with Joanna Griffin of Affinity Hub
Today we're offering a free copy of a new book written by Joanna Griffin, a parent carer, counselling psychologist and founder of Affinity Hub which signposts to emotional support for parent carers. Her eldest son has cerebral palsy, a learning disability and autism.
Joanna has written about her book for us and has offered a copy of Day by Day to SNJ to give away to one lucky reader. Be sure to add your name to the form at the end if you want to be in with a chance to win it! Please note, this giveaway has now closed.
Day by Day: Emotional wellbeing in parents of disabled children
As a parent carer looking after our own emotional wellbeing can be a challenge at the best of times. A year of lockdowns, drastic reductions in support, health and shielding concerns and loss, in all its forms, hasn’t helped (possibly the understatement of the year).
Supporting our emotional wellbeing is an ongoing, dynamic process. A key part is learning to recognise our own emotions and how we can help ourselves - without guilt - day by day.
What I’ve learnt through my research with parent carers
Wellbeing is more than what is often termed ‘self-care’. It may involve strategies that fall under this heading but it’s broader and wider. My research into emotional wellbeing in parent carers identified 7 dimensions that help. I use the mnemonic SPECTRA to represent them:
S Having a Sense of purpose and meaning
P Connecting to Positive others
E Feeling Empowered
C Our relationship with our Child and gaining insight into their perspective
T Finding, and protecting, ‘Time that is mine’
R Engaging in ways to Replenish and recalibrate: a Swiss Army knife of self-care
A Awareness of our emotions and the human condition
I elaborate on these and provide strategies that can help you in my book: Day by day: Emotional wellbeing in parents of disabled children.
Why do parent carers need to take care of themselves?
There is a greater risk of depression and anxiety in some parent carers than in the general population[i] [ii]. The emotional impact of parenting a disabled child is multi-layered and wide-ranging. Stress is the most commonly reported response.
‘I always feel very, very stressed out to be honest and always like I’m running on empty.’
Anger, denial and fear of the future are also regularly experienced[iii]. Guilt can thread throughout parent carers’ experiences – guilt about taking time for yourself, the impact on siblings, even guilt at feeling angry or depressed in the first place. Guilt is such a detrimental emotion to feel – please let go of it!
Many parents will have been through a traumatic experience, seeing their child go through invasive medical interventions, difficult birth, or even day to day cumulative traumas. For some of our children everyday life can feel traumatic and witnessing this as a parent can be difficult.
Of course this is not the whole story. There is love and joy in families, appreciation for the little things, new perspectives and personal growth.
‘She's made me a better person… I think she's the best thing that happened to me. I love her very much.’
But sometimes it feels as if our circumstances conspire against us, creating obstacles that make it hard to see the positives.
Unsurprisingly to many of you I’m sure, parent carers often report that the very services that are supposed to help us can sometimes actually add to our stress. Of course good support is possible and when found it can transform the lives of families. Parents remember the precious pockets of positive support they’ve received for years to come. But conversely the negatives can also stay with us. I will never forget the professional who said ‘I can’t work with this’ gesturing towards my son when he wasn’t complying with her demands.
But in answer to those who may ask: how can we look after our own wellbeing while society and services are at times so detrimental to our families? I respond that we have to find ways to support ourselves. We cannot wait until social justice is achieved, and services are appropriately resourced, before we start prioritising our emotional wellbeing. Engaging in the 7 aspects of wellbeing in the SPECTRA can help.
Some key findings
I will touch on a couple of key findings that came out in my research below:
Special needs network
Connecting to other special needs parent networks provides a level of understanding and belonging which can counter isolation. Parents also find disability and neurodiversity advocates helpful; offering a different narrative that opens peoples’ eyes to difference and diversity. Representation really does matter.
Empowerment
Countering the disempowerment we can often feel, particularly in the early years, is key to wellbeing. Whether that’s empowering yourself to understand your child, to gain the support and services your family need or becoming more assertive to say no to unnecessary demands on your time. Parent carers grow a thick skin and find their own way to parent their child.
Parents become experts on their child and often special needs and disability more widely. They have valuable, solution-focused ideas and understanding. Despite this, they are rarely consulted to develop services, support and research.
‘Until teams do co-production properly, meaningfully, not just “let’s ask a few parents what they think”, but actually employ parents as consultants within a service to advise then it will never change.’
Helping others
The desire to help others (particularly other parent carers) is strong and powerful. It inspires parents to establish charities, raise awareness and campaign for better services. We share what we have learnt in the hope that it helps others. But at times activism and the constant ‘fight’ can also be exhausting.
Perhaps in helping others we can also support ourselves, including recognising when we need time to access activities that replenish and recalibrate us. What this involves is personal and may change over time. I refer to having a Swiss army knife of self-care to hand, which may include being in nature, mindfulness, taking a class (i.e. kick boxing, creative writing), finding a support group (face to face or online), listening to music or talking to friends.
An approach that may be useful is compassion focused therapy. This involves offering compassion to others as well as to ourselves. Acknowledging that human beings make mistakes and adversity is part of life. One simple strategy is to use the breath; think of the in-breath as self-compassion and the out-breath as compassion for others. Both combined and necessary. There is a useful guided meditation for caregivers here.
Supporting our emotional wellbeing as parent carers is an ongoing process. It’s vital that we learn how to identify, and implement, strategies that help – day by day.
[i] Singer, G.H. (2006) Meta-analysis of comparative studies of depression in mothers of children with and without developmental disabilities, American Journal on Mental Retardation, 111, 3, 155-169
[ii] Totsika, V., Hastings, R.P., Emerson, E., Lancaster, G.A. & Berridge, D.M. (2011) A population-based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability, Journal of Child Psychology and Psychiatry, 52, 1, 91-99
[iii] Griffin, J. (2019). A report into the Emotional impact of parenting a disabled child. March 2019, Researchgate, DOI: 10.13140/RG.2.2.15565.08169 (also on www.affinityhub.uk)
Joanna’s book Day by Day: Emotional wellbeing in parents of disabled children is published by Free Association Books. It can be ordered here. This giveaway is now closed.
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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