MAKING WAVES WITH THE GENTLE RIPPLES OF INCLUSION

MAKING WAVES WITH THE GENTLE RIPPLES OF INCLUSION…..

It doesn’t take a genius to work out that something whisked away and hidden is something feared. Especially if nobody knows anything about it and it has a big, curious label attached to it.

Just 100 years ago, babies with Down’s syndrome were exactly that. Medics horrified at the birth of a baby with an extra chromosome told the new parents to take their child to an institution. Forget about them and try again. Having a child with a disability brought shame on a family and it wasn’t talked about or even admitted.

Things had improved slightly when I was growing up. Not much, but at least children with disabilities more often lived with their families. Seeing someone with a disability was still a very rare thing. I certainly didn’t know anybody disabled, there was nobody at school who needed one to one support, there was nobody at my dancing or drama school who had additional needs, nobody at my brothers’ Boys Brigade or football.

The only memory I have of “difference” was seeing groups of learning disabled people in groups at outings to the beach. All out with their carers in one hit, a special day out, sprawled across the promenade eating ice creams and I am ok admitting I found it a little awkward. Not wanting to look like I was looking, not wanting to look like i WASNT looking and trying to act like it wasn’t a big deal, because it wasn’t – yet somehow it was, because it was out of the ordinary.

When I was driven to hospital to have my daughter,  by planned Caesarian, I was suddenly made very anxious by the date of birth fate had given her. She was due in July but circumstances had brought her birthday forward to the end of June, and then again by a few more days. The date had meaning, really significant meaning, but I couldn’t for the life of me remember what or why. The radio mentioned that it was the anniversary of Michael Jackson’s death. And that’s when it clicked. I remembered watching the news from bed, shortly after ending a previous pregnancy and feeling heartbroken. We had been told the baby was very sick, would most likely be stillborn or, at best, live for a week or so. The date, ironically, had also been the due date of the pregnancy before……that ended in a miscarriage.

So suddenly my calmness was replaced with deep anxiety. I don’t usually believe in these things, but it was hard to ignore the nagging in my head.

Having a planned c section is very civilised. Very. But on the other side of that, there is no adrenaline, no endorphins, no sense of urgency, it’s all very functional and considered and so with that comes a heightened sense of awareness of what is going on, which makes it very daunting. I had such clarity and with the realisation of the date, I was quite nervous.

With all this going though my mind it was a wonderful moment to walk into theatre, pillow under my arm, and be greeted with a big, beaming, familiar smile decked out in scrubs and a big “hello caroline! It’s me!” and then she told me who she was. It was a mum of one of the children in Seb’s reception class who I had no idea was a midwife.

Instantly I was put at ease. I knew whatever I faced she would be honest with me and I trusted her. Vibrant and positive, she is one of the happiest and positive people I see on the school run and brightens up the dullest of drop offs. Everything went well and I really enjoyed her coming to meet my new arrival officially a few hours later back in my ward. I think she thinks I’m a bit nuts now as she is very special to me for sharing that experience, but, to her, it’s all in a days work! It’s only happened to me three times, but for her it happens daily!

Last week she came up to me in the playground to tell me some news. She was dying to tell me and was excitedly animated. She told me that she had delivered a baby with downs. The lady who had the baby had known the diagnosis whilst pregnant and was really ok with it, but obviously her and her family had a lot to get their heads round. She told me how she had gushed to the family about Seb, how he was in her daughters class, how well he is doing at school and what a big, ball of energy and personality he is.

I couldn’t help feeling tearful. For millions of reasons. Pride, obviously. But also joy that this mum had this. She had someone who wasn’t talking from a text book or medical journal. It wasn’t someone saying what they *thought* they should be saying or what they had been told to say. It wasn’t awkward or forced. It wasn’t about a friend of a friend of a friend. Or someone who is now in their 40s. Or a pitying piece of compensation.

It was real. It was natural. It was up to days. And it was thanks to inclusion. Seeing Seb at school and football, doing everyday things and basically seeing beyond a label and seeing Seb as Seb.

I walked away on air and a part of me felt pensive and a bit sad as I wished I had had that same experience at birth and had this lovely lady as my midwife with Seb. We would have set off on a slightly different footing. But then again, she wouldn’t have met him yet, would she?

Amazing stuff 🙂

DECEMBER 2014