unitedinsite

Tag: Lonely

As long as he is happy…

Well as long as he is happy… This is said to me often about my 4yr old son Canon who has autism. It grates on me. It misses just so much, boxes up our experience with a bow and gives it back to me tidy, nowhere to go. Conversation finished. Superiority established. Wow.

I think i probably would have said it before I had experience parenting my son. Bare with me with this because I’m working this through. Someone i really love and respect said it to me this week and because I was safe I became impassioned. No I cried, that is not enough. It’s not enough for our children to sit vibrating in the corner, spin round the room, grind their teeth staring at nothing humping the floor all day (yes my son can do all 3) everyday because this is our son and we want more. He is happy as Larry checked out and oblivious to us. You wouldn’t say as long as he’s happy if he were on a class A or if he had another physical disability. There is something I feel about the word autism that invites dismissal and patronising behaviour. To the autistic and the parent. It’s interesting. Maybe we think its the parents fault, it might be and we’ve read articles to the myriad of reasons as to why it might be. To the autistic we presume complete incompetence or savant. Its confusing. AND. My experience is all the in between.

I get that the most important thing, the best thing in life is being happy. Maybe he will be happy or maybe he won’t. Somehow though what I hear when you say that is no hope. He is beyond the normal ups and downs, so disabled that he is going to smile through life and not feel the journey like me, the agonies and of course the ecstasies.

As long as he’s happy.. This is what I actually hear:

Why are you speaking? Lets stop. I’m not interested.
Back to the important things…
God forbid you tell me it’s hard you selfish woman.
It doesn’t matter what he does.
It doesn’t matter what he learns.
Let him sit in the corner rocking all day.
I don’t see your struggle to work out this unplanned journey at all and frankly I don’t care.
I don’t see you’re effort to understand and help your child because its so simple.
I don’t see the epic journey you have made from victim, through fighter into loving acceptance and trying to presume complete competence for a child no one else really cares about or thinks capable of much.
I don’t see the epic journey your child is making trying to adapt to the world they don’t understand day after day after day.

What i really hear is that you don’t care to know more.

What is freedom?

There are things you should do and things you shouldn’t. It depends where you are from what these are probably but some are possibly universal. Instinct should never be ignored, how many glorious things are lost because we are trained away from even knowing let alone following our instinct. The fear is us being feral. Who wants feral children or adults? Like animals? Better than zombies so me probably. It’s a fine line – tricky to navigate. When does one push through and extend out of saying what you are meant to say, what’s safe, tried and tested. Everyone has got so good, so right on, it’s lovely but argh say what you feel, be who you are. So boring. Maybe it’s just in my little life right now this feels really relevant.

My kids don’t really roam free. Where to? we live right in the middle of London. They don’t even want to go out alone. I did when I was 8. I did all sorts of crazy stuff but I had a rebellious older brother which probably helped. I’m going to make my eldest walk to the shops on his own. Tomorrow. This is ridiculous. They don’t knock about, run wild and free without an adult nearby. So sad. So safe.

I don’t worry. They are safe ferried around by me. So instead I worry about money, mortgages, careers, love, blah blah and none of us are free.

Our lives aren’t getting free-er (is that a word?) they are getting more fearful and lonely in every which way you look at it. I’m on duty in this house, I am duty bound to make my kids roam free. I am also challenging myself to speak the truth, my truth, my feelings and sense. It’s epic. For me anyway. Trusting my instinct and going for it. Taking the risk.

One life and all that.

Tomorrow I am going to say to my eldest son – speak from the heart and speak your truth. Never feel afraid it’s all you have and if you don’t value it no one else will. Eleven if you get in trouble at school. Gasp.

I want to feel freer, lighter and abundant. I want it for my kids. It’s a work in progress, it will involve life changes. Good. Start tomorrow.