Today I had another highly depressing conversation with another professional – well, a charity worker (are they professionals? I lose track) – about what help I need to look after my daughter. I find these conversations rather trying, because the first part of the conversation is always the same – and always very depressing. They want to go through all the behaviours and foibles of your child that you find difficult. So you have to recount all the battles you have, every time, and because you never talk to the same person twice – or they are so overworked they can’t remember what you said the last time – it doesn’t matter how many times you talk to an organisation, they always do this.
Today, it got to me and in a moment of pique, I threw my toys and basically said “don’t call me, I will call you”. I love my daughter, I love her more than life, and sometimes she is all that keeps me going. I find the neverending recounting of her personality quirks (I refuse to call them faults) heartbreaking and distressing. I feel that all these people have completely the wrong idea about her.
They hear ‘autistic’ and picture a screaming, violent daemon in a child’s body. I mean, don’t get me wrong, she has her moments.. but they don’t seem to grasp that she has a smile that lights up the world and a heart of gold. This little girl, who is still trying to decipher the world she is in, will bring you a blanket if she finds you napping on the couch. She will offer her last sweet or crisp to you. She kisses your ‘owwies’ better and treats them with antiseptic cream (no, she WILL kiss them better and treat them with cream, you don’t get a say in the matter). My darling daughter leaves the house in the morning for school only after telling her daddy she will miss him and giving him one last hug, even though she struggles to form the words. And wants ‘big hugs’ the moment she’s back, too.
Yet I sit and listen to call after call telling me she’s ‘pre-verbal’, ‘non-toileted’ and ‘routine driven’ like this is the sin of a century for a 4 year old. I get it, she’s not in standard parameters, and she is hard work because she has no sense of danger. Believe me, I know, most lemmings have more survival instincts than she does. But she is improving: she now looks before jumping off the staircase. We can now ask her what she wants to watch, and at least she understands the question.
If all you are going to do in these phone calls is list what you see as her negative attributes, then ask me what support you can give me (seriously, how would I know what I need that you can give, I’m not psychic) and then promise to call back in 2 weeks to do the same thing again, the biggest thing you can do for me is sod right off.
Raising the Modern Fae 