Age Appropriate For Who?

Doesn't his facial expression say it all?

I understand the prinicpals behind the policies that are made to protect people with disabilties but sometimes policies can be disempowering for the people they are designed to help. What I am referring to is "age appropriate activities" for people with disabilities. This prinicpal was designed to create "normalisation" for people with disabilities.It's kind of a blanket policy that envelops the entire disability sector and I am afraid that some people, especially those from one target group in particular are being negatively affected by it & that is people with profound intellecutal disability. It is my understanding, from all the training and study I have done, that good programs are planned, desinged and created with a person centred approach. This person centred approach is taken so that the person being supported is in the best possible situation to live a life of THEIR choosing, not a life that society deems to be acceptable.Is it really societies 'right' to take away experiences that may actually be positive and meaningful to another person, in order to create a feeling of normalcy.... Normal for who?? People with profound intellectual disabiltiy, are being disempowered by being discouraged from participating in activities or engaging in play that is considered childlike because of such a prinicpal. The definition of Age Appropriateness as I understand it is " Activities and/or approaches that meet with the chronological age of a person" ..... I ask how this is supposed to help a person with a greatly reduced Intellectual Quotient, for exampled a 40 year person with the intellecual function of a 5 year old. The way a 40 year old person with a profound intellectual disability see's the world is vastly different from their age-equivelant peers.If a person likes to play with a doll, watch a childrens show and they are actively engaged and happy when doing so, then how can that be harmful to them...How can it be wrong?? and wrong for who?? It does not make sense to me, to force a person into participating in an actiivty that holds no interest for them. An activity that finds them disengaged, passive & unhappy. What good do they get from this??? How is this meaningful for them?? Is this promoting a "GOOD LIFE" for them? If an activity holds value and worth for that person then who the hell are we to take that away from them. I would think that this is a breech of their human right! I would then even go as far as to say it was a "Restrictive Practice", that restricts their rights to personal expression and to access of something that holds value to them.I believe that there is a place for age appropriate activities but I think there also needs to be flexibility with regards to this.... it's not a one box fits all kinda scenario!!!

A Tender Moment!

Yesterday something happened that took all the power I had within to stop the tears from flowing from my eyes. A moment brief in it's existence but one that will remain forever etched in my heart & mind.
Let me tell you a little about what I mean. Yesterday I was supporting a gentleman out in the community. He lives with a significant mental illness and has for all of his adult life. Just leaving the house for the allotted few hours each week is a mammoth effort for him.
Let me explain to you that this man lives with his elderly mother and his mother & he have other significant health problems. The saving graces they do have are each other, their beloved 10 yr cat, the services that support them & the roof over their heads. I have supported this gentleman for several years now and it has taken every second ,of every hour, of every shift for me to get to know him. He is a very private person & only reveals little snippets about himself at a time.
I know one thing that is for sure & that is that he loves his mother more than anything in the world. Even though his illness impedes him somewhat in his ability to display this love, I know it to be true. He told me on one occasion that he lives in fear of the day his mother passes away; not just because he will miss her but because he is fearful he will end up homeless and on the streets. Sadly a large portion of homeless people do suffer from mental illness.
Well, yesterday we went to the local shopping centre and he wanted to stop and have a cigarette before entering the shops. Whilst we were sitting there a homeless man approached him sheepishly. He had noticed my client rolling a cigarette and he politely excused himself and asked if he may have a cigarette. He told my client that he had no money to buy a cigarette. My client was very quick to say yes. He handed the man his pouch of tobacco & his papers to roll a cigarette, paused for the briefest moment and said "Roll yourself another 5 and put them in your pocket for later" The homeless man raised his head in absolute disbelief and thanked him. My client kept chatting with him whilst he was rolling the cigarettes & asked how long he had been living on the streets. The homeless man answered 5 years. He lost everything when he lost his job & had no relatives to help him. He told my client that he slept in the car park under the local Bunning's Warehouse (a hardware store) at night and that there were a few other there too.
My client didn't really say too much more after that and was quick to depart as soon as the man returned his tobacco & papers. I attempted to make conversation about what had occurred a little while later when we were in the car and he indicated to me in his brief response that he didn't wish to discuss it & that was fine with me. I just wanted to offer his the opportunity to talk about it if he needed.

