A Parent Carer Perspective Of Loneliness

28 April 2022

Louise Rixon talks about being the parent of a child with complex care needs, autism and a hearing impairment.

A Parent Carer Perspective Of Loneliness

28 April 2022

Louise Rixon talks about being the parent of a child with complex care needs, autism and a hearing impairment.

Louise Rixon

When our son was born back in 2006, we envisaged a similar parental journey to that of our two older children, then aged 3 and 6, that of the never-ending birthday parties, play dates, nursery and school trips. To begin with everything seemed to be quite similar, I took Edward to a baby group, then a toddler group, I started thinking about primary school. I envisaged a time when he started school that I’d go back to work and begin my ‘adult’ life of being Louise again and not ‘Edward’s, Anna’s or Isobel’s Mum’.

Life changed when Edward was two years old. Whilst we knew he had a hearing impairment, my husband and I both carry a gene for this so it wasn’t a shock when we were told that at his birth, we weren’t prepared for the subsequent severe autism diagnosis that came. It was probably around this time that my life, as a mum, and that of friends I’d made through various groups, started to change. As their children all started to hit their developmental milestones, Edward did not, as their children started to talk, Edward didn’t and as these differences became more significant so these friends started to drop away. Birthday party invites stopped and the social aspect of having a child ground to a halt.

At first people didn’t know what to say to me, should they tell me how brilliantly their child was doing? For the record the answer to this is ‘yes’, I always wanted to hear how people were getting on. As our children all grew up my life became a series of appointments at hospitals, with therapists, play specialists, speech and language teams, specialist educational needs teams, social services… the list goes on. Whilst friends spent their time either going back to work or taking their children out together, we spent our time explaining again and again to different teams what the issues were. My life became a series of battles to make sure Edward had the best support in place, the right school, the right therapies.

Whilst friends spend their time re-finding their social lives when their children started school, I spent mine researching autism and trying to find support workers. Our lives became increasingly inward facing, our little bubble of a family became everything. But I became increasingly aware of how lonely I was, how my life had changed so much, from a job I loved and a great social life to my main conversations outside the family being with the professionals supporting Edward.

When he started primary school, it was over 20 miles away and he travelled by taxi, so I missed out on the school gate conversation at his school. School holidays were spent just trying to cope with a child who grew up physically but stayed the same cognitively. Our house became a fortress of locked doors and windows to stop our increasingly bigger escapee from making a break for it. We stopped having people over to the house as his care became more complicated.

I think that there is a huge underestimation of the effect of loneliness on parent carers, it isn’t a short-term situation but one that envelopes every part of our lives. The friends that stay the course are few and far between but the ones that stayed are the best I could ever hope for. And I have found a new group, one where we can talk about our children’s achievements and challenges, one where we don’t compare our children’s educational triumphs and one where we celebrate the diversity of our brood.

9 thoughts on “A Parent Carer Perspective Of Loneliness”

  1. I’ve been caring for my grandson with special needs for 8 years now. It’s been permanent lockdown. And same amount of specialists social work. Some of it telling me I was not doing a good enough job. It’s just my grandson and myself. Very lonely. But worst is. I just don’t recognise myself at all. I keep saying to myself. I want to go home. ?. As soon as he can’t see or hear. I cry. All these strangers in my life. Meetings. Watching me. Kinship care. Not nice. I get the your doing great gayle. ?. For him yes. For me. No I’m not.

    1. Thank you for sharing your experience with us Gayle. We have some resources that may be of some help to you. This article has some information about looking after your own wellbeing as well as the child’s and links to a guide with even more detail into this. If you’re having any issues with regards to accessing health, social care and related issues, our Legal Rights team also on hand to help, should you need them. You can get in touch using their contact form.Take care of yourself.

    2. Hi Gayle, I would really recommend finding a local carer group (parent carer groups always welcome grandparents etc as well). Having people you can chat to who understand your experience is invaluable.

  2. Thank you for sharing your story. I am going through exactly the same, it’s not easy at all. Sending you a big hug ❤️

  3. My heart goes out to you and all those who are caring for children which require so much care… mentally, physically & emotionally ❤️.

    It’s a long road, but my son is eighteen next year and i found the local support groups and doing nice things for myself wherever possible (like, the odd nano-seconds when he was at school & i wasn’t running round fitting in all the stuff I couldn’t when he was with me!) .. these moments helped some.

    Rather like a grief, i learnt to live with loneliness and eventually accept and enjoy the minutiae of life. My life will always be distinct from other parent carers, but i have had an entirely different view on my path, I can’t say i would wish to repeat this journey, but i sure as hell take nothing for granted anymore and as a result have found happiness, appreciation and contentment in so much of life that others don’t seem to?! I still have challenging days with my son, but seeing the sunshine ☀️ through the raindrops has helped enormously and for that I am grateful.

    Take time for yourself wherever you can. Don’t feel bad or selfish, (it’s the ‘oxygen mask’ analogy). Find moments which give you joy (however small). Sending supportive hugs to all. Xx

    1. Hi Georgina, thank you so much for your comment! It’s great to hear another perspective from a parent and I’m sure this will be a boost to any parent carer who is going through a difficult time. So glad you managed to find a balance and make time for your yourself while caring for your son – it’s something that is so important for your personal well being and for your caring role. Sarah

  4. Louise
    Thank you for sharing your story which many of us parent caters will relate to. Our son is now 21 so I’ve accepted our way of life now. I recognised the need for support so set up monthly coffee mornings at Joshua’s special school , giving us the opportunity to chat, Moab and eat cake! I’m now hoping to set up something similar at his daycare . Emma

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