Day by Day…
Day by Day: growing in awareness and understanding
Following a traumatic birth and 23 minute resuscitation my son was alive, but only just. When hypoxia ischaemic encephalopathy (oxygen deprivation and restricted blood flow that affects the brain) and cerebral palsy were diagnosed it floored us as a family. But, over time, has led to a huge upskilling in our knowledge and awareness.
It’s been a tough journey with ups and downs along the way. Struggles and challenges have been intertwined with joy and celebrations at achievements I didn’t dare hope for in the early days, such as when my son first smiled, rolled over and spoke. His funny, quirky jokes and moments of incredible connection still regularly lift my heart. There is so much love for our whole family.
In the early days I found the uncertainty particularly hard to bear though. What would the future look like and, more immediately, would there be a future? Not knowing how to best support my child felt very de-moralising and I questioned my innate maternal instincts. Not a nice place to be.
I’ve since developed the capacity, shared by many other parent carers, to be a detective. What’s going on for my son? What mood is he in? How did he sleep? What’s going to trigger a response? Snacks in my bag to make sure he doesn’t get hungry (trigger). Keep away from busy areas that he finds overwhelming (huge trigger). How to keep him well as he is prone to illness that leads to many further difficulties.
But there are moments when my son remains a bit of a mystery. A spikey profile that can vary day by day. On reading a description by an adult who had experienced a stroke, I found my understanding of brain injury improved. She described the impact of fatigue as feeling like a ‘jigsaw in pieces’* causing confusion and difficulties with memory. All of which potentially helps me understand my son better, particularly on challenging days.
For the last four years I have been researching emotional wellbeing in parents of disabled children. Through talking to parent carers it became clear that the capacity to gain insight into our child’s perspective was a key aspect in not only being able to support and understand them but also to improve the parents’ wellbeing. We want to know how to help our child and to see life from their viewpoint. It feels good and we feel competent. This ability is enhanced when connecting with others in our community with shared lived experience.
But learning to navigate our new world and develop these skills can be tiring. Life can be overwhelming as a parent carer: the fight in perpetuity, the lack of understanding and worries about the future. Being a physiotherapist, occupational therapist and advocate, on top of parenting, can come at a price. We need to take time for ourselves to recognise the extra pressures we are under and the resources caring requires.
In my book, Day by Day: Emotional wellbeing in parents of disabled children, I outline many of the ways in which parent carers can support themselves. With practical tips and strategies I discuss the common emotions experienced, how relationships can be affected and offer suggestions for creating what I refer to as a Swiss army knife of self-care.
One such approach is compassion focused therapy which involves offering compassion to others as well as to ourselves. A simple strategy is to use the breath. Breathing in and out while thinking 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. (https://www.youtube.com/watch?v=EHvX7_ib-F0)
In these uncertain times finding ways to support ourselves is even more vital. This includes protecting time that is yours as well as connecting to others with shared experiences. I’ve learnt that life doesn’t always go to plan but it’s possible to survive and even thrive. I hope by sharing this, other parents will recognise it too.
Joanna Griffin is a Counselling Psychologist and parent carer. Her book Day by Day: Emotional wellbeing in parents of disabled children is out on 7th May 2021. Building on the author’s Doctoral research and having supported parent carers in different roles over the last 13 years this book provides a compass to ensure parents know they are not alone. The book is available here: https://www.amazon.co.uk/Day-Emotional-Wellbeing-Disabled-Children/dp/1911383531
* Vaughan, F.L. Changed at a stroke. The Psychologist. March 2021.Da