Some writing just gets to the heart of it. The impact of it. The emotions of labels.Doesn't matter what impairment your child has.
Violet is herself visually impaired, a "Mum of 2, wife of one. Disability campaigner. Novice Blogger and tweeter and expert chocolate eater!" she says. One of her children has Asperger's syndrome. Her blog post "High Functioning Autism vs Aspergers: The emotions of labels" is about her response as a Mum.
Look, here's an extract, but just take a moment to go and read it for yourself.
On the way home on the bus it all suddenly hit me. It was real, written in black and white. I realised it would never go away. I had subconsciously been hoping that they would say there really was nothing and that B would eventually grow out of the difficulties, challenges and unique behaviour. I didn’t feel the relief I had expected to feel. That, in itself, caused feelings of confusion. I felt sad and upset. I felt like we had all been given a life sentence to something we didn’t understand and at that time, knew very little about.
On top of all those feelings I felt guilty and confused about feeling the way I did. I want to talk a bit about the guilt. I really struggled to relate the very real emotions I was feeling as a Mum with the values I believed in as a disabled person and had worked towards promoting for a large part of my adult life.
As a disabled person I believed (and still do) that all people have value and that we all have equal rights irrespective of impairment or health conditions etc. ....
So, why did I feel sad? B was still my Son, he wasn’t changed in any way, he wasn’t worth less just because he now had a new label. Why did I feel like my world had been turned upside down? I was still his Mum, I shouldn’t be feeling sorry for him or myself. Disabled people didn’t want pity. As a disabled person he deserved rights and respect not pity and sadness. At that time I did feel sad and because I felt sad I felt guilty.
Thanks to Special Needs Jungle for drawing my attention to Violet's terrific piece.
