Tag Archives: Down’s Syndrome

Afraid

I was chatting the other day,  with some mothers of children with Down’s syndrome; what was it about Down’s syndrome, we were asked, that everyone, the world and his wife, finds so scary?  It’s a question that knocked on the door of my consciousness long before it was posed.

You can find a post on the fear of disability, and Down’s syndrome here.

It doesn’t happen straight away, but once your child is no longer a baby, or a cute toddler, a little one in a too big school uniform, once your boy starts to turn into a man, people’s attitudes change.  The miasma of fear hangs around them.  A fear of male sexuality.  A discomfort with a feminised masculinity; a man who will always need to be helped.  A not-quite someone.

You can find a post about Down’s syndrome and manhood here.

And I have written about the judgement on women, on mothers who dare to have a disabled child. Framed as choice, the discourse has more than a whiff of judgement about it, there is a you made your bed now you lie in it stench.  I have read about, thought about and written about the blame that is hung around the neck of mothers of disabled children.  Too needy. Hysterical. In denial. Awkward. Liars, even.

You can read a post about the inherent sexism present in our schools here.

Mothers of disabled children are set about with rules. In a digital age, we are told we share too much. We place our children in danger; we share stories that are not ours to tell, as if the stories of women, of mothers, are somehow less important, less deserving of a hearing.  In an economic time of debt and austerity, we must both pay the bills and stay at home. We have no need of ambition; our fate is to lay ourselves down at the feet of our children, the price we must pay for bringing to birth a disabled baby.

Today, for work (although I’d have read it out of interest), I read a report into the mental health and wellbeing of children with SEND (that’s special educational needs and disabilities) in schools, and, to be honest, I wasn’t shocked.  Depressed and angered, yes. Shocked, no.  You can read it here.

You see, we know that SEND is intimately connected with poverty and economic and social disadvantage.

We know that having a disabled child puts a strain on adult relationships and many such children grow up with an absent father.

We know that teenage girls are deeply unhappy with the world around them and their place in it, and that this is especially pronounced in girls who don’t, or who feel they don’t fit in.

We know that disabled adults and children face greater levels of bullying than any other group – and disabled girls even more so.

The report paints a picture of a toxic cocktail of powerlessness centred on the experience of women and girls; of individuals caught in the feminised state of disability.  No doubt there will be calls for change, for interventions or plans, for government backed initiatives, citing the well known unhappiness of the UK’s children in justification.  We have a big problem, requiring a big solution.

Except we don’t, not really.  To be kind costs nothing.  To be alert to bullying and to help our children and put a stop to the behaviour that has blighted the lives of so many costs little; some thought, some understanding, maybe a bit of training and a heap of commitment.  Challenging workplaces and demanding societal support for families, so that caring is shared, not carried by one person, might take a bit more, but still.

Without that commitment to change, when you look at it, when you really look at it, who wouldn’t be afraid?

 

Selection and Choice

One of the things you get used to, when one of your children has Down’s syndrome, is being asked a lot of questions.  They can be anything from the sort that come from officials and questionnaires about his ‘needs’ (like, how am I supposed to know when it is a new situation and I’m not there?) to the most common of all, accompanied by the sympathetic head-tilt and sing-song intonation of, ‘did you know?’

The did you know question became so ubiquitous when Sam was younger, a soundbite comment on the public nature of motherhood, that I became sorely tempted, in the faintly hectic way of the sleep deprived, to answer through dramatically bared teeth, ‘No, I ordered him from the baby shop especially because I fancied a more complicated and difficult life, thanks for asking.’  I never did, but my friend Meg and I used to laugh about it.  We’d decided that laughing at the world and its judgements and opinions was a better option than the alternative, which was to drown in a sea of self-blame and fear for the future. So laugh we did, imagining all the shocked faces at our reply.

The thing that always gets to me though, the poisoned dart hidden deep within that question, is the underlying assumption of choice.  We like to think, in our 21st Century Western way, that we have a lot of choice, as if we could indeed go into a shop and point at the baby we wanted, the one that satisfied our list of demands, as easily as that.  But, of course, there is no such shop, and no such easy choice. The best we can do is offer some sort of selected screening.  We set the criteria, genetic trisomies, duplications, serious diseases and disablements, and we screen; a blood test, quick and easy, but hardly painless.

Again and again I find myself questioned, this time upon my position (because, it seems to question why a woman might choose to act as she does, to make a smothered request for the kind of surrounding circumstances that enable women to make an informed choice, is not the sort of question I should be asking) and I think it comes down to one idea, one fundamental notion; to serve.

