Haircuts

Ben has always had abundant hair. When he was very little he had curly, light hair which his neurologist said reminded him of Harry Styles and when he was one it needed to be trimmed. He had that typical baby thing of very little hair in some areas and way too much in others. The curls were cute but the comb-over + mullet combination was disconcerting.

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I did what I had seen other people do and booked a haircut at a hairdressers that did special first haircuts. My mother in law joined me as we tried to entertain Ben while I did my best to hold him upright on my lap. His head was wobbly and I attempted to hold as far up his body as I could without getting in the way of the scissors. Sometimes I held the front of his head while she trimmed the back, or one side while she did the other. It was difficult and the hairdresser was perturbed by the wobbliness of it all, the difficulty of doing what she needed to do as quickly as she wanted to do it. We left with a shorn child, a certificate and a lock of hair. It wasn’t the landmark childhood moment I had hoped. It was an anti-climax – I’d expected to feel like despite his challenges, Ben had taken part in a rite of passage. A First Haircut, with documentation to prove it. Actually I felt like I’d wasted money on a stressful half hour where we had inconvenienced the hairdresser.

As Ben got older his hair grew straighter, longer and it got matted at the back where he lay down so much, rubbing his head from side to side since he couldn’t roll himself. He had an amazing side parting and swoosh of hair to the side, but it was annoying when it flopped into his eyes. A family friend who was a hairdresser offered to trim it at my mum’s house. As Ben sat in his highchair there, bolstered with rolled up towels and distracted by Cbeebies on an iPad, she worked her way around his head taking her time and letting his head loll when it needed to.

This was a good arrangement for us all and over the following years our friend would visit us at my mum’s or at our house regularly, taming Ben’s hair in exchange for cups of tea. As he got older his hairline established itself and it became clear that he was made for the sideburn like a very small, belated member of Supergrass. His hair grew quickly towards his face, and for a boy that is predisposed to being hot and whose body is in a constant state of wiggle, a helmet of hair didn’t help him cool down. Within a few months of a cut the hair would be back, in all its density and effortless perfection, or tousled imperfection.

When he was five Ben had an operation on his brain which meant his head needed to be shaved. In the pre-op consultations the surgeon had said they would do this in the operating theatre, but that we might prefer to do it ourselves first – partly to minimise the shock at seeing Ben freshly shaved post-op, and partly because the team were experts in neurosurgery but not hairdressing.

Our family friend visited us at home the day before the operation and cut James’s hair first while Ben watched TV next to them. When it was Ben’s turn we put an iPad on the dining table near the open doors to the garden. It was midsummer and there was washing drying in the sun as our friend put down her scissors and picked up her clippers. She started at the nape of his neck as she worked up and over the crown of his head, removing all of the glorious hair that had been his calling card since he was born. The surgery was too big and intimidating an event to really grab hold of, but sweeping all of his hair up from the floor felt dramatic and like we were unmooring ourselves from what we knew, taking terrific risks.

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Ben’s head wasn’t clean shaven – there remained a downy stubble of hair which was satisfying to ruffle and with one front tooth missing he looked entirely different and incredibly cute. Having been born with very little hair, Max was now three and had more gradually grown a similar mop to Ben’s though darker brown. But now Ben’s had disappeared and the brothers that had looked so similar looked completely different. Max looked even more dark, relaxed, undisturbed in comparison.

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Ben had bandage wrapped around his head for the week following surgery, the kind of bandage that cartoon characters have after running into a wall. When this came off we could see the patches where they had shaved the hair completely and stitched up incisions. Over the following months more of Ben’s teeth fell out and his hair slowly grew back but the texture and character was different. Even when the ridge of the scar was hidden, the hair around it was disturbed and you could see a ripple. The hair on the top no longer casually flopped to the side, it had vigour and grew up and out. After a night of Ben lying on his back, his hair would sit straight up like the frill of a triceratops and resist all efforts to be flattened. He didn’t need a haircut for a while but I watched the volume rise and the sideburns return, slightly darker, courser. When it came time for a haircut his hairdresser would not only need to contend with Ben’s near constant movement but now also the scars on his scalp. I was delighted to have his full head of hair back, but wondered how long we could manage it being cut. He hated being held still but it’s risky to have a pair of sharp scissors next to an unpredictable head. I wondered if the close crop would need to become more frequent.

