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.
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’.
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.
If you have something about ‘The Lived Perspective’ that you’d like me to share, please drop me a link and I’ll be happy to do so.
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.
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.
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 😉.
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.
Freddie likes to follow a predictable routine. Familiarity is comforting to many of us, and in Freddie’s case, I think it also helps him to make sense of things – if THIS is happening now, then THAT will probably be happening next. This is probably the reason why he can be resistant to a sudden change of plan. Every school day the minibus comes to the end of the drive to collect Freddie for school. But today the bus was rather late. Then I had a phone call from one of the chaperones to say that the bus had been stuck for ten minutes on the main road that leads to our little estate, behind the huge vehicles of a maintenance crew who were resurfacing the road; could I possibly walk Freddie down to the main road? In the background I could hear that some of the other children were getting distressed – they like their predictable routines, too. I told her I would, but it might take me some time to coax him to do something different. Then I took a deep breath and …
Freddie was an absolute star. I explained the road was being mended, which meant the bus couldn’t drive over it to get to our house, so we’d have to walk to meet the bus on the main road. He was playing a game on my phone while he waited for the bus – his reward for completing all the steps on his morning routine. Usually he’s allowed to carry the phone to the bus at the end of the drive, and gives it back to me before going up the step. I told him we couldn’t walk down the street playing a game, we’d have to leave the phone behind, and straight away he let me have it back. He took my hand and walked nicely all the way off the estate; no refusals, no pulling his hand out of mine, no flop-and-drop. He jumped up onto the bus and went straight to his seat, and the bus was able to turn around and continue on its way again )much to the relief of everyone aboard).
And it was a lovely sunny morning too.
Can’t be bad 😁