Which brings me to my point about selection.  In edu-land this year there has been a lot of handwringing and wailing (these are technical terms, you know) about the possibility of a re-introduction of grammar schools.  ‘We are giving parents more choice!’ declared the politicians.  ‘You can’t choose a school that works on the basis of selection!’ replied the critics.  The argument went back and forth for the best part of the last year, and, when it turned out that after the General Election the government would not be able to carry out its plans, there was a collective sigh of relief.

However, and here is the thing, selection, whether we like it or not, is already present in our education system (and I’m not talking about those areas of the country where we have grammar schools surviving).  It’s not necessarily an explicit thing, not by any means, but it is there.  You only have to step through the school door with your disabled child and you run slap-bang into it. ‘You have to think about what They take away from the others’, ‘They do special needs much better than we do’, ‘We can’t meet his needs because of *insert safeguarding/stairs/toilets/staff/whatever reason here’; the comments fall on your ears and enter your heart thick and fast.  Putting it simply, when schools set conditions on the kind of children – or the kind of parents, even – they welcome, formally or informally, selection is in action, just as when you set criteria on what kind of baby is an acceptable one to join your family.

Some schools are better at hiding it than others.  Some schools are honest and up front.  Whatever it is, it means that while we might say that on the surface that we have an inclusive education system, in practice I am not so sure.To me, there is an aspect of taking life as it comes versus the desire to control.  Our humanity ensures that life is not some sort of perfect set of events; there are frailty, mistakes, unhappiness and joy along the way.

There are great schools around the country whose head teachers subscribe to the premise that the local school serves the local community, who take life as it comes (we sent our children to such a school), but I am tired of the pretense that this somehow means that everyone works to the same high standards.  I am tired of the educational rejection, formal or informal, through the setting of selection criteria dressed up in the language of choice, of disabled kids with imperfect parents and fallible families. I am tired of the way that great inclusive schools act as magnets in their area, because families know that at least there, they will be welcomed; of the way that it is not acceptable for bakers shops or hotels to choose their customers, but somehow OK  for schools.

It makes me wonder, when all is said and done, just who we are serving.

The growth chart

There are three little red books sitting in a row in a cubby hole in my desk.  At one point they took up far more of my attention than was probably healthy, and now they sit, gathering dust, rarely seen and rarely remembered.  Inside, they contain all sorts of useful information pertaining to the health of infants, including records of health visitor visits, immunisations and growth charts.  When you are at home with baby you can pore over them and obsess to your heart’s content.

They aren’t all the same, though, and I freely admit that I had a problem with it at the time, and to a certain extent, I still do. Inside Sam’s book there is a plastic packet containing the growth charts for Down’s syndrome.  At the time, I wasn’t ready to accept that he should be measured by a different yardstick.  At the time, as now, I couldn’t accept that different yardstick as symboliaing a different standard, of expectation or of care.

And, after going on seventeen years of tangling with doctors and nurses of his behalf, I know that I am right to be cautious.  Too many people seem to accept a lower standard of health and a higher threshold for pain for him for me to be entirely trusting of the protocols.  When a young person (or an old person, come to that) cannot advocate for themselves, be that because they are too young, or because they have some form of learning disability or difficulties in communication, you, as their parent or carer, have to learn to step in and make sure that things happen – sadly things like food and drink and getting the right medicine at the right time (and I’m not talking about the NHS in recent years, either).

But, and here’s the thing, he is different.  His physiology is expressed in a different way to the typical population, and, along with that, comes an understanding that in all sorts of ways he needs something different.  At first I understood it in the acceptance that, as his mother, I was allowed – and I was – to be more anxious than the average parent.  As he has grown, I see that he needs different, earlier, bed times at home, different, adapted texts at school.

In many ways, that growth chart represents both the blessing and the curse that is a diagnosis of Down’s syndrome.  While perhaps not so obvious to the untrained eye when he was tiny, it is there, now, for all to see.  Unless you are asking for help from someone official, like a government or local authority department or something, people can see, they can hear that he is different, and that adjustments will need to be made for him wherever he goes.  If only it didn’t mean that, at the same time, people who had less of an understanding, if not of Down’s syndrome, but of him as an individual, that expectations would be simultaneously lowered.  The application of a medical diagnosis to a social context isn’t always helpful.

