On the run-up to World Down Syndrome Day I’ve been sharing photos on the theme of quality of life. Why?
I think often the first and biggest worry for any parent when they receive the diagnosis is: ‘What quality of life can this child possibly have?’ ‘What quality of life can we have as a family?’ It’s something that ‘others’- be they healthcare professionals, family, friends, or the general population – can be very pessimistic about. But dig around a bit, take the time to find the opinions of those who have actual, personal experience of living with a person with Down’s, and you will uncover a very different story.
Sadly, this is something you have far less opportunity to do if you receive the diagnosis prenatally. But go out into town with a child with Down’s, and the opinions will come to you – or at least that was my experience. Once Freddie was old enough to sit up in a pushchair and make eye contact the most incredible thing began to happen – the hitherto invisible ‘Down’s Syndrome community’ suddenly became visible and vocal. People stopped us in the street, came up to us in shops, and chatted to us in cafes, all eager to welcome us as one of their own, and share reminiscences of beloved family members. One lady said to me: ‘my son is nearly fifty now, and I have had a wonderful life.’ All these encounters were positive and uplifting. I began to wonder if I’d skewed them in my head to make them that way, blinded by the bright side. But then I came across some research that showed the families of those with DS were more positive than the general population; there was a lower incidence of divorce among couples who had a child with it.
Surely this could only be because these people enjoyed good ‘quality of life’?
What exactly constitutes good quality of life? A Paediatrician once said to me: ‘I have this one patient with no independent mobility. You might think that they had no quality of life, but if you could see them lying on a mat listening to music and laughing, you wouldn’t say that. Remember – they’ve never experienced any other way of being.’ Quality of life is subjective, and that makes it a difficult thing to pin down.There are a few things, though, that I think we would all agree are pretty fundamental to life quality regardless of a person’s circumstances. These are the things that impact on one’s emotional or psychological welfare in some way. You know the old saying: ‘Money can’t buy you happiness, but it can allow you to be miserable in comfort’. This is not an exhaustive list, but here are the ones that sprang to my mind:
The ability to form strong relationships, and through them, a good support network. People with Down’s Syndrome often excel at this, because not only do they have a strong drive to interact with others, but also tend to have good emotional awareness (emotional intelligence, I like to call it). This is an area where some ‘intellectual’ or ‘academic’ folk struggle. No wonder our families tend to stay together.Doing things for yourself is another. The majority of people with DS typically have only mild to moderate intellectual impairment or learning difficulties. They can manage self-care routines, make meaningful choices, read and write, and are more than capable of educational achievement, and can hold down a job. Many achieve a good level of independence given the opportunity. This coupled with their ability to form strong relationships mean that romantic attachments and even marriage are increasingly a feature of life for those with DS. Keeping busy is another- children with DS can join Scouts and Guides, take dance classes, swimming or riding lessons, football coaching, and do pretty much anything a typical kid can do. Adults, too, pursue their own interests, or those they share with family. The notion of a person with learning difficulties who is content to stare at four walls all day, and capable of nothing more, is inaccurate and pernicious. We’re all better off, without exception, when mentally stimulated and gainfully occupied. Joining in with family life, with community, and all their rituals and celebrations, having a break from routine, good food, good friends, education, health – many people with DS enjoy good health and are fully ‘able-bodied’; many, if not most, of the physical problems associated with it, such as heart defects, are treatable – all these little components of quality of life are not adversely affected by Down’s Syndrome, for the person themselves or their families. Dare I say it, in some ways our lives have been enhanced. We have been pushed in directions we might not otherwise have taken. We live outside the box (which was crowded and very same-y), and play ‘Australian-rules Parenting’. We have a different perspective, a thousand little reasons for new joy have crept in. The world has carried on turning around us. Life has not stopped since Freddie came along – Daddy became a graduate when Freddie was four. Mummy should graduate this summer. Big sister still goes to guides and is off to an international camp this summer. We still go on holiday; Freddie comes with us to museums, restaurants, parks, and events; on city-breaks and to the seaside. Sometimes he is better behaved than the typical kids (and sometimes he isn’t), he, and we, exist in the weave of life’s rich pattern. Some days we are happy, some days less so, but always, always, we are contented. Surely that is what is meant by ‘quality of life’?