Carers’ voices: Annie’s blog on the ‘Don’t Screen Us Out’ campaign’

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This New Year blog is by Annie who talks about the ‘Don’t Screen Us Out Campaign‘ which has particular salience for her and her life with her son Tom.

Annie’s Blog

Having had a tricky Christmas and New Year – the washing machine died on me (again!) on Christmas Eve…and when you have my Thomas as a son, a washing machine is an absolute prerequisite to life and, more importantly, family health – I got thinking about a campaign that was talked a lot about last year.

The ‘Don’t Screen Us Out’ Campaign came about as a result of a new, ‘improved’ test for Down Syndrome. Tom doesn’t have Down Syndrome; he has a rare chromo condition, linked to Di George Syndrome. The condition wasn’t ‘discovered’ until seven years ago, once the Human Genome Project started indicating all these previously un-diagnosable conditions. Until he was fifteen, Tom was a SWAN, a Syndrome Without A Name. Even now I am told that he almost certainly has another genetic abnormality too – the one he has doesn’t explain all of his problems. They just haven’t yet discovered the other one.

But, oh, ‘Don’t Screen Us Out’. Those words! That campaign! I don’t even know how I feel about it. A real case of ‘yes but, no but’.

I consciously chose not to screen Tom out. When, at my 20 week scan, based on what the sonographer could see of Tom’s brain and foetal body size, I was given the opportunity – almost encouraged – to abort, I chose not to. And every time it was subsequently suggested, which was right up to about the 34 week mark, I still chose not to. And I have never regretted that decision.

Which doesn’t mean that it has been easy. When other parents say that their disabled child has given them nothing but delight – I can’t say that. Tom gives me days, nights, weeks of anxiety and worry. There have been so many times – daily occasions – when I just want to Walk. When I know, with every cell of my body, that I can’t do this anymore. That I am too tired. Too stressed. Too frustrated.

I see the effect that Tom has on his brother. My 15 year old may love his older brother – and I think he does – but I know for absolute  certain that he wishes that Tom were other than he is. That he had a ‘normal’ older brother. When we talked about the ‘Don’t Screen Me Out’ campaign, he was absolutely clear where his views lay; he would not wish Complex Needs on anyone. Not on the person. Not on the family. I didn’t ask him what he thought society should do or feel – that is, perhaps, a step of thought too much for a fifteen year old.

So, the lack of a washing machine for a week has got me thinking about chromosomal abnormalities. And, actually, realising that they all – Down Syndrome or Not-Down Syndrome – they seem to have more in common than in difference. Many seem to be on a spectrum. Tom’s condition’s spectrum is on scale of 1 to 6. Tom is 5.9. I know less about Down Syndrome but I know lots of children and young adults with it. The kids I know range from the sixteen year old girl who goes to mainstream school, is a talented dancer and is relatively independent to a nineteen year old boy who is non-verbal, largely non-mobile and will never have any level of independence.

The huge problem is, of course, that when a child with a chromo condition is born, no-one really knows what the prognosis is. If a test could tell you the level of function expected, it would all be a lot easier. All we were told with Tom was that he had brain damage. There was no way of knowing the level of damage – it could be so mild that nothing would be noticeable or it could be severe and result in profound and multiple learning difficulties. What we have, of course, is somewhere in between.

Would I screen Tom out, given the chance again? Well, of course I wouldn’t. I absolutely and completely wouldn’t. Would he screen himself out? That I don’t know. No, probably not. Would any of us choose not to be born? Yes, hormonal teenagers may scream that they never asked to be born but, actually, it is a step of the imagination too far for most of us to comprehend that scenario. That we would be deliberately destroyed because of a disability.

And that, of course, is the point. Deliberately destroyed because of a disability. Not destroyed because of an unwanted pregnancy. Not destroyed because the pregnancy came at the wrong time. But destroyed because the baby isn’t perfect. He or she doesn’t deserve to live because of an extra or a damaged chromosome.

Set against that is the acknowledgement that I think that many – most – parents who have children with special needs would agree with; we’d rather our children didn’t have disabilities. I listen to some of the people who are most against the new screening techniques and wonder what their answers would be if they were straightforwardly asked ‘would you prefer your child to be disabled or not disabled? Are you potentially prepared to spend the rest of your life as a carer? If science could take the process back still further than pregnancy so that the question so that potential termination wasn’t the issue but the ability to choose, when getting pregnant, whether you wanted a child with a chromosomal condition or one without? To be a life-long carer or not? I know which I would choose!

But. But. But! But deliberately stopping children like Thomas from being born? Caring for Thomas is exhausting and has affected my life, my relationships and pretty well everything that was central to who I was. I lost my career – the very first time I put him in childcare, aged a few months old, I was recalled within fifteen minutes when he had a seizure. It was at that moment that I realised that my career was Down the Swannee and that my life would be taking a very different path than planned. The proportion of parents of children with severe disabilities who manage to stay together is woefully small. But, oh my goodness, the wonder that Tom has brought to my life is immense. His whole body full of happiness and the way in which he dances around the room when he makes me laugh – many, many times a day – is something that I could never give up. His sensitivity to other people. His passion for Musical Theatre. The way he sits on my lap – all 5’10” of him! The joy he felt when his school bus escort gave him a My Little Pony balloon for his 18th Birthday. So, no, how could I screen that out?

It has got to come down to information. If parents are going to know if advance that their child will be severely disabled, they need as much information as is available. They mustn’t be led to think that their lives will stay the same or be easy. But they need to know the joy that chromo kids can bring – along with the sadnesses, the frustrations, the exhaustion. Bit like any child really!

1 thought on “Carers’ voices: Annie’s blog on the ‘Don’t Screen Us Out’ campaign’”

  1. Thank you Annie for your ‘caregiving blog’.
    I am also – or I was until the first week of this month – a carer for my husband who suffered from enduring mental health issues: he suddenly died whilst out for a stroll.
    Our eldest child, Elizabeth was also a sufferer, taking her own life at the age of thirty three. Our youngest son was also a sufferer, but – miraculously – at the age of fifty began to recover; he is now living independently, teaching and studying. Fantastic.
    Officially I am no longer a carer, but have not been able to shake-off a role ‘inhabited’ for over forty-eight years.
    I must now begin a ‘new’ life.

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