Tuesday, 1 May 2012

Autism and Bodily Functions, aka The Fun Starts Here!

Trying to train a 12-year-old autistic child not to wet the bed is like the proverbial 'urinating' against the wind. Rather tricky.

When he doesn't even notice or hides what he's done (not because he's ashamed but because he doesn't like the hassle of people in his space as they change the bedlinen!) it's still more tricky.

And when at school they ask the children to name their favourite smells and he, innocently but genuinely, responds with an enthusiastic "poo!" you know you have your work cut out.  Several painful conversations later and he still doesn't understand why he can't go around saying he likes the smell of poo. 

"Ok," I said, eventually, "just don't tell anyone that you like the smell of poo..."

Bless his little cotton socks.

We take him to the loo at 10pm, 3am and between 6am and 7am. He has no drinks after 6.30pm, yet sometimes he still manages to wet the bed (and he doesn't do things by halves, my boy - he really gives it all he's got) after the 6am call. 

Where does it come from? He must have kidneys extraordinaire.

Add to that, last night, my own bladder waking me at 2am, the youngest wanting a cuddle at 4am because she 'had a nightmare' (I'd say she was after a cuddle, more like, which she got before she gleefully went back to her little bunk), my husband's engine-won't-start snore and the knowledge that tonight here we go again...

Or should I say here wee go again.

Other people have Wii. Our house has wee.

Autism. Now thank wee all our God.

Ok, enough of the terrible puns. In all seriousness, I am thankful my son is as able as he is. I know others with autism, or other disabilities, who will always be incontinent and non-verbal. There, but for the grace of God, and all that.

Which leads me to the other thing I've been thinking about today:

When we were in church on Sunday, we witnessed the dedication of our friends' gorgeous little daughter. Her father spoke eloquently and earnestly about the long wait they had before she arrived, and how, when she did, she was perfect. He spoke about how the bible says we are fearfully and wonderfully made (psalm 139). Looking at little Jo, I can understand him thinking she is perfect, and wonderful. She's a lovely little girl.

But it made me think about how we relate to those who are either born different, or become different through illness or injury. No mother expects that her child will be born anything other than perfect, but it happens, and in our days of medical wonder when we can 'save' children from 22 weeks gestation, we have growing numbers of disabled children. 

My son has a brain that will never function 'normally'. He will never be able to live an independent life. He won't be able to get a job, or have a family of his own. At his special school, there are some profoundly disabled children. Many of them will not even survive into adulthood. About four years ago, HRH's classmate passed away. She wasn't the first child in the school to die, or the last, during my son's time in the primary special school.

The hopes and dreams you have when you are expecting a baby are completely shattered when you become mother or father to a severely disabled child. 

But, though I cannot speak for other parents, having HRH in my life, despite all the challenges, has changed me. It has made me a better person. It has made me view all the people I meet differently. I have to think about how I phrase every single little thing that I say to my son, because otherwise he will misunderstand. This has made me examine the reasons for what I want to say. It has made me communicate better. If I see a child 'misbehaving', instead of wondering why the parents have let the child run riot, I wonder if the child has difficulties. I've been on the end of other people's stares far too many times to have anything but sympathy (even in church... eventually we left and went elsewhere). When he was younger, because of the stares and remarks that people made, I ended up buying him a tee-shirt that said 'Keep staring - you might cure my autism. Then we can work on your social skills.' Ouch...

My son's unflinchingly stark view of the world (his brain runs in binary - he can't cope with anything other than a yes or no outcome) has also made me question my values. If it is wrong to kill, he asked once, with his needle-sharperspective, why are there wars? 

"Will the soldiers come and kill me too, Mummy?"

I told him no.

"But why do they kill? Why do people have guns? Who invented guns?"

I'd like to know, too. And despite everything, I wouldn't change a hair on his head. He's amazing.

Remind me I said that when the alarm goes off to wake me at 3 in the morning? Cheers.

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