Many parents of disabled children will have been through a traumatic experience: seeing their child go through invasive medical interventions, difficult birth, or even day to day cumulative traumas and may show ‘evidence of post-traumatic stress’ [i].
As parent carers we usually come into contact with medical and other staff more often than parents of children who are typically developing. Every experience of contact is potentially retraumatising and the quality of the interaction of utmost importance. Emerson states ‘UK services are not designed to support traumatized parents, and health practice may serve to compound distress.’
Through my research into emotional wellbeing in Parent Carers, parents have reported how understanding, compassion and empathy can make a big difference. Knowing that someone really ‘gets’ that you may be exhausted, overwhelmed and struggling rather than being faced with judgement or dismissal can have a positive impact on our wellbeing.
Services can benefit from working in a trauma-informed way recognising that traumatised individuals have two main requisites:
The need for physical, psychological and emotional safety through trustworthiness and transparency
Opportunities to build a sense of control and empowerment through choice, collaboration and equality
Something simple like a recent blood test for my son brought up all sorts for me. A potential long wait at the hospital + preparing him + my worries regarding how he’d react + bringing back upsetting memories of other times we’ve been at the hospital + no recognition from others than this was hard = I felt upset and on high alert.
In the end my son was fine, but I needed some time to recover afterwards that involved going for a nurturing coffee (me) and chocolate cake (my son) to create a positive ending to the event. The feeling lingered though and made me think how often parent carers rush from one appointment to work, to another appointment and then back to the busyness of home without acknowledging the personal toll.
We need a safe space to re-charge. We need compassionate, understanding and timely support from others to help us hold the emotional load that we carry.
Sometimes we just need someone to notice and ask how we are.
For more advice and tips on wellbeing please visit www.affinityhub.uk Emerson, A. (2019) ‘Room of Gloom’: Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma, Journal of Loss and Trauma, DOI: 10.1080/15325024.2019.1658946
Please note: Post traumatic stress is a common reaction to a shocking event or events in our lives. It only becomes a disorder when it goes on for a long time and affects our functioning. If you are experiencing: flashbacks, intense memories of a traumatic event, heightened startle reflex or hypervigilance which are affecting your overall mood, making you avoid certain places or things, affecting sleep or your concentration for more than at least one month after the event please talk to your GP about a referral for psychological support – such as Trauma Focused Cognitive Behaviour Therapy (TF-CBT) or eye movement and desensitisation reprocessing (EMDR).