The Reigning Black Sheep

By Agnes G

This book is about the life of one son who, when aged, was diagnosed with cerebral palsy. His “green” parents really did know nothing of the disability in any form nor of the epilepsy that would eventuate. This one son turned their lives upside down and also added more growth than they could envision. To his temper tantrums to his parenting to his lifestyle, he wanted it all and fought to get it in the best way he knew—his temper.

It also takes the reader on a journey of the forty-year history in disability and its changes over that time period. It is challenging, interesting, and momentous. It’s quite a journey, but it’s one with an outstanding show of strength that the united family took on and how they met every challenge. They had some failures, but with this one son, a stable future reigns.

• Language: English
• Publisher: Xlibris AU
• Release date: Mar 16, 2019
• ISBN: 9781984503824

Book preview

Copyright © 2019 by Agnes G.

Library of Congress Control Number:              2018913614

ISBN:                  Hardcover                     978-1-9845-0384-8

                            Softcover                       978-1-9845-0383-1

                            eBook                            978-1-9845-0382-4

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Rev. date: 05/07/2019

Xlibris

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CONTENTS

Acknowledgements

Synopsis

Preface

Introduction

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Chapter 22

Chapter 23

Chapter 24

Chapter 25

Chapter 26

Chapter 27

Chapter 28

Chapter 29

Chapter 30

Chapter 31

Chapter 32

Chapter 33

Chapter 34

Chapter 35

Chapter 36

Chapter 37

Chapter 38

Chapter 39

Chapter 40

Chapter 41

Chapter 42

Chapter 43

Chapter 44

Chapter 45

Chapter 46

Chapter 47

Chapter 48

Chapter 49

Chapter 50

Chapter 51

Chapter 52

Chapter 53

Chapter 54

Chapter 55

Chapter 56

Chapter 57

Chapter 58

Chapter 59

Chapter 60

Chapter 61

ACKNOWLEDGEMENTS

Many thanks to Mace for lifting my spirits. While I was working on a chapter, he sat beside me, captivated by what came next. His interest was piqued by a subject I felt he wouldn’t understand. Yet he said, I am going to save up to buy your book, Grandma. The words of a nine-year-old left me inspired to continue writing this disability history.

Thanks to Robyn for her art for the book cover.

Thanks to Lee for giving value and inspiration to life.

Thanks to Jake—a one-of-a-kind man.

Finally, thanks to my family for being the constant, loving tribe who give until they can give no more.

Always value your self-worth.

Agnes G.

The Reigning Black Sheep

A Definitive Compilation of Disability History for One Mother and Son of over Forty Years

SYNOPSIS

My grandmother felt ostracized, I was considered a bastard child, and my son was normal till he was considered different just before one year old.

Others can make you feel as if you are being ostracized, as if you are a bastard, and as if you are defective, meaning different. However, being different can make you capable of being the difference. It is a matter of attitude and knowledge. I was about to change my attitude and gain more knowledge.

I had lost my normal son; he now was considered different from the rest. He would need therapy and overseeing by many doctors, therapists and surgery.

Why? He was normal before he saw you lot.

We reigning black sheep would create our own unique empires for varying reasons.

Ostracized never, my grandmother reigned in my heart.

A bastard, me? I think not. I proved that wrong.

My son, different? Yes, but in a good way; he sets standards of his own, as I explain in this book.

PREFACE

It started as a description from my grandmother this black sheep. It was something she saw herself as, and she said it often enough to increase my awareness of such a sheep existing.

How do you see a black sheep?

Is it not simply different from the rest?

My grandmother, I, and my firstborn son, simply put, came across this way, so it appeared.

She was the ostracized one.

I was the bastard one.

He, my son, now viewed as the defective one.

All of us are different for different reasons. Are we united by this description?

She was from a war-torn British era and was sent to a foreign country to be raised by an army gent and his wife.

I was the product of a messy marriage and seen as a bastard child. A description offered by those who deem I had no father.

My son was diagnosed with an affliction that made him different from the rest. The definition of an affliction is a curse to bear. Being unaware for a year added to the description.

Hence the story evolving in this thought process.

My grandmother was a child of the war years in Britain.

What happened to her parents that they gave her away to an army chap of high regard and his wife, and trusted them enough to take her to another country? Australia.

