Joseph: 21 Chapters in Parenting and Autism

By Philomena Scully

Joseph is a book that tells the real-life story of a single mother coping with the pressures of life and bringing up a child with autism. The author, Philomena Scully, captures a world that is relatable to other parents – the main audience that the book has been written for.
It shares a variety of honest and funny stories, covering common topics that she has struggled with over the years while supporting and loving her son despite the extreme differences that her new life entailed. It also illustrates simple techniques and tips to help ordinary parents who are finding themselves in same situation.
Its written from the heart with a simple structure that people can learn from. It lays bare the trials and tribulations she encountered and how she accepted that autism is a different way of life through the love of her son.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Aug 31, 2022
• ISBN: 9781398447639

Book preview

About the Author

Philomena grew up in Manchester with her three brothers and parents.

She left school at 15 years old and went straight into work as a hairdresser in the centre of Manchester. After getting married at twenty-eight years old, she had her first child, a son followed by her daughter three years later.

She became a single parent when her son was five and remarried more recently in 2019. Since the children have been young Philomena has worked full time in a call centre in a variety of management positions and balanced her work life with home to make quality time for her children.

Dedication

This book is dedicated to my daughter who stood by her brother with resistance to judgement. This helped me cope.

Copyright Information ©

Philomena Scully 2022

The right of Philomena Scully to be identified as author of this work has been asserted by the author in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of the publishers.

Any person who commits any unauthorised act in relation to this publication may be liable to criminal prosecution and civil claims for damages.

All of the events in this memoir are true to the best of author’s memory. The views expressed in this memoir are solely those of the author.

A CIP catalogue record for this title is available from the British Library.

ISBN 9781398447615 (Paperback)

ISBN 9781398447639 (ePub e-book)

ISBN 9781398447622 (Audiobook)

www.austinmacauley.com

First Published 2022

Austin Macauley Publishers Ltd®

1 Canada Square

Canary Wharf

London

E14 5AA

Acknowledgement

Thank you to my parent’s, husband, family and friends for always being there for me and accepting my son for the person he is.

Preface

Parenting my son who has autism made me feel like I was in a cocoon. I was on the inside exposed to all the complexities involved in autism. A parent in a tiny bubble of autism that others on the outside would naturally struggle to understand, unless they were a parent themselves. The intensity of it was overwhelming. Trying to explain autism to people on the outside felt like I was trying to justify my inadequacy as a parent.

I wanted to write this book, so I could help other parents like me. You might be starting out and want to find new options. I learnt the hard way. I’m not an expert in autism; I am a parent. A mum of two children. Being a parent is extremely rewarding and challenging at the same time. With many ups and downs as you go. There is no doubt that the adjustment you make for autism is dramatic.

I’ve named the chapters simply, so you can skip to a specific subject if you want to focus on that topic. Ultimately, I want to help other parents in the position I found myself in years ago. I didn’t have a clue what to expect, and I had no idea how much my life would change. I don’t have all the answers to your problems, and my way won’t necessarily be the right way for you and your child. Find out what works for you. I had help and support throughout the years from various specialists, friends and family, but generally, I provided most of the support to my child. It was down to me.

Joseph was diagnosed with autism spectrum disorder aged two and half. His dad and I were advised by the paediatrician that Joseph had autism spectrum disorder with classic traits. By classic, I took this to mean, obvious. I relate to the traits of autism in my chapters. My aim is to give you some ideas that might help you think differently and put that lightbulb moment in front of you.

The autism spectrum is focused in three main areas communication, social and behaviour difficulties which range from mild to severe. This is my unique experience which I hope will help you in some way, to not only support your child but you as a parent.

Over the years, there has been a million moments of joy, fear, anxiety, stress, shock, surprise, happiness and tears. People used to say to me, I don’t know how you cope.

I responded with, I just do. I’m not dressing it up, living with autism is not an easy gig. It can be rewarding and fascinating. It depends on which lens you are looking through.

It doesn’t mean you don’t have a life of your own either. During the twenty-one years of my son’s life, I have achieved some of my own goals. Including gaining my university degree in 2017 while working full time in a successful career. While there were times that I became consumed with everything autism, I forced myself to have my own focus and direction in life. My friends and family helped me do this and gave me the encouragement I needed.

Introduction

At twenty-one, Joseph has achieved much more than I ever expected. In the beginning, I assumed there was a lot he wouldn’t be able to do, and I physically mourned his future. I was convinced he wouldn’t be able to do most things people aspire to. Like getting married or finding a job. Hope is good and I’m extremely proud of how far he has come. Projecting to the future is difficult to imagine, but the years pass, and children grow up. Having hope and an open mind can help you to get through the hard times. By sharing this, I want to point out that having autism doesn’t mean they can’t have a fulfilling life. It is a different way of life, and if you can accept that, it will help tremendously.

My Joseph got his first job in a kitchen of a restaurant as a kitchen porter. He started on a placement through college, which turned into paid work. He’s one of the few people I know that skips into work each day. Less than a year ago after completing two years of travel training, he is travelling to and from work and college independently.

He has seen family and friends grow up and have girlfriends, and for eighteen months, he kept saying, Mum, I want a girlfriend. That finally came true just before his 21st birthday when he met a girl at college. They meet up for dates regular and go out for a meal or to the cinema and speak on the phone every day.

