This post, on Firefly Community, goes some way, perhaps, to explaining why I found it relatively easy to decide to go ahead with a pregnancy in which I knew I had a 1-in-12 chance of having a baby with Down’s Syndrome; and why I was able to face his diagnosis with less fear than most:
So, what is a ‘typical’ weekend like for a ‘Down’s Syndrome’ family? Well, for a start, it’s a lot better when you don’t refer to us in that way. We’re just a family who have a kid with an extra chromosome. It’s no biggie, that little extra; it doesn’t weigh anything, or climb up the curtains, and he doesn’t leave it lying around for people to trip over. For us, the average weekend looks something like this …
After all the time and trouble people have gone to over the centuries, to generate a whole storybook-full of plausible negative stereotypes — and we selfishly ignore them. Isn’t that just typical!
Quality of life is a topic I return to again and again on Extra-Ordinary; it’s a difficult thing to quantify, being a subjective thing by its very nature. There are a few things that would feature somewhere on almost everyone’s list. Good realtionships is one of these, I think. Marriage is apt to be more like a rose bed than a bed of roses; it can be fragrant and beautiful, but includes thorns, bugs and dirt as an integral part of the package. Here’s a post I wrote about a year ago about our attempts to negotiate the additional pressures placed on our relationship by being ‘special needs’ parents…
Getting quality time alone together is a challenge faced by many parents. Factor a child with additional needs into the equation and the problem increases, especially if, like us, your babysitting options are limited.
Tim and I inhabit the same space a lot of the time; but I can’t say that we spend a lot of time in each other’s company, because we rarely get to speak to each other, except to make purely functional requests. The moment we attempt to say anything more than ‘do you want a cup of tea?’ Freddie inserts himself into the conversation, loudly and persistently trying to turn our attention back to him. He has to be taken to the toilet, supervised while he eats, and even while he plays, as he is inquisitive, mischevious (typical third child), has no sense of danger, and views rules as a dare.
Although he’s in bed by eight and can be relied upon, most nights, to sleep until at least 6am, as his brother and sister did before him, we don’t really get any respite. When our older two were little, evening was our time. Once they were tucked up in bed we knew that they were unlikely to disturb us, and if they did need anything they’d shout rather than come down, so we could shut the living room door and enjoy some time as a couple.
But not any more. Our once well-trained, obedient older children are now teenagers straining at the leash. They don’t have bed times. They come down and raid the fridge, invade the living room, take over the YouView box and snaffle our peanuts, or any other treat we’ve got. Since the eldest turned eighteen even our beer isn’t safe.
Yes, we have a bedroom with a door, but they rarely remember to knock before they come galumphing in demanding a note for P.E. or more toothpaste, shower gel or hot chocolate powder. Or we hear a sudden howl of anguish from downstairs, because someone has exploded something (not neccessarily food) in the microwave, or is trying to sort out a most unfortunately blocked toilet with a coat-hanger.
And so our previously redundant bath-tub, made obsolete by that ‘Johnny-come-lately’ the power shower, is enjoying a new lease of life as a place of recreation. Not least because we can lock the door.
The whole thing takes on the air of a midnight feast: we take up wine and nibbles, and borrow Freddie’s spill-proof portable DVD player. We fill up the huge tub, add some Matey bubble-bath (you can keep your grown-up ylang-ylang and aromatherapy nonsense — Matey gives the best bubbles ever), and light candles. Then we can enjoy the luxury of, not just relaxing in deliciously warm, scented water, but of talking to each other, having our treats, watching something, all without being disturbed.
There is still the occasional rumpus from downstairs, but the threat of us hurtling down the stairs, naked except for a few bubbles, is generally enough to make the teens decide that manning up and sorting it out themselves is probably the lesser of two evils.
Being busy may not be on everyone’s good quality of life list, but it’s got to be better than just sitting staring at the walls, which in many people’s imagination is all that those who have learning difficulties are capable of doing. Indeed, once upon a time it is pretty much what used to happen. There is probably a significant correlation between the rise in life expectancy in DS and the move away from institutionalisation, and towards people remaining within loving families, and being given opportunities for education, enrichment and meaningful occupation. Freddie loves to occupied. If he isn’t, he gets bored and then he gets into mischief. In Freddie’s case the devil makes work for idle hands and an idle mind. Sadly in all too many cases, in the past, they just withered away.
It’s something that we enjoyed before Freddie came along, and it’s something we’ve continued to enjoy since. He’s generally pretty chilled out on a flight so long as he’s occupied, and despite his pale blonde hair and blue eyes, sofar he’s coped with heat.
When a baby is first diagnosed with Down’s Syndrome, the parents are often given a copy of an article entitled: ‘Welcome to Holland’. It compares finding out your child has DS to boarding a flight for a trip to Italy, that you’ve been planning for years, only to be told that you will be going to Holland instead. It reassures the parents that, though Holland’s charms are different to those of Italy, they are charms nonetheless. Before Freddie was born, those who flattered themselves that they were in the know about DS, made out we wouldn’t even get as far as Holland – we’d find ourselves in Jaywick on a wet Monday afternoon.
We didn’t end up in Jaywick, or in Holland. We’re in Italy after all. Not perhaps the bustling, cosmopolitan streets of Rome, or among the chic boutiques of Milan: we’re out in the country. The food tastes just as good, the sun is just as warm, and we can still enjoy a glass of red wine out on the terrace; the pace of life is a little slower, that’s all. But it gives us time to appreciate the vineyards and olive groves, and the shimmering summer air.
I had a post all planned for today, but once again Freddie has gatecrashed it. Which is wonderful – he is not only acted upon and done to … He ACTS and he DOES, he has agency. Which makes him a fully rounded character in the story of his own life.
It was going to be about ‘doing things for yourself’. Individuals with Down’s Syndrome do learn to perform most, often all, of the everyday tasks of self-care, and can and do share in many of the hobbies and activities we all enjoy. Many achieve a good level of independence provided they have a strong support network nearby. If you think about it, we all need help with some things from time to time. In a kinder, less competitive society, where the emphasis is placed on community rather than the individual, this would not be an issue; each person would contribute what they could, and receive what they need.
I was just pondering this, eating my breakfast when Freddie noticed that Big sister Lucy had come downstairs with her school bag, but not her coat. He immediately left his food and scrambled upstairs to fetch the coat, brought it down and insisted on helping her to put it on and zip it up. Lucy went off to catch the bus, toasty-warm and I helped Freddie to scoop up the last spoonful of cereal, and get ready to leave for school.