She would be only two years of age and left with people who took her to the other side of the world for a better life.

I would be the descendent of this grandmother, and then I, too, at four years of age would be given to her to be raised.

At twenty-two years of age, I would be thrust into turmoil because of a child who was different from the rest.

So the common denominator among us is our status as black sheep.

How do you see us?

The ostracized child, the bastard child, the defective child? All seem to have an equality of difference. All seem to have been given off to others who might do a better job with them. Until the buck stopped and the latest lingering black sheep would lord it over all to be seen as unique and special and set a standard of difference not seen before.

Start a new process to evolve and a new way to stand up to be seen as unique. Something unique is something unparalleled and incomparable.

If I add in people with a disability here comes different. Different is just a word used to say something is not the same. Same is as common as you can get. Different can be seen as definitive in execution. Different was a common word when this son came along forty years ago.

Yes, my grandmother started this inception of thought and to a degree the fruition of her description has set the margin for thoughts to this book.

However if you are different, then you are unique—a ‘one off’ if you like. This is not a bad thing, it just is.

We three are united to make this book on disability and create awareness among the masses. And we intend to do it in a way that will add interest so that reading on disability areas of concern does not yet again bore people and cause the subject to be ignored and forgotten. This book is intended to illustrate how a family united can change perspectives in an area long held at the back of conversations. Too long has disability been a lingering subject not spoken of as other subjects have been deemed more interesting or more at the forefront. I wish to change disability to the top of this list by relating the variety of dramas that have ensued over a forty-year period in my family.

If anyone can add drama to life, this one son has it in bucket loads!

INTRODUCTION

Cerebral palsy is a description where incorrect functioning of movement, muscle tone and posture are affected in the body. This isn’t always noticed at first. It is often undetected from infancy to preschool. Impaired movement and abnormal posture and involuntary movements then present. Abnormal conditioning affects the body.

For my son all signs were missed till he was nearly one year old. The lack of speech and movement was not noticed by four doctors in the late seventies. The fifth doctor was more inquisitive.

For the first year this son showed few signs of cerebral palsy as most doctors saw him as lazy or a slow learner.

Years of therapy would continue through his whole life.

Education in his hometown failed in 1982.

Distance schooling was offered when he was six years old in 1983. A special school for crippled children, with hostel attached for boarding students was all that was offered for education for those like this one son.

This would be sustained till he was fifteen years old and would return to the family home.

Then I had a realization that all was not as it seemed in the hostel environment. The hostel was well run initially. Eventually those new in authority created changes that made my son miserable. Old secrets were kept and fear kept those secrets hidden till nearly twenty years old. He never was brave enough to speak of them. Something kept him silent.

Secrets have a way of coming out eventually though.

His intellectual impairment was a puzzle. He eventually could speak. He understood what was said. He struggled to speak and answer quickly as cerebral palsy can affect speech in varying ways. The symptoms being different for each individual is common. His temper escalated as he grew older. Wondering what had been done to him or what he had been exposed to exaggerated this pattern of behaviour.

Constant seizures in the early years triggered fear of more damage to his brain cells, and a trial and error approach to varying medications was used to stabilize his health. His was a tiny body suffering constantly.

When he came home in 1992, the interaction into mainstream society became prominent. It was a time in the history of disability when at last those with a disability would no longer be hidden but would be allowed to filter into communities in new ways, exposing all who came across disabilities to witness those challenges and changes.

This practice run would last years and continue.

Parents and family’s lobbied government, and then laws were amended.

The Disability Services Act (1986) came out of the Handicapped Persons Review of 1985, as there was some concern and confusion regarding obligations within government realms. The act was amended in 2013.

Until then new challenges regarding government disability services progressed and were approached, and then change reared its head again. Things were rolling towards a better future for those with disabilities.

Better access into the community was promoted by councils, and mainstream education became a catalyst for better learning for those who had been ostracized for far too long.

Then carers were introduced as a career. Those who lobbied for better were winning and heard.

However often we were met with inexperience regarding that new concept, we were also on the cusp of more changes that would evolve into 2018, when a new disability scheme would roll out across Australia. This newer concept, after years of progress and intense lobbying by parents, groups, and visionary people, would see the disability sector thrust into a new approach on a bigger scale for those who had spent years behind, like the cow’s tail, always behind, now at the forefront of a new age of freedom. The modern world was catching up for those who had been left in last place for far too long.