Joseph has a better social life than most people I know and has a wide variety of friends. He’s involved in several groups that support people with disabilities. He takes part in the local park run, competes in 10k races, goes to the local gym, likes walking and loves to watch his favourite football team at the pub with the family.

He has a wide variety of food in his diet and can cook the family a roast dinner. His positive attitude is infectious, and he’s always smiling. He is a great help around the house with chores. He has told me one day he wants to get married and have his own house, which I now believe he can. He has a determination to achieve his goals no matter how long it takes. Days, weeks, months and years pass and he keeps going until he achieves his goal.

When Joseph was diagnosed with autism at two and a half; I was devastated. All I could think of was his future life. You want your child to have a happy and fulfilled life and have the same choices that everyone has. I focused on the one thing he could have in abundance, love. That’s it. If he was happy and loved, it didn’t matter what the future held. It stopped me dwelling on what might not be and get on with the present.

I became fascinated by the nature of autism. It wasn’t what I expected when I thought about bringing up a child. It’s changed my outlook on life and made me stronger over the years. I’ve been exposed to a different world that on a day-to-day basis unless you have lived with someone who has autism or you have a profession that cares for people with autism, it’s difficult to comprehend. It has opened the eyes of other people in my life, family and friends. Autism is complex in difference to the stereotypical person. It is not abnormal, just different to how others view the world. Regardless, I’m a great believer in finding positivity in the face of adversity and this has enabled me to get through the difficult times and become a stronger person as a result.

Chapter 1 – The Early Days

My mother-in-law was holding Joseph; he was six weeks old. She noticed he was staring at the light on the ceiling. It was a December evening. I can remember looking at Joseph as he stared transfixed by the light. I remember thinking it’s uncomfortable to look directly at a light bulb for a long period, even a few seconds. Looking back, it was an early sign of his autism. Another characteristic I remember is Joseph smiling and tensing his body rigid and without eye contact. I perhaps missed other signs as he grew passing each milestone as expected. Crawling, walking and interacting. He walked at 11 months old, ate well, slept well and appeared to be progressing. I read all the parent and child books and ticked off each new point at each stage of his early life.

As he grew into a toddler, signs became more obvious. He loved to spin the wheels on toy cars or the wooden jigsaw pieces he spun in his fingers rather than using them as jigsaw pieces. I thought it was odd and would show him how it should be used. He would go back to spinning the pieces seconds later.

One of the biggest turning points was when he was two years old; I bought a new hoover which predominantly was grey with a yellow trim. I had heard a lot about how great these hoovers were, and it was 1999, and everyone was talking about them. I plugged it in ready to use it on the front room carpet. Joseph was playing in the corner of the room with his toys when I switched it on. Suddenly without warning, he was shrieking and holding his ears with a face of pure terror. I turned off the hoover and went to comfort him. The noise had startled him and seemed to pierce his ears. This event marked him for several years. I took to hoovering when he was out of the room or the house. Even then, I just thought I had frightened him, and he was sensitive to noise. The sight of that hoover made him run off holding his ears.

He associated anything yellow with the fear he had felt when I had switched on the new hoover, and he would not go anywhere near the colour yellow. I remember the time we went to a park with my friends and their children. There was a big bouncy castle. It took me a while to figure out why Joseph wouldn’t go near it. It was yellow. I called it the yellow fear. I don’t think he has ever liked the colour yellow since.

Diagnosis

I visited my health visitor who had raised her concerns to me about his delayed speech and the funny things he did with toys. She had a worried look on her face when I explained his rigid body event that happened most days. She recommended that he was referred for tests under a paediatrician, and he was invited to a full round of tests at the local hospital. The tests included physical motor skills, hearing, eyesight, play and responses, and it took more than one visit over a few weeks.

What’s wrong with my son, I thought. They know something I don’t. This is my son, what are they looking for? I don’t remember anyone telling me the reasons for the tests; it’s all a bit hazy. He was still very young, just a toddler at two and half. It felt like a blur at the time. I remember the waiting room clearly though like I was there yesterday. We sat there waiting for the nurses to call us. They would call us to do a test, we took him in and then it was back to the waiting room for the next run of tests.

We didn’t have to wait long for the results, and we had an appointment to go back to the hospital and see the paediatrician not long after for the results. The evening before, I took Joseph to my friend’s house. Every week my friends whom I’ve known for years met up once a week at each other’s houses for tea and coffee. It was something we had done for years. It kept us close, and we would have a natter over a brew. There was a few of the kids there that evening, and my friend’s daughter was one month older than Joseph. The difference between the two children was so stark it was embarrassing for me. I felt like my son was uncontrollable. He wasn’t aware of others around him; he was in his own little world.

They all knew I had an appointment to get the results from the tests the next day. Autism was brought up as a suggestion. The reality was I hadn’t thought of anything; I wasn’t ready to accept the truth without the facts or discuss it. I don’t believe in worrying about something until I know for sure. It’s a waste of energy. I worry when I know the facts. Nether the less they were right. I was in complete denial.

Long Term Effects and Coping

I took a deep breath when