Sunday, 22 April 2012

My Life With Autism.

Last July, we published blogs featuring autobiographical accounts sent to us by supporters who very kindly agreed to share their experiences.

As part of Autism Awareness Month we are continuing this series of blogs - below Cara gives us a great insight into what a typical day is like for her as a parent of an autistic daughter: 

"Here goes, a typical day:

Morning usually begins with a struggle to get R down the stairs, she has no sense of danger so will swing holding my hand and try and jump, how we haven't been injured yet I don't know. Into the living room, she heads for 'her corner' looking for her juice. It has to be in her avent baby bottle, measured out at 9 mls or else she will throw it at me, then toast, which is always examined and sniffed before eaten.

(Weekends are a nightmare for getting her dressed, she only likes to wear school clothes as this is what she wears 5 days a week so getting her to understand that weekends are different is a losing battle, so its always a compromise, black straight leg bottoms and a t shirt, no pretty girly things for her she won't tolerate it, even went to a wedding reception with pj's on because we don't get undressed at night to wear other clothes)

On school days we leave it as late as possible to dress her as she doesn't do waiting so its a perfectly timed routine and if transport is late we have major anxieties and meltdown so every morning I am anxious till her transport arrives...

Home time: again juice has to be ready, its the first thing she looks for, then the battle to get her school clothes off and put her all in one zip up the back sleepsuit on so she doesn't play in her poo and smear, we have had a good few incidents.

Now for dinner... PASTA, RED PASTA, PIZZA, RED PIZZA, SAUGAGES WITH RED SAUCE, see the pattern emerging?! Red food, and if its not red food then tomato sauce is a lifesaver!

Bedtime routine: bath, always a struggle to get her into it, she loves her bath once in it but hates to be dry then feel wet, sensory I guess. Once in she's a wee fish, head under water, lots of interaction and giggling, then the same process to get her out of the bath, she hates to feel wet and have to be dried so it takes 2 of us to prize her out the bath. Once dried its almost bedtime, melatonin next then the mad half hour of running, screaming, spinning bouncing...then eventually she will say one of her few words "BED".

She knows herself when she's tired, so now the nightshift begins. As she is a danger to herself I have to sleep in with her, she will wake at least twice through the night, most nights she won't sleep past 3-4 am.

Then there's her smile and all the things she achieves, the small things most wouldn't even notice their kids doing, the beautiful sound of her little voice the twinkle in her cheeky wee eyes and the way she learns and works things out, she is just the most fascinating wee girl I have ever met, and she's mine."

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