CHAPTER

1

A s this timeline progressed, so too did the behaviours of this mother and son. Time had wearied them and hostility had come to the forefront. Challenges once fought had become intense arguments and strains upon their relationship. One day something gave.

She had warned him, saying, One more time, mate, and that’s it! You are out!

Such idle threats encompassed a thirty-four-year history in one family who had gained a son with cerebral palsy.

Though they were completely unaware of what that meant in 1976, an awareness was well developed by 2011.

The road had been long and fraught with pain and struggles and exhaustion. While milestones were achieved, including some really good ones, failure was coming. Despair had entered the family realm. Hurt was escalating.

In the beginning, doctors and specialists simply stated, He is CP. Why would we know what CP meant? Cerebral palsy was a description of a diagnosis we had never heard of, and we left the hospital completely unaware of what our future would be. That future was a disability that affected body movement and future walking and talking. Did it portend more damage to the brain of this little son of ours?

He still seemed to be the same baby that had gone into the doctor’s surgery. He just couldn’t sit up well by himself. No real description of worry was evident.

How would we know at our young age that there was an affliction that was noticed by doctors as a muscle tone presentation, and what would that be? Were they lazy muscles? Would they work later? Many babies are slow in progress, some walk and talk earlier than other children.

That was our common knowledge at the time. We were completely naive about what was to come.

We at last had a diagnosis to take back home, but we were completely unaware of what it actually meant and how it would affect our tiny son—as well as us, as we raised him. In the old days, he would have been considered a cripple by our parents. I do not remember anyone we spoke to who knew what cerebral palsy, or CP, was. We were simply told the diagnosis term, but we did not know its description or cause. So we naively went to the place the specialist asked us to go to, and that was when it hit home. He gave us a form stating that we were to visit the QSWL. This was all the advice we were offered by this specialist.

An explanation of what was to come might have been good before shock walked in the door!

The specialist’s request was that we take our son to the QSWL. Who or what was that? We were still none the wiser.

We drove an hour or so to Curtis, a bigger town then ours, and pulled up outside an arched feature bearing the initials QSWL. There were no other words—just these initials.

The brown brick building looked rather like a 1950s style with its whitish trim and somewhat English veneer. We drove under the arch, and as we pulled up, we didn’t read the plaque, which may have given us a heads-up. I truly have little memory of this time; nor does my husband. We were both in a void of shock, unable to grasp onto memory and accuracy at this time in our lives.

We would meet a lovely small-framed older lady with a soft voice. She explained CP to us. She was shocked we had come to meet her without knowing what it was. We did not have an inkling of what she was about to explain to us.

I remember the I am so sorry, the you should have had this explained to you, and the why didn’t they tell you? Yes, this bit I remember her saying. I remember the large brown wooden table she sat at, across from us. Lee was on my lap. Did he have his blue-and-white rompers on? The ones he looked extra cute in?

I recall the pens on the table and the grain of that table, the trees outside the window, uniforms of starched white shirts and black trousers. Then there was a blur, as she was with us to explain therapy and long trips to see her and her team to help this crippled boy. This what!? A team? Pardon? She was saying stuff, and it all became a hollow conversation of puzzling information beyond quick comprehension.

We can help his body achieve to the best of its ability. It will be ongoing for the rest of his life. Often the lifespan is shorter for these children—perhaps twenty-seven years of age he may reach.

She had a timeline of his life!?

Shock is an afterthought not worthy of explanation—beyond description.

Wow, this trip was about to get real in 1974!

The disability arena has always made my head spin, and this was my first step into it.

I don’t recall anything after that. It was a nightmare, but we were awake. I had no intention of losing this child at a young age either. What would eventuate into this unknown abyss was a succession of mishaps and mistakes, an uncommon lifestyle, and a demanding little boy.

A new way to live with three hours of therapy daily, amongst washing nappies and raising the first two children, became a hard task to manage. I read books on other people who had disabilities; these were not easy to come across at the time, but our library was helpful. My husband took it all in his stride; he had always been a hands-on kind of guy, helping where and when he could while working the farm.

