care of their disabled loved ones.

This is of course utter nonsense, but it's out there.

Who knows better what needs to be done for their child or adult dependent, than the very people who live closely with them and have their best interests at heart? The Experts or the Family?

We have battled this for our son's entire life. We have steadfastly ignored many Expert Opinions, always being guided by what we knew to be the best course of action for Mr A.

This has been considered brave by some and foolhardy by others, but had we not dug our heels in on many an occassion, Mr A would not be the person he now is living the life he now has.

If we'd followed Expert Advice, Mr A would be trussed up like a turkey with various orthotic appliances, living at home with us and his younger sister, accessing 'Day Respite'...another term that fills me with alarm on one hand and fury on the other.

Instead, he wears orthotics for short periods of time in the privacy of his own home (note I said 'his own home'), and attends sporting events, college, and outings at whim, and generally has the same choices for an independent life that you and I enjoy.

So, who's right?

I must say though, that this would not be possible without the help of our large and extended family and the help of Mr A's very dedicated Personal Assistants. He has a team of four PA's. Each of them chosen for their specific skills or ties to Mr A and their genuine interest in supporting him in living an Equal Life to that of his able bodied peers. To them we are truly grateful.

The sense of pride and achievment that Mr A feels in living independently is greatly enhanced by his ability, through the support of his team, to arrange and participate in family events, without us being directly involved. He hosted Fathers Day last year, with the help of his Managing Assistant who preprepared a sumptuous brunch for us. He is currently planning his own 21st birthday party with assistance from the same person. He attends family gatherings with their help with transport and their sensitive and seamless support. These things all make him feel truly adult and accomplished.

We of course, see the changes in him and his stature in the eyes of his older brothers, who see him now as the adult he is, and not the 'little' (and therefore helpless) brother.

Family truly does know best.

A Home of their own...How the NDIS will help...

My son has a home of his own, as every young person should. It's not big and it's not grand, but he's put his stamp on it and it's his.

Now you might think that this has been an easy process when I say it 'just like that'. But you would be wrong. The hoops we've been made to jump through to get to this point would make a strong man weep.

One would assume in this enlightened day and age in a civilised culture such as we have here in Australia, that when a young person with a disability says that want to live independently, the corporate and government processes would wholeheartedly support them.

You would be wrong.

Because it's not just the physical 'roof over the head' for many of these young people. It's finding a way for them to live a supported life with the assistance of many others, who, by way of their involvement, need to be remunerated. In other words, you need paid support workers.

And for someone like our guy, that support does not come cheap.

Now, in some countries, this paid support is indeed a 'given'. It's just there. Not here in Australia, although that is changing. My husband and I have had to lobby politicians on all sides of the track relentlessly, doggedly and persistently for 5 years.

But finally it's happening. We've had word that a funding package has been approved for our guy, for him to be funded for the maximum amount on a permanent basis. The feelings of relief for him and for us are immeasurable.

Sadly there are many families like ours, who do not have the determination, werewithall or internal strength to do what we've done.

So please, when the time comes, support the introduction of the NDIS or the National Disability Insurance Scheme here in Australia.

For this is the only way that people with a disability and their families can seek to live out their lives with the dignity and choices that the rest of us take for granted.

Thankyou.

Waving, not Drowning....

In the course of Mr A's life, we've had many opportunities to join a 'support group'.

I did so, when he was first born, at 28 1/2 weeks gestation.

It was a Premmie Parents Group.

I didn't like it. They all wallowed in self pity a lot, when I just wanted to know what to do next. When I met up with some of them years later, my son was the only one who was living a 'different' life through being a Premmie. He was the only one with a life affecting disability. The others were all fine. So why all that wailing and breast beating at the start?

That one meeting, put us off support groups forever. To this day, if I hear the words, I run screaming from the room.

The trouble with support groups is that often they're not all that supportive. It's more like a 'drowning in unison' group. That's how I felt anyway. I was already overwhelmed by the situation I suddenly, and unexpectedly found myself in, and sitting around moaning about it really wasn't helping.

I needed someone NOT in my situation at that time, to grab me by the hand, pull me from the quagmire of emotion, fear and anxiety, and show me how the future could be and would be.

I was told at the beginning that Mr A would never walk and would have to attend a special school. Well, they were right on the not walking, but competely wrong on the 'special' school. But let me say this. There's more to his life than the lack of ability to walk. Walking is over-rated as far as he, and we are concerned. He gets around just fine and dandy in his motorised chair, always has somewhere to sit, and gets preferential treatment at sporting events and concerts. And yes, he attended a 'special education unit', but this unit was on the campus of a mainstream high school, where he was valued and accepted as part of the normal throng of high school life. He went to the school camps, he attended the semi-formal and formal, he gave speeches, played sport, and cheered the school teams on at sporting events. He also completed a normal high school curriculum, earning an OP (Australian high school competency score with the highest being 1 and ranging through to the lowest at 28), of 12, bettering many of his 'able bodied' peers. In the end, the two things that we feared most at the start, have not been things to be feared at all.

We were also lead to believe that he would never live independently, and would forever be tied to us, depending upon us for every daily living task. Well, we proved that one wrong too, but that's a long, long story for another day.

I needed hope when Mr A was first diagnosed, and frankly it was thin on the ground. The service organisation wanted to tie him up in knots with equipment and orthoses, and I just wanted my son to be as normal as possible. They treated me with disdain when I wanted to pursue 'alternative' treatments, but came running to pick my brains after I did so, and had a good outcome.

They argued and debated so many of our decisions, which, long term, have proven to be the right decisions. Things like having rods inserted into his back at the age of 14. This is considered a standard procedure here for young people who have CP amongst other things, and who exhibit low trunk tone and scoliosis. It's a painful procedure, with a lengthy recovery. It would have meant around 4 months off school for him, right when he was settling in and had a large group of friends, and a difficult time for me as his carer, as a full trunk cast on a young adult who is already totally physically dependent is a challenge to say the least. In consultation with Mr A, the surgeon and ourselves, the decision was taken NOT to subject him to this ordeal. For him, it's been the right decision. He would not have gained any significant measure of trunk control over what he already has, and the idea of having a foreign object inserted next to my sons spine, just didn't sit right with me or him.

If I'd been in a 'support group', I may have been differently swayed. That's the other thing with support groups. The 'group' always expects you to fall into line with their way of thinking, and so frequently has our thinking for Mr A and his future been out of step with current party line, that we probably would have been booted out as heretics, anyway!

For us then and now, our mantra is 'no support groups'.

When we had our hands emerging from the quagmire, we weren't drowning, we were just waving goodbye.

Tattoo sleeves for hand splints and ankle foot orthoses...

Here's a thought that came to us when we collected Mr A's most recent hand wrist splints. These have never been attractive things. I guess that goes for nearly all of the paraphernalia that comes with adequately supporting our disabled family member! But as soon as I saw them on him I knew I had a solution.

Those fake tattoo sleeves are just the thing. They come in all manner of colours and designs and are just the right idea to jazz up orthotics of all kinds at very little cost. I've ordered a dragon one for Mr A (they're readily available on eBay)and I guess I'll be using some sort of fabric glue to apply it.

I'll let you know how it goes!

Photos soon!