Joanna Griffin used her experience as a parent of a disabled child alongside her work as a psychologist to write Day by Day – a book that explores what helps, and hinders, parent carers’ emotional wellbeing. Research suggests that mental health, relationships, family life, access to work and leisure activites, as well as finances can be affected. We’re happy to share a short extract directly from the book here:
The reaction of others in our community may be wonderful and supportive or disheartening and ill-informed. Despite the improvements over the last century for those who are disabled, we still have a way to go. Scope’s latest research shows that 87% of parent carers have felt judged by members of the public.
People rarely encounter serious illness, disability and death in their everyday lives. When we do it can make us confront our own frailty and mortality. We realise, first hand, that things can happen to people that make life difficult. Suddenly hospitals, interventions, medications, bodily functions and the limitations of the health, education and social services become part of life. Everyday things, like going to school, can be traumatic for our child. Sometimes when people are exposed to this harsh reality they withdraw, go into denial or become angry. Parents may react this way and it can also be the response from sections of society.
It may be the first time we have witnessed such prejudice and to see our own child judged through this lens can be shocking and heart-breaking. This may include stares, confused or judgemental looks or comments, as people make assumptions or project their own views, or fears, onto your child and you as a parent. We, as parent carers, may suddenly feel vulnerable to this social reaction combined with our desire to protect our child. It can be eye-opening and a huge learning curve.
There can be differences in terms of whether your child’s disability is visible or invisible. You may experience varied reactions from others, including family, friends and society as a whole. Developing resilience to these responses is fundamental to coping and avoiding social withdrawal. Society needs to become more accepting of difference.
Feeling prepared as to how you will deal with others’ reactions can be helpful. Some people stop going out but this is harmful on so many levels. You do not need to hide away: it’s important you connect with others as this is a crucial part of looking after your emotional wellbeing as well as being vital for your child to be out and about.
Sometimes you may not feel strong enough to deal with this aspect of parenting – perhaps take someone else along with you to help or share your worries. Your child is your priority, not the views of a stranger. Having a stock response ready for comments from others can help.
Finding places that are fully inclusive and welcoming to children with special needs, such as relaxed, autism-friendly performances at the cinema or theatre or Special Children’s Days at zoos, help create a sense of community and acceptance. I notice my own stress levels, and that of other parents, being much lower when attending such events where my son is very happy. These days highlight the need for a more inclusive world as well as illustrating how little it takes from organisations or communities to make this inclusivity a reality for families.
In parallel to the societal changes required, we can also change our internal world, over time, to become more accepting of ourselves and our situation. We develop a thicker skin and gain a wider perspective of what is really important in life. This is part of a growing awareness, resilience and expertise that many parents of disabled children develop. We become our child’s best advocate, as well as championing difference, tolerance and acceptance more widely.
Day by Day: Emotional Wellbeing in Parents of Disabled Children by Joanna Griffin is priced at £14.99 and is available now.