Community and people in general were unaware of disabled children at the time. Many were not seen or known of in our town. In fact, I remember there being only one other in our town for some time. An older girl with cerebral palsy who could walk. Years later, more would come to the forefront when they needed education—not till 1992 though. These others did not have cerebral palsy but a variety of different disabilities. I guess a mixed bag of them was offered to the schools, thereby adding more interest to this story. They were the learning years, I tell you! People dropped them into schools like flowers in a garden, hoping they would grow.

What society wasn’t aware of was the new beginnings that were coming. Society was on the cusp of a new way to deal with disability. This was an early inception ignited by circumstance, and a variety of disabled children brought forth ambition and interest to see things change for the better for our children as one united endeavour.

A mother found herself a point of interest in a toilet block, as no toilets specifically for disabled people were thought of in those years. We forget, in the modern world, when change came.

Mainstream education did not exist. A carer was not even an occupation then. A male doing the work of a carer was incomprehensible leading up into the 1980s. It was a brand new description of caregiver that has become a valuable asset in the disability workforce. Equality in the workplace was just starting. Gay people were considered deviants by some of little understanding, so they were hidden away as much as the disabled had been. Many people of various sexual persuasions were ostracized because of lack of understanding in those years. This was witnessed in job losses. And why?

This went on until the brave stood up to be counted.

Yes, the journey of those years has transpired into this story. So many times, this mother heard said to her, I don’t know how you do it. Here is a pat on the back for encouragement.

Well, forty years on, this is the how. It needs to be read, said, and absorbed. Bones must be exposed to the raw history of the mother new to her occupation of disability multitasking and finding new ways to share her lifestyle with family, friends, neighbours, and society.

She was one determined miss. She wavered at times and wanted to die some days. But she held it together to show that a road taken can lead to a happy ending and a wonderful new concept developed along with other parents.

Disability can potentially bore one senseless, so this had to be written in a way to pique your interest. So here it is. Follow through; it makes for some interesting times.

Follow the journey till he, in his late thirties, fell in the gutter, literally. Apparently he had been admiring the ladies. He had been motoring along in his new electric wheelchair a little quick for his Carer as I was told by someone who witnessed the moments before.

He was always in a hurry to get out and see his world and drink a coffee. This time he misjudged his way and went over the gutter and became a focal point of interest, which always bothers him. People stared, concerned about his welfare. Police happened along. This did nothing to alleviate his wish to be inconspicuous. In fact, attention escalated till he was considered okay by the ambulance workers who were called. His head was in jeopardy; they felt he may have hit it hard and wanted to be sure of his welfare.

What happened then, you ask? He swore to his carer Franklin. Loudly exploding with the words Franklin fucking well get me up! At this point his carer knew he was okay!

Yes, alas, try as this mother did, his manners were often left at home and attention was gained in ways that … Well, suffice it to say that drama came in provoked ways to add to the story. Drama just came and came again. If not in the gutter, he found himself in hospitals for simply not seeing cars he ran into. He actually did run into a white taxi and broke his ankle. Apparently going full pelt and not stopping quick enough. I would ascertain a white wheelchair taxi would be easy to spot personally. One for its bright white and the other size.

It remains the strangest thing to explain how a quadriplegic could break his ankle when it is obvious he cannot walk. At the time that phone call was hard to believe it true myself. He had been out shopping when a distressed carer rang to say to meet her at the hospital because of an incident.

Adding family as siblings aged and married brought more strength.

If this story helps others and shows a way, it is worth the hardship of writing the truth as witnessed by this mother who has a conviction to say it as it was and still is.

Sometimes read from the heart, not the mind. The mind comes with judgement; the heart comes with love.

This particular son wants his story told for the importance his life has. Ask he did, and delivered I have.

He is one amazing teacher. Sometimes he was a bugger of a kid, and he can be a bugger of an adult, but he has a heart bigger than most and an intelligence that sets a standard of his own.

The journey alongside him has been one of utter amazement because of the achievements he made by being himself.

Kicking him out gave him the independence he wanted and deserved. Simply said, I should have seen it all along; it would only go one way—his way!

CHAPTER

2

I hope to enlighten many on the real struggles and achievements of raising a son with cerebral palsy over the last forty years—to be specific, from 1977 till 2018—with honesty and flair.

Why flair? He makes so many days so very interesting. His drama makes for the book of his life; how it has affected me and those in my immediate family. I would say it has given me more purpose—more fulfilment.

