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Tag: determination

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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Autism

My wonderful cousin Jane sent me ths article this evening and it really inspiref me and made me laugh and cry with recognition, hope and despair and grief.

http://www.nytimes.com/2014/08/03/magazine/the-kids-who-beat-autism.html?module=Search&mabReward=relbias%3Aw%2C%7B%222%22%3A%22RI%3A13%22%7D&_r=1

Wow what a day can I just say. I haven’t seen the boys much as I was out all day after dropping them at school and when I came back they were all asleep which thank goodness is a rarity for me as I feel slightly disconnected especially after reading an article like this.

It has bought up so much stuff for me. I am still somewhat taken a back at people’s assured grasp on autism. Some comments really do defy belief. After reading lord knows how much on the subject I know I don’t bloody know. I know I am doing well with it now, Mike is doing well (well I know he still says Canon is cursed but apart from that …) and Canon is doing really well. I know this I am in a better place but I also know what the journey to here for us has been. I think it possibly might be unexplainable on one level as it sounds quite dramatic and a bit hmmmm highly strung which I do accept to be an outside perception, I know I have thought that sort of thing about parents too. Genuinely. But my experience of absolute fear, panic and devastation at seeing my gorgeous son completely disengage with us and life has led me down a different path of life..

To a different dimension. Comparible but more profound than my three natural child births (pain that makes you see life a bit differently, a bit more vulnerably) and my mums look of complete terror when she was taken into a private room at the hospice knowing she would die there (which she did a few days later) All of theses experiences were totally beyond me, out of my control and pretty hard to bare.

My sons autism was regressive so the most terrifying element I think is the fear of this unknown destination. When you realise your child is no longer saying any of the words he once said freely or happily, his eyes firmly fixed on some point firmly about at least half a meter from your own and behaviours undeniably strange – running in circles humming, stuffing the bed sheets in his mouth and squirming on the floor for hours if left to his own devices, screaming the house down, panic stricken cries if you left his sight for a second, all night humming blah blah etc.

Anyway it might not sound like much to some people but WTF. Literally what the fuck is goi g on, has happened, what should we do and where is this going? I’m pretty hardy and it flummoxed me for quite some time.

If someone tells you their child is autistic you don’t need to fix it by telling them what you (just really don’t) know. I can take it actually but I’d rather I didn’t have to. It’s not an easy journey as many aren’t but in our little world this has been one epic unexplained and unresolved experience that has weathered our souls and wearied our bodies. Please try to extend wherever you can to us parents who are hell bent on helping these wonderful, gorgeous, challenging, bright and extraordinary children reach their potential. Be gentle on our varied beliefs on the wtfs- why,what,how,when’s and our stage of grief. We need you to see us, hear our cries but most of all meet our little ones – they are all our children after all.

Nouse

Nicky Nouse. We were saying goodnight to all Canons animals tonight and I am not having it tonight. He refuses to say Mouse. Or Micky Mouse. So I say Mmmmmmmmmmmouse. Nouse. Ok Mummy. Mummy. Mmmmmm. Mmmmmm. Mouse. Nouse. Grrrr. After 10 mins I’m irked. What’s the problem? Is he doing this sort of on purpose? He used to say mouse I’m sure. He can say mmm. Quelle problem? I’m confused – my natural state of affairs – but trying to be instinctive. My instinct says that he might be doing this on purpose. So I say ok Micky is leaving, he gets anxious I’m splitting him off from the rest of the entourage. He says Micky I smile and say mouse and he says nouse. Hmmmm. Rafi pipes up from the top bunk poooooor Canon. Just to add to my inner turmoil lol. So I say that’s it Canon Micky Mouse is off. Canon crys, rafi pleads and then magic… Mouse. Long and drawn out. Determined not to hear the dreaded nouse again and ruin the achievement. I high five Canon. Yay. Tuck him and Mick in bed and run. Now lying in the bath finally sort of relaxing and typing me blog. iPad flashes 5% battery. Course. Kids. So that’s all folks : )….