Reflections

Notes on paperI remember just wanting to talk to someone who would know, what it was like, who had been through it, and who could tell me that I wasn’t going to feel like this forever." Noreen (mother) - from the video ‘It’s a Long Road’.
The thoughts and words of others who have, or are going through, similar experiences as yourself can be immensely comforting and inspirational. This page provides a listing of stories and poetry written by parents of children with physical disability and by people who have a disability themselves. Send us your story or poem for display on this page

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Stories

Communication Frustrations

Graham Clarke, of South Africa, writes of his frustrations in attempting to communicate following a stroke that left him completely paralysed and unable to speak - read more about Graham

“Graham, do you want me to do it or not?!” my mother yelled. Yes it was one of those days. I had just been transferred to the hospital in Durban, It was the early days of acceptance and we were busy having a tiff. “How the bladdy hell do you expect me to answer a choice question!” I spelled out, groaning in the process. She pulled back when it was pointed out to her. No, she didn’t apologise, I think we knew that everything was part of the disability learning process. She rephrased the question…

Read the full details of  Graham’s story (PDF - 40Kb)

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“Welcome to Holland”

By Emily Perl Kingsley (mother of a child with Down Syndrome) ©1987 All rights reserved 
Read a transcript of an interview with the author by Creative Parents

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this ...

When you're going to have a baby, it's like planning a fabulous vacation trip … to Italy. You can buy a bunch of guidebooks and make your wonderful plans. The Colosseum the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian.  Its all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says "Welcome to Holland.

“Holland?!?” you say. “What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a new language and you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And the rest of your life, you will say "Yes that's where I was supposed to go. That's what I planned".

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

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Celebrating Holland - I'm Home

By Cathy Anthony - a follow-up to 'Welcome to Holland' by Emily Perl Kingsley

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned. I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful for this destination has been richer than I could have imagined!

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The Dent in my Life

By Meagan, a 11 year old girl writing about her little brother. The story was a winner in the Nestle Write Around Australia Competition.

Sometimes I really hate him, hate him, hate him, hate him! Why me? I know it’s not his fault but it’s hard.

He does CRAZY things, like the time he yelled at me because his croissant got burnt, and he thought it was my fault.  Or the fact that he finds misery a pleasure, and always tries to rub things in. It’s hard to live with him; it makes the big dent in my life, the big dent that is not supposed to be there.

The worst thing he does is hitting. Whenever he’s angry, he hits me or hurts me in some other way. I’m all bruised and scarred from him. It is almost impossible to live with him in peace and I don’t think anyone who is inexperienced could handle him.

Then there are the people who tease him. They say to his face that he can’t run properly and then they run away because they know he won’t be able to catch them. They teach him swear words on purpose, and tell him to say them to a teacher. Sometimes I have to stick up for him, and get other kids to leave him alone.

He has always been violent. I am sick of him coming home and telling us that he head-butted Ruby or he smacked Jake. I don’t know what will happen as he grows up. Will he out-grow his violent ways?? I just don’t know.

He only learnt how to walk at the age of three and talk at two. He still doesn’t talk that well but it’s possible to understand him. I always wished he was normal, but things like that just aren’t possible.

We still take him to physio’s and doctors once in a while but it’s not possible for things like that to be undone. No-one knows what it is. It’s rare. I don’t think anyone else has it, but doctors are still searching for someone like him. So far no luck. Mum has put him on a non-preservatives diet and gives him a calm-down tablet every day (he loves running up and down the hall flapping his arms like a mad chook, screaming his head off).

He is good with a football though. He can bounce it without it going all over the place, and he can kick it perfectly straight.

He makes me smile when he muddles up the words. “Who was that friend of yours Meagan? Cactus?” (her name was Candice!).

Sometimes he says strange things, such as “I sprained my tooth” or asking my mum “How did you knit me?!

I love him no matter how hard it is living with him because he’s my little brother with his disability.

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Perseverence

Jim Abbott - photoA small part of a speech by Jim Abbott, a one-handed major league USA baseball player.

Sticking with it. Life is full of ups and downs and how we respond to adversity makes us who we are. You may have seen the highlights, the good times in my career, but there were many difficult times.

In 1996 I went out and had what might be one of the worst years a pitcher can have. Two – eighteen.

Sports had always been my crutch. For an insecure kid who wanted very much to be accepted, success in athletics covered up a lot of hurt for a long time. But in 1996 it all came crashing down. I was failing. As hard as I tried it would just get worse. By the end of they year I was sent to the minor leagues for the first time in my life. I'm not going to tell you that I handled that year with all of the grace I would have liked. All I could do was to keep on trying. The following spring I was released from the Angels. Cleaned out my locker in front of my friends and drove home alone through the Arizona desert. My whole world was upside down. I missed it so much. I desperately wanted to get back, but I was also gun shy from going through a year and a half of failure.