Not all was good in the learning years, and epilepsy added in new painful days with no end in sight.

Behaviours developed over time with more intensity.

There is no getting away from bad behaviours offered up by autistic traits and the frustrations of a crippled body. This is not a peaches-and-cream story of how well we did; it speaks to how we often didn’t do well.

It is okay to fail or feel bad, as well to have intense pride in achievements.

No way would we wish to fail if we gave up. We didn’t, we wouldn’t, and we couldn’t.

So here I am, trying to encompass truth with reverence and an authentic storyline about our journey.

It is hard to write with honesty and integrity while being specific about what eventuated, wishing not to hurt anyone or any agency or hospital I may have encountered in this time span. They are simply part of the journey to get this book to fruition.

Many do not know of the hardships or have any inkling about life within a family on a day-to-day basis when one of the children has a disability. The way it affects the family as a whole is the thing I wish to convey.

While on the outside I may look like I have it all together, on the inside of those doors is a frustrated, challenged, and often broken person trying her best to get by on this journey.

So many days were a challenge, but so many created points of interest on the way to a victory.

Happen they did, though, and if the story shows we got through, then follow, as we all have a journey to go on; ours was simply this one.

There were offerings of trial and error for sure, but we handled them in our way and got to a happy enough ending thus far.

I am not writing about all the different disabilities there are—just the one that affected my family. This is not intended to insult or offend but to show how we as a family got through to the happy ending we feel we accomplished.

It is a raw interpretation of commitment, loyalty, strength, and endurance.

It is a truth that we were broken on many a day. It is a truth that he got so bad I threatened to throw this son out. Yes, a seemingly defenceless quadriplegic.

Many see people with disabilities as defenceless, yet this is so not the case! We all have attributes. Perhaps they are not easily seen, but they are there.

People would see me in town and pat me on the back and say, You do such a wonderful job; just how do you do it?

Somewhat perplexed, they saw only this version of me.

CHAPTER

3

I can tell you how it was for us.

Unity is the important feature—extremely important.

Commitment is another feature, and living with a disabled child makes that commitment extra challenging.

I would like to add here that the story encompasses the other siblings in the family and who they married. We were a unit—a complete package working together.

I intend not to tell their story, as such, but to acknowledge the importance of being there for each other and to explain how relationships were tempted with behaviours caused by this sibling with autistic traits. Some days would just be woeful. While I may have led us all in any direction, I did so with their assistance.

His adaption to communication and understanding on a variety of levels was concerning many a day. It played havoc amongst us often.

Family can be weakened or strengthened, and the added pressures are noticeable.

The variety of issues for us included constant seizures, surgeries, therapy, and behaviours, and then, in his sixth year, education was added in.

So while the fifteen to eighteen years of age bracket were with Lee’s brother and sister, changes would occur when his sister married, and then again when his brother dated. This brought about more challenges, as they had partners to share their lives with, and Lee wanted that too.

I will elaborate on this further into the book.

The capital city was eight hours away.

Where would the best school for Lee be? Of course those eight hours south of us!

Adding in education became a drain on us as a family emotionally and financially.

The added pressures and distance played a huge part in dissecting us.

The pressure of leaving my husband with our other children came into play often throughout the years. The school curriculum gave us the holidays, and we embraced that family life with relish. That was our time to be significant simply as a family. Therapy stayed, but so did fun and a semblance of normality.

The first six years of Lee’s life were busy with daily therapy. During the fifth year, we trialled preschool, and it failed miserably. Further chapters will explain.

Constant travel had seen us going up to and back from Curtis, an hour and a half away, to see the medical team at three-month intervals. This gave us more information to proceed with until their return.

Now there would be a much longer distance to cover to avail Lee of the best education that could be offered to a child with a physical disability.

I had been asked to trial a new therapy of eight-hour days, seven days a week. Wondering how any family could sustain a life for themselves in that arena boggled my mind, but I retained my sensibility. A three-hour daily therapy session was more than enough, coupled into family life. Families were searching.

I will say that by this time parents were looking for answers and knowledge as to how to give the best to their children with disabilities. This was now the forefront of their future, and we were on the road to the best possible outcome for them. I would call this the time of the visionary who made a point to better those lives for the best future for them. The impact of that was coming. The wait would test the waters for years, but read along; progress would eventually come.

