I’m on the Firefly Community Website today, considering why so many parents feel defensive when meeting with professionals:
I have noticed that there are some very negative perceptions about Special (SEN) School among some parents in the Down’s syndrome community. Inclusion in mainstream is held up as the gold standard; having your child end up in a SEN school is seen as Failure; I have seen parents become bitterly disillusioned when it becomes apparent that their childs needs can really only be met at a Special school, and this saddens me. Other parents can find themselves guilt-tripped out of even considering it by the feeling that they will be somehow selling their child short, or letting them down, if they choose Special school.
I’ve been doing the school run for fifteen years now, and in that time I’ve had two children in mainstream school and one in SEN school, and if there is one thing I have learnt it is that SEN 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. It 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 SEN are, in a sense, two different animals, and one is not less than the other.
I love that 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.
I love that all the staff in his school are specialists in SEN, and are aware that our children may need to be learn and be taught in different ways. I love that 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 when neccessary.
I love that 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.
I love that all the staff have great experience in dealing with challenging behaviours in a calm and constructive manner. I love that they know how to discipline children with additional needs effectively, and that they have certain expectations of the children, and know how to communicate them in a way the children can understand.
I love that 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. Likewise, I love that Freddie gets certificates for things like ‘giving his seat to a friend’ or ‘being helpful’, or ‘joining in’. I love that they gave him a ‘Kindness Award’. I love that they acknowledge the children’s positive personal qualities. You might think that this is to be expected in a school where all the pupils have some degree of learning difficulty and are not expected to acheive academically, but wouldn’t this be a good thing in all schools? You see, THIS is where I have deep misgivings about mainstream school, not just in regards to inclusion for disabled pupils, but in general.
My older children and their classmates were pressured relentlessly to acheive particular, very specific, results – latterly this pressure was to acheive A* at GCSE and A’ level. No other result was considered an acheivement worthy of note. My elder son was told by his Maths teacher that if he ‘only’ got an A he would be made to resit until he got an A* Maths was not, and never had been, his particular forte, and yet he was being expected to perform at the same level as pupils who’d been mathematical whizz-kids since the day they started school. Because, of course, all typically-developing children have been popped out of the same typical mould and are all exactly alike. Aren’t they?
Believe it or not, there are some young people in mainstream, some typically-developing young people, who do not pass any GCSEs. In a system that only recognises academic acheivement (and then only within a narrow definition) how can such young people have any idea of the personal qualities they possess that might carry them forward in life? In my day they would have at least got a reference from the Headteacher; a letter detailing the positive attributes they had that might make them a good employee. What do they get from the current system, apart from an abiding sense of having failed before they’ve even started? I do think that school ethos is one area where SEN schools like the one Freddie attends are getting it right, and mainstream schools are often falling far short of the mark.There is one complaint I have about Freddie’s school though: while I love that they strive to make learning not just accessible, but also fun, by having ‘themed’ activities, I do wish they would teach their pupils, in advance of being allowed to go to school dressed up as a pirate, that pirates DID wear underclothes. I had the devil’s own job persuading Fredie that he had to put pants on before he could put his dressing-up clothes on. They nearly got a commando pirate!
It’s that time of year again – school report time. With my older children, I always joked that I would go through the report with my red editing pen, pick out all the typos and grammatical errors, and send it back marked out of ten. I often had a sneaking suspicion that some of the teachers hadn’t the vaguest notion who my child was, so they just wrote something non-commital, and open to interpretation, in the hope that it would sound approximately realistic.
I know most parents take school reports very seriously, and indeed they are meant to be a taken seriously, as an informed guide to your child’s progress, aptitudes, and ‘weaknesses’ that need addressing, but I always had a (possibly unhealthy) disrespect for teachers in my school days which does not seem to have abated in adulthood. But when it comes to Freddie’s school report, I can’t help chuckling at some of the comments, so much so that I’ve put the red pen away.
He attends a SEND school: it’s small, barely a hundred pupils in total, with only nine in Freddie’s class (and three staff). The focus is very much on individual progress. Reports are personal – you can tell that the teacher really knows your child, and all their quirks and funniosities.
Here are my favourite remarks from this year’s report:
But my best favourite has got to be this one:
Once again his school have made a point of noticing positive personal qualities that have nothing to do with academic achievement , but are very important in everyday life. Often people have a very negative preconception of SEND schools, but I think mainstream schools could learn a lot from the ethos of schools like Merryfields. Not all pupils are academic, but all have positive qualities, skills and aptitudes if you take the time to notice: and we should.
I will be resharing an old post about why I chose SEND school:
Once upon a time, in an era not so very far away, it was believed that people with Down’s Syndrome were ‘ineducable’ – in other words, education was wasted on them because they could not respond to it. Even medical professionals gave this out as fact: and thus, no statuory provision for their schooling was made.
We now know that this is a myth. It has been proven to be a myth – nowadays all children with Down’s Syndrome go to school. But the belief persists among some sections of the general population. You made have heard it yourself. And it is natural to worry, when your child is diagnosed with a condition that brings learning disability as part of the package, about whether or not he/she will acheive the golden milestone of learning to read and write.
Don’t. Children with DS can learn to read and write, and the majority do.
Freddie, I would estimate is somewhere in the middle of the ability range for a person with DS, and may or may not have some autistic traits, but at the age of seven is already on the road to literacy.
