Where kids go to school

Eli started school in September. It has made me think a lot about how we educate kids with disabilities.

Eli’s school is a short walk away from home. It is a typical inner city state primary. Unremarkable for being similar to lots of other schools in London. Remarkable for being like many other schools which are also educating loads of kids with different needs, languages and backgrounds. I have been consistently impressed by how they have calmly settled thirty new kids into school and appear to be totally in control, while I struggle to keep three kids in any kind of order at home. Eli has been learning at a furious pace – generally uncommunicative about his day, he’ll then slip in some comment about how to spell a word, or write something, or tell us about numbers in a way that shows he is really soaking up the things he is being taught.

One of the reasons I liked the school when we originally looked round was because it seemed to accommodate difference well – it has specialist provision for pupils with autism, it has a dyslexia centre. It has the kind of diversity of kids you would expect of an inner London school. I believe these things are important.

(Sidenote: a teaching assistant who we loved at Sam’s old school once told me she chose her non-disabled daughter’s school based on it having a lot of kids with special educational needs and being well known for inclusion. People like that make the world a bit brighter.)

Out of the classroom, and purely by chance, it turns out we live on the same road as two other kids in Eli’s year and as we all troop up and down the hill every morning we have got to know each other. So within weeks of starting school Eli was being invited over, and James and I were getting to know other parents. We bump into parents from the school in other local places and stop for a chat. Apart from this being really fun for Eli, it has meant us being able to ask for favours; when Sam was ill, another mum collected Eli for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Eli starting at a school where no-one knew Sam. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Sam are lying in bed. Sam’s disabled and my bed isn’t that big so he sleeps downstairs’. Within the first half term the whole class had watched videos of Paralympic athletes and discussed overcoming adversity. As the teachers said at the time, the kids were too busy being impressed with Jonny Peacock’s speed to notice his lack of leg. Eli has the confidence to explain Sam’s disability when he needs or wants to and he knows it isn’t negative or something to be self-conscious about, it just is.

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So far Eli’s school is everything we hoped it would be. It is enabling the small ordinary interactions of living in a community. And in that respect, it is really – and unavoidably – different to Sam’s school experience.

Sam goes to school five miles away. It’s a really good school, and he’s there because we think it’s the best school for him right now. It takes about an hour each way for him to travel there and back every day. That is not that unusual – kids at Sam’s school come from all over London, in every direction.

James, a carer or I take and collect Sam two days a week. We chose to do that, so we see his classroom and his classmates, and have chats with his teachers and assistants. The other days he gets a school bus, like almost every other child in the school since. We rarely bump into other parents at the school.

Years ago, we looked at Eli’s current school as a school for Sam. They were willing to consider it, but he would have been the only physically disabled child in the school and they had no track record of teaching a child like him. We decided it was better for Sam to go to school further away that had proven expertise in teaching children like Sam, in helping them to communicate and in maximising their potential.

We think this was the right decision for Sam, but it means we removed him from his local community. It is only through our efforts to engage him in local activities outside school (and my reliably local family) that he will have any sense of belonging in our little bit of south London. As I have written about before, life is all about human connections and this is more important, not less, for children with disability for whom interacting is challenging.

In some ways this is where Eli comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Sam is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers,meet Sam and then recognise him in the street. They ask questions and get to know him. We take Sam to the Christmas Fair at Eli’s school, where he meets Eli’s teachers, other parents and kids, and really enjoys the Salvation Army brass band (obviously).

As ever, the path of inclusion never runs smooth, and Sam couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Eli told Santa he needed a present for his brother, who is disabled, and wasn’t there, and Santa handed it over. They both got books about the Lego movie so we are all now clear about exactly why Vitruvius (not that one) is so amazing.

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There’s an argument to be made that it makes sense to group children who need specialist input together (and no-one appreciates the expertise of really specialist teachers, speech and language therapists and technologists more than me). That it makes sense to have a critical mass of similar-ish kids in a school together. It’s kind of obvious, and I have sympathy with this point of view, not least because kids like to be with their peers and for some children, perhaps being the sole physically disabled kid in a school is not necessarily that bolstering an environment. I think it works well for Sam to be somewhere with kids that communicate like him, and professionals experienced in teaching kids like him.