Inspiration can come from unexpected places. An old manager called, he told me that he didn't think I was finished. And that's all it took, we started working.

Finally things turned around instead of baby steps those I started making large strides until I was able to call my wife and tell her the Chicago White Sox had just called me back to the big leagues. I could have kissed the mound. To make it back seems to me as great an accomplishment as making it in the first place. That experience illuminated to me that no matter how far we go in life we will continue to be tested. There is no finish line.

More information on Jim Abbott, one handed baseball pitcher, and other Motivational Keynote Speakers

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My Journey

By Trish, mother of a Novita client

Trish - photoI look back and wonder where our journey began. Was it when our daughter was 10 months old and was assessed by an occupational therapist, speech pathologist and physiotherapist as being ‘developmentally delayed’? Or was it when she was 6 months old and we started to notice that things weren’t quite right? Or at 3 months when she spend a week in the Women’s and Children’s Hospital on oxygen for severe bronchiolitis? Or maybe even before that? I look back at things that have happened and wonder, is that where things started to go wrong? Was that event significant? If only I could pinpoint ‘the moment’, maybe I could answer that other burning question …. “Why?

Of course I realise now that none of that really matters. We are left with the realisation that regardless of how it happened, our child is unquestionably unique. In the scheme of things labels like Epilepsy, Ataxia, Cerebral Palsy, Asthma, Retardation matter not a bit, only that we learn to live with this unique child.

That learning process is a journey all of it’s own. There are mountains to climb and valleys to cross, roadblocks of every shape and size and every now and then, large gaping holes in the road for the unwary. Luckily we discovered that you don’t have to travel this road on your own and the scenery is some of the most beautiful in the world.

The first steps along this road are taken with tottering steps. You know something is wrong, but you don’t know what so you seek help. But what do you do with that help when you find that you have four different answers as to what ‘the problem’ is? All from qualified, experienced people? That’s not to mention the advice you get that is unsought, from unqualified, inexperienced people. You realise of course that you’re facing a mine- field on the road and you’re very frightened that one wrong step will lead to disaster. Well there is no easy answer except to take a single step, and then another. If you find you’ve strayed on to ground that is unstable you and regroup. It’s not a race. You don’t have to reach your destination tomorrow. In fact this is going to be the longest, most difficult journey of your life.

I’ve been told along the way that “Only special people are given special children to care for” (Yeah? … well, I’d like to be a little less special thanks), and “God only gives you as much as you can handle” (Apparently He thinks I can handle a LOT!!). I’ve read books written by people who have children with disabilities/special needs and invariably the experience has been wonderful and enlightening and a gift even! I wish that were so for me, but it’s not. There’s almost nothing I wouldn’t do to have a normal, healthy little girl. I grieve often, for the roads that we can never travel and for the at times unbearable darkness of the path that we’re on.

Whilst this road is not exactly a gift, it’s not all bad either. Along the way we have met some incredible people that we would never otherwise have met. People that have touched our lives and made them better. I sometimes look at these people and wonder ‘How do they cope with the load?”. Do you know what’s funny? People look at us and say the same thing! We have therapists and carers and coordinators who are like family now and make our journey a brighter one.

On a personal level I look back and I’m amazed at how far I’ve come. On this journey I’m learning all the time, about tolerance and patience and strength (when you just don’t think you have any left) and courage and although it sounds trite, about unconditional love. I’m learning about advocacy, for myself, my child, my family and for other families in similar situations. I’m learning to seek advice and make informed decisions. And I’m learning to find the joy in the simplest of things. Perhaps it is a gift … it’s just a matter of perspective.

So the journey goes on and our steps are becoming stronger, more sure of where they need to go. I don’t doubt that the road will continue to be really rough at times, there is no magic wand to make it all smooth and easy. We are however, becoming more skilled and experienced travellers.

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Poetry

A Walk In My Shoes

Anonymous

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse.

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract.

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head.

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.

“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent..
And on goes the attack.

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side.

We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions….

But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity.

He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!

Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope.

But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride.

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don’t get excited
Over expensive things
We jump for joy
With the progress work brings.

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky.

So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you…

That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned.

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A Mother's Love

By Lydia Bresolin when her son Aiden was diagnosed with juvenile arthritis (read more about Lydia).