Some would say it was just 5 cigarettes, but to my client and to this homeless man it was so much more than that!
My heart swelled inside my chest at the kindness & compassion my client showed this poor homeless man. It was the very first time I had seen this part of his personality and it warmed me inside like you wouldn't believe.
Wouldn't it be a different world if every person just gave what they could give to help others. Whether it is a cigarette, their time, food or a donations of other kinds.
I like to consider myself a charitable person but I know that I could do more, give more, help others more. Especially at this special time of the year! It really doesn't have to be a lot!!!

Facilitated Communication - Repost from March

Helplessness

Silence

The girl is locked in

To a life of frustration

She waits for life to begin

They see her before them

A blithering mess

Arms flinging about her

This is her life of distress

In her words not mine

She screams in her head

I understand!

I can hear you!

I am living not dead!

No one can hear me

I know they can't see

The voice that's imprisoned

Please...Come set it free

No words, No speech

In limbo she's lost

Lets help her to talk

Doesn't matter the cost

Frustration's her burden

She's 'wanting' to Live

To Learn

Love

&

Communicate

Let's not keep her locked in!!!

by

Katherine

I met a young lady during training last week whose doctors had diagnosed with severe autism at the very young age of 2. At the age of 4 and half, doctors informed her parents that she would never be able to talk or communicate because of her profound disability. She is now a beautiful young lady of 21. She was introduced to a very controversial method of communication known as Facilitated Communication when still very young. Her mothers dedication & drive to provide her with an education has unlocked this beautiful girls creative mind & given her a voice.

I have seen this method of communication in use & I can tell you that it works!! I would love to see every child that is locked in, find their voice but the powers that be are so skeptical that they won't fund it!

I would love for them to meet this young lady, see what I saw & tell her that she's full of it! Because she so obviously is not!!!

I love you just the way you are!!!

My youngest son showed me this video tonight & I just knew that I had to share it with you all here.
Those of you that have been following my blog for a while will already know that I have a brother with a disability & that I work with people whom live with various kinds of disabilities They are some of the greatest teachers in life that I have ever known.
This little boy shares a message with us all to love everyone just as they are... it's just gorgeous.
I'm sure that when you watch it you will be moved just as I was :)

Perpetual Darkness - Magpie 36

Perpetual Darkness

Perpetual darkness had moved on in
Within these walls that were filled with sin
Cimerrian gloom filled the air
One could slice it through without a care

She had lost herself inside this world of pain
She felt like nothing more than an ugly stain
A stain left behind after unimaginable hurts
By the lecherous ways of a sick pervert

Encased in these walls & behind closed doors
The wounds engraved remained fresh & raw
There was but one person within this space
But in truth she wore multiplicities of face

She'd created an inner community in order to survive
It was the only thing that had kept her alive
Trapped inside this dispiriting place
For 30 odd years she'd hidden 'her' face

If only the walls & floors could take away
The destruction of soul and send the pain away
She could throw back the curtains
She could open the door
She could let the sunlight in
Spread her wings & soar!!!

Written by KMF

Inspired by Magpie Tales

Everyone Needs Validation!!!

It's become part of my normal routine, a part of my routine that I love & enjoy!

I enter the doors of this place every Friday morning & it's a hub of activity.

Music is playing loudly, voices are raised high in an effort to rise above the music in competition for air space. The crash of bowling balls rolling down lanes & pins crashing are in this sound mix. A sea of friendly faces await my entrance just as they have done with almost every other face that entered before me. They run , crawl or wheel over to greet me, some excitedly jumping on the spot, some flapping their arms, some smacking their heads, but all with big beaming smiles. The joy & elation they express when they see me is like food for my heart & soul.
They express their love or their like for others so genuinely & without prejudice!

They see us through rose coloured glasses. They care not about your wealth, your race, your social status, your weight, your post code or the car you drive..all they care about is that they are seen, heard & accepted! They gain pleasure & satisfaction in knowing that you care enough to interact.
Society & Medicine say they have a disability but it is my belief that they are less disabled than us able bodied people. No false facades...what you see, is what you get!
Most of them have a passion for life that a lot of us will never understand & a will to persist even though the hurdles they face may in fact be insurmountable.
I look forward to Fridays every week because of the spiritual pay off that I get from being with them & sharing these moments in their lives. They have become like family & I care for each one of them.
We non disabled people have been spoiled by our desires & wants. These beautiful people are happy just to have their needs met. We can learn so, so much from them.

