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

Our ‘Lived Perspective’: Hand Gym.

Here we are, having a thoroughly miserable time and sponging off the State again: doing extra handwriting practice instead of having fun on our so-called holiday, using resources that have been provided free by the country instead of buying our own.

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Alternatively, for those not viewing this through bile-tinted spectacles: here’s a little boy playing on the beach, writing letters in the sand with a stick he found. This is ‘The Lived Perspective’. It’s the difference in viewpoint between those who actually live in a particular situation day-to-day, and those who just try to imagine it from the outside.

It’s true that Freddie does need extra handwriting practice. He is hypotonic, meaning he has low muscle tone, which can make holding things like writing implements and cutlery difficult. He can write, but his hands quickly get tired trying to grip the pencil, and then his letter formation quickly degenerates. It’s not really ‘a biggie’, though, as these days we all tend to use keyboards for the majority of our written communications, and he will have no trouble typing, as soon as I get round to teaching him. And there are therapies that will help to increase the strength and dexterity of his hands.

OK — I admit, we have had some input from a professional Occupational Therapist. This consisted of precisely two one-hour sessions. The first was an assessment of Freddie’s needs, from an O.T. point of view. The second visit was to deliver some stuff — not loads of expensive equipment paid for by the tax payer and thrown at us free, gratis and for nothing, that’s not what O.T. support is about: it was a few sheets of paper, on which were printed the instructions for some exercises and activities that would aid the development of fine motor skills, some suggestions for everyday household items that we could use to make the activities more meaningful and/or fun, and a list of reputable suppliers from whom we could purchase any more specialised equipment that we might need. He talked me through the exercises and activities, and added some suggestions of his own. From now on Freddie’s Occupational Therapy will cost the nation precisely … Fuck All, because his therapist will be me. And before you start, I’ll just point out that being the parent of a disabled child does NOT automatically entitle you to receive Carer’s Allowance, or indeed any other State Benefit (apart from Child Benefit, which everyone who has a child is entitled to). So, Yes, I am a very cheap therapist indeed: and a very good one, because I have a vested interest in the outcome, and a great deal of love for my little ‘patient’. His triumphs are my triumphs twice over.

Anyway, our homemade ‘hand gym’ consists of clothes pegs, paperclips, rubber bands, buttons and marbles, and white board pens, purchased from Wilko’s (and a white board easel I already had), one of the most sensibly arranged ‘My First Shoelaces’ books I’ve ever seen, picked up from Lidl (it’s amazing what you can find in the Aisle of Shame), and an ‘Undo Me Cube’, which is used to practice fiddly clothes fastenings — the only specialised piece of equipment we bought.


As far as Freddie is concerned this is all play. As far as I am concerned this is all play, something I’ve done with all my children. As far as ‘The State’ or ‘Society’ or ‘The Taxpayer’ is concerned it’s cost nothing. Welcome to our ‘Lived Perspective’.

 

 

Sharing The Lived Perspective: no 1

I am sharing a series of posts that show aspects of ‘the lived perspective’ of Down’s Syndrome and/or answer some of the points most commonly raised by negative commenters. The first post I am sharing is an old post of my own: though it is ostensibly about choice, it also addresses an aspect of choice often targeted by negative commenters – that is, ‘who pays for these women’s choices?’ These Naysayers always refer to ‘women’s’ or ‘mother’s’ choices when referring to the choice to proceed with a pregnancy in which Down’s Syndrome has been identified, and I think this says something very significant about societal attitudes. It would not be acceptable, indeed it would be seen as extremely rude and bizarre, if I were to say to the parents of a typically-developing child ‘He might not be one of the high-functioning ones, you know. What if he doesn’t pass any exams and get a good job? Who pays for your choice to have a child if in the future he becomes unemployed, or gets involved in crime and goes to prison, or becomes an addict, or chooses to smoke or drink himself into a state of decay, or if he’s one of those who goes on to develop cancer, or this condition or that one?’

And it would be very rude and bizarre indeed to ask a person such questions, which is why I never would. So why do people feel justified in asking ME very similar questions about my son? So, here we are, my post entitled ‘A Woman’s Right to Choose:

We talk about ‘a woman’s right to choose’. Eight and a half years ago I exercised my ‘woman’s right to choose’ to the fullest extent. I chose to continue with my pregnancy knowing that my child would have Down’s Syndrome.

I am a rational adult. Given accurate and balanced information (that’s another story in itself) I am perfectly capable of evaluating the data and weighing up the pros and cons of any situation or argument. I made a conscious, rational choice in the full knowledge of what I was doing.

I made my choice knowing that I would not have to sacrifice my life, because nothing feels like a sacrifice when you have made the right choice.

