Second Class Syndrome.

Internecine warfare would be a good way to describe the debate which rages amongst the Down’s Syndrome community over Mainstream School v. Special School. At least, it feels that way some days. It is very damaging. We risk splitting Down’s Syndrome into two classes – ‘Acceptable Down’s’ and ‘Unacceptable Down’s’. Seriously.

A friend and I were accused on a public forum, of wanting to hide all children with Down’s Syndrome away, because we have both placed our children into specialist schools. In both our cases the decision to do so was not taken lightly. It became apparent that, for the wellbeing of our children, we really had no choice. Yes, we know what the research says, but we also know very well what our children’s individual needs and tolerances are, and we always put those first and foremost. Whatever we might have originally hoped for, we had to accept that our children, in their way, were telling us that they needed something different. We did not consign our little ones to the educational bin, we did what was best for them as individuals.

 

There is one thing that we both agree on – that the best school for any child is one where their needs are met, and where they are happy, be that Mainstream, Specialist, or home schooling.

 

Many children with Down’s Syndrome thrive in Mainstream School, and when that happens it’s fantastic — good news for everyone. But there are some who do not cope in the Mainstream School environment, or who do not have a Mainstream School in their area that is willing and able to fully accommodate their needs. Mainstream does not work out for everyone. So, what are these children supposed to do for an education?

Pre-1970 local authorities were not legally obliged to provide any education for children with Down’s Syndrome, so many did not go to school at all. If you believe that children with Down’s Syndrome should never be placed in Specialist Schools, then you risk sending some children, for whom Mainstream School is not suitable, back to the pre-70s situation where there was no suitable educational provision for them. These children would have no opportunity to learn and make friends, one parent would have to give up work to stay at home with them, and quality of life would be reduced for the whole family. If you wanted to create a situation in which more people receiving a prenatal diagnosis would choose to abort, then this would be the way to go about it.

At least as the situation stands now we have options. Children with Down’s syndrome can go to Mainstream School, and for many the placement will be a success. Those for whom Mainstream does not work out for one reason or another have the option to go to a Specialist School.

Children who go to a Specialist School are not pushed in there and forgotten about – it’s not like the bad old days of the long-stay hospital. They are not hidden away. They live at home with their families in ordinary streets and neighbourhoods. They have mums, dads, brothers, sisters, friends and neighbours. They can go to Scouts, Brownies, swimming lessons, dance classes, whatever they like, alongside other kids, typical kids. They are a visible and active part of the wider community (as Specialist schools often are).

Why would anyone be against a child with Down’s going to Specialist School if they needed to? Why would anyone think that forcing a child to attend a Mainstream School, where that individual child was manifestly unhappy and unable to cope, was the best thing for them?

Is there a hierarchy of acceptability amongst people with Down’s syndrome? Are only the ones who go to Mainstream School, are ‘high functioning’, high achievers, those who can come close to the ‘typical’ norms, acceptable? Are the children who need specialist education not good enough for you? Are they not good enough to represent Down’s Syndrome? Are they ‘less than’, less worthy, less deserving of rights? Is it really YOU that wants to hide the ‘Special School children’ away, because you are afraid they will taint the fight for acceptance by being ‘unacceptable’? And what are you saying about all the children who go to Specialist School for reasons other than Down’s Syndrome? Are they less worthy, too?

If we do not accept and embrace the worth of ALL of humanity, the ‘high functioning’, ‘low functioning’, physically impaired, or those with very complex needs, then we might as well jump into bed with the eugenicists.

My child needs me to be an advocate for him as an individual, so if you think I’m ‘letting the side’ down by placing him in Specialist School, then hard cheese, old bean. My child’s needs come before your opinions. And yes, I am in the best position to know what my child’s needs are and what’s best for him. Some children with Down’s syndrome do need a specialist education. Accept it. Get over it.

For more on my view of Specialist Schools, click here:

https://kerryfender.wordpress.com/2017/07/22/2753/

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You Are. But do you think?

How do we square the fact that, under UK law, a foetus has no rights separate from those of its mother, with the fact that it is undoubtedly a living human being? Anyone who has ever been pregnant will tell you that the foetus is most definitely alive. Every foetus that survives pregnancy will be born a human baby – it has no potential to become anything else. It is, therefore, a living human being. Why, once the threshold of viablility is passed, does it still have no rights of its own?

 

How do we square the fact that those who would deny the foetus any rights and protections in law under the guise of ‘a woman’s right to choose’, then limit that right to choose by steering women towards one particular course of action over another, according to what is considered socially acceptable in her circumstances? How is true choice possible when society exerts subtle pressure on women to choose one course of action over another instead of allowing her to decide for herself. For Instance, in the case of prenatal screening, a woman’s right to choose is fast being conflated, in society’s expectation, with a woman’s moral duty to abort a foetus found to have certain disabilities or conditions.

 

How do we square the above with the Rights of Disabled Persons?

 

Would it not be sensible to take the decision not to have any children at all, if you really believe that you could not cope with raising a disabled child? After all, there is no guarantee that the child born healthy and non-disabled today will remain healthy and non-disabled tomorrow, because shit happens. For that matter, what would you do if you ended up having to care for a disabled spouse, because shit happens? Or disabled elderly parents, because shit, and ageing, happen? Would you knock them on the head and say you had to do that because they were too difficult to look after and, in your opinion, had low quality of life?

 

Does asking these questions make me ‘pro-life’? If it does, what’s wrong with respecting the dignity and sanctity of human life anyway? That respect is probably the only thing stopping me from throttling the people who suggest my son should not have the right to life.

 

Does asking these questions make me ‘anti-woman?’ No woman is just a woman, she’s also a human being, and was once a foetus (as we all were). She may also be Disabled. Or any one of many other things. Intersectionality is part of all human experience to some degree.

 

How do we care for and protect women who have been abused or raped, or are economically disadvantaged, etc, and at the same time give rights and protections to the unborn child?

 

If we refuse to protect the unborn Disabled child, what does this say about our perceptions of disability? And do these perceptions negatively affect the lives of children and adults living with disability? Doesn’t the view that Disabled people are ‘disposable’ before birth tend to erode their status after birth? How does this attitude affect public planning and the provision of services, and so on?

 

Don’t kill, rape, abuse, or discriminate. Treat others as you would like to be treated yourself. Protect and care for the vulnerable. Aren’t all these things no-brainers?  

 

 

 

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.

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.