community

Where kids go to school

/ jess / 1 Comment

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

Max’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. Max 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 Ben’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 Max’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 Max 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 Max, it has meant us being able to ask for favours; when Ben was ill, another mum collected Max for me and brought him home. This is new to us and it’s brilliantly straightforward.

I was worried about Max starting at a school where no-one knew Ben. Of course I was wrong to be concerned – within the first few weeks he had described his family with accompanying photos: ‘Me and Ben are lying in bed. Ben’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. Max has the confidence to explain Ben’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 Max’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 Ben’s school experience.

Ben 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 Ben’s school come from all over London, in every direction.

James, a carer or I take and collect Ben 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 Max’s current school as a school for Ben. 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 Ben to go to school further away that had proven expertise in teaching children like Ben, in helping them to communicate and in maximising their potential.

We think this was the right decision for Ben, 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 Max comes in, as an unwitting but ever reliable social conduit. He invites his friends over, and then Ben is surrounded by boys playing with helicopters. Those boys, and their mums, dads, sisters and brothers, meet Ben and then recognise him in the street. They ask questions and get to know him. We take Ben to the Christmas Fair at Max’s school, where he meets Max’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 Ben couldn’t meet Santa at the fair because the grotto was up two small flights of steps. But never mind – Max 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 Ben 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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Extraordinary Bodies

/ jess / 2 Comments

Of the many things that change when you have kids, evening socialising is one of the most dramatic. James and I went from a pretty healthy social life to much rarer escapades, partly because it’s difficult finding people who we can train and trust to look after Ben, partly because babysitters are expensive. Going out is relatively unusual and totally lacking in any spontaneity.

I was therefore excited as we headed to Dulwich Park last Saturday night, for an open-air circus performance called Weighting organised by our local council. I knew it would involve disabled and non-disabled actors and performers, and we would sit on a blanket, and it wasn’t raining. I had high hopes.

I was not disappointed. In a week when the election result had not been what I had hoped for and I’d read a report about Ben that had been unusually pessimistic, this was the antidote to any and all negativity.

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The performance centred around a bridge which separated worlds, and upon which incredible acrobatics were performed. There was brilliant music, and a storyline about a father’s fear of letting his daughters out in to the world. The performers were lit by the sun setting behind us, and the audience was full of every (dis/)ability, race, age and gender. I was loving it.

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And then the Father in the show, who had a physical disability which made it difficult for him to walk and who I suspected might have cerebral palsy, started making his way on to the bridge amidst a storyline of him accepting his family must go out in to the world. He got most of the way up the bridge, slowly and carefully, and then leapt off the edge. Attached to a harness, he swung up and down suspended metres from the ground and looked so completely free, and it was so clear that he was enjoying himself, and IT WAS AMAZING. I did a lot of crying.

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Then the community choir started, signing along with the lyrics they were singing, and a children’s choir joined them. This did not help my tears dry up.

Both in its preparation and its storyline, this was a show about people, some of whom happen to have disabilities. About the part of London we live in which is diverse in every way. It was about hope, and not letting fear take over, and love, and joy.

The theatre company Extraordinary Bodies celebrates every body, disabled or not, and turns the very fact of its inclusiveness in to its greatest asset. From the sign language interpreter dancing while signing, to the council subsidising such an inspirational piece of theatre so it was free to all, it was an extraordinary performance.

At a time when it feels like disabled people are taking the brunt of austerity in countless ways, Weighting tells us what we need to remember. Let’s regard everyone as extraordinary, help each other, come together and find joy where we can.

Circles/Bananas

/ jess / 7 Comments

I’ve been on a training course for the last year or so, learning to be an ally to Ben. I’ll come back to what ‘ally’ really means in this context, but one of the things we looked at is Circles of Friends (sometimes called Circles of Support).

My (superficial) understanding of this idea is that it is a process to intentionally help people make friends – for people who are finding it difficult to make and keep friends on their own, who are feeling isolated. The key principles are that no-one is paid to be in the Circle and it is based on asking the focus person what they want (not what other, even well-meaning, people think they want). It’s mainly used for teenagers and adults. In practice, it means a group of people who agree to meet regularly and assist someone to fulfill their dreams and ambitions.

It’s a way of concentrating attention on the ‘focus person’ and trying to look at what that person would like from their life and help make that happen within their local community – it could be ‘going to the pub’, or ‘moving house’ or anything inbetween. There’s an example in action here.

I found it fascinating but not that relevant to us right now. Ben is 4, surrounded by friendly people at school, nursery and home; we’re not at that stage yet.

Last week it was half term and Ben and I went to buy some avocados. I went in to pay, leaving Ben in his wheelchair just outside, and as I handed over the money I glanced at him and he gave me a massive grin. As I looked away, I thought I saw him smiling at a man who works in the shop who was organising the fruit. When I came out again, the man said hello to both of us, smiled at Ben and offered him a banana. We all smiled a bit more, said thank you, and off we went to return home.

We have history with Banana Man (as I’ve just decided to call him). Last month, Ben and I went to the same shop. It was after school and Ben was tired. As we arrived, I put Ben’s wheelchair near the fruit outside the shop and at that exact moment a dog, which was also being left outside while it’s companion did some shopping, started barking. Loudly and insistently. Ben has trouble managing his swallow with his breathing and if things take him by surprise he can lose control for a bit, which throws everything out of kilter. In this case, the shock of the dog barking (and barking, and barking) meant he started choking. I quickly wheeled him away from the shiny ripe fruit by which time he was vomiting. So I take him out of his wheelchair and we’re both hunched on the pavement, when soon-to-be Banana Man comes up with loads of tissues and a concerned expression, asking if he can help. Actually there’s nothing to be done – I clean up Ben with the donated tissues and we head home (without any milk). It was an unfortunate incident for both Ben and my tea addiction.

We have a 2 year old, Max, who is a bold, bolshy boy. He’s loud and cute and we rarely take him anywhere without someone commenting (in a nice way) on him, what he’s doing, what he’s good at, how funny he is. Small children are fantastic social conduits and people who normally wouldn’t interact become chatty with Max around. You can bet your house that if you walk to the shop with Max, someone will acknowledge him at some point. That happens a lot less with Ben – he’s physically passive, he doesn’t talk and interrupts people less. Maybe people notice his wheelchair more than him, or they’re too busy thinking about bananas to notice how beautiful he is.

The banana thing made me think that tiny incidents like this are our small, less formalised version of a Circle of Friends for Ben. He can’t currently make friendships easily so these small connections are important to us – Banana Man knows who Ben is, smiles and interacts with him, and makes us feel like we belong in our little community. He smiled, and Ben smiled back, and that’s where a sense of connection begins. Mr Banana might not realise it yet, but I’m now rather fond of him.

Ben held the banana all the way home (no mean feat for a boy with a tricky relationship with his hands) and was very pleased with the whole trip. I am thrilled that the cheapest shop in our local parade is the one Ben is forging links with – if he’d picked the shop next door we’d be bankrupted buying £5 loaves of sourdough in an effort to encourage friendship.