I’ve never taught anyone with Down’s syndrome (if you don’t count Sam).  The children who have been through my classes have been the kinds with an invisible disability, like Autism, ADHD or dyslexia – and the vast majority of them haven’t had a diagnosis at all.  And, as their teacher, I have made all sorts of adjustments in order to make my classroom the kind of place where they can learn, from special places to sit to requiring the rest of the class (and myself) to change our behaviour or printing out the words in a larger format.

Which is why I am confused by the assertion that it is only those children who have a legally protected characteristic who I must make adjustments for.  If you want learning to happen in your room (or your corridor) then adjust you will, in a hundred million little ways, from creating a calm and purposeful atmosphere of mutual respect (and no, children don’t mind when they are asked to stop teasing/winding up certain individuals, in fact, quite the opposite, and no, they don’t mind when some children need more stickers than they do, again, quite the opposite, unless we bang on about it not being fair and make out that it is the stickers or the ‘special treatment’ that is the important thing, rather than the learning) to adapting materials and resources so that they can be universally accessed, or finding a different way for a child to show me what it is they really know rather than tying themselves in knots over spelling in a science lesson.  To suggest otherwise is to perpetuate the myth that teaching is (or should be) easy, and that special educational needs isn’t complicated.

And no, I don’t see that as a lowering of standards.  What it is, is an understanding that an education is a process and that you will never, especially in a child, be presented with the finished article. Because, in the end, learning is fundamentally unlike that one dimensional, linear, medical growth chart.

 

See also:

https://notsoordinarydiary.wordpress.com/2016/10/30/the-teacher-and-the-doctor/

https://notsoordinarydiary.wordpress.com/2016/05/01/clickbait/

https://notsoordinarydiary.wordpress.com/2016/01/01/removing-the-rose-tinted-spectacles/

https://notsoordinarydiary.wordpress.com/2015/05/23/the-secret-teacher/

https://notsoordinarydiary.wordpress.com/2015/07/14/reality-check/

I’m trying desperately to keep on saying the same thing, but in a different way so you don’t get bored.

 

Blood, Sweat and Tears

I sent out a tweet the other day.  It was a little, innocuous retweet of a picture of a little girl, trying on her school uniform for the first time.  In it, she is clapping her hands, as pleased as punch to be wearing a blue checked dress, her hair in a ponytail, shiny black shoes as neat as a pin.  Clearly, her parents were pleased as punch too because they sent it out to some big hitters in the Down’s syndrome tweeterverse.  I saw it and I was glad to share it with the many teachers with whom I am connected in a virtual sense.

It had a surprisingly large effect.  To date, it has had 32 retweets (which is a lot for me), 90 people have saved it with little love-heart likes, there have been 8,672 impressions and 148 total engagements (whatever they are).  I’m pleased, because I thought at the time, and I still think it this morning, that it is an important little tweet for people to see – and to notice the three, innocent sounding hashtags that follow. #inclusion #acceptance #school

You see, I too have been in the place of this mother.  When my son was standing there, all togged up in his little school uniform, ready to take his first big steps away from my side (I don’t count the little ones at nursery, it was only two and a half hours anyway, hardly enough time to get there and back again and make a cup of tea in between) (if I was the sort to drink tea), I, too, was filled up with a sense of importance of what his entrance into mainstream school would mean.

You see, what I don’t think that many people understand, and why should they after all, is quite what it is like to be told that your child, the baby you hold in your arms, the one you have waited for, anticipated with such joy, is somehow less; a cause for concern.  It’s a shock, I can tell you, and not a pleasant one, either.  People who have not had this experience don’t know how it knocks you sideways, how long it takes to recover, to rebuild the life you thought you had lost.

And, again, what I think many people, many teachers, don’t understand is what an important role they play in regaining, reclaiming that stolen joy, in denying the less than and turning it on its head; the way that they can turn the role of the state from destroyer of dreams to healer and hope.  They don’t understand, and there is no reason that they should, the importance of their symbolic role in the life of another.

But, and here’s the thing; what will happen when inclusion turns out to be less warm and fuzzy and more blood, sweat and tears?  Will we blame the parents, for not telling the truth about their children, for carrying on in an irresponsible manner? Will we blame the children, for being too disabled, too needy, too naughty, dangerous, even?  Will we, instead of examining a system that fails to put in place proper and adequate support, for teachers, for families, for children, blame everyone but ourselves and throw inclusion out of the window?

