Sunday, 3 March 2013

Autistic days...

Some days my kids are autistic but some times they have autistic days.
Some days I wake up and I go about my business and my kids have autistic traits...they are picky eaters, or they stim when happy. And I go to bed knowing my kids have autism but life continues as normal.

Then other days like today are autistic days, where you realise just how bad autism can be. Just how disabled your kids are. Just how abnormal life is. Those are days that make me sad. Make me despair. Make me blog.

It starts with the non verbal. When you'd desperately love them to tell you why they are screaming. Cody made lee walk around the block twice yesterday. Screaming at the front door and then walking aimlessly around the road until lee had to carry him home hysterical. Couldn't tell us what he wanted but you can't just ignore it. He's desperate for you to read his mind. And a failure on your part is normally followed by a spew of autism.

Cody slips into autism like he's putting on shoes. Words fail him and it becomes a mass of grunts, urghs, arghs and wails. His body loses all ability to work in a humane fashion and he flails around, squats, head butts and throws himself backwards. Behaviour becomes unpredictable. Scratching, slapping, kicking become usual expressions of frustration to him and objects get flung across rooms, down stairs, up walls, on floors as deliberate acts of destruction. And this can last for days.

I have written very matter of fact there but it's disturbing to watch. Yesterday night and into this morning I got to the point where I had to walk away. I said to lee "I can't bare it when he shows me just how autistic he really is." because that's just what happens.

You're floating along in a stream of  'acceptance' and you've got this in the bag. You've got a handle on the disabilities until Jesse spends the day endlessly spinning round in circles or demanding you stand outside in the snow and push her on a swing for 3 hours to meet her sensory needs. Until Cody throws 3 bottles of milk followed by a 2 pint carton down your stairs because you dared to offer him some. When you don't hear a single recognisable word pass their lips for an entire day or he strips off  in public. Those are the days that throw you off course. Those are days when you realise nothing is as it should be.

Sometimes I just don't realise how "bad" they are until they give it to me with both barrels. Those are the days I wish others were watching then maybe it wouldn't be a 'phase' or assurances that 'they'll grow out of it' because underneath the cute rocking and the impressive echolaic skills is the real autism. The severe autism, the low functioning autism, the reason their in a special school autism, the carer not a parent autism, the make your heart cry autism.

Those are my autistic days....


Oya's Daughter said...

Yes. I feel you there. So very feel you. Those are the grim days. But there is tomorrow. Always tomorrow.

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