A Mother's Love never ends
Broken hearts are hers to mend
The silken threads of family
Her web of love for all to see
Her open arms are welcoming
A smile that makes the angels sing
A Mother's Love is perfect pure
All joys and sorrows she endures
The look of love upon her face
A love she gives with each embrace
With tenderness she teaches love
A rare gift sent from God above.

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Don't Quit

Author unknown

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest if you must, but never quit.

Life is strange with its twists and turns,
As everyone of us sometimes learns,
And maybe a failure would turn about,
If we have the courage to stick it out,
Never give up though the pace seems slow,
You may succeed with another blow.

Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you're hardest hit,
It's when things seem at their worst,
That you must never quit.

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Everlasting Flame

By Pauline Gill

I have learned to let go….
to not hold grudges
to not be jealous of others
to love and expect nothing in return.

I have learned about sorrow….
about heartache
about how life can be cruel
about how life can be hard and
shows no mercy to whom it touches.

I have learned about time….
how one moment in time can change your life forever
how time can stand still
how important it is to make the most of each day.
Life is too short, like the grass
here today, gone tomorrow.

I have learned about wishes….
wishing things would go away
wishing I could change the past
wishing I was someone else
wishing life was easy.

I have learned about watching….
watching someone struggle to do the smallest thing
watching a child sobbing in pain
watching others worry about things that don’t really matter
watching…. waiting for a miracle.

I have learned about weeping….
weeping for what could have been
weeping for dreams that are shattered
weeping for the future
weeping for lost friends
weeping because it’s too hard to keep going….

And I have learned about light
one single, solitary flame that refuses to go out….
Though my tears have drenched it,
my breath blown across it,
my broken heart fallen upon it,
it continues to shine – to beckon me….
to show me there is hope
there is a future.
A light so strong that no darkness can ever put it out.
An Everlasting Flame!

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I Am The Child

Author unknown

I am the child who cannot talk.

You often pity me: O see it in your eyes.
You wonder how much I am aware of .... I see that as well.
I am aware of much.... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater for I cannot express myself nor my needs as you do.
You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated,
I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me.
I do not give you rewards as defined by the world's standards.... great strides in developments that you can credit yourself;
I do not give you understanding as you know it,
What I give you is so much more valuable..... I give you instead opportunities.
Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers.
I am the child who cannot talk.

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I am the child who cannot walk.
The world sometimes seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, Oh I've dropped my spoon again.

I am dependent on you in these ways.
My gift to you is to make you aware of your fortune our healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me, I always notice them.
I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn as easily, if you judge me by the world's measuring stick.
What I do know is the infinite joy in the simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. if you allow me, I will teach you what is really important in life.
I will give you and teach unconditional love.
I gift you with my innocent trust, my dependency upon you, I teach you of respect for others and their uniqueness.

I teach you about how very precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you about giving.
Most of all I teach you hope and faith.
I am the disabled child.

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Shiny New

By Lydia Bresolin - read more about Lydia

I long for days where joy is near
My son he beckons, lend me your ear
“Why is it mum, when I’m awake
My body seems to ache and ache?
And in his prayers he asks of God
“Please send me a letter, write I’m not odd
Why don’t you take this pain away?
I know then I could play all day”.
And in my dreams, his words sound through
My life and his are shiny new
All hopes and dreams fade to grey
When I awake, begin the day
I see him smile, his face so dear
The pain surrenders, no more fear
He gently whispers, “Mum I love you,”
No greater words, dreams do come true.

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Slipped Away

By Rex Stephenson, Canada -  read more about Rex

Your world lost a friend today,
you turned around and she slipped away.

The pain you feel is hard to bear,
I know it hurts deep down inside.
You think your grief will never wane,
but this too I know will soon disappear.

Your world lost a friend today,
you turned around and she slipped away.

When your pain recedes in time,
the happy memories will come to mind.
The joy you shared will ease the way
to fond remembrance of her one day.

Your world lost a friend today,
you turned around and she slipped away.

Your friend now so quickly gone,
but the essence of her still lives on.
It's deep in your heart and
there she'll always stay
from now until your final day.

Your world lost a friend today,
you turned around and she slipped away.
She may be gone but in your heart she'll stay
from now until your final day.

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Solitude

From the book ‘Spirit Walker’ by Nancy Wood, a collection of poetry of the native American Pueblo people.

Do not be afraid to embrace the arms of loneliness
Do not be concerned with the thorns of solitude.
Why worry that you will miss something?
Learn to be at home with yourself without a hand to hold.

Learn to endure isolation with only the stars for friends.
Happiness comes from understanding unity.
Love arrives on the footprints of your fear.
Beauty arises from the ashes of despair.
Solitude brings the clarity of still waters.
Wisdom completes the circle of your dreams.

