EVERY WORLD DOWN’S SYNDROME DAY SINCE 2014, JAMIE McCALLUM HAS WRITTEN FOR THESE PAGES ABOUT THE JOYS AND CHALLENGES OF RAISING A CHILD WITH THE CONDITION. NOW ROSIE IS FOUR AND NEARLY READY FOR SCHOOL, WHAT CAN SHE TEACH US ABOUT THE WAY WE EDUCATE OUR C
I’M sorry to say that your child has a condition. If you choose to go ahead with the pregnancy, she will have a 42 per cent chance of developing cancer in her lifetime, a 17 per cent chance of a stroke. Here is a leaflet detailing many of the other risk factors. We have a termination slot booked for you tomorrow morning in case you need it. The decision is entirely yours to make. We will support you whatever you decide to do.”
Imagine you and your partner are at your 20-week pregnancy scan. A sombre medical professional takes you into a room and delivers this news. What would you do? Continue with the pregnancy? Take the termination slot? Perhaps you need time to think about it more deeply. If you’re taking time to think then you’re at least considering the possibility that these risks are not a burden you wish to take on.
What if I now told you that the condition in question was the human condition? That these risks are the average human risks for these diseases, so every child arrives with those odds? That if you were considering taking that termination slot, then it was for a healthy child? You see, labels matter. When people are dehumanised with labels, like a bunch of statistics or the name of a condition, they become that condition before anything else. It’s almost impossible to form a balanced view because the other side – the positive side to having any child – is hard to put into words, let alone bullet points in a leaflet.
Our daughter Rosie has Down’s Syndrome. It’s a condition that people see first when they look at her. The label follows her everywhere she goes and always will. She turned four this month and, since she was a year old, I have followed her journey on these pages around the time of World Down’s Syndrome Day, March 21.
My wife Victoria and I are not just parents of one child with Down’s Syndrome, but of three children. Rosie’s sister, Abigail, is six. Her brother, Gregor, is two. The biggest challenge of this last year has been weighing up the complex family jigsaw puzzle presented to us when deciding which school would be best for Rosie to attend in 2018, and consequently, which nursery she should be in right now.
However, as I sit here writing that claim about our “biggest challenge”, all three kids go screaming past me on a toy horse, with Rosie dressed as a ladybird. Right on cue they remind me that the truly greatest challenges following her arrival remain the very ordinary challenges faced by all parents just to get through most days. If you witnessed Professor Robert Kelly’s BBC News interview being hijacked by his children last week, then you can derive some sense of life in our house.
As well as assessing how inclusive schools are and which is the best fit for Rosie’s development, Victoria and I have had to think about the effect of our decision on the whole family. What about the logistics of two separate schools? Might we need to move closer to an establishment that suits Rosie’s needs? Then we felt very guilty considering how that might affect Abigail, who’s already settled and in primary two.
For her part, Rosie appeared to adapt happily into every nursery school environment we visited within moments. “Sandpit? Check! Other children to play with? Check! Right, I’m in!” So much so that we often questioned whether making her the focal point of this family decision was the right thing to do at all.
Looking for a school suited to a child with special educational needs (SEN), we experienced a side to the education system that most people seldom need to think about. It’s also the first scenario we’ve encountered where Rosie’s “label” became significant.
“How did she get on?” we asked after her first day at nursery.
“Well, I have another five children to look after you know,” replied the teacher.
Many weeks later, the same teacher was describing how watching the children all playing together with Rosie and having a great time melted her heart.
Rightly or wrongly, people see Down’s Syndrome first (which they view as a bunch of problems) and Rosie next. Once they see past her condition, they don’t love her “just the way she is”. They love her because of the way she is. There’s a difference. Down’s Syndrome is her genetic profile. Every cell of her body is made of it. It is her and she is it. It’s not an illness. Wishing she didn’t “have” Down’s Syndrome would be a complete irrelevance. Like wishing your Chinese friend didn’t “have” being Chinese. Or like you wished for a whole different child in her place.
While we’ve been evaluating schools, the Scottish education system has been under the media spotlight accused of failing children with special needs. This was triggered by Enable Scotland’s 2016 report #IncludEd In The Main?! which contained some damning statistics on the government’s inclusion policy.
At the moment, Scotland’s education system has a presumption of mainstream schooling for all children. Special needs requirements are assessed and plugged into the mainstream environment as required. Support bases are available for different specific needs. Split placements between mainstream and special needs schools are also commonplace. It’s all part of the approach known as GIRFEC – Getting It Right For Every Child.
As I’ve written before, the effect of this approach on the feeling of inclusion for the SEN kids, their social development and the inclusive attitudes developed by the other children has been very positive indeed. However, I’m now starting to wonder if this policy has been a brief nirvana that is unlikely to be sustained for much longer. The trouble is, when money is tight special needs support falters. Without support, you simply have children with additional needs thrown into mainstream classes. This puts an increasingly high demand on one teacher to educate a full class across multiple levels of learning abilities and support needs. Then everyone loses. This, it seems, is what is happening.
