Our Lived Perspective:  Close Encounters 2.

This latest post from Our Lived Perspective is, again, another old one: and, again, it was brought to mind by a thread in which someone had shared a negative comment they had either seen or received, posted apparently by the mother of an adult with Down’s Syndrome, who seemed extremely embittered with her life, who blamed her daughter for everything that was wrong in her life. Some queried what had happened to make her so bitter. Others, however, pointed out how much harder it must have been decades ago when parents did not receive the support that is available now, and we’re simply told that their children would never learn anything and there was nothing to be done. I’m sure it must have been.

But, if the encounters I have had with the parents of (now) older adults with Down’s Syndrome are anything to go by, there have always been families who thrived, regardless, even back then in those days of bleak prognosis. You may say that those who had a negative experience would not come and talk to me, because they would not be eager to talk about it, especially to a stranger, and I would have to agree. But if most parents in the past were struggling, were miserable, and embittered, then you would hardly expect anyone from the older generation to come up and talk to me at all. And yet, I have had many such encounters – positive encounters. So, here’s another post about a random encounter I had with a parent from an older generation: once again, I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like. I promise you, what lady said to me about her elder daughter’s wish for a baby just like her sister is, truthfully, what she actually said. I did not make it up for emphasis. It surprised me at the time, but then, as I have learned, people are infinitely surprising:
CLOSE ENCOUNTERS IN PRIMARK.
Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.

Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.

Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’

My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.

‘Has he got Down’s?’ she asked

‘Yes,’ I said firmly and looked up … into a pair of distinctively almond-shaped eyes. ‘Just like me,’ she exclaimed, beaming.

We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.

When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.

Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.

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Our Lived Perspective: Close Encounters 1.

Today’s post from Our Lived Perspective is another old one. What brought it to mind was a thread in which someone had shared a negative comment they had either seen or received, posted apparently by the mother of an adult with Down’s Syndrome, who seemed extremely embittered with her life, who blamed her daughter for everything that was wrong in her life. Some queried what had happened to make her so bitter. Others, however, pointed out how much harder it must have been decades ago when parents did not receive the support that is available now, and we’re simply told that their children would never learn anything and there was nothing to be done. I’m sure it must have been.

But, if the encounters I have had with the parents of (now) older adults with Down’s Syndrome are anything to go by, there have always been families who thrived, regardless, even back then in those days of bleak prognosis. You may say that those who had a negative experience would not come and talk to me, because they would not be eager to talk about it, especially to a stranger, and I would have to agree. But if most parents in the past were struggling, were miserable, and embittered, then you would hardly expect anyone from the older generation to come up and talk to me at all. And yet, I have had many such encounters – positive encounters. I’d like to share a post about one particular encounter I had with an elderly gentleman, because I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like. It also addresses the question ‘what about the siblings?’

MEMENTO MORI.

I had another life-validating encounter in town last week. I’ve had quite a few of them over the last six-and-a-bit years. When I say life-validating, I am not mistaking the term ‘life-affirming’; what I mean is … well, I’m struggling to put it into words exactly … but what I mean is this:

I was in a shop in town with Freddie. As we walked down the aisle in one direction, an elderly couple approached from the opposite. The man was frail and stooped, leaning heavily on a walking stick. Freddie shouted out a cheery ‘hello’. Hearing him, the man looked up, then made his way over to us. His face bore a rather wistful expression as he ruffled Freddie’s hair, and stroked his cheek. ‘What a grand little chap,’ he said. I could have sworn there was a slight edge of emotion to his voice as he repeated, quietly: ‘a grand little chap.’

‘We had some wonderful times with our Alan,’ he continued in a faraway voice. The lady with him, who I presume was his wife, explained that ‘Alan’ was the gentleman’s brother, who had also had Down’s Syndrome. She confirmed that they had, indeed, had many wonderful times with him over the years. We chatted for a bit — the man told me about the sort of things that Alan used to ‘come out with’. The couple’s smiles were genuine, twinkling in their eyes, but they seemed, as I observed, rather wistful.

Then the lady said: ‘He’s passed away now.’

‘But he was a good age,’ said the man. ‘He’d turned sixty.’ (Two generations ago, this would have been a very good age for a person with Down’s Syndrome.)

I knew then why they were so wistful — because he had brought so many good things into their lives, and they missed him. On second thoughts, perhaps this should have been entitled ‘The Loved Perspective’.

Bringing Us Together

My Life As It Was Meant To Be: A Firefly Community post.

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:

http://community.fireflyfriends.com/blog/article/special-needs-parenting-my-life-as-it-was-meant-to-be

A Typical Weekend (for an Atypical Family).

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 …

 

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Saturday begins at 7:00am with an early morning puppet show – a matinee performance of ‘Hugless Douglas’. There’s coffee in the interval (if you get out of bed and make it yourself).

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A spot of football – until BOOF! – the ball thuds into the flowerbed, closely followed by a small boy with big boots. Still, at least it stops the fat, lardy-arsed pigeons from mating on the fence. Shameless, they are. You might expect it in the sort of neighbourhood where people go down the shop in their pyjamas, but not here …

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A birthday party – with cake, of course. I’ll go if cake is provided. You haven’t really partied unless you end up with buttercream on your nose.


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Sunday School for Teddy Bears (guess which one is Teacher’s Pet?)


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The art of Multitasking … eating toast while trying out the pencils I won in the Britain in Bloom Painting Competition. Typical -on the day I want to do one of those charcoal drawings, she doesn’t burn the toast.

 

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The odd selfie while Mummy’s not looking.


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Other random monkey business. ‘Monkey business? How very dare you accuse us of Monkey business? There’s nothing going on here.’


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And finally – ‘Drying my piggies’, after a nice warm bath.

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!

From the Archives: Concious Coupling.

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: #QualityofLife 9

I haven’t posted any #qualityoflife pictures for a few days because I’ve been very busy with uni coursework – final deadlines are looming. Which brings me to today’s post: Being Busy …  

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.