This is Mental Health Awareness week, with the theme of ‘loneliness’. Being the parent or carer of any child with special needs is a demanding role and one that can feel isolating and I read yesterday that 93% of parent-carers have felt loneliness. Certainly when Joshua was a baby and the rest of my group of antenatal mums would meet up on a weekly basis, they all had perfect babies and mine had a diagnosis of brain damage, which inevitably made me feel different and isolated. That feeling exacerbated when our children all went to nursery then primary school together, especially once Joshua moved to a special school. Once their children were pursuing their GCSEs and A’ levels at school, we had nothing in common anymore and gradually, sadly, we have virtually lost touch.
I have suffered more from feeing alone, rather than loneliness and I see a difference. For me, loneliness is a feeling of not having anyone around to physically support you, whereas feeling alone is a more emotional state, of being isolated and misunderstood. It is perfectly possible to be in a room full of people, yet feel alone. I often felt alone in my office full of colleagues, yet the building was full ,so I was not lonely. I recall one time that I returned from school after a very emotional meeting about Joshua, and nobody asked me how I had got on, even though they knew my meeting was a big deal. I slipped upstairs to my office where I cried at my desk, as I felt that I and our family, was not important to these people that I worked with everyday for over 20 years. That day , and on many others, I felt isolated and very alone; it continued as my colleagues agonised about their children’s poor school reports, learning to drive, applying for university and leaving home – all problems that I would never share. I resented their worries in a way and they would never empathise with my very different worries.
That is why I began the parent coffee mornings at school, so that parents of children with special needs, who all attended the same Special School, had somewhere to go once a month where they did not need to feel alone. A place where they knew others would understand how they were feeling and where they would never be judged for saying the unthinkable, out loud. The homemade cake was incidental, it was a bonus but it was really about trying to support parents and overcome potential feelings of loneliness. The trouble was that those who arguably needed it most, struggled to attend. Their mental health was so poor that, despite their best intentions, they never made it along, yet they would have felt so much less alone if they had braved their fears of leaving home and coming into a room full of strangers. But I could not force them to attend, all I could do was remind them every month, when the event was coming up and hope that they had the mental strength to overcome whatever kept them away.
So I am well aware that loneliness is a very real issue for parent carers and the problem is that, when suffering with poor mental health, they are unlikely to have to resources to be able to overcome those feelings of being alone. They will lack the confidence to meet people, either strangers or even people that they know already. I have recently joined a group of Mermaids who swim in the sea in the early hours of the morning and I am loving it. They are such a friendly group and so even though I knew nobody when I first went, I was made very welcome. I have swum with them 6 times now and they feel like old friends already and even said that they would miss me while I am away on holiday this next week. So as well as enjoying the cold water swimming, which is a totally new experience, I am loving this new friendship group too, and I would not have been able to join them when I was feeling low, so it is even more precious now and I am incredibly grateful to them.