Some of you will know that my son has a disability.
It’s called Septo-Optic Dysplasia – S.O.D. in short. It affects his vision which is very poor, his development which is at the crawling/toddling babbling stage despite him being 10, and it means that many hormones that should be produced are not so need supplementation.
Click to view slideshow.Journeys out are often met by pitying looks, stares and, occasionally, inappropriate comments.
Now, after ten years we weather this sort of behaviour, seeing it as life outside the bubble. That is, until you live someone’s life, you have no idea what it entails. I admit that before Ashley I was a starer, a pityer and an occasionally inappropriate commenter.
We have learned to conceal our distaste for all these things and now actively work to bring folk into our world.
Being the parent of a child with a disability is hard, let’s not fudge the issue.
Night time interruptions to our sleep have a telling effect on us both.
He’s doubly incontinent, he went into early puberty which we have now delayed until he’s 11, he has seizures, psoriasis, malformed hips and feet, crossed eyes and a list of conditions I won’t bore you with.
It’s not all bad though. Ashley has a sparkling personality. He’s a comic, loves music and busts a move on the dance floor.
He has a legion of doting women who spoil him rotten whenever they see him.
His sisters (17,15 and 8) adore him, as do we.
We also act as his advocates, speaking for him and translating whenever necessary so that he gets a fair deal. Every benefit to which he is entitled we have applied for and attend updates and reviews with him and on his behalf.
His disability is expensive. Although we receive grants and benefits, many’s the time we’ve found ourselves out of pocket. Our washing machine is overworked as night linen needs washing most days. He is growing faster than other kids so clothes are now at a Small Adult size.
But there are upsides. He has made us grow with him and “problems” are now dealt with in a functional non-emotional way. I’ve always been a stroppy bugger but Gill has blossomed as a Tiger Mum who brooks no nonsense from medicos, social workers and educators. Similarly, the girls are all the more mature for living with him and have a well grounded view of disability.
So, if you find yourself gawping at a disabled person, what can you do?
First, don’t see the disability. See the person. It’s just one facet of their personality, which is as varied as anyone else you might meet.
Think before you speak. Treat the disable person, be they a child or adult, as a person.
Maybe just as important, is the need to treat us, the carers, as normal people – not heroes, not as angels, just as Mums and Dads trying to get through the day without screaming (too much).
Image may be NSFW.
Clik here to view.
Image may be NSFW.Clik here to view.
