By Press Release
When did your child last shout that they really, really love you? Mine does repeatedly, with no inhibitions. There never have been; my child cannot be embarrassed like the rest of us, and it’s always been like this.
Fifty-odd years ago I gave birth to my perfect new baby. It was a difficult birth; nobody realised the cord was tightly around my baby’s neck, cutting off the oxygen supply. At the time, in that chaotic room, doctors assured us everything was fine, and – like all parents – we were bursting with pride. As those precious first weeks passed I sensed that something wasn’t quite right. Progress wasn’t the same as with my first born. We were assured by the health visitor that all was well; my husband was convinced, but I didn’t believe a word of it. When the doctor confirmed our beautiful child was ‘brain damaged’, I didn’t cry; I was just relieved.
In those early years our beloved child didn’t talk at all and reading and writing just never happened. All children with a disability are unique. Some can lead lives much like the rest of us; they can live alone, work, and have relationships. Ours is not like that, and when my husband passed away, I was left to cope alone.
Somehow, we managed. The options for day-care and respite are limited, by both cost and availability. If you need a break, even a weekend off, you struggle to get one. Friends and family mean well, offering practical help, as they would with a child, but it’s not the same.
Children with disabilities attract sympathy, love and care, but when they become adults, people melt away, embarrassed.
I wanted to keep my now adult child with me until my dying day, but I was defeated by age. In any event what would happen when I died? I spent years fretting about it, until family persuaded me to face up to reality. At the time, I was reluctant; in the ’60s and ’70s institutions that cared for adults with learning disabilities were dreadful places. They still used straitjackets and locked people away. When we found Kingston Farmhouse, a small specialist home, I was delighted – thrilled! The residents were clearly happy. They had their own rooms with en-suite bathrooms. The staff were caring, all meals were home cooked and residents took turns to help prepare them and wash up afterwards!
As the years passed, the biggest worry of my life had ended. My beloved child was content and happily part of a new family; the other residents felt the same. Then the other day, with so very little notice, we were told via Zoom that the home will close with the eight residents out by Christmas.
Social Services have tried reassuring the families that all will be well; they’ll find somewhere for each of them. But they don’t seem to realise they’re a family, and they will be split up. You wouldn’t do this to children, and these adults are just like children. They’ve been told what’s happening, but they don’t understand what closure means. They live in the moment, not comprehending much more than what’s happening today, or what’s for supper.
All us families thought they had a home together for life; we just didn’t see this coming. Many of us parents are near the end of our lives, in our 80s; some residents are already orphans. All of my worries from those years ago have returned and I have spent days crying. All of us parents have been tearful and distressed, we just don’t know what will happen to our children next, and there is less than two months to find out.
This article has been anonymised to protect the privacy of the vulnerable adult.