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Unmasking Grief

Author and source unknown

Please Hear What I'm Not Saying
Don't be fooled by me;
Don't be fooled by the face I wear
For I wear a mask, I wear a thousand masks,
Masks that I'm afraid to take off, and none of them are me,
Pretending is an art that's second nature to me,
But don't be fooled, for God's sake don't be fooled.

I give you the impression that I'm secure, that all is sunny and unruffled with me.
Within as well as without, that confidence is my name and coolness is my game.
That the water's calm and I'm in command, and that I need no one.
But don't believe me. Please. My surface may seem smooth.
But my surface is a mask, my ever-varying and ever-concealing mask.
Beneath lies no smugness, no complacence. Beneath dwells the real me in confusion.
In fear, in aloneness. But I hide this. I don't want anybody to know it.

I panic at the thought of my weakness and fear being exposed.
That's why I frantically create a mask to hide behind-
A nonchalant sophisticated facade to help me pretend, to shield me from the glance that knows.
But such a glance is precisely my salvation. My only salvation- And I know it-
That is if it's followed by acceptance, if it's followed by love.
It's the only thing that can liberate me, from myself, from my own self-built prison wall,
From the barriers that I so painstakingly erect.
It's the only thing that will assure me of what I can't assure myself, that I'm really worth something.
But I don't tell you this. I don't dare. I'm afraid to.

I'm afraid your glance will not be followed by acceptance and love.
I'm afraid you'll think less of me, that you'll laugh and your laugh will kill me.
I'm afraid that deep-down I'm nothing, that I'm no good, and that you will see this and reject me.
So I play my game, my desperate pretending game, with a facade of masks,
The glittering but empty parade of masks, and my life becomes a front.

I idly chatter to you in the suave tones of surface talk. I tell you everything that is really nothing.
And nothing of what's everything, or what's crying within me.
So when I'm going through my routine do not be fooled by what I'm saying
Please listen carefully and try to hear what I'm not saying.

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Someone I love

Author unknown

Someone I love relies on me in ways you will never understand.
Someone I love endures the pain and challenges that break my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves for things that most of us take for granted.
Someone I love will never have the opportunities that every child should have.
Someone I love will need unconditional love and support after I'm gone - this frightens me to the core.
Someone I love encounters pity, stereotyping responses and prejudices at every turn because they look, act and/or learn differently from others.
Someone I love has needs that require me to allow outsiders to have power and input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that have become the driving force behind major decisions my family makes.
Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love and the really important things in life...

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About the authors

Graham Clark

Graham Clark lives in the most beautiful city in the world – Cape Town. Graham was disabled in 1984, at the age of twenty-five, by a stroke that left him completely paralysed and unable to speak. His passions are children, music and his speech output communication device, which enables him to access a computer and control his environment. He spends most of the day emailing fiends across the world, trying to write a book and watching any good documentary or a good game of cricket on television. Graham believes that the more he goes out to socialise or to advance issues of importance to people with disabilities, the more the public will feel relaxed with disabled people around. He is enjoying his early retirement despite the circumstances!

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Lydia Bresolin

Lydia is a qualified interpreter of Italian, has diplomas in Interpreting and Marketing (Adelaide College of Tertiary And Further Education) and is the mum of Aiden aged 6 and Grace aged 2. Aiden was diagnosed with juvenile arthritis when 3 years of age. Since then her paid employment has taken a ‘back-seat’ to the many doctors appointments, therapy sessions and appointments with Aiden’s school that have now become part of her day-to-day life. Lydia takes an active interest in advocating  for new treatments for Aiden’s condition, is the Secretary of 'Generation Dare'- a sub-committee of the Arthritis Foundation of South Australia. She has also recently applied to be a member of a sub-committee of the Ministerial Advisory Committee on Disability that will look at issues affecting carers of people with disability. Lydia’s spare time is spent by the beach and indulging in her favourite pastime – reading. She has recently taken up writing as a hobby and hopes to put together a book of her work that focuses on her experiences of parenting a child with special needs.

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Rex Stephenson

Rex is an honours graduate of the Sheridan College Media Arts Writing Program in Oakville, Ontario. Rex is a poet, essayist and one-time columnist. He has published dozens of articles on various subjects in several newspapers, magazines and textbooks. Rex has involved himself in a number of advocacy activities within his community, especially in the area of employment for people with disabilities.

Glossary

Advocate

Someone who supports and can ‘speak up’ for another person.

Conventional

Following tradition, the usual way of doing things.

Posture

Body position.

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