Disability is not a box to be ticked it’s a day to day reality

20 May

photo(12)When I wrote my CV (for the first time in about 20 years) I added the line that since having a baby who is deaf, disability is no longer a box to be ticked by various organisations but a day to day reality. A colleague pulled me up on it, probably quite rightly, commenting that any future employer will read that to mean that the deaf issue impacts on me every day. It does, but not in a bad way. I actually meant it as a positive.

Pre diagnosis I sat on various boards and committees all of whom had to provide various disabled facilities. I was always supportive but it never seemed real until I had to deal with a disability of my own and began to appreciate the little person signing in the corner of TV programmes, the sign language interpreter at the Festival, the hearing loop at the theatre, the council directive that schools have to accommodate children with disabilities and will therefore address any acoustics issues.

Far from dominating my life in a bad way the deaf diagnosis has enhanced it. When things are bad it puts things in perspective but recently when my mother was ill and the impact of redundancy on bills was preying on my mind I was even happier to realise how far the deaf issue has moved down my list of worries.  My little boy is getting on so well and is so happy in himself that he’s stopped being a priority and is just another member of the family. He’s started singing the ‘more to eat, more to drink song’ complete with signs, not to mention hurling himself on the floor and warbling ‘row, row, row the boat’ at every available opportunity.

In terms of day to development I can’t see any difference between him and his friends other than the two little hearing aids hooked round his ears.  That can cause anxiety at soft play. Whereas most parents are worrying about the loss of a sock we are worrying about the loss of something substantially more expensive but we have the advantage of his two big sisters to chase him round the slides and ball pools like guardian angels in skinny jeans and Hollister hoodies.

It was my younger daughter’s 8th birthday party last week. The 10 year old brought out a cake and when she blew out the candle urged her to make a wish then tried to guess what she’d wished for. The 10 year old’s first guess was that she’d wished for our little boy not to be deaf.  She hadn’t.  The 8 year old had wished that my father hadn’t died in the car crash and could come back to life.  I was astonished by their selflessness. I was expecting her to wish for a puppy or an iPad. Both as unlikely as my father coming back to life or our little boy not being deaf.  I’d still rather he weren’t deaf too but as long as he’s happy I’m happy and I have never seen a happier child. Disability may be a day to day reality but it’s a reality we’re all coping with pretty well.

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8 Responses to “Disability is not a box to be ticked it’s a day to day reality”

  1. Alison Miles May 20, 2013 at 3:17 pm #

    Amazing news, so lovely to hear that his speech is coming on! Xx

    • sleepless in silence in suburbia May 20, 2013 at 4:18 pm #

      That’s not to say I haven’t sent the entire deaf community in Edinburgh into a flat spin because we don’t get the early nursery place you did! All that for a later slightly more angst ridden post. Love your support and love your blog. I shared it on my Facebook page last time.

      • Alison Miles May 22, 2013 at 5:23 pm #

        Thanks.x
        I know that living in London we get fantastic support and for that I’m ever grateful both that it’s here and that we didn’t do the moving out of London before we had kids thing. Funny how fate works sometimes.

  2. Kerry Ashton May 20, 2013 at 3:50 pm #

    Lovely update and a good reminder to stay positive for my little boy who is also a cheerful contented little 6 month old. I will be even more happy when he starts sleeping lol

    • sleepless in silence in suburbia May 20, 2013 at 4:20 pm #

      They’re so happy and know no different, I think if we project our anxieties on to them they’ll become anxious too. Far better to roll with the punches! Thanks for your support. It means a lot to know there are people out there in similar situations and dealing with it in a similar way.

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