A collection of random musings and musical meanderings

Downs Syndrome – Grateful and Scared. Changes Over the Last 60 years.

Downs Syndrome – Grateful and Scared. Changes Over the Last 60 years.

The photograph above is of our boy at the beach. He’s wearing his Granddad’s old cap and giving his standard camera pose: a cheeky smile that says virtually everything about him you would want to know. It’s pretty obvious he has Downs Syndrome. The picture looks like it was taken back in the mid-1900s (probably the old flat cap) but was actually taken on a fresh Spring day in April 2014.

Sadly, the photograph’s impression is something of a subtle anachronism. It would have been rare for a child with Downs Syndrome to be posing smiley-faced for his dad back in the 1950s in the UK. Children born with Downs Syndrome were routinely institutionalised at birth, given the same life-long accommodation as the ‘insane’ (a truly horrible term). This was the standard advice given by doctors at the time. They were considered worthless and given up to strangers so that they could be shut away and forgotten forever. By today’s standards it was a terrible and shocking thing to do. You hear of the horror stories in these places where human beings with Downs Syndrome being held in shackles, forced to wear nappies into their late teens. This hiding away, brushing under the carpet of respectability continued well into the 1980s, when they were gradually moved into the community, brought about by public awareness and outcry. Up until the early 1980s, doctors routinely still refused to give life-saving heart surgery for children with Downs Syndrome.

Back in the 1950s, the life expectancy of children with Downs Syndrome was about 15 years. Now that the shameful practice of locking them away has virtually ceased in the West, their average life expectancy is around 60 years, and growing as care for them is improving. In the UK, children with Downs Syndrome now have the opportunity to go to mainstream school if their parents and carers request it. Now, there are some very good ‘Special Needs’ schools that include excellent care and support for children with learning disabilities. Our son goes to one of these schools and that is our choice for him. At around 7 years old, he was already being left behind educationally and physically by his peers at his mainstream school. For example, he just wanted to kick a ball while his mates wanted to play football by the rules. Where he is now is the best of both worlds for him.

We have come across the occasional old-way of thinking that comes from a lack of understanding of how children like our son work. One teacher accused him of calling someone he was playing with a ‘white bitch’, bearing in mind he was only 10 years old at the time! This was reported back to my wife and I and we were astonished – it’s definitely not the language he would have heard at home. Having the power of logical reasoning, which the reporting member of staff obviously didn’t have, and knowing that our boy has a common Downs Syndrome trait of a speech impediment, we quick realised that he was actually saying ‘rubbish’ (sounding like, ‘wub bidge‘). One of a few misunderstandings we have had to deal with over the last couple of years.

Our boy has a very narrow view of our world, a lot of it learned from his favourite YouTube programmes like Some Mother Do ‘Ave ‘Em. He came with me to a local pharmacy section in our nearest Tesco Store recently and no one was behind the counter to serve us. He promptly began banging on the counter-top shouting at the top of his voice. ‘Shop! Shop!’ I found it very difficult to keep a straight face. Who says that these days? He could only have got that from one of his dated Frank Spencer episodes.

I am very grateful for where we are nowadays. Our boy is still stared at in shops, but his Down Syndrome is mostly accepted. Maybe it’s because he still looks cute. He is certainly no angel; he’s just like any other boy. People have a lot of trouble getting past the Down Syndrome and seeing the boy. I often hear people say, ‘they’re so loving, aren’t they’, a well meaning, sentimental and erroneous blanket expression, which I hate with a passion. What happens when he’s 16, spotty, non-cute and gruff? Not so cute and lovely then, eh.

Listening to mums and dads of adults with Downs Syndrome I hear really heartbreaking stories of their difficulties, their constant battles with social workers and local government departments, trying to find jobs and activities that their grown-up children can do. Once they are out of the education system and into their twenties they fall into a great void of services, help and generally interesting and appropriate things to do. They are pushed more and more into independent living, where I have heard of terrifying failings in their care. It is very scary out there once they have left school, both for parents and the child. As the parents grow older there is the anxiety wondering who will bother to look out for their children’s best interests once they are gone. I’ve had sleepless nights already!

Zac in BathHaving said all of that, I’m so, so glad we are here and now rather than where we were just 30 years ago. I want my son to know how much we love him, just like the way we love his siblings, and like any parent, we want our children to be safe, happy and loved in the future too.

When I look again at that photograph and that cheeky smile, how can I have nothing but hope for him.

For more information and help regarding Downs Syndrome click here.

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