Language sometimes fails us. I had considered myself pretty proficient with the English language and its Bristolian colloquialisms, a confident user of terms such as “slider”, “smoovin’ the cat” and “gert lush”. I hadn’t had too much trouble making myself understood; that was until I had found myself on the unexpected life path of being a Parent Carer to a child with disabilities.
Suddenly I found words could not communicate to my friends and loved ones my parent carer experiences in a way that was truly understood. Brenda Boyd author of “Appreciating Asperger Syndrome” and mother of Kenneth Hall author of “Asperger Syndrome, The Universe and Everything” wrote:
‘Sometimes I tried to confide in other people about the problems I was having with him, but it was very hard to put across the severity. None of the problems seemed that different from ‘normal’ problems. For example if I said I could not get him to eat, or sleep, or conform or whatever, they would compare my situation to theirs, and they would say something like ‘don’t worry I have problems getting my son to eat too.’
This perfectly sums up for me the disconnect that I’d been finding between what I wanted to communicate and the understanding and responses I was met with. Sometimes I wanted to scream “When I say he can’t dress himself, I don’t mean I need to rearrange his buttons occasionally, I mean, if I physically didn’t dress him he would be NAKED… FOR …MONTHS!!!”
It hurt. I began to shut down, share less, confide less and heap emotional isolation on top of the social isolation parent carers often find. That was until one fateful day, ah the sweet relief, I had found my parent carer tribe. I was introduced to South Glos Parent Carers.
Here was a group of warm and welcoming people, all of them, every single last one, on a similar but not identical path who ‘got it’. People whose own experiences reflected my own, who just knew that when I say “I am tired” it is not the result of a bad nights sleep, it is the result of 6 years of bad nights sleep. There is a gentle knowing and understanding between South Glos Parent Carers members that have enabled me to feel heard and validated, and all this is on top of all the other amazing work they do.
Finding my Parent Carer tribe has meant so much for me. It is just awesome to know I have a safe space to share; this has had such a positive impact in other areas of my life. If you are a Parent Carer and need to find understanding, look to your local Parent Carer Forum and if you live in South Glos, we are here, waiting for you, with a coffee and a sofa and heaps of warmth and understanding.