For now, in 1983, it would be an eight-hour drive every school term, down and back, with visits to doctors in between.

Holidays became a blessing, and the pressure relaxed if seizures were avoided.

Having a family that gives strength is an important feature in life. Not all families have an incentive to stand by each other; some falter and break. Life gets in the way of offering the too hard basket.

Not all challenges can be addressed by strength and fortitude; sometimes we tire and give up.

I have seen this happen. The constant harassment to try to keep things on an even playing field of contentment would be readjusted within minutes.

It took one seizure to throw our whole family out of whack. We made a speedy trip to the hospital. An injection of medicine was administered to stop the seizure. I recall cleaning up vomit and watching his eyes turn in his head. He called to me to be reassured I was there beside him.

Later doctors would put in a cannula to administer more medicine to alleviate the damage a seizure can cause. This eventually would cause anaesthesiologists to go mad at all the injection sites causing irreparable damage to Lee’s veins. Our daughter witnessed such things more often then I cared for her to see. How did his sister sustain her semblance of normal life? We tried our best, and she was a strong little girl. However, she was a small child exposed to this disruption on a regular basis.

We always looked for the impact on her as well, and later her younger brother. Siblings can struggle with a disabled person in their family. They are subjected to so much more than they would be in a normal family environment.

We were warned to look for signs. Those who worked within the Queensland Spastic Welfare League offered advice to see us through. They eventually had a meet-and-greet for siblings in the city. Alas, we lived too far away for it to benefit us often, because of distance. It was a good idea. I feel an investment in their emotional stability, as they are able to talk about how they actually felt about their own personal experience.

Available to us were therapists to chat to about how we got along and the stress and pressures we felt. I would hasten to add that the social workers were mostly very helpful. Perhaps they assisted us, to a degree, in coping.

However, the next information to be mentioned left me with a raised eyebrow for sure.

The Spastic Centre of the 1980’s told me the statistic regarding the success of marriages between those with a disabled child was the worst. I was told such marriages do not last as a result of the constant pressures faced daily. The lady who spoke told me many a mother was left on her own—a sad truth, but truth all the same. This was hardly a fact I wanted to hear; I was under enough extreme pressure in any case!

However, the thought that I would not be one of her statistics often crept into my head.

The gauntlet was laid in my mental thought process, and that gave me an incentive to always try to keep it all together for our family.

I had come from a family in despair and had witnessed challenges and heard fights and drama and witnessed family failure already. That was hardly a path I cared to go down for myself in my marriage!

I had come from this area in life growing up. I had seen loved ones tossed aside because of a lack of commitment. Hurt had broken them and driven them away from each other. Being little and witnessing adult stuff gives you lessons to learn from on a scale that becomes a life skill.

This was my wisdom.

I have a strong conviction to marriage and the sanctity of it.

What made us, as a family, different?

As I said already, unity and commitment made us different.

Failure would not be an option. My family history came to the forefront in this thought process for sure.

Perhaps my parents’ incompatibility and my pending arrival did nothing to secure their relationship.

I was often considered a bastard child at school by some. This gave me the stigma of being different from the rest of the flock. Here came that black sheep reference my grandmother placed in my head.

When Lee was born, he seemed the same as the other children till he wasn’t. I guess for him and myself, the common denominator was difference, and battles were to come into our life to strengthen us.

I should think neither of us was expected, to a degree, but here we are, making a difference just by being who we are, and that is enough.

Using this inner gumption would set a standard for me personally to stand up and be the difference as an individual. So I used my time to be as equally available to each child as physically possible.

This was a task and a challenge to execute for sure.

All of my children were worthy of my attention, time, and acceptance.

Still these children—my two other children, now adults—hung in there. They added quality and contentment, and they also added partners to share not only in their lives but also in the lives of this one person with a disability. I feel this is such an amazing trait—the willingness to take this on board with the challenges offered and complete acceptance of a disabled brother-in-law. Many walk away, but not these people. They became family and made us into a bigger, stronger family, showing their merit many a time.

It is not an easy ask of any human being to be thrust into an area of life he or she was not subjected to before.

So if I tell their stories within the one I write of, it is to show how important the people in your life are, as well as those you meet who share your struggle. This is also an opportunity to raise awareness of how you also can achieve more strength, love, and durability, and allow yourself to be exposed to this new offering of life.

