I reflect on what being a carer has taught me and what I’ve learnt from other parent carers.
Life always involves an element of adversity and we cannot escape that. What we do have in our control though is how we respond, the strategies we develop to deal with challenges and how we look after ourselves.
It can be helpful to think of wellbeing as a form of achieving balance. At times there will be more stressors, or difficulties in life, so it’s important we re-gain balance by engaging in more replenishing activities. For example, after a difficult hospital appointment or meeting in your child’s school, making time to talk to a good friend, take a walk in nature or just sit and read a book with a cup of tea can allow us to gain equilibrium. This is an ongoing, dynamic process. Being aware of our own emotions, including knowing in advance that something may be difficult, can ensure we build in a protective cushion around ourselves at these times.
2. Social comparison is unhelpful
Comparing to others isn’t always helpful. Psychologists talk of a downward comparison (e.g. my life isn’t as bad as x) which can help us feel grateful for what we have. There is also an upward comparison which can leave us feeling miserable when things are unattainable. Parent carers I spoke to for my research into emotional wellbeing did not always find comparison helpful, in fact for some at times it felt devastating, particularly comparisons on social media. Furthermore, when services compare us – e.g. being refused support because ‘there are people worse off than you’ – this invalidates our experiences and dismisses our concerns.
3. Growing a thick skin is useful
Judgement from others exists and sometimes, when we’re feeling at our most vulnerable, it can hurt to hear others’ lack of compassion and understanding. Over time, most parents develop their capacity to withstand this, and find their own community for support. Don’t underestimate how hard this process can be though, and maybe take a moment to recognise how far you’ve come.
Part of this skill involves recognising our own expertise on our child and the skills we’ve learnt: solution focused problem-solving, organisation, delaying our own needs while dealing with our child’s, finding little ways to grab a bit of time for ourselves even if it’s 5 mins locked in the bathroom.
4. Learning is constant and ongoing (and this can be a great thing)
While the negative impact of a lack of support is easy to identify there are also huge opportunities for growth, personal development and something that I refer to as a ‘wisdom’ that many parent carers experience. A realisation that the world isn’t perfect, parenting can be tough but we have more resources and resilience in us than we ever thought possible. We will find our own way. The skills and sense of mastery that we gain over time spill over in other areas of our life but we recognise that our life is forever changed. Our child changes us, our perspective, our assumptions, our knowledge base.
Some parents report how crises with their own child caused them to look at their own upbringing and lead to a more informed understanding of themselves.
But this growth is not inevitable, it can never be assumed and is precarious. When numerous problems and lack of support continue it can be all consuming, disheartening and destructive for our wellbeing.
5. Difference makes the world go round (but not everyone recognises this, yet)
Parent carers can embrace diversity and accept that people are different, and that’s ok. Some social rules are absurd and we grow to know what we can aim for and what expectations are traumatising for our family.
6. Anger at injustice can motivate change
While drowning in a downward spiral of anger is not helpful, if we harness anger to enhance our assertiveness and achieve clarity on our priorities in life it can be a great motivator. At times when we feel like giving up anger can give us energy to continue to fight.
Although in the longer term there can be a personal cost if there is no respite from this feeling.
7. New skills to deal with stress
We learn new skills to deal with stressful events, things that cannot be changed or frustrations with services. I have honed my ability to notice, engage with or delay my emotions including holding onto the old adage ‘this too will pass’, rather than being overwhelmed by feelings.
8. SPECTRA: Different things help at different times
My research into emotional wellbeing in parent carers identified 7 dimensions that help at different times. 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 all of these in my book ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children.
9. Parenting doesn’t end when your child reaches 18
Of course this is the case for all children but may be more explicit in children with a learning or developmental disability. Things continually change and some aspects get easier.
Our growing awareness of what adulthood means to our child may also require a further period of adjustment. In research parents of teenagers reported being ‘forced to acknowledge the reality of their child’s continued dependence while also facing challenges related to their child’s social isolation and peer rejection, puberty and transition to adult services’ (Woodman and Hauser-Cram, 2013).
New challenges come along but your capacity to cope also increases.
10. Good enough is good enough
We are all sold a bit of a lie around ‘perfect’ parenting including the images we see on social media and in advertising. Rather than perfection we should aim for ‘good enough’ parenting. That includes sometimes leaving behind our own model of parenting, based on our upbringing, if it does not suit our child and family.
My book ‘Day by Day: Emotional Wellbeing in Parents of Disabled Children’ is available to purchase here: www.amazon.co.uk/Day-Emotional-Wellbeing-Disabled-Children/dp/1911383531