‘My Brudder is Bisabled’

This is an elaboration on an Instagram post from May. You can follow me on Instagram for cute photos of my kids and occasional thoughts @jessmox

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Molly helped me as I was putting Ben’s AFOs on one morning (AFO: ankle-foot orthosis – a custom made plastic splint to support the foot and ankle and keep them straight) by picking them up off the floor each time Ben kicked them off. As she climbed back up, she asked why Ben was kicking her in the face? We had a chat about Ben being disabled and I told her that her brain is in her head and it tells her legs how to move, and the messages between Ben’s brain and legs get confused. She’s 3. She listened and moved on.

I think so much of the cause of people feeling disability is unfortunate, bad or alien is because they don’t have the language to discuss it. If adults don’t use straightforward language to talk about disability with kids, and rather refuse to discuss it or use opaque, unfamiliar words, it reinforces the idea that there is something to be scared of or intimidated by. They get the impression there is something awkward that parents don’t want to discuss. Kids are never too young to be given the words to describe different kinds of people. These conversations can be just as cute as any others: ‘my brudder is bisabled!’

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I don’t pretend to speak for everyone on this issue. The rich variety of humans means people like to be called different things, but disabled is a descriptive term not a slur, and it is the most appropriate word to describe Ben along with boy, child, white, male and awesome. Disabled is a political term used to describe people who are disadvantaged and excluded because of their impairments.

Other people would like to be called other things, or parents would like their children to be called something else. I have friends with children with learning difficulties who would describe their children as having special needs. Some adults would not like to be described as having ‘special needs’ since they would say their needs aren’t special, they are specific.

I have read pieces by disabled people talking about how horrible it is to be stared at, and other pieces saying parents should never tell a child to look away from a disabled person – that this compounds a sense that there is something to be embarrassed about. I know that having a child who points and stares at someone, possible saying something deeply uncomfortable very loudly, is awkward. It can be embarrassing. I also know that having a child who is stared and pointed at can be painful.

But most people don’t take offence at children. Parents are often embarrassed because they realise they don’t know what the right thing to say is and they know they are unprepared for this discussion and perhaps are realising how little they have taught their children about disability and inclusion. Children are often pointing out difference and asking straightforward questions which can be quickly and easily answered.

If you have tried to educate yourself in the terminology of disability and taken time to hear disabled people’s stories you are likely to be less intimidated by getting language wrong. The best way of dealing with all of this is to ask people, or parents, what words they would like to use. You don’t need to know the correct word to describe someone to say hello to them.

I have explained to many children that Ben is disabled – that his body works differently and he cannot always control it. I have answered questions about why I am connecting a tube to his stomach and pushing water through a syringe, or why Ben is dribbling, and how his eyegaze computer works. When children ask these questions their parents often look panicked, but kids are inquisitive and I am happy to explain all of these things because none of it is problematic. It’s all really quite straightforward. A lot of it is technologically amazing.

Molly had a friend come to play today and she showed her some teddies. One of them has a gastrostomy button like Ben. ‘This teddy is disabled’, she said as she showed her friend, ‘and this one is a monkey.’

There’s nothing to be scared of. If in doubt, smile and be kind. Let’s raise our kids right.

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Where kids go to school

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)

‘That’s disgusting’

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Ben was ill recently, which meant he was off school and had to come with me to take Max to nursery. He was a trooper, considering he had a fever, and was not as grumpy as I expected as we walked round the corner.

Max goes to Ben’s old nursery and since Ben only left a year ago lots of the kids (and most of the staff) still know him and are excited to see him. This means he gets greeted enthusiastically by various adults as we enter, and then lots of kids come over to him as we go in to the playroom. I think I enjoy this familiarity more than he does.

This time we entered the room with Max holding on to me, because he wanted to go home, such is the whim of a 3 year old who likes nursery. As I negotiated doors that don’t stay open, a wheelchair with one hand, and a clingy Max with the other, a whisper went round the room that Ben was here. A little gang of 2-4 year olds came over and crowded round Ben, touching his legs and holding his hands. Truth be told, Ben isn’t hugely keen on this level of physical proximity from a gang of small (unpredictable) small children, but it’s quite a lovely thing to watch.

Then, a girl (probably 3 years old) pointed at Ben’s face.

‘That’s disgusting’, she said.

She meant the dribble. Ben’s lack of control of his tongue and mouth mean he can’t talk or eat, and he also can’t control his saliva. He can’t stop dribbling, and in fact if he’s excited, nauseous or stressed (such as when six children are crowding him) his tongue whirrs around in his mouth, increasing the amount he dribbles.

‘No, it’s not,’ I said. ‘It’s just dribble. He’s dribbling because he can’t help it. Ben’s not disgusting.’

Then I dabbed his mouth with the bib he always wears, got distracted by Max’s ongoing emotional crisis, and the kids talked about something else. While attempting to engage Max in something that wasn’t holding on to my leg, Ben lost patience with all the hanging around combined with fever and children, and burst in to tears. Max started crying in sympathy (increasingly common these days – really sweet but emotionally taxing) and a lovely nursery worker came to take Max out of my arms so that I could take Ben home. It was a great little outing.

Obviously that girl didn’t intend to be mean. She isn’t old enough to realise any of the implications of what she was saying and is just repeating what she’s been told at some point. I mean, if we took everything small children said as insults, then the locksmith who came to our house yesterday might have walked out when Max told him he was a bum, rather than fitting the window locks which will hopefully prevent us being burgled again. [Side note: they stole Ben’s iPad which we rely on daily. It’s unfeasibly irritating.]

This incident made me think again about how we manage Ben’s dribbling. In the past we have put Hyoscine patches behind his ears, which dry up secretions and so reduce the amount of saliva coming out of his mouth. However, Ben has a tendency towards a blocked nose at the best of times, and after nights spent holding him next to a hot shower in order to clear congestion, we didn’t feel reduced dribbling was worth difficulty in breathing.

In the meantime, we’ve just got used to it. Ben always wears a bandana bib to absorb any dribble, it’s become his signature look. The amount varies hugely – some days he can wear the same bib all day and we barely notice an issue, other days the dribbling is almost constant. We dab his mouth with the bib without even noticing.

But mainly, we haven’t done anything about it because we’re not sure Ben is that bothered. He occasionally gets a sore chin, but it’s easily treated with cream. I’m not convinced that Ben realises he dribbles, and if he does I don’t think he thinks it’s a problem. There are options to surgically reposition salivary glands, or take or increase medication. or inject Botox. All of these would involve recovery periods, side effects or disruption. Is any of it worth it if Ben doesn’t perceive a problem?

Unless. Did he notice the girl saying he was disgusting? How often does that happen that we don’t hear or realise? People stare at him sometimes – is this because of his disability or because he’s dribbling? Would reduced dribbling reduce the staring, or decrease some people’s level of disgust? How big a deal is some dribbling – I come from the perspective of having recently toilet-trained a small boy, so a bit or dribble is not high on my list of horrible things. If you’re an adult and really offended by some saliva, maybe you need to piss off.

My instinct is that we don’t interfere until Ben is annoyed by his dribble, or becomes aware of others noticing it. We can’t put him through invasive procedures or risk side-effects of drugs because we, or others, don’t like a bit of saliva, but I’m five years in to a world of bibs and dribble and am perhaps uncommonly blind to the issue. And maybe I haven’t factored in the honesty and unintended insults of children.