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Liz & Cam's Story
Liz speaks about her life and the support her son Cam has received through his journey through education, health and social care. Her whole family have been impacted by the difficulties Cam faced navigating a world that expected him to fit in when it was not possible for him to do so. Cam is articulate and clever with a great talent at masking often leaving his support needs misunderstood. Cam is supported by a small supports organisation, Beyond Limits, and Doreen Kelly, the founder and Director of the organisation was present to contribute during the conversation.
Cam’s life is still not easy, but he does not navigate this alone. Alongside his family he has his team and the backing of a small supports organisation. He has people who know him well, who like him, and are committed to him. They have stuck by him in good times and bad. Liz no longer feels alone trying to navigate a system that, as well as supporting her son, has done him irreparable harm. A system that has taken its toll on her too. After many years of battling alone, the word Liz uses to describe life now is ‘we’ - we work on this together, we work it out.
"They gave me my life back"
In Crisis
Despite talk of early intervention Liz’s experience was that by the time families get support they are often in crisis. Liz and her family had been living on the edge for 3 years before they received any help at all. She found that professionals within education and health struggled with the idea that an academically gifted young man could struggle with practical daily living skills, such as managing money. There was little or no recognition of neurodivergence. Instead, Cam was blamed and ‘punished’ for being ‘naughty’ and Liz for being a ’drama queen’ or a ‘controlling’ mother.
From championing Cam’s skills and strengths, Liz found herself in the difficult and unpleasant position of talking about the aspects of life her son found difficult or wasn’t ‘coping with’. All in effort to get people to understand why he was struggling.
What Has Made The Difference
Whereas now, Cam and Liz have a whole team of people who know and care about them. Who are committed to working together to make things better. Along with a culture of continual reflection and improvement, there is an important focus on avoiding judgement and blame. Instead the focus is on working out what is right for Cam and, importantly, sharing the risk of doing the right thing.
Sharing The Responsibility
It is hard being the person fighting for the safety and wellbeing of your loved one in a health and social care system that does not always feel safe.
Liz speaks eloquently of the toll this has taken on her. The sense of having experienced a grieving process for her life and the future for her son. She also speaks to the profound difference having strong trusting relationships with Cam’s support team, and the wider small supports organisation has made. People being alongside her who share a similar level of caring concern. This has enabled her to feel less isolated, ‘I am not on my own.’
Sticking With People
The point of small supports organisations is about sticking with people through good times and the tough times too. It does not mean people will not be admitted to hospital for treatment, if their mental health requires it. It does mean they retain their team, and their home ensuring they move back home as soon as they are well enough. Knowing this can make all the difference to the person’ sense of safety and wellbeing. Liz believes this is why Cam wanted his admission to hospital when unwell knowing his team would still be alongside him.
Relationships Are Key
For Liz, recognising that Cam’s team could support him well gave her a great sense of relief. A release from the sole responsibility for his wellbeing. It also provided enough space to evaluate their relationship and to recognise sometimes, she experienced the brunt of his distress.
Trust Takes Work
Families have had to fight to keep their loved ones safe. They have often have to fight the system to get any help they do receive. It is no surprise that relationships of trust take a while to develop. Trust needs to be earned through being honest and transparent. By doing what you say you are going to do. By apologising if you get something wrong, and by committing to work together to do better.
These are the commitments of small supports organisations, and they are always a work in progress.
Requiring people to fit into things that already exist can have a profoundly damaging impact on people’s lives. Misunderstanding how Cam experiences the world and expecting him to be as others wanted him to be, ‘almost cost him his life’. The answer is to create safe spaces where people can be themselves. This is the foundational premise of small supports.
Knowing A Person And Working It Out
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