It’s not good enough that at 8am every morning hundreds of children with special educational needs are being bussed around the city, sitting in traffic jams while they try to get an education, driving past the local kids who could have been their friends. It’s not good enough that the families of the kids on the buses don’t get to know local parents. How otherwise are they supposed to forge the kind of friendships that are based on mutual understanding of how you feel at 9am having used the cross voice at least five times to ask your child to put on their shoes/not get run over by a motorbike/stop walking on that bit of wall, when you have run to school as you tried to keep up with your child scooting too fast down a hill, and are now wondering if someone is going to give you a medal for remembering the bookbag?

Obviously, calmly loading your older child on to a bus arriving at your house at 8.15am can sound attractive in comparison to the 9am chaos, but is it right? Is it really the right way to organise an education system? Is it fair for disabled kids? And are we really doing right by our non-disabled children?

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(Unconnected, cheerful picture)

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Advice

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Late last year I gave a talk about Sam and myself to about eighty paediatricians taking part in a training day at the Royal Society of Medicine. I had twenty minutes to give ‘A Parent’s Perspective’. The main challenge was to edit sufficiently to fit within time – given the opportunity there is much I can think of to say. If I were allowed to do Mastermind with Sam as my specialist subject, I would blitz it.

They were a receptive audience and gasped (‘Sam had 157 appointments last year’) and laughed (niche jokes about junior surgeons’ lack of interpersonal skills) at the appropriate points. I was asked a number of very perceptive questions at the end, but I was really struck by one:

“What do you wish you had known, or had been told, when Sam was born – and what would you advise someone just starting out on a similar kind of life to yours?”

I didn’t immediately know how to answer this, but after a momentary panic in front of a large audience, I thought of something and here I will expand on it.

When Sam was in hospital just after he had been born I was expressing breastmilk for him, something I was finding relentless and dispiriting. A breastfeeding support worker put me in touch with a woman I will call E, who had expressed for over six months because her child had difficulty feeding.

Once Sam came home from hospital I couldn’t keep up with a brutal regime of pumping, bottle-feeding, tube feeding and sleep deprivation, so I stopped expressing milk. But by that time I was in touch with E anyway, and she came round for a cup of tea. She told me she thought I was doing brilliantly which was incredibly encouraging.

Meeting her in the first few months of Sam’s life was hugely important. Her son was very different from mine, with a totally different condition, but there were similarities between our lives – not least the shock of realising things are not (and probably won’t ever be) as you expected.

Most importantly, she was heavily pregnant with her second child. The idea that she had been able to accommodate all of the difficulties of her first child sufficiently to decide to have another one gave me hope. Not just that it might be possible to have another child, but that our lives might one day be as optimistic.

I stayed in touch with E and we met periodically, through my emergence from the fug of the aftermath of Sam’s birth, and the births of my second and her third child. It was comforting and fun.

This kind of camaraderie is not unique to parenting a disabled child – much of the success of NCT is because new parents need solidarity and someone who understands the challenges and joys of a brand new baby. But finding yourself talking to a parent of a disabled child is a bit more niche and therefore perhaps a bit more special. There is huge solidarity and comfort in talking to people who have experienced similar difficulties to you, who you don’t have to explain everything to. It is most uplifting if those people are thriving, but actually any contacts will do.

I have since met many other mothers of children who are disabled, complicated or simply non-typical. I tend to find these conversations are accelerated – with no need to do as much explaining, we will very quickly be discussing private feelings and traumatic experiences. We recognise the similarity of our lives, and our subject matter touches on all of the most intimate and important aspects of being human: what your priorities are, who you were and who you have become, how and who you love.

Or sometimes I’ve just had a chat about purely practical matters. No deep connection, but getting the number of a good physio is valuable. Sometimes having a disabled child in common is not enough, and someone is just not my kind of person, but that’s fine. Sometimes things are not going very well and I just need to hunker down and get through it, not talk to anyone.

Over the years these acquaintances have come in many guises – friends of friends, women from the supermarket, bloggers, parents accompanying their children to sessions at Small Steps or fellow students on a course. I have valued these connections hugely.

So if I met myself five years ago, I would say find some friends who have been in a similar position. Either online or in your city. There are people who have survived a life like yours, and many who have thrived. You are not alone.

(You could always send me an email)

P.S. These photos were taken by my brother-in-law, a paediatrician, who attended the conference. People thought he was really weird and a bit obsessed with me and Sam until they realised he was related to us.

P.P.S. I think of my approach to make-up as quite restrained. These photos would appear to show otherwise.