When I was 12 weeks pregnant, I was given a one in five chance of our baby having Down’s Syndrome, and then I “just knew.” My first reaction was joy that my baby was alive, the second relief he didn’t have any life limiting conditions, or conditions incompatible with life. My third was that life was going to be a bit different from now on, and secretly that was both a little bit daunting and a little bit exciting.
Then the doctor spoke: his voice apologetic and careful, he asked if I’d like to be referred for further testing with the option of a termination if our baby did have Down’s Syndrome. When I refused, he shook my hand and watched us go. As we were leaving the department, he came out after us, gently touched my arm and asked me one more time.
He had challenged my choice, and with that came a heavy sadness. It simply hadn’t occurred to me that he would view Down’s Syndrome as a negative thing. Several friends suggested testing, and if our baby did have Down’s Syndrome, a termination would be the kindest way forwards... for our other two young children, for the load on the NHS, for our sanity. It was depressing: It was as if people saw our baby as a monster that needed “dealing with.”
Doctors were very subdued with me. Did they feel sorry for me, or were they subconsciously expressing their disapproval at me for not accepting diagnostic screening tests? Maybe I’d imagined it. At 32 weeks I was informed I could still have diagnostic testing and, if my baby did have Down’s Syndrome, I could terminate right up to birth if I wished. The reason being that Down’s Syndrome counts as a “severe disability.”
My personal understanding and experience of Down’s Syndrome wasn’t one which included the words “severe disability.” It included “different,” “challenges” and “unknown,” but I didn’t consider it to be “incompatible with life,” a life filled with pain or fear, or a lack of ability to enjoy life.
We all age, but many of us don’t complete our lives when we would wish to. Many of us die too early, many of us need extra care for some period of our lives, some of us live on well into the later years and then need gentle on going care… some of us choose to live a life of crime, or drink ourselves to death. One thing we all have in common, we all expect a degree of care from others, if and when we become unable to care for ourselves.
None of us can predict anything to do with either our, or our children’s futures. Pathways can suddenly turn, very cruelly or unexpectedly, which has happened to two wonderful families I know. Suddenly we’re the lucky ones.
If you were to be told your child would have speech difficulties (as ours has), might need a heart operation (as ours did, not all do), may learn to walk late (ours was two and a half and that was with a lot of coaxing), or that you may need to feed your child using a tube down their nose, (which we did for a short time), or may need extra support at school (which ours does)… you may throw up your hands in horror and say, “that’s what I’m talking about! I don’t want that for my child!” or “I just don’t want that for my family. I couldn’t cope with that.” All of these things have occurred to my friends children too. Their “normal” children have needed heart operations, to be tube fed, to need on going speech and language therapy, and one to one support at school. I personally have needed expensive cancer treatment.
But this isn’t about that. What is it about having a “differently abled” person in the family, school or workplace that’s such a bad thing? Is it the extra care they may need? Is it fear for their health, well-being or quality of life? Is it all a big inconvenience and worry? Is it a fear of not coping? Is it just wanting more for our children? What is “more”? What does “more” look like?
I told my nine and eight year olds about Sally Phillips’ Documentary “A World Without Down’s Syndrome,” and explained about the screening program and one of the potential outcomes. Our eight year old looked confused, and our nine year old leapt out of her chair and in a raised voice with balled fists she said, “Why would anyone want to get rid of people with Down’s Syndrome? I don’t understand why? Tell me why!”
Something I’ve learnt through having a child with Down’s Syndrome, and from meeting families with children with other disabilities too, is that life very much goes on. It properly goes on.
Our son with Down’s Syndrome is “different” and it’s hard to explain how. His body moves slightly differently, his facial expressions are more pronounced, he learns things in a slightly different way and more slowly, but he still learns. He’s more advanced than his peers in some ways, and delayed in others. He’s five years old and walks, runs, jumps, climbs trees, plays with nerf guns, eats properly with a knife and fork, negotiates, problem solves, argues, sleeps like a log, likes spicy food, makes suggestions for days out, rides a bike with stabilizers, reads and writes a bit, loves helping, has tantrums and refuses to co-operate at times… it’s all rather boringly normal in many ways. He needs support in others.
Sometimes it seems as if he’s part of a movie rolling in slow motion. I’ve learnt so much more about how humans develop and learn. I find it utterly fascinating.
To us the key thing is that he’s perfectly happy and is a valid and equal member of our family. He makes us laugh from the bottom of our boots, as well as cry with frustration… just as his brother and sister do. He’s the centre of our world, as all our children are, but our lives don’t revolve around him. My husband and I have both started businesses since he was born, and we do everything that all families with children do.
All children have different abilities and it took a while to work out what our boy needed. Once we’d addressed his diet (partly normal for many children with Down’s Syndrome, and mainly to do with my family history of food intolerances) and his sensory processing needs, (which again he must get from me), he started to really thrive.
All the hard bits have been like a blip in time. They’re there and then they’re gone again.
I do feel as if I’ve been stretched and challenged. But by having children full stop. To be challenged and to have to look inside oneself and work at things you don’t find easy, teaches you many things. It teaches you empathy and patience. It changes your focus on life and shows you that you can achieve more than you thought. It teaches you to appreciate and indeed love a view you haven’t seen before. It teaches you to slow down and with that, you see the most amazing things. Your world fills with a color you didn’t realize existed.
Until you’ve lived in a certain situation, or with a child or adult with Down’s Syndrome, you can’t really imagine what it’s like. You project what you imagine it to be like. Fear of the unknown will almost certainly play a part. Just know that there are many, many families living in a way you perceive to be a nightmare. But as a wise and experienced friend of mine says, ‘there are far worse things that can happen than having a disabled child’. Families adapt and are genuinely and properly enjoying life. They’re not pretending to, or saying so for your sake, nor to convince you…
They genuinely are.
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