In this blog I share my experience of being a parent to the wonderful, indefatigable Molly. We have read through it together, and she is happy for me to share it with you.
Values are important. Not just in an abstract, theoretical way, but in driving the decisions we make on a daily basis. No matter how pragmatic or evidence-based our decisions are, they will always reflect our deeply-held beliefs, for good or ill. I think this is particularly evident in education when so many of the challenges we face come down to values.
We describe the Trust in which I work as a ’values-based’ Trust. Although we sometimes struggle to define exactly what these values are in a meaningful way, I hope that they are apparent to anyone who knows us and works with us – integrity, inclusion, kindness, humility. Although they are values that are shared in the organisation, they are also personal values that mean a great deal to me.
The reason why we all behave in the way we do, why we adopt a particular set of values, is based on a complex mix of influences, events and predispositions that emerge not just over a career, but a whole lifetime. It’s probably rare to be able to pinpoint one event on its own that has had a profound effect, given that we are influenced by parents, community, schooling and lived experience. However, when I consider what drives my personal and professional values, I think I’m able to do that more than most.
Among the most seismic events of my life was the occasion when I was sat with my wife Sarah, our youngest daughter Molly, and her Cystic Fibrosis consultant at the end of one of our regular hospital visits (Molly had been diagnosed with CF from birth, but the condition was being managed brilliantly by the hospital). He gently suggested that some of the symptoms that we had observed in our 4 year old daughter – developmental delay, extreme anxiety, joint and movement problems, irregular heartbeat, among others – could be as a result of Williams Syndrome, a rare genetic abnormality affecting about 1 in every 30,000 people. Our initial response was scepticism, but as we heard the long list of symptoms, we realised that they described our little girl perfectly and what’s more, they explained why she was struggling so much to keep pace with her peers.
As we learnt more, we realized that this wasn’t a temporary condition, and that it presented some barriers to a ‘normal’ life that simply couldn’t be overcome. A significant learning disability is with you for life, there are some things that become more difficult to achieve, and there are some things that become impossible. Unfortunately, although your biology knows that, society doesn’t. The definition of a successful, fulfilled life that most of us would recognise was suddenly out of reach. As a parent, after the initial sense of loss and denial had worn off, I realised that if I wanted my little girl to have success and fulfilment, I therefore had to change the definition. That’s not a simple task, but it’s one that informs my work every day, and goes to the core of my values.
We know from our contacts with other parents of children with SEND that the experience of working with schools has sometimes been mixed. That hasn’t been our experience – Molly’s schools have done a wonderful job to provide sensitive and skilled support. She has worked with some unbelievably dedicated Teaching Assistants who have helped her with academic work but also provided love and care. Molly attended a mainstream primary and secondary school, before moving to a Special School 6th Form, and is now attending a specialist FE college – we have nothing but praise for all of them.
Despite this, however, our system finds it difficult to cope with children whose lives aren’t running on the conventional trajectory. At every turn, there are barriers, and very often there’s no way over or route around them. For example, putting a pupil with a significant learning disability through a system of GCSEs designed for someone completely different is exactly the same as expecting someone in a wheelchair to enter the triple jump – it doesn’t matter how well-prepared, supported or coached they are, it’s not going to have a happy ending. Who designs a system where the school performance tables benefit from SEND students achieving grade 1s and 2s in full GCSEs rather than achieving well in practical or entry-level qualifications?
When schools arrange 100% attendance reward trips, what about the children who have ongoing health challenges and frequent hospital appointments? How many autistic children have to go through the emotional turmoil of abject failure in a conventional class setting before the correct support is put in place?
Up until the diagnosis, I’d always been in favour of inclusion in schools on a conceptual, theoretical level, but Molly’s taught me what inclusion actually means – it’s not a policy stance, it’s a moral imperative for any society that has a claim to be civilized. It’s not a question of mandating that everyone does the same thing, or attends the same setting, but it is that we give equal value to every child, and equal worth to their achievements. It means that we never turn our back on a young person, even if our love has to be tough love.
A year ago, I sat in my home lockdown office and watched Molly as she left the house on her own to walk to the bus stop, from where she was catching the bus to college – on her own. It’s obviously a completely routine part of daily life for the vast majority of young people, but for Molly, that’s the equivalent of achieving ten Grade 9s at GCSE, scoring a goal in the Cup Final, or playing the violin with the London Symphony Orchestra.
Molly spreads joy. I don’t mean that in a condescending ‘Ah, isn’t she sweet’ sort of way, but by actually knowing how to empathise, by taking a genuine interest in others, by spending time and emotional energy on other people. She has a particular affinity with elderly people and people with disabilities, and suffers none of the social awkwardness that many of us experience when we meet people who struggle to communicate.
When societal attitudes towards the care sector began to change during the pandemic, I felt like cheering – if we lived in a society that valued the ability to connect with an elderly dementia sufferer and take a genuine interest in their life as much as the ability to manage an investment portfolio, Molly’s future would be assured.
It’s my job to make sure that the children and young people in my care succeed, and thanks to the brilliant head teachers and staff teams I work with, we do that really well. I celebrate when our students gain a place at a Russell Group university, or our primary SATs results reach new heights. But those achievements would be hollow if at the same time, we had students who we’ve permanently excluded and became involved in gang culture, or we’d deliberately guided students away from subjects that they had a genuine interest in because we knew they’d bring the results down, or we’d told parents that their developmentally-delayed child couldn’t attend their local school because there was no-one to change a nappy.
If a school ever turns away a pupil because they are too challenging, or too complex, or not clever enough, then no matter what they achieve, according to the value system that I hold, those achievements are empty. That means sometimes having to make tough decisions, but that’s where our values really matter. If we really want to know what drives a school, look at what they do for the most vulnerable members of the community, not what it says on the banner outside the school gate.