Labelled as neurotic parents
Guy was born in 1962, a much wanted first child. A lovely healthy baby boy weighing 8lb 6oz. At first everything was fine and all going well, but at a few weeks old and during a spell of extremely hot weather, Guy began to be violently sick. Despite numerous visits and requests to the doctor, who labelled us as neurotic first parents, nothing was done until Guy was admitted to the Children’s Hospital in Birmingham now only 6lbs 9oz, so badly dehydrated that he suffered massive brain damage that left him, for the rest of his life with severely restricted movement and unable to vocally communicate. We prayed every day for him to live and our prayers were answered.
Guy was about 9 months old when we were told just how catastrophic his brain damage was. It was so painful to bear, but Colin and I vowed that night that no matter how long Guy lived, we would do everything to make his life happy and smile for him.
Another avoidable injury has dramatic results
Two sisters followed, first Susanna and then Rosanna. Guy loved them so much and they loved him back. Just a small achievement by Guy meant so much – when the girls told him they were going to school, he would laugh and say ‘cool’. They would clap and make such a lot of it.
The years passed by even though doctors told us Guy was unlikely to reach 14 years old. Guy loved birthdays, Christmas, holidays etc celebrating all with his sisters and family. When Guy was 24 he went to respite care while Colin, Susanna and I went to Skye. While in respite care Guy suffered a commuted fracture of his femur. There was no explanation. Knowing Guy could not move at all, even turn over it was essential to get to the bottom of how Guy’s leg was broken.
Community Heath put us in touch with a solicitor called Ann Alexander who was fascinated by Guy, who, though so badly disabled, smiled and enjoyed life so much. She worked hard to find out how Guy’s leg was broken, and also investigated the cause of the brain damage Guy had suffered as a baby.
It took ten years but resulted in an historic case at Manchester Crown Court and the Royal Courts of Justice in The Strand. Guy finally received the justice he deserved when it was recognised that huge negligence had caused both the brain damage and later injury. It meant for us that Guy’s future was secure; when we died Guy could stay in his own home being cared for and overseen by his sisters who lived close by and were so protective of him.
Standing firm in the face of prejudice
We all loved Guy so much, but we endured so many painful and difficult times through the unkind and openly hostile attitudes we frequently encountered. For 33 years we lived by people who scorned us. I was told that having Guy in the area devalued their homes. This was before we moved to the home we could eventually provide for Guy.
Guy’s sisters were teased at school for having a disabled brother, and one awful occasion I was asked by someone if I had wished Guy had died rather than lived once he had his brain damage. Guy’s life was a constant force for good within our family. In contrast to the negativity and prejudice we faced, the good thing was how compassionate and loving my girls, grandchildren and now great-grandchildren have become, mainly through knowing Guy, and always being grateful for what they have. We used to say that Guy was the glue that bound us together.
An absolute love of life
So we moved to where Rosanna already lived, with Susanna not far away. Guy was so welcomed by the village and the church community, a lot because of his absolute love of life. No one enjoyed life more than Guy. He loved his family so much, then as grandchildren came along, they were so proud of him. ‘Come and see my Uncle Guy’ they would say to friends, and he would smile and laugh and give out so much love. It also helped that there were always chocolate flakes in his room! He loved music, and sang in his way to every tune. The grandchildren would sit next to him watching the musical films Guy loved. He knew every song even as the first credits fired up. His smile lit up the room. Everyone who knew Guy has seen that smile and the joy he gave out. If you felt down, just go and see Guy and you came away smiling. How could you be sad when he, who in most people’s eyes – had so little, could be so happy.
How could it end like this?
Guy so very rarely accessed respite facilities, but with Colin and I in our eighties, we needed to face facts and take occasional breaks for ourselves and also give Guy opportunities to have times in the care of others. It was during one of these rare breaks that Guy died.
It is so painful for us to bear the certain knowledge that our beautiful Guy: son, brother, uncle and beloved member of our community, suffered at the end of his life. Guy was in good health when he died.
Once again, as a family, we endure the heartache of knowing that things could have been different. A safeguarding team making recommendations will not bring Guy back. We believe the devastating heartbreak of Guy’s sudden death contributed to the death of Guy’s father – my beloved husband Colin. less than a month after Guy’s passing. Our hearts are broken.
