Life On The Spectrum, A Parent’s Perspective

You may, or may not know that I (Kate) write as a Huffington Post blogger. One of my most popular and shared posts was the one below. It’s a heart on the sleeve moment, and I hope it sheds some light on living with Autism.
Have you ever watched a horror film and been so frightened that you had to switch it off?
Have you ever walked past a building site and heard the machine screeching like fingernails down a blackboard? Did you hurry out of the way or cover your ears?

Have you ever been so emotional that you’ve been unable to speak, or express exactly how you feel?
Yes, me too… now and again…
However, my little rascals deal with that on a daily basis.
ASD brings difficulties that I never imagined I would need to start to understand. I can get by in daily life, with a little nervousness thrown in from time to time that potentially pushes my personal fear boundaries, however, I know that it’s scientifically proven that I have created my own fears and nervousness. It’s a state of mind for me, and one that I can give myself a subconscious slap across the head for.
My three little rascals, however, don’t understand what, why or where. This poses more difficulties than enough.
I used to send my eldest into his mainstream school five days out of seven. He was sobbing great big tears. Every day. I would collect him and he would be sobbing great big tears. He didn’t realise that I was returning to collect him. He didn’t understand that the same thing happened Monday to Friday. That I would bring him home for tea each day.
Then there was the time when he was flapping in the dinner hall. The dinner hall was very busy and very noisy. It was his way of self regulating. For me I guess I twist my hair, for others it may be swinging a crossed leg when you’re sitting down, or chewing on a pen lid. He flaps. The dinner nanny, quite innocently whispered (with a smile on her face- no malice at all, I hasten to add!) “stop doing that, your hands will drop off!”. I can’t even find the word to explain what he went through. He tried not to do it, pulling at his hands, crying until he couldn’t breathe.
My heart has twisted time and time again with my eldest as we fight our way through daily life that he is expected to conform to.
No, he wouldn’t go swimming, because it’s far to echoey for him to deal with – he covered his ears as soon as he was in the area. No. He wouldn’t go to the party that all of his class was invited to because he couldn’t bear to be detached from me and I would have to hold him in my arms like a sleeping two year old. No, he didn’t want to go on the bus because every time the bus stopped, someone moved and got off, or even worse someone extra would get on.
No. He couldn’t cope. No words of reasoning would help. He couldn’t understand.
“My tummy hurts” meant he had a headache or his leg was hurting, or his shoe was too tight, or he’d fallen over, or he had earache… or indeed, his tummy was hurting.
He learnt what a car was and proceeded to tell us, on a journey lasting for three hours, every time he saw a car. This was an achievement.
But, more than anything, we learnt that our lives had changed. We learnt that we had to assess our every move when he was with us. We found out about places that he couldn’t tolerate. We learnt that the lights buzzed to loud in one restaurant, that the tables were too close together in another.
We found shops that were too dark for him, checkouts that were too loud. He developed a mental torment when it came to hospitals, and as we were there so often, it posed more than a few problems.
Now that we have another two children, both of whom are diagnosed ASD too, although all three are totally different from each other. We have to decipher all three. Each of them have their own likes, dislikes and triggers
Bit by bit we picked through them and adapted our lives significantly. We discovered that we can’t just visit places on the spur of the moment, we can’t accept every party invitation, we can’t ‘just pop’ to the shops.
It’s quite heartbreaking when we (rarely) manage to get out as a couple, we see a family enjoying a Sunday lunch or evening meal together…we can’t.
We can’t decorate our boys’ rooms in their favourite characters, or have toys in there – it’s too busy for them and overstimulation goes out of control.
Christmas is misunderstood. Our children don’t understand why there’s a tree in the house, it doesn’t matter how many times you tell them about the tradition. They’re also terrified of Santa. So I have to tell them (during the long, long night before Christmas) that I met up with Santa because he told me he needed to pass the gifts on as he was running late.
It’s exhausting.
As a parent, all you want is to enjoy the family things- the holidays, meals out, birthday parties, Christmas.
As a parent, it’s hard to be dressing your child when they’re eight, entering your sixth year of toilet training, getting up at least ten times during the night, cooking the same food every night because it’s all your child will tolerate. It’s hard to be one step ahead of your child when you’re at the dentist, Dr, physiotherapist, speech therapist, occupational therapist, consultant paediatrician, practice nurse and all the extras thrown in for good measure. It’s hard to remember the ear defenders, PECS file, their cuddly, chewy tube, glasses, medication when you just want to pop to the park for an hour.
It’s exhausting. Now times that by three and you’ve got our home life!

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