Children with Down’s Syndrome struggle with verbal/auditory short-term memory, BUT they are good visual learners. In fact, when information is presented in visual form, their information processing skills can be in line with their non-verbal mental age. So reading, like using Makaton and Signalong, is a great way to help support the development of their verbal communication skills – because it links sounds with a visual image of an object/concept, which, being easier for the child to process, helps them to understand and remember the sound (word) that goes with it. It’s a kind of ‘showing’ and ‘telling’ at the same time.
I’ve read with Freddie since he was born (as with my older two). It got me some funny looks from other mums in the neonatal unit – really the only time I’ve been concious of being stared at – sitting by the incubator having ‘kangaroo time’, with an old baby book of his sister’s in my free hand.
He’s always loved to look at books and handle them. Yes, some got damaged, and a few were utterly destroyed, but we chalked that up to ‘collateral damage’. We were lucky to have a large stock of pre-loved books from his brother and sister – they’s already served two children, so it wasn’t the end of the world. And he grew out it; I haven’t seen him nibbling a book in nearly a year.
He tended to gravitate towards books with bold illustrations: perhaps because he is very visually orientated, and perhaps because , like many people with DS, he may have reduced visual acuity, even with his glasses on.
I think that school are teaching him to sight-read, that is: teaching him to recognise whole words, rather than by their phonic components. It certainly seems to be the way he does it, and I have learned that is the way that children with Down’s learn to read best – perhaps because, as part of their communication profile they tend to have difficulty learning the sound-structure of words. But here’s the great thing – when he reads aloud to me, if he comes across a word that he does not recognise, he doesn’t get disheartened (as I have often seen ‘typical’ children do), he just asks me what it is and then repeats it. I know we’ll have to do this many times until he can reliably remember the word, but it doesn’t matter to either of us, because we know we’ll get there in the end.
Another thing I have noticed, and it’s one in the eye for those who are adamant that ‘screen time’ of any sort is detrimental to children, is that he responds much better to a book or story once he has seen a visual version of it – such as a television adaptation. He adores reading The Gruffalo and Room on the Broom having seen the TV animations, and even managed to sit through a stage production. But he wasn’t at all keen on reading Stick Man until it was on TV this Christmas.Now he can’t get enough of the book.
At the top of this blog it states that it is about ‘Down’s Syndrome, my family, and me’. My purpose in compiling this record is to demonstrate that people with Down’s Syndrome, and their families, can and do enjoy excellent quality of life on a day-to-day basis. We are very ordnary: we are the rule rather than the exception.
The fact that our youngest child has Down’s Syndrome does not dominate our lives to the exclusion of everything else. Freddie is just one part of the complex organism that is the Fender family (there is also some ‘neurodivergence’ within the family so, yes, it is complex). I have two other children, and a husband (and a dissertation to complete which, so far, shows no sign of writing itself -how inconsiderate), and so I make no apology for talking about something other than Down’s Syndrome today.
I have been lucky enough to be a stay-at-home mum, and I have enjoyed every minute of it. I have heard it said that staying home with the children is harder than going out to work. I disagree. I have always been mindful of the fact that not only was I my children’s primary carer, but I was also their first teacher. I hope I taught them well: I tried my hardest.
Despite having made the family my sole focus all these years, there are some parents who, I know, think that I am lackadaisical about parenting almost to the point of neglect. Why?
Because I allow my children too much freedom in making their own choices. I put them at risk of making a mistake.
For instance: my daughter is in the process of choosing which A’levels to study, and where to study them. I have given her my opinions, I have given her some advice to consider, but ultimately the decision will be hers. I trust her to make this decision. I know she hasn’t much life experience, but who knows the inner workings of her heart and mind better than she does herself? And if it turns out that she hasn’t made quite the right decision this time, then I will be there to help her pick up the pieces and start over. A mistake is rarely the end of the world; it is usually a valuable learning experience that brings us a step closer to the things we really want, or need.
Many of her peers had their GCSE options chosen for them by their parents. They have also had their A’level choices dictated to them, and their place of study, even though they themselves have different ideas of what they would like to do. One or two have even got a career path ready mapped out for them. I know these parents only have their children’s welfare at heart. They think they are doing the very best for them. I, though, can’t help but feel sorry for these kids, set down, tram-like, to run in the grooves of a predetermined course through life, with no opportunity to go ‘off-road’ and explore their own character and potential. How are they supposed to flourish under that wieght of expectation? How can they step forward in life unafraid to take opportunities or try things out, if they believe that making a mistake will be catastrophic? How can they bounce back if they have never been taught to bounce, or have never heard that bouncing is an option?
Children are not simply extensions of their parents, they are unique, and often surprising, individuals. Watching my own three grow and develop their own particular personalities, interests, abilities and quirks has been an endless source of fascination and ‘who’d’a thought it’ delight. I packed my eldest off to university last September. Despite his grandparents enthusiastically urging him to ‘go into computers’ at least once a week since he was about five, I am pleased to say he has taken not a blind bit of notice, and has pushed off to study languages, having discovered an unexpected aptitude for them in High School. As a person whose ability to speak other tongues begins and ends with just repeating English words more loudly, this is both bewildering and wonderful to me. Hopefully he will end up doing something he loves for a living, and it may well be a career that neither me, nor his grandparents, ever knew existed.
A mother’s job is not to raise children: it is to raise adults from children. Adults who are ready to make their own decisions, make their own mistakes, and having learnt from them, find their place in the world. The only ambition I have ever had for my children is that they acheive a sense of deep contentment, and I believe that in order to give them the best chance of doing so, I have to allow them to discover who they are. I will go along with them for the ride, and to make sure someone has their back if the road gets rough.