At least this is what I believe to be true.

Sisterly Love

SISTERLY LOVE

I was sitting on the timber bench

At a respite centre for the ill

A young lady came out to sit with me

And her troubles she started to spill

When I heard her story

My heart began to melt

My arms they wanted to hold her

I couldn't imagine the pain she'd felt

She was staying in the centre

As her mind was sick from grief

She had just lost her only sister

And cancer was the thief

The story she told was tragic

Of a life cut way too short

She was the mother of 2 small children

But this enemy she couldn't thwart

She told me she nursed her sister

Right to the very end

I told her this was the greatest gift

That this kind of love transends

This love goes beyond the living

To the soul & far beyond

The love you showed your sister

Will forever hold it's bond

Your sister will remember

Just what you did for her

She will watch you from the heavens

And be your life's chauffer

You have your very own angel

And now she can care for you

From the heavens she'll be watching

Helping you and her babies too!

By KMF

Today whilst I was awaiting my client to join me to go on a social outing I met a lovely young lady whom was on a short stay at the respite home.

She chatted to me for a while about the weather and such things then started to tell me why she was in the home. She told me that her older sister went to hospital to give birth to her 2nd child. She said that while in labour her sister was experiencing excruciating pain in her lower back which they later discovered was due to having broken her back during labour. Further medical investigations reveiled she had bone cancer riddled throughout her body but this was secondary to renal cancer. Her baby was born healthy but her life after diagnosis was painful & very short and she told how her sister although in terrible pain never complained. All I could do was listen & offer what little comfort I could in words. Putting my feet in her shoes, knowing the love that my sister and I share, I can't even begin to imagine the terrible hurt she is experiencing.

I think we as human beings need to be aware that we shouldn't judge others based on what we think we can see. Everyone has a story and not everyones story is the same. Some people have crosses to bare & a carry a pain with them that literally cuts them to the core.

My prayers tonight will be with that young woman I met today. I pray that she will be able to once again find happiness in her life.

I'm Here!!!!!

I'm here!

I can hear you!

I'm trapped in this place

I'm stuck in this prison

Behind this expressionless face

I know what your saying

My answers suppressed

My body it fails me

I'm in constant arrest

They don't know I can hear them

They don't know I am here

They think I know nothing

But I'm ALIVE in here

No words

No movement

They do everything for me

I wish for one moment

That they could really KNOW ME!!

BY KMF

I work in the disability field and throughout my time working with these people I have met some truly remarkable human beings.

It is disability awareness week here in the land of OZ and I think it's great to dedicate a week of awareness to people living with disabilities but awareness needs to be an endless commitment.

The picture above is actually a cover of a book written by a woman whom lived half her life in what is referred to as " locked in syndrome", after suffering a stroke at the age of 32. This syndrome is caused by damage to the lower parts of the brain and the brain stem causing paralysis to the entire body, giving the appearance that the person is in a vegetative state. This woman, Julia Tavalaro was awake within herself but the world outside thought she was gone & was nothing but a shell of flesh and bone. She was cognitively intact and aware of the world outside for 6 whole years before a family member noticed her trying to smile after hearing a joke. This book is her story of finding her voice against what would seem like impossible odds.

I have not yet read this book myself but I certainly intend too ... I think it's wise to always keep in mind that well known & often heard quote "Never judge a book by it's cover" things are not always as they appear!!

Metamorphosis

Unless someone like you cares a whole awful lot, nothing is going to get better. It's not. ~Dr. Seuss

My how she's changed. The transformation has been monumental not only for her but for her aged mother. The only word I can find to aptly describe the change in this woman is 'metamorphosis' , a truly magical transformation. The once disturbed, confused, angry young woman who hated, hit, pushed & kicked her mother had gone. Now she smiles, she's happy, calm, contented & loves to have her mother around. She was not herself for such a long time. She had been trapped inside, drowned out by the noises within her head. Now she soars, she is like a butterfly that has just broken free from it's cocoon. It is beautiful. I am so pleased to have been there to see it.

Picture this: Three ladies, sitting around a roughly set table, sharing morning tea. This has been an unfamiliar scene in this house for quite some time. The soundtrack from the movie Grease is playing in the background.

