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Tag: happy

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.

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Curtainless windows

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So we just moved and I had so many plans to make it PERFEcT in 3 months. It was in a pretty bad way so I must have been mad. Also now we have no money. Every night now I lay in bed it’s still light and look out through my beautiful oldy worldly windows and I feel pretty lucky. Not sure I want curtains but will probably change my mind when winter comes. Loving this summer.

My son shouts a lot. I came home and he cuddled me then we tried to cajole him to dinner. The dinner or bed option worked for a while but now he just says dinner bed and takes himself upstairs. It’s actually a bit scary. No dinner and taking himself to bed and not sleeping. What to do.

Tonight was different tho he shouted a lot. He shouted all day. After no dinner we went to pick up Raf from his friends house (Rafael my baby no 1 now 8) and I took them for ice cream. He ate all his special frozen yoghurt gluten free cone that I drive across north London for. Rafi loves the place. Frozen yoghurt with jelly men and marshmallows and strawberry sauce ? Urgh me I like it completely plain. Anyway after the ice cream Which Canon managed to say Nice ice cream (sorta) I turned on the radio “nooooo” shouts the backseat despot. Nononono the only song not to get a stampede of nos is Pharrell happy which we all used to love and now cannot bear to listen to we have heard it that many times.

Tonight in the end I decided to play my song and sing very loud until we pulled up at home. I felt happy the boys were disgusted : )

Its the little things.