Saturday, February 21, 2009

Not everyone's truth is the same

If there's one thing guaranteed to raise my blood pressure it's the tale of yet another mother who's selflessly decided to keep and look after her disabled child and - give them a medal, someone - now thinks that child is the best thing since sliced bread and writes their disability-enhanced life story in the Mail or The Guardian. I'm pretty sure that usually these stories have their hearts in the right place - showing the population at large that children and people with disabilities are actually all individuals just like the rest of us is good. But still they make my blood boil...

All too often there's a tendency to over-egg the 'Hey, it's a great life' pudding, and I find myself wanting to write in and say, actually, it's not always fun bringing up a disabled child. I love my learning-disabled son to bits, not just because I'm his mum but because there are lots of very lovable things about him - he's enthusiastic, affectionate, polite, funny and often kind. He offers insults and compliments with the same disarming honesty because he doesn't know how else to be but straight with you. Now that I'm not faced with always having to be at his command I see how truly lovely he is and I'm happy when we meet with him at the weekends.

But bringing up a disabled child isn't always fun so why give people the impression that it is? It's not fun if yours is the one who never stops moving, who wants entertaining all day after a sleepless night, when you're dead on your feet and just want to nap. When you have the one who can't walk but is becoming too heavy to carry up to bed at night. When you're a dad needing to take out your un-toilet-trained twelve year old girl. When their temper's uncertain and you're passing a group of young lads who might be okay but equally might rise to the bait of your youngster's anxiety-fueled aggro. When school's cancelled at the last minute and you're suddenly panic-stricken, wondering how to fill another day. Or worse, when he hates the respite place and you just can't bring yourself to send him for that overnight stay even tho' you know that another night without peace and quiet is going to put a load more stress on you and the rest of the family.

How is any of that fun? Is it me? Am I missing something? In our case, my daughter had depression and IBS for the two years before her big brother moved out. How do you put positive spin on that? Despite his overall loveliness, Buster was, as a child, iron-willed and constantly demanding and, as a young person, capable of some pretty bad/physical/dangerous behaviour.

But quite apart from all that, what sort of effect do these writers have on people who are struggling with their lives? The ones who don't always see the sunny side because life's so flippin' hard? Just like talking about someone battling cancer and defeating it can make others who 'battled ' it without success feel worse about themselves (obviously didn't battle hard enough!), those articles can make good, caring people feel like bad parents. 'Hey, you just have to love enough and have a sunny enough disposition and you'll be fine. I managed it, why can't you?' - that's what they seem to be saying.

Makes me cross. Can you tell??

7 comments:

KAREN said...

I'm totally with you there. A close friend of mine has a severely autistic daughter and, despite the obvious love she has for her, she suffered a breakdown this year from the strain of looking after her, coupled with the constant battle with social services to get the right sort of help.

Now, when her daughter's in respite care for two nights a week once a month, she feels a sense of relief which is immediately outweighed by a sense of guilt for feeling relieved! That's her truth.

Penny said...

Me too, Kath. In fact, I get pretty fed up with people who write Chirpily About Children at all. Or 'kids' as they usually seem to call them...

SpiralSkies said...

I wonder whether the sad truth is that, if one moans/weeps/has a total breakdown due to the sheer bloody awfulness of whichever crisis they're living through, no one wants to listen.

Casdok said...

No its not always fun. And it seems there is just one battle after another. Wears you down.

Honeysuckle said...

Karen - I'm so sorry to hear about your friend. Sadly, all too often social services seem to add to the problem rather than helping (altho' I must say we've been pretty lucky with them locally). We knew one couple where both parents had breakdowns and then, when they were better, the child was returned to exactly the same situation as before...

Penny - hate that expression 'kids'. We're just getting old, that's what it is!

Spiral Skies - that's right. Sad, isn't it?

Casdok - you sound pretty down. I hope things get sorted for you and C soon.

Maddie Moon said...

Found myself nodding in agreement to all of this, Honeysuckle.

You should write an article about it.

Honeysuckle said...

Hi Maddie - nice to see you again!