Conversation ceased when she reached for her mother, holding her & stroking the back of her aged hand so very gently. She captured her mothers attention & they looked at one another. For a moment nothing was said then she asked her mother,

"Mummy, would you like to dance?"

Her mother stood up from her chair, walked into the centre of the room holding her daughters hand. They embraced & started dancing around the room.

Watching these two dance around the room filled me with peace , I knew that I was witnessing a truly magical moment. A moment that many thought was impossible, but here it was, happening right before me. My eyes spontaneously welled with tears. They were oblivious to my reaction because they were so totally lost in this beautiful moment, they had forgotten I was there. It was so beautiful!

I learned so much from this experience. This was the silver lining following many stormy & dark years. Perseverance, persistence & advocating for my client paid off in the very best of ways. Life has forever changed for her, her mother & her family!!!

She feels!

I walk with her, holding her hand, through the crowd of people, they snicker & stare....it infuriates me more than words can express. I want to yell at them, tell them to put their eyes back in heads & their manners back in place. Anyone slightly different or unusual attracts negative attention from judgemental onlookers. Why they can't stop for a moment and try to imagine what this behaviour can do to anothers soul. I will never comprehend!

Their stares cut right through her heart, like shards of glass. It hurts! I can see this hurt, it is visible on her face & in her body language. Each time this happens it's causes another little death in her self-esteem. She may have a disability but she has feelings. Feelings & emotions that are as real as yours and mine.

In a Dark Place! (raising awareness for Mental Illness)

He struggled hard to escape to the land of sleep.
Pacing the floors as he had done so many times before.
He had worn the carpet thin, so much so that the fibers below the pile could now be seen.
His nights were lonely & treacherous , much worse than the days.
During the day he had the reassuring kind voice of his mother to calm his nerves & quieten the relentless voice of doom that resided in his head.
The night brought the whispers...the constant, relentless, nagging voices from that dark, cold place within his head.
That place that he hated so, so much & could never escape from.
If only he could find release from this existence he was living.

He had purchased another leather jacket, this one was a light tan brown, a little different from the others in his growing collection. Along with it he purchased 4 crystal glasses, also different from what he would normally purchase.

The next few days, the voices got louder & much more persistent. He fought fervently to stop them, pacing the floor harder than ever , hitting his head but nothing would shut them up! They kept telling him that he was going to die. That the jacket & the glasses had brought himself were bringing him bad luck. They told him that he needed to get rid of them before it was too late.
He finally gave into the voices & got the jacket (which had cost him a pretty penny) & the glasses and threw them in the wheely bin.
That night he finally got some much needed sleep. His mother told me about the terrible week he had endured & about the things he had thrown in the bin. She asked me if she put them in a box could I take them to St Vinnies when I left, as she didn't want to see them go to waste.

To many this story would sound bizarre & ridiculous. How could anyone believe that inanimate objects could bring bad luck? Just imagine what that must be like! Not only for him but for his mother whom loves him so very much.

It is sad but this is the reality of a person living with a Psychiatric illness.

Break Through the Silence - Facilitated Communication

Helplessness

Silence

The girl is locked in

To a life of frustration

She waits for life to begin

They see her before them

A blithering mess

Arms flinging about her

This is her life of distress

In her words not mine

She screams in her head

I understand!

I can hear you!

I am living not dead!

No one can hear me

I know they can't see

The voice that's imprisoned

Please...Come set it free

No words, No speech

In limbo she's lost

Lets help her to talk

Doesn't matter the cost

Frustration's her burden

She's 'wanting' to Live

To Learn

Love

&

Communicate

Let's not keep her locked in!!!

by

KatherineFredes

I met a young lady during training last week whose doctors had diagnosed with severe autism at the very young age of 2. At the age of 4 and half, doctors informed her parents that she would never be able to talk or communicate because of her profound disability. She is now a beautiful young lady of 21. She was introduced to a very controversial method of communication known as Facilitated Communication when still very young. Her mothers dedication & drive to provide her with an education has unlocked this beautiful girls creative mind & given her a voice.

I have seen this method of communication in use & I can tell you that it works!! I would love to see every child that is locked in, find their voice but the powers that be are so skeptical that they won't fund it!

I would love for them to meet this young lady, see what I saw & tell her that she's full of it! Because she so obviously is not!!!