I made my choice knowing that my son would not be a burden to me; he would be my child. Yes, I would have to look after him for longer, and he would always need more help than most, but he would bring me just as much joy, and love, and pride, as his brother and sister.

I made my choice in the knowledge that my son need not be a burden to you, the taxpayer, when he grows up (let’s face it, that’s what you mean when you talk about a burden on ‘the state’ or ‘the NHS’). We, his parents, are rational adults – we would plan ahead for his future, for when we are no longer here. I made my choice in the knowledge that my family also pays its share of tax (we don’t begrudge extra care to others who need more than we do, not even those who have smoked, drunk, or drugged themselves into an early decline – everyone has their frailties. And while we’re talking about cost to the state, let’s consider how few, if any, adults with Down’s Syndrome will end up in prison – it’s a valid point).

I made my choice aware that my life would not perfect: it never has been, but then, whose is? Life does not have to be perfect to be happy. When you make the choice that is right for you, it is much easier to find moments of contentment day-to-day: this is the root of happiness.

So, if you see me and my son hand-in-hand in the supermarket or at the park, please accept that this is what a ‘woman’s right to choose’ sometimes looks like.

Because a ‘choice’ where only one alternative is deemed acceptable, is no choice at all.

Bringing Us Together

The Storm After The Calm.

The Odd Sock Diary has been quiet for a while because we’ve been on holiday. On the first day, a few moments after these photos were taken, as Freddie and I were jumping over the frothy edges of waves breaking on the beach, my phone fell out of my pocket into the sea.


 

It took a few days for the wretched thing to dry out properly and recover most of it’s functions (except for the camera and torch), but this turned out to be a good thing, because it meant I had no choice but to have a break from social media – which meant I was not distracted from being ‘in the moment’, enjoying time with my family. Crucially, it meant that I avoided having my holiday mood spoiled by the slew of reports about, and responses to, both the Australian ’60 Minutes’ documentary about prenatal testing and the CBS report on the ‘eradication’ of Down’s Syndrome in Iceland. When I returned home, and my phone to (almost) full function, my newsfeeds were full of them. Worst of all, of course, were the hateful Facebook comments — the sort of thing no one would dare say to your actual face for fear of getting their own face rearranged.

A certain level of ignorance is to be expected amongst people who have never had any reason to learn about Down’s Syndrome. Such ignorance is forgivable – I, myself, am ignorant about many things which fall outside my life experience. But the nasty way in which some of these comments were expressed was staggering. I get it — not everybody wants, or would be able, to raise a disabled child. But the sheer spite and contempt directed at people with Down’s Syndrome and their families was totally un-called-for, and, frankly, disturbing. At times I felt like I’d wandered by mistake into some digitised archive of the Third Reich.  What can have happened to these commenters to leave them so eaten up with bitterness and fear? Or are they simply professional trolls, who get a perverse kick out of causing hurt and offence to others?

I was struggling to even begin to formulate a response to the things I’d read. Then I saw something that let me off the hook: a motivational meme that someone had left lying around on their timeline. It said: ‘The world is changed by your example, not your opinion’. So maybe the best way forward is not to respond directly to these things, but to carry on simply showing the world what a good life, what a happy, worthwhile and quite ordinary life, people with Down’s Syndrome, and their families, can have.

That said, I am a woman of strong opinion and strident voice, and I feel better when I have my say, and I realised that many of the ‘points’ raised by negative commenters are things that I have addressed in some way in previous posts. So I am going to re-share some of them over the coming days, and I would like to ask my fellow advocates and colleagues in the ‘Down’s Syndrome’ blogging community to share my posts too (if you see them and feel they make a valid point), and I will do likewise with yours on my Facebook page and on Twitter.

How do we, as individuals, and families, live our lives? How are we the same as ‘typical’ individuals/families, and how are we different? How do we meet the challenges we face, and overcome them? I’ve no idea how to do one of those Linky things, but if you’ve got something you’d like me to share, please drop me a link to it, via the comments, or messenger, and I’ll share it around.

A Vial Image

Images grab attention. They allow readers to summarily apprehend and review complex descriptions and concepts

On 30th July BBC news ran an article headlined ‘Public Health Wales ‘scoping’ Down’s syndrome Blood Test.’ From the point of view of the Down’s Syndrome Community the article struck a positive note. The article reported that Public Health Wales had cautioned that any plans to introduce the new test for Down’s syndrome within NHS maternity units in Wales must be carefully considered. It also quoted Julian Hallett from the Down’s Syndrome Association in Wales as saying ‘there should be no rush to implement NIPT in Wales until NHS staff were ready to support women and explain the new choices for screening’. Also reported were his comments that midwives and screening coordinators need to be trained (in the system) and have up-to-date, balanced and accurate information on the conditions being tested for: the need for health professionals to ensure that they balance the information they give parents by including positive information, and explaining the increased opportunities that now exist for both children and adults with Down’s Syndrome: and the need for rapid access to appropriate counselling, so that parents can make an informed decision.

