Last Friday Emmy’s Psychiatrist had a catch up meeting with us.
He’s a nice man with a very friendly name. He sounds like a character from a Beatrix Potter story.
He used a word that I don’t like though, one that I’ve hated and feared ever since Emily was diagnosed. That word is regression.
Regression can occur when all of the developmental skills your child gains disappear. A 3 year old in full meltdown is challenging but a 14 year old throwing you across a supermarket is something else.
All parents are delighted when their children achieve their developmental milestones. It’s a step further down the road to an independent life.
No matter what level of ability your child has, our job as parents is to raise them right and let them go.
As Emmy has grown up I’ve spent a disproportionate amount of my life watching other people. She has a fascination for mirrors and shop windows, ponds and fountains. Basically, anything with a reflective surface.Sitting with her, sometimes for hours in the last decade, as she inspects reflections, I've have a chance to see the world of others pass by me, I’ve seen many elderly carers and their adult disabled children.
So as the Psychiatrist talked about the fact that Emmy was regressing and gently raised the subject of residential schools, I listened and folded my arms and smiled and slammed the shutters on the metaphorical queue of feelings waiting to be fed.
I can intellectualise it. I’m fierce about it. I have no right to be over protective. I have no right to wrap her up and rob her of her experiences. I know that we won’t live forever. I know that Emmy must be given the freedom to live her life.
I know this, I believe this, that’s why I’ve always fought for respite and encourage as many parents as I can to do the same. It’s also why I campaign to change attitudes towards disabled people in an effort to reduce stigma and bullying.
Emmy by virtue of her needs will have a life lived at the behest of others. Following in the main, an agenda dictated by others. This is the reality. I’d be being a bad mother not a good one if I stood in the way of this happening when she’s ready.
For other people in my situation society frowns on the reality we are faced with. Good people have to make this choice everyday. Loving parents devoted and kind are judged by other parents blessed with much easier lives and found wanting.
So that’s been my struggle for the last seven days. As we know heartbreak isn’t an intellectual pursuit.