When my son was first born I remember being hit with a multitude of feelings. To be honest I was a bit all over the place for a few years. Not only navigating the new education, health and care systems which felt confusing and inflexible, but also trying to make sense of my different emotions.
As a psychologist, perhaps I should have known that it was ok to feel lots of different things – positive and negative, all at the same time. Yet I found it disorientating and there were complex layers. For example, feeling angry about something or wishing things were different, and then also guilty for feeling that way. I needed someone to say – ‘this is an understandable reaction to an unexpected situation’.
But instead, parents are often met with a wall of silence. Despite the influx of professionals and services that suddenly became part of family life, it is rarely acknowledged that things may be difficult for parents, most of the focus being on the child.
Feeling like a failure
In fact, some of the things professionals do can worsen feelings of being disempowered. I sometimes felt, in some way, I was failing as a parent. It was hard to keep up with therapy programmes, chase reports, and look after my younger sons. But when professionals ‘get it’, and connect in compassionate and human ways, it can be a very precious thing.
Common feelings parents of children with additional needs can feel include:
- Anxious, stressed or feeling ‘on edge’
- Depressed or Low Mood
- Guilt about their child’s diagnosis or difficulties
- A sense of loss (this can be about lots of different things – including loss of work or spontaneity)
- Shocked or traumatised by events
Parents also commonly report:
- Gaining a wider perspective on life
- Greater compassion and understanding of others
- Developed expertise and awareness
- Joy and pride in their child’s achievements
- Closer, and more valued, relationships
Feeling lots of emotions at the same time
Emotions aren’t always distinct entities and we can feel many of the above at once – which can feel disorientating and sometimes quite exhausting.
Over time, like most parent carers, I found my feet. But it took a while. And it could have been made easier by some simple messages from those around me that would have helped.
To the parent carer who is struggling:
- It’s ok to feel an array of different feelings. You are not mad or bad.
- You will have up days and down days. Sometimes the special needs world buffets you around a bit. Try and find something to ground you.
- The system is supposed to support you, but at times it can add to your emotional load
- You know your child best – you don’t have to follow every bit of advice, especially when you have numerous professionals in your life sometimes ‘treating’ different parts of your child. You have a holistic overview and know what’s possible in your family
- Find your special needs network. This can be face to face (less so at the moment) or online. Connection is key to your wellbeing.
- There is still stigma and discrimination in the world. You may need to grow a thicker skin
- Your child is a child. They are unique. They want to be loved and they love you (even when it doesn’t feel like it). This is the most important thing – from which all else grows.
- There are times when you need a break. This is not a luxury add-on. It’s part of being human and caring for another human being. Build time off into your daily and weekly routine.
- If you are feeling low or anxious over a long period of time it might help you to access specialist emotional support. It’s ok to reach out for help.
Jo is a doctoral researcher on emotional wellbeing in parent carers and is currently writing a book on the topic. ‘Day by Day: Emotional Wellbeing and Parenting a Disabled Child’ will be published in May 2021. You can follow Jo for more hints and tips on Facebook, Twitter and Insta