 

This is exactly what so many in the Down’s syndrome community have been calling for: careful consideration instead of blanket acceptance and assumption; balanced and up-to-date information that will allow prospective parents to make a truly informed decision. At last, perhaps, our voices are being listened to.

 

But the BBC chose to run the article accompanied by the following image:


 

Five vials of blood, side by side. Appropriate enough, you might think, for an article about a blood test. So what’s the problem? Look closely at the picture, at the tubes. What do you notice about them?

 

I appreciate that whoever was responsible for choosing the image did so without malice, or even much thought. In all likelihood they just grabbed a stock image. Why does it matter?

 

Images grab attention. Images allow readers to summarily apprehend and review complex descriptions and concepts. This is especially true in the image-heavy, quick-click world of social media, where we do not expect to have to pore over the details of a lengthy text; instead we want to consume information in the form of easily digested pictures and bite-sized captions.

 

Visual images make a point more quickly and forcefully than words. But it is easy to be misled by them, because they show only a snapshot of the reality that the artist or image-maker has chosen to portray. This is a particular problem for those grabbing stock images generated by someone else: the creator’s original message or intention can be overlooked, and a superficially appropriate-seeming image can end up giving out a quite different impression to that contained within the text.

 

Those viewers who do take the trouble to read all of the accompanying text will not remember all the words and are, therefore, vulnerable to have their understanding of the text biased by one, simple, stark, arresting image that their mind will retain for much longer.

 

Now, look again at the image above. Read it. Consider every detail and the impression it creates in your mind. What does this picture say to you?

 

Five vials of blood in a row, three with different labels. The vials are not equal in size; one, labelled ‘Down’s Syndrome’ looms large in the foreground. That’s right: it LOOMS. Consider the sinister connotations of this word.

 

What does this suggest? That Down’s Syndrome is a disease? That it is worse than cancer? That it is a deadly scourge to be eradicated, as as we have eradicated smallpox?

 

Down’s Syndrome is NOT a disease. It is a genetic anomaly, a naturally-occurring chromosomal arrangement.

It is in no way comparable to cancer.

It cannot be eradicated, because we cannot prevent babies with Down’s Syndrome from being conceived, and we should not seek to prevent those parents who are so inclined from welcoming a child with Down’s Syndrome into their families.

 

How bitterly ironic that an article at long last calling for balanced, accurate, and up-to-date information about Down’s Syndrome to be given to parents has run with an image that is blatantly unbalanced and inaccurate.

 

Homemade (With Love, Felt Pens, and Desperation).

Here’s another of our ‘Heath Robinson’ handmade (in other words, crappy) resources. I wanted to demonstrate to Freddie, in visual form, exactly how long the school summer holidays are, and to reinforce the idea that he will be going back to school in September. I wish I had thought of this at the beginning of the year, because the second week of July is a little late to go looking for an academic year planner, at least in my local shops. I know there are lots of great printable resources available online, but our printer no longer actually prints. The light still comes on when you plug it in, though, so as far as Daddy is concerned it isn’t broken. Anyway, when you factor in the cost of ink cartridges, and paper, and electricity, it’s much more cost-effective to send your spouse down to the shops on foot to buy some pens, so she can draw things by hand on the free cardboard that you get with every packet of cereal. Another advantage of wives is that you can run them on cheap baked beans from Aldi. Indeed, they are the ultimate sustainable solution: organic, low emissions and fully biodegradable, a bit like cart horses used to be.


I didn’t have long to knock this little gem together, and wasn’t sure how best to approach the task. I colour-coded the days: blue for school days, red for weekends, and yellow for school holidays. By the time I was finished I was beginning to think that I’d made it over complicated, but there was no time left to try again. I attempted to explain it to Freddie when he came in from school, but he immediately demolished the moveable green dot I’d made to mark which day we’re on, and cast the chart into the (metaphorical) weeds.

Later on I found the dot stuck to my shoe, so I stuck it back on the chart and Blu-tacked the whole thing to Freddie’s wardrobe door thinking ‘We’ll see how we go’.

Fast forward to Saturday morning and the first thing Freddie does when he gets out of bed is to move the green dot from the Friday to the (correct) Saturday, then parks himself in front of the chart and studies it for a good few minutes. Perhaps he will ‘get it’ after all. Always presume competence. Actually, while it’s perfectly legit to presume competence in one’s children, you might want to exercise a little more caution when it comes to professionals 😉.