I do not wish to peddle a kind of warm and fuzzy inspiration that has little effect and no lasting value, for, while the smiling faces of cute little children with Down’s syndrome and tales of inclusion might make us feel good in the moment, will they help when the going gets tough?  It might be enough for me, because I am driven by more than a moral imperative, but will it be enough for you?

 

Conquering the Mountain

Today, I have very tired legs. I am convinced that this is a genetic flaw on my part, and not because I have been avoiding most forms of exercise for the winter, but my family remains unconvinced. They, unlike me, are tired, but able to tackle the stairs without wincing. And the reason we are tired? Earlier this week, we decided to walk up and down Snowdon.

I’ve written about this plan before. For some strange reason, it has subconsciously been one of those things that R and I felt was something our kids ought to do. I’m not sure why. I never did when I was a child. I never went anywhere near the place. And, when it’s all said and done, we aren’t really a heavily into walking kind of family.  Nothing like it, in fact. But, we had a week off and nothing on the calendar apart from ‘week off’ in it and, as going on an adventure of the far flung variety proved to be a little more expensive than we had anticipated, Snowdon it was.

I don’t know about you, but there is something tantalising about good ideas when they are far, far away.  Everything about them seems positive. Nothing troubling can possibly get in their way. Except, that is, until you are faced with the reality of your endeavour.  There we were, new boots and posh socks for the children bought, accommodation (very nice) booked, and there I was, wide awake in the darkest hours of the night, unable to sleep for worrying.

In a way, it’s a bit like giving birth. After the first time, you sort of forget what it was like. The experience is coloured, airbrushed by the aftermath, whatever form that took. The second baby seems like such a good idea, and it is only when you are stopped in your tracks by the strength of your first real contraction that you think, oh, yes, that was what it was like, and why am I doing this again? After that, it has a tendency not to fade, and, third time round you know exactly what you are doing and you develop a sort of grim-faced determination, gallows humour about coughing in public daytime, and will making in the silent privacy of the night.  Once I was faced with the reality of getting my three kids up and down a mountain, with online guide rating ‘hard’, the euphoria of success faded and the memories flooded back.

So we came up with a plan. R would walk the Little Two (not so little these days) up, Sam and I would meet them at the top, having been transported by train, and we would all walk down together. A plan which rapidly transformed itself into Sam and I would travel as far up as we could on the train (always check train timetables before booking)and then meet the others (at the bit where all the tracks join together, just before the summit), walk the rest of the way up and then back down together, hastily followed by we would all go up on the train and all walk up a bit and down a lot together (the operative word being together). The thought of me on my own with Sam, on a mountainside, and the pair of us getting an attack of the collywobbles was enough to settle the matter. (And that’s before Train Boy stuck his oar in.)

When you’re at the top, it can feel terribly lonely – and the way down terribly terrible.

The thing about plans, though, is that it is always a good idea to have a contingency one. Because, when you get up to the (nearly) top of the mountain, things change. The weather, so kind and gentle when you set out, is cold and chilling; the wind is fierce, and the clouds, so far away when you are sitting, comfortable, on the bus, transform the landscape from majesty to terror in an instant.

We didn’t do it. We didn’t make it to the top. We got to within spitting distance (if the gale that greeted us as we came onto the ridge hadn’t threatened to carry our spit over the cliff and us with it) of the summit and we changed our plan, and our minds.  We took in the frightened faces of our travelling companions, looked through the entrance to the Pyg track, obscured by wisps of cloud whipping past and turned right back round the way we had come. And, I think, for perhaps the first time, I feel no sense of disappointment, or of failure, that things did not go as we had thought.

The weather did not look like this.

You see, and this is something I have found myself thinking Justine Greening could probably do with reading as I have watched her on the news today, you don’t need to terrify everyone or force the issue and put yourselves, and your children, in danger in order to prove a point.  When I wrote my book (details on how to buy it here), at the end I put in a section on what to do if it all goes wrong. Because sometimes you find yourself at the mercy of circumstances which you cannot control, sometimes you find yourself in the wrong and you have to apologise – and there is no shame in that.

This week, we set ourselves a task, and we failed. But, and here’s the thing: we made it back down in one piece (and that in itself is a success). We went the long way round (and even that had its hair-raising moments), we chatted to the people we found ourselves journeying with and shared encouragement along the way. We might even have done a little bit of Down’s syndrome advocacy while we were at it.

We are still here, today, and the mountain, that great big grim-faced mountain we couldn’t even see, will still be there, waiting for us should we decide to play again, tomorrow.

‘I hate mountains.’