Flo’s Story – Living with a disabled sibling

Written by Flo Petrie, June 2022

Flo’s brother Adam previously attended Challengers, where he enjoyed many years of inclusive fun and play – benefitting both him and his family. Drawing on her own experience of growing up with a disabled sibling, Flo has written and produced a play called ‘Aaron’ which offers an honest, moving and stripped-back portrayal of life with a disability. Here she shares her experience and the difference Challengers made to their lives.

Life with my brother 

My brother Adam is 23 years old and has the rare genetic disorder Prader-Willi Syndrome (PWS). There are a variety of characteristics of PWS, but the main one is an overwhelming, compulsive and insatiable appetite.

Adam will do whatever he can to get food – he’s stolen from shops, bins, and even a frozen chicken and mushroom pie (which he threw out of his bedroom window and landed on the roof of the car!)

On top of his constant hunger, Adam has emotional and social immaturity which often leads to challenging behaviour.

Flo and her two brothers as children

He also has moderate learning difficulties, meaning he finds it difficult to understand worldly concepts like money. This has caused several issues when he has tried to purchase things in shops, especially food, as he doesn’t understand that you don’t always get change back. He has no concept of price, so he doesn’t understand that some things are very expensive and that he cannot afford them. It’s often difficult rationalising with Adam, especially when he gets upset and confused, and this leads to tense interactions and sadly, means that we often avoid taking Adam with us to make life easier.

How Challengers helped Adam and our family

For the most part, Adam is a loving, happy and bubbly person – always wanting to chat and socialise, he loves meeting new people and feeling included.

When we moved to Woking in 2010, his world became very small. He was often suspended from his school as they couldn’t cope with his behavioural issues, and he didn’t have any friends because we were new to the area. As a family we struggled to look after him, often needing at least two of us to watch over him. This led to Adam spending a lot of time in his room alone.

Adam soon became very lonely, which caused him to act out more. Our family struggled to meet his needs and to keep him occupied and busy, especially when we had school or work to do ourselves. This is where Challengers was such a big help…

As soon as Adam started attending Challengers it changed all of our lives. Suddenly Adam was in an environment where he was completely accepted for who he was, and he had a dedicated Playworker to hang out just with him and have fun!

Often he would rope them into his role-play games, making them the assistant chef and himself head chef. Not only did it provide Adam with much needed pastoral care, but it also gave everyone at home a break. During long summer holidays or even a week’s long half-term, Adam demanded a lot of attention. Having him out of the house for a few hours was utter bliss. We didn’t have to lock all our doors or windows. We could come and go as we pleased, have people over, and just enjoy being teenagers.

Over the years I have struggled to explain my brother’s condition to people. Often many will snigger at the name of it, which is not always helpful, but I think the main thing people do not quite understand is how the food addiction is completely pervasive. People aren’t aware that food is a part of everyday life. Not only do we need it to survive, but it becomes a huge part of a lot of social interactions. Having dinner parties, going for coffee, the tea breaks at work…there is no escaping it for my brother, and therefore he cannot live independently because he simply would eat himself to death.

Why I wrote the play ‘Aaron’

I have always loved acting and it was a huge part of my childhood, joining several groups and attending many classes. I went to a Performing Arts Sixth Form where my knowledge and skill increased, and I now have a Masters in Acting from Guildford School of Acting. I think the role of an actor and a writer in our society is to express, or explain, our understanding of the human condition. What does it mean to be human, and how do people live their lives? Our role is to expose the deepest truths within people to the world in an effort, I think, to get them to look at their own lives and see these truths within themselves.

Writing and performing my play ‘Aaron’ gave me the perfect opportunity to tell my brother’s story, but also my own story. Growing up with a sibling with a severe disability is not easy. Our whole lives revolved around the protection of Adam. All the rooms in our house were locked. We didn’t go on family holidays because Adam couldn’t be trusted to behave, and we couldn’t go to restaurants or celebrate momentous occasions such as passing GCSEs because he was just too volatile.

By writing this play, I was able to show the world what life is really like living with a disability. The response from people who hadn’t realised such conditions existed, or how life for some people is not straightforward, was amazing. This was the best reaction to have as I felt I had told an untold story, and by doing this I created more understanding and tolerance amongst the community.

According to the government, Aaron is an adult and should therefore be responsible for himself, but for many reasons my brother simply cannot look after himself. The play explores the possible options for him, which at the time of writing were a) living in a care home, or b) living independently. Due to his compulsion for food, and a desire to be ‘normal’ like everyone else, Adam was desperate to live independently. This caused a huge amount of anxiety in our family, as we knew that if he lived alone he would simply kill himself, and we would all just watch it happen – helpless to do anything.

I don’t know what could change in our society to help people like my brother. Ultimately it’s places like Challengers that are vital to people like him. At Challengers he felt normal, his needs were met and he was accepted. He didn’t have to be anything but his wonderful, joyful and bubbly self because everyone was adept and capable of looking after him.

My play ‘Aaron’ helps to shine a light on PWS, disability in our society, and all of the people struggling to care for their loved ones. I feel like it acts as a voice to the many of us who are coping so well given our circumstances. I truly hope you can come to experience this wonderful play for yourself, and know that I hear you and understand your experience when others may not.

Flo’s play ‘Aaron’ is showing at the Electric Theatre in Guildford Thursday 14th – Saturday 16th July. The play is in association with the Prader-Willi Syndrome Association (PWSA UK), with all box office sales on 16th July going to the charity. You can buy your tickets here.