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.

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 😉.

End Of Year Thoughts

Another school year has come to an end. Over the past couple of weeks my newsfeed has been full of posts about Sports Days, leavers’ assemblies and prom nights, and end-of-year reports and concerts. Bittersweet moments have been shared, of children ‘growing up too quickly’ as they pass through the milestone moments of their education, moving onwards from one stage to the next, inexorably towards adulthood. A good many of these posts have shown children with additional needs and disabilities fully included and participating in mainstream school life. Inclusion is the ideal – where the school is willing and able to fully meet a child’s needs, and where the child is able, with appropriate support, to cope in a mainstream school environment, it benefits the whole school community, and society, as it teaches tolerance, and ‘normalises’ disability by allowing non-disabled and disabled children to interact as peers, on a day-to-day basis. However, for some children it is not the best option.

There are many children with additional needs who struggle in the mainstream school environment. There are many mainstream schools who struggle to meet the needs of SEND pupils. Often the situation is an unhappy mix of the two. For the parents of children in this unenviable position, the suggestion that their child’s needs would be better met in a Special, or SEND, school may come as a crushing blow. And no wonder – inclusion in mainstream is held up as the gold standard; having your child end up in a SEND school is seen as Failure.

Parents often express feelings of grief, guilt, despair, or anger when it becomes apparent that their childs needs can really only be met at a Special school, and some refuse point-blank to even consider it, preferring instead the idea of fighting to keep their child in a school that is manifestly unsuitable. I believe the reason for this is because the common perception is that they will be somehow selling their child short, or letting them down, if they choose Special school. No parent wants to do that.

This is a very sad situation for everyone involved. 

I can tell you from personal experience that SEND school is not the bottom-of-the-barrel option. It is not about failure, or giving up on children, or just ‘babysitting’ them for the day, and it is not about segregating disabled children away from Mainstream. Special Education, properly done, is about appropriate and accessible education. 

It is about acknowledging and accepting difference, and the fact that different people need different things. Inclsuion in Mainstream is all very well when it works: when the school can meet the child’s needs, and the child can cope in a mainstream environment, but this does not always happen. Of course there are good and not-so-good schools in both sectors, but Mainstream and SEND are, in a sense, two different animals, and one is not less than the other.

My own son goes to a Special School. Freddie is in a class of ten pupils and three staff (plus one extra to assist a visually-impaired pupil). He gets a much bigger share of attention than he would in a class of thirty. Yes, in mainstream he would have one-to-one, but there is no guarantee that his one-to-one would have any special training or knowledge. With a pupil/staff ratio of roughly 3:1 he does at least have to learn to stand on his own two feet a bit, but in a very safe environment.

All the staff in Freddie’s school are specialists in SEND and are aware that our children may need to learn and be taught in different ways. They seem to be able to be much more flexible and creative in the way they work than mainstream would allow, it means they can be very responsive to individual need and circumstance 

I don’t have to fight for anything, and I don’t have to be constantly going into school to sort out problems. The expertise we need is all in place.

All the staff have a great deal of experience in dealing with challenging behaviours in a calm and constructive manner. All the staff know how to discipline children with additional needs effectively, and they have certain expectations of the children, and know how to communicate them in a way the children can understand.

Acheivement is measured on an individual level at Freddie’s school; each child is encouraged to improve upon their personal best, and when they do so this is celebrated, no matter what others in the class have done. This is only fair because, as the school recognises, their children come with widely differing needs and abilities.

Freddie certainly isn’t just being ‘babysat’ for the day. And he doesn’t spend the whole day just singing silly songs and doing bits of craft. Yes, art and craft are on the curriculum, but so is literacy and numeracy, or English and Maths as he calls them now that he is in Year 3. They do Phonics. They do topic work on Science subjects, History and Geography. They do use songs as a learning tool sometimes, because it helps the children to remember things. I still sing a little rhyme I learned in school when I want to remember which months only have 30 days in them. 

They do cover life skills and skills for independence, which has taken some of the pressure off me at home. In fact I’ve learned a lot of helpful tips from the teachers which I’ve been able to use at home. Consistency of approach between home and school has improved Freddie’s behaviour. 

I’m certain he’s getting far more out of the curriculum at Special school, because it’s differentiated to meet his needs, than he would at Mainstream school. To insist that he be taught exactly the same as typically developing pupils would be to deny his difficulties, and, therefore, limit his opportunity for learning. Many of the things that pupils do in Mainstream can be adapted for Special School. In September Freddie will be doing Forest School. In another year or two he will get to go on a residential, if I can bear to let him!

So, if you’re one of those parents who’s feeling gutted because Mainstream school is not working out for your child, please believe me when I say this isn’t the end of your child’s education, and you’re certainly not failing them, letting them down, or selling them short by sending them to a (good) Special School. You might just be unlocking a door for them.