Some have asked whether these people want their story told as I portray it. This is a very good question. However, my heart tells me this needs to be known because of the strength that was added to this family not only in having two other children who endured a lot but also in their partners and children eventually adding even more strength.

On days when it would have been so easy to walk away, they stayed.

These days it is easier to allow the disposable world.

We don’t throw anything away, but we allow growth and development and acknowledge each other for each individual in our family. United we hold a greater strength, and that allows for commitment and challenge and gives more purpose to life as I see it and as I see them.

I have asked them what they think. They don’t really care, so they said.

Their mum is writing—doing something she has always wanted to do. It just happened that it would be a family story that could, in this instance, be of help to others struggling.

Also, they are more than aware that anything I do for any of them is always done out of love of them and no other reason. I leave them in here as important members of us as a united family.

I am aware that when writing one normally thanks others for significant help in the acknowledgment section at the back of a book. These people deserve the front.

When exposed to cerebral palsy, illness, behaviours, troubles, anger, frustrations, and sadness, having these types of people in your life to lift you on any given day is more than a thank-you. You appreciate them being the backbone on that day—being the strength you need to get through that day. This journey had so many ups and so many downs. It was a huge roller coaster of emotional inability. And yet here they were—my children, and eventually their partners—being that voice of reason, that offer of help, that comfort needed to help hold parents together. I think they are unique.

Moving into the adult years created new challenges the new partners would be exposed to, such as dating and the reaction to it. Following chapters will explain this in more detail.

I will also say we are not special; we did endure heartache, trials, and troubles, and we faltered; but with conviction, we got through.

I can add that on some days we were weaker than a soggy chip in a packet, and on other days we could soar like eagles. No two days were the same.

We just never gave up, because we didn’t want to. This is not to say there was never a time to end it all—a threshold to steer clear of for sure.

Knowing full well there was absolutely nothing of a future for Lee kept me going. There was no housing—nothing that resembled what his brother and sister could have. He would have no rental property, no girlfriend, and no job; nothing offered him a future. We were his present, past, and future.

His was a dismal, boring exemption from life.

This could not be all I would offer this child I looked at daily.

So determination, sarcasm, and fight within me developed. I could fight. I had seen many within my family challenge each other; it was to their detriment, but they did it anyway.

So if fight was a necessity, I figured it had better be for the greater good.

So letters to editors began, as did meetings and the joining of groups with similar causes. My son is my best cause.

This book sends the whole journey out into the world—and my message way out further into the unknown.

We were painfully aware of obstacles interfering in our lives. So we searched for answers in every realm. Nothing transpired anywhere. I have always believed the pen is far mightier than the sword. It is with sincerity and truth that I wish to tell all how this one child within this one family made a difference, by writing this journey into the world and hoping it will be a stepping stone to a greater future for him and for others—and deservedly so.

CHAPTER

4

H ow do I explain his intellectual disability? Can I?

It is a complex one.

I often say, Start at the top and work your way back, as somewhere along the line my son will get an understanding.

It is a grey area to explain. Each person is different. My son appears to take it all in; then he will mention something out of the blue, and I will know he missed what I meant.

Many years ago, this happened in a conversation about paying for a motel. He refused to do this.

The conversation went as follows:

It is forty dollars a night to stay here, and wheelchair friendly, and there is room for us all. It seemed a good price at the time.

I am not paying, said Lee, most emphatically.

Well, yes we are, mate. It is a fair price.

No, he said.

Of all things to argue on! It was not about the cost; it was about paying.

I could not make him understand that we all do this when the need arises.

Eventually he mentioned something I hadn’t considered. He said to me, I don’t own it.

I was puzzled by this. His lack of understanding was mind-boggling, and I didn’t want another argument at the motel in front of the owner.

In his mind, if you buy something, you own it. In his mind, were we borrowing a room, so why should he have to pay? We hadn’t even got to we paying rather than he.

He was part of the conversation, and perhaps he felt paying more because of him was an issue. I really couldn’t be sure. Did he take this personally?

I guess his perspective was obscure but definite. Was it a tangible thing for him? When he bought anything, it was a purchase, but sleeping in someone else’s room was not ownership, in his mind.

That got my