I always thought I knew enough about disabilities. I have always been around disabilities somehow, the invisible to the eye disabilities all the way through to disabilities which are extremely visible. I may not have known all the names for all the disabilities but I thought I was quite knowledgable about the fact there are different types etc.
I realised yesterday that I know nothing. BBG is going to be tested for Retts Syndrome and Angelman Syndrome along with all the mitochondrial testing and other tests. It made me realise I had no idea about syndromes at all!
I knew there was Down syndrome. I didn’t realise there was different types of Down syndrome, even down to one where the facial characteristics may not be present due to it being mosaic Down Syndrome (so only duplicating some of chromosome 21 not all of them). Even then I don’t know anything.
I had heard of Prader-Willi Syndrome but thought it was just intense hunger. I knew it was a disability and knew it changed the whole families life’s but that’s about it. I had no idea that it also came with physical difficulties as well. I had no idea it was to do with genetics.
I guess I also thought once the doctors suspect your child to have a syndrome that was it, one blood test and their diagnosed.
I didn’t realise there were syndromes that are only in females or only in males. I didn’t realise syndromes can be because of duplication or missing chromosomes or even a slight mutation of the DNA.
I didn’t realise there were so many ways that mutations can happen in the body causing syndromes. I just thought it was chromosomes that caused the disabilities.
I just didn’t realise.
Was it naivety or simply being an ostrich and burying my head in the sand, saying “I am not affected by life with a syndrome so I don’t have to know.”
I’ve realised whatever it is shouldn’t have been the case. Disabilities are around us everyday. When you walk to the shop or you go to work etc you will encounter disabilities. I’m not saying we should educate ourselves on every disability as there are millions but I definitely think we need to know more and have a more rounded knowledge. We need to educate our children about disabilities. We need to Stop looking at people who park in disabled bays with a disabled sticker and have a go at them as they don’t look disabled.
It’s time to educate ourselves not just shrug our shoulders and say it doesn’t effect me, as you never know what will happen tomorrow.