It’s been a day of wrapping and baking, in preparation for Freddie’s birthday tomorrow. Yes, I’ve got him a ‘proper’ birthday cake from a shop, but I wanted some egg-and-lactose-free ones too, so that mummy could have done cake too. I think I deserve some cake – after all, it was me who did all the hard work on that day nine years ago 😆.
As I was putting the smarties on the cakes (I’ll have to pick mine off), an Amazon parcel arrived addressed to the young man himself! From whom, I do not know. How exciting. Now I can hardly wait until tomorrow to find out what it is.
Should I be feeling guilty that most of his presents are books? This year is the first time he has asked for something other than cake, candles and balloons when asked what he’d like for his birthday – and it was a book.
Freddie still loves anything with big, bold pictures, but the stories in most picture books are perhaps getting too babyish for him. I’d already privately decided that perhaps it was time to invest in some factual books for him – as they often have great illustrations, diagrams, photographs, etc that will catch his eye, and he will learn something about the world while he’s at it. Handily, he has recently become almost obsessed with a book I bought him a couple of years ago – the Nat Geo Little Kids First Big Book of Dinosaurs. It’s aimed at children a little younger than him, but, though Freddie’s sight reading (whole word recognition) age is comparable to that of a typical child his age, his understanding of context and meaning is somewhat behind, so it’s probably just about right. It has a glossary in the back and we’ve already learned three new words – palaeontologist, hypothesis, and extinct; and because he currently wants to read it every night were getting lots of repetition of the meanings (cos I ask him to remind me what it means each time). The book he asked for is another one in the same series. So what if it’s a little young for a 9-year-old? If it piques his interest in a subject, and gives him the basic information, it’s a stepping-stone to the next level. There will be those who will say I am holding him back, that I should be pushing him to be ‘age appropriate’. But Freddie has a developmental delay, so chronological age means very little. I prefer to encourage him to be ‘Freddie appropriate’ and go at a pace that is comfortable for him. I’m not a mum who is desperate for all her kids to become rocket scientists or brain surgeons so she can bask in the reflected glory. I just want them to find happiness and self-esteem in being exactly the people they were born to be. It’s not unusual, when Freddie goes suspiciously quiet, to find that he’s not up to mischief but is,in fact, sitting on his bed looking at a book. So, it seems I may have answered my own question.
Do you think books make a good birthday gift, or are they an absolutely rubbish present?

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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/

How NOT to get Down’s Syndrome.

Let’s just get one thing straight, shall we? Taking Sodium Valproate during pregnancy (or at any other time) does NOT cause Down’s Syndrome.

Here’s a list of other things that DO NOT cause Down’s Syndrome. It is not exhaustive (because, sadly, the human capacity for stupidity and misunderstanding is inexhaustible):

 

  • Down’s Syndrome is NOT caused by any drugs or medication, legal or illegal, taken during pregnancy or at any other time. Some drugs can cause some kinds of birth defect, but not Down’s Syndrome. So, if you have a baby with Down’s it’s not because of the medication you take for your chronic health condition, it’s not because you once took a drag on a joint made from marijuana grown in your mate’s sock drawer, or because you sucked a Fisherman’s Friend when you were pregnant!
  • Trisomy 21 is not hereditary. It DOES NOT run in families, or occur when two ‘carriers’ have a baby. It occurs completely randomly at the moment of conception, a bit like the random way the lottery numbers come out at the moment when the balls drop. It could happen to anyone – even you. And it’s statistically more likely than winning the lottery.
  • Down’s Syndrome is NOT caused by eating peanuts in pregnancy. Or any other foods. Yes, I really have come across someone who thought that if she ate peanuts while she was pregnant her baby would have Down’s Syndrome. I was stuck in a hospital ward with this girl, and after listening to her pontificating for a couple of days I wasn’t sure if she even knew what the cause of pregnancy was, nor indeed the relative locations of her arse and elbow. I was tempted to tell her that it is caused by having sex with your school uniform on (which was undoubtedly the cause of pregnancy in her case), but I was in a good mood because of all the hormones so I didn’t.
  • It is NOT caused by incest. So, if you live in the Moorlands (winky face, just joking) and are married to your brother/sister/grandfather/auntie (or are just a total mother*****r for some other reason) then rest assured – although close-kin sexual relationships can result in genetic defects, Down’s Syndrome isn’t one of them. But, hey, at least it’s not Down’s, right, so you’re safe to continue (sarcasm). Although you should be aware that you might get banged up (not sarcasm).
  • It is NOT God’s Punishment. It is NOT caused by sin** or by not praying hard enough. Even if you are religious, you have to admit that no god worth believing in would play fast and loose with the life of a vulnerable person by handing their care over to an evil person as a punishment.
  • Down’s Syndrome is NOT caused by a mother’s eggs getting old (should’ve kept them in the fridge, eh?). Although the statistical chance of having a baby with Down’s Syndrome increases with age, the reality is that more babies with Down’s are born to younger mothers, because they are the population group who give birth most often. 
  • UPDATE: Down’s Syndrome is not caused by having fantasy sex with a mythical ape-man. Yes – this has actually been put forward as a hypothesis, written in a cod-scientific style (honestly. I have a screenshot of it).
  • Down’s Syndrome occurs at conception. Either a person is born with Down’s syndrome or they will never have it. It cannot ‘develop’ after conception or later in life for ANY reason.

The only thing that causes Down’s Syndrome is having (actual) sex.

That’s right! Having sex causes Down’s Syndrome. All the people in the world who have Down’s Syndrome have it because their parents had sex*. Down’s Syndrome is caused by the presence of an extra chromosome on the 21st pair. It occurs randomly at the moment of conception. Conception occurs as a direct result of having sex, therefore having sex causes Down’s syndrome. So if you would prefer not to have a child with Down’s Syndrome, then remember whatever you do, DON’T HAVE SEX.

Below is a link to s video, by Shabang Theatre, explaining how Down’s Syndrome DOES occur. When you watch it, be careful not to get the wrong end of the stick — it definitely isn’t caused by having a threesome!

*For the purposes of this discussion IVF counts as sex, since it mimics what happens inside the body after the act of marital (or non-marital) bliss.

** Sex is not a sin.

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