The result is that children like Rosie are not always welcome. I don’t believe that’s because the teachers don’t want pupils like her. I think teachers are conflicted. Most genuinely want to be inclusive, but don’t want to fail the children – which they know will happen if the support is not there.
They’d be right, too. It’s hard to imagine that you could ever claim you were “Getting It Right For Every Child” when integrating SEN kids without plugging in the right support. If it then causes a knock-on effect to other students then you’re getting it wrong for most. If this trend continues, it’s inevitable that SEN children become a hot potato whom schools would rather not take on at all. Thankfully, this still seems to be in the minority of cases. In our quest to find what will work best for the whole family we’ve visited many schools. We’ve met passionate, keen, enthusiastic, inclusive teachers. But we’ve encountered some discouraging attitudes too. In making up our minds whether a school was right for our child, sometimes what turns out to be important is what is not said, or the tone of the conversation, rather than its content. As a parent, sometimes all you really need is a sense that the school genuinely wants your child to go there. This is how you feel when the teacher in front of you is bursting with enthusiasm about the new initiatives and specialist training that the school might undertake to help Rosie. If, instead, they focus on problems that haven’t happened yet – such as them calling you into the nursery if her nappy ever needs changed – then it’s definitely not how you feel. On this front, I feel like our education system is regressing. Yet I attend my older daughter’s school and see immense progress in teaching methods and the use of technology compared to when I was there. Where education is concerned, however, it’s important that govern- ments sustain progress on all fronts – not just the areas that deliver efficient automatons for the workplace. Education should be for more than just that. If we want to fend off “the robots taking over” then we need to strive to be more than robots ourselves. Our value is increasingly measured on a set of scales with productivity on one side and cost-to-maintain on the other. Admittedly, it’s possible that Rosie’s scales may be tipped in the wrong direction for that model. A non-viable human, in some people’s opinion, with the rich diversity benefits that she brings quashed by formulae in a spreadsheet. What about happiness – remember that? What consideration do governments give to what people contribute to increasing happiness in society?
IF the contribution of happiness were truly a barometer in common use then babies with Down’s Syndrome would be the new designer babies. In our house, barely a day goes by without some kind of hilarity. There’s an unmistakable cry that goes up, whenever some Rosie-based mischief has occurred. On hearing it, you’ll inevitably discover Gregor somewhere like the cat’s cage, having been lured there by Rosie, who then locked him in and ran away.
If society were operating as it should, you would assume that knowing the ideal solution for our daughter’s education would make it just so. Then you realise the budget is not available. Our education system in 2017 is not ideal. It is make-do.
On Rosie’s fourth birthday, with a school decision looming, we found ourselves looking back on some of the hospital photos from the day she was born. In the most irrational way you can imagine, I became spontaneously upset. Seeing those moments again, that hospital room, the family visitors, my forced smiles for the camera. I never envisaged when I enabled Google photo backup that it would one day serve as an emotional time machine triggering a kind of post-traumatic stress disorder. It might sound extreme, but as readers of my first Sunday Herald article will recall, discovering our daughter had Down’s Syndrome really was that much of a shock to me at the time. It was as though our world had come to an end.
Four years on, it turns out that the messenger of destruction was a happy, mischievous wee girl. A cunning disguise.
I suppose what is upsetting now is how unnecessarily upset I was then. Because the pictures don’t match the memory. They aren’t showing a nightmare at all. They’re showing a beautiful baby in a maternity ward and family visitors. There’s no nightmare. No suffering. All that was needed was a different mindset and I’d be recalling a very different emotion now.
Perhaps I’d have had the mindset I needed if properly supported SEN integration had been around in my school days. It is a gift that we should insist on giving as a legacy to future generations. No-one should lose the cherished memory of the birth of their baby girl because of ignorance.
If only my smartphone’s time travel capabilities worked the other way. I’d send the 2013 me a message to show him how far he’s come. I know that he’d find the most surprising aspects of our lives to be those which are totally mundane. I’d show him a normal birthday party where he’d see his beautiful daughter wearing her new mermaid dress. He’d also marvel at how terrible his parenting got in four years as he witnessed his kids eating birthday cake for breakfast.
Rosie has arrived at an incredibly complex and polarised time for her condition. On one hand, the opportunities have never been greater and, for all its reported failings, our education system is still offering her a genuine opportunity to integrate and carve out a fully independent life for herself. On the other hand, we hear credible ethicists advocating screening, termination and, if all else fails, infanticide for children with her condition.
It’s an exciting and daunting time for us all because we’ve been able to arrive at a decision and, next year, Rosie will have a school that wants to have Rosie. I knew it was right when Victoria arrived home in tears of joy and relief recently because of the school’s proactivity and enthusiasm.
We simply want Rosie included, not excluded. Taught, not babysat. We want her to have real friends – both typical children and children with challenges. To play. To grow as a human being. To learn to function in society. To be capable of working. To value herself. To respect others.
As I take a step back and read those aspirations it makes me realise – that’s nothing less than we should want for every child. If that’s true, we should fund an education system that delivers it.
Rosie, right, and above with sister Abigail, brother Gregor, dad Jamie and mum Victoria Photographs: Kirsty Anderson