Remove the Stigma & Understand!

Mental Illness...A cursed, cruel & stigmatic illness. A sentence that those inflicted neither deserve or want. It is one of my greatest wishes that this illness was better understood by society as a whole. That people didn't shy away from those suffering this infliction. It is an illness, like any other. It is as much treatable as diabetes, heart disease, high cholesterol etc

He went to the hospital, troubled & desperate for an end to the noises that invaded his head. He needed a bed, a place where he would feel safe from himself. He was left to sit in a waiting room with the sick & injured whilst in this state.
He should have been admitted but there were no mental health beds available, not just in this hospital, but in any hospital in South East Queensland. There is something seriously wrong with this picture.

This man was fortunate in the fact that he had family that cared for him but there are many that suffer this illness in solitude. They have no one. They are ostracized from family, friends & society at a time when they need someone to care for them more than ever.

This illness is not prejudiced in who it inflicts, it can happen to anyone at anytime. I have seen it in waiting rooms in hospitals, in treatment facilities & in the community. It can affect young, old, rich & poor. It is not selective!

We as a society need to be more compassionate & understanding.

http://www.beyondblue.org.au/

The Neglected Ones!

Earlier this week I watched a documentary about the state of disability services in Australia, it was called 'Breaking Point'! I think the title 'Breaking Point' is quite a conservative title to be quite frank ... I have actually seen families go beyond breaking point to the point of ruin. The disintegration of the family unit, broken marriages is rife in families living with the strain that occurs when caring for a loved one with a disability, especially those that have disabilities that cause unwanted challenging behaviours. I have seen families, so desperate for assistance, that are suffering from sheer exhaustion .. they have felt they had no other avenue than to relinquish the care of their loved ones giving up their parental rights by handing them over to the state. It is a drastic measure but for some it seems to them to be the only option available. It is a sure fire way of receiving the care required to alleviate the situation. That.. or as is mentioned in the documentary ... being taken away in pine box.

The variance of feelings I experienced whilst watching this program left me feeling angry & exhausted by the emotion that I felt.

The field of disability services is filled with truly wonderful & caring workers but yet the system as it exists today is in ruins. It is a fact that the need for a variety of disability services is in such high demand. The 'need' for these services far outweighs what is available in this country. Funding is limited & there is most definitely not enough. I personally feel that the criteria for services is selective & unfair. I believe that what is good for one should be good for all...but sadly this isn't how it is!

There are waiting lists of up to 3 years for some services & the sad reality is that many families looking for assistance are in heart rendering situations & are desperate for the help ... YESTERDAY not years from now! Tomorrow may be too late for some!!! This is a case where the saying, "Better late than never" holds no truth!

Disability Services in Australia needs reform & it needs it now!!

Let's not neglect these wonderful people & their families any longer. We are supposed to be a lucky country but yet I see no luck in this situation. Life has already dealt these people more than their fair share of troubles & hurdles. Wouldn't it be lovely if we could make their lives just a little easier. They deserve it!

Trophy Day!

What a truly special day it was for them all today. The anticipation of this day has been building for weeks. For some of these beautiful people, this will be the only celebration that they will experience this festive season.

Each of them are called by name to receive their team trophy. For each one, the expression of excitement is written all over their faces when they hear their name called out loud. This is followed by a chorus of cheers & applause. They radiate pride, which is what this is all about. The building of pride, of achievement, of self esteem!

It is wonderful to see them achieve & grow.

Rest In Peace Eunice Shriver!

Rest in Peace Eunice Shriver!

Your time on this earth meant so much to so many people!

You have given truth to the saying that one person can make a difference.

You have lead by example.

Through your love & tireless efforts you have fought tenaciously to change the world for these people. You have taught the world to look through different eyes ... to see the beautiful nature of these wonderful people.

You taught the world that people of all abilities can learn, can love, can grow, can contribute & can shine. That we are all deserved of love.

Your dedication has seen a shift in the stigma that surrounded people with mental & physical illness.

I work with the disabled. I experience every Friday just how well they can achieve. Just how well they can love. I see first hand how they help eachother, without reservation.
Through my interactions with them I have come to the realisation that there is much that we could learn from them.

Your dedication to the cause has lit a fire in the bellies of many.... you will not be forgotten.

You achieved what you set out to do ... Thank you!