Rest in peace:
Guy Laurence Parkes 25/08/1962 – 18/11/2021
Colin Frank Parkes 23/07/1938-20/12/2021
Guy had strong opinions about what he loved and hated! Guy communicated pleasure and happiness through the beaming smiles and joyful singing described above. Guy needed full support with aspects of personal care and daily living including eating and drinking. Guy could shout with rage when furious or displeased. Guy could communicate – in his own ways.
Guy loved using his voice, but he did not produce spoken words that others would understand. His understanding was at a basic level. Guy recognised people, places and songs and loved looking at photos. When Guy heard familiar words crop up – for example family names, or words for what was about to happen – for example going in the garden or out to a familiar place he responded to them by turning to look or showing pleasure. Guy had a lively and interested awareness in all that went on around him, and particularly loved it when family or friends were chatting with him in their midst. Guy could confirm a choice by looking at one of two options held up in front of him. Guy had the most expressive face and clearly communicated distress or boredom. It was clear when he’d had enough of something.
Guy relied on others to be vigilant and attentive to his wellbeing and needs.
- Guy was unable to tell someone he was thirsty – he relied on others offering refreshment and carefully monitoring his responses, to patiently continue as long as needed, and stop when he had had enough.
- Guy was unable to tell someone he was hungry – he relied on others offering food of the correct consistency for him to manage safely, taking mealtimes slowly and carefully, while carefully monitoring responses and checking food has been safely swallowed.
- Guy was unable to tell someone if there was something seriously wrong for him like food he had not properly swallowed – he needed to be carefully monitored to be sure his airways were free.
- Guy was unable to tell anyone if he was sore and uncomfortable and needed his position changing, or his personal needs attended to – he relied on others being always vigilant and assisting Guy by checking his wellbeing regularly to ensure he was clean fresh and comfortable.
While Guy’s basic personal needs as described above were attended to, he was able to communicate and show that he was comfortable and well. If he was uncomfortable or feeling unwell, he would show this. Guy’s natural sunny disposition being affected was always a clear indicator that something was amiss. However, the bottom line is that someone needed to be regularly there with Guy, checking him and giving him the opportunity to show or communicate his distress. For Guy, getting the right support was literally a matter of life or death.
Guy’s family experienced how uncomfortable and uncertain many people are when it comes to relating to and interacting with someone who communicates without speech.
Not everyone was mean and unkind – but many were clearly nervous or uncertain about how to go about talking to Guy. The family understood that this was often a case of lack of confidence or understanding. In Guy’s life, the family were generous and supportive of any opportunity to help others better understand ways to communicate with people with learning and communication challenges.
Guy’s family would like people to learn from his life. Guy loved being with people, Guy loved interacting. All it needed was for those around him to be good communication partners.
How Guy helped people learn about communication
Learning how to communicate with people who communicate differently not only helps them or you, it really could save their life. Guy and his family were always happy to help others learn about different ways to communicate.
For example, when The Makaton Charity reviewed and relaunched their training workshops, Guy and Anne were delighted to contribute! Makaton Tutors who deliver Makaton Training, and the many thousands of participants who have taken their learning journey to Level 4 will have ‘met’ Guy and Anne in the section of the course which helps people understand the different ways people can communicate. Guy demonstrated communication of choice by eye gaze.
Makaton is a Language Programme using speech, signs and symbols. Makaton is adaptable to meet specific communication needs. Makaton is about including not excluding people. You can find out more about Makaton and Makaton Training here.
When Course Beetle were developing The Inclusive Communication Course once more Guy’s family were ready and willing to contribute. Indeed Guy’s niece Heather was glad to be filmed interacting with baby Rory! Guy’s eyes twinkled when he watched it!
People with learning disabilities are known to be disadvantaged when accessing services or receiving care and support services. This also applies for leisure, hospitality and retail. A recurring theme is that frontline staff, key workers and support workers feel out of their depth if the person to receive services has communication difficulties.
The Inclusive Communication Course is an online course for support workers who work with people with learning disabilities. It is also suitable for anyone in any public facing role for example working in a hospital, clinic, cafe, shop or leisure setting.
The Inclusive Communication Course is dedicated to the memory of Guy Laurence Parkes.
Become a good communication partner
Communication is central to all of our lives. Without it we can’t let someone know we are thirsty, hungry, how we feel or if we’re in pain. Like Guy, some people use different ways to communicate. We owe It to everyone, to be able to communicate better with each other.
How can you help?
- Share Guy’s story to encourage people to become good communication partners and to help others understand why it is so important
- If you or your colleagues would like to know more about becoming a good communication partner, get in touch, we’d love to speak with you.