It came time to find a new hairdresser and through a friend whose daughter also found it hard to keep still we found C. She also visited us at home and we would set Ben up at the dining table with a programme to watch and the headrest of his chair removed behind. C is fast and she found a way to dance her scissors around the ever moving target. Her speed meant there wasn’t time for Ben to get too frustrated or annoyed. I clamped his head still for the short buzz of clippers around his ears, but otherwise he wobbled and she coped.

When C visited this weekend she reigned in Ben’s sideburns and commented on how his hair has changed. Four years after the shaved head, the contours of the scars are invisible beneath his thick hair and the dinosaur frill is less pronounced. Some of the floppiness has returned. I trust C’s skill with her scissors and I paid little attention, chatting and making tea because I don’t need to be right there holding his head.

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Then it was Molly’s turn to watch her programme and get her hair dramatically chopped after she requested hair more like her brothers. She no longer wanted the soft, light, long curls that she’s had for the last few years and which I later swept into the bin. She now has darker, shorter hair. Not exactly like her brothers, because in the same sentence as asking for short hair she said she also wanted to look like Elsa so I was worried she didn’t understand the long term implications of a hair cut, but closer.

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I’m disconcerted by her new bob – she looks older and I have to admit she is no longer a baby – but she just wanted less hair. It’s not the precursor to surgery, it won’t take four years to recover, she just wants hair a bit more like Ben. It’ll grow back.

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Why The Times should be ashamed

You might have heard about an article in The Times on 14 October with the headline ‘Pupils lose out as £400m schools funding diverted to special needs’. It described how ‘children have been losing out’ because money is being ‘siphoned’ off to pay for support for children with special educational needs (SEN). It quoted a head teacher who said some parents saw Education, Health and Care Plans (EHCP) as a ‘golden ticket’.

Quite apart from children with special educational needs being ‘pupils’ too, it painted a picture of sharp-elbowed parents of children with SEN somehow gaming the system to get money at the expense of other mainstream children. The article suggested that the pressure of all of these pushy parents and their needy kids had meant councils had had to raid their mainstream education budgets.

I wasn’t the only one to find this article deeply offensive. It’s been widely shared and disparaged on social media. On 15 October the paper edited the article online and removed the ‘golden ticket’ quote, changing the headline to`Schools ‘struggling to meet cost of special needs support’. It is less inflammatory, but still talks about the number of pupils with SEN as having ‘surged’ and how much money has been ‘diverted’ from mainstream education budgets and the effect that has had on class sizes, staffing and resources.

This is such bullshit. It’s textbook victim blaming. There is a crisis in educational funding because we are years into austerity so there is less money for all schools so there is less support for children who need it. It’s therefore more likely that parents (and schools) will try to get EHCPs for children who need additional support because that will ensure additional funding to pay for the support. Possibly not enough funding or support, but some.

EHCPs are legally enforceable documents that set out exactly what challenges a child has to to learning, and therefore what support the child needs. It may be a teaching assistant for some proportion of the day, or access to specialist equipment, or physiotherapy. It’s all based on professional reports. No parent I know would enter into the process of getting an EHCP lightly – it’s a gruelling administrative process which most parents are doing for the first time.

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Getting my eldest son Ben his first Statement (the predecessor to EHCPs) was one of the most stressful things I have done and culminated in us negotiating every line of the document in the reception area of our local council’s head office because Ben was with us (no childcare) and children were not allowed in their meeting rooms. We got what we wanted, which was for him to go to a Special Needs school which had the expertise to help him communicate. We have been fortunate ever since – he has been at excellent schools and the schools have helped us with subsequent renegotiations of his EHCP. The system works well for him, though of course his school is under financial pressure.

Local Authorities have very little money, so they are trying to work out which bits of EHCPs are essential. It shouldn’t happen, but of course there’s rationing. An EHCP drafted by the local authority might include less of whatever the resource is rather than more. There is often a dispiriting process of negotiation between a parent and a local authority. If they can’t agree, the parent can take it through an appeal process and The Local Government & Social Care Ombudsman is currently upholding (ruling against the local authority in) 87% of the cases it investigates. It has said children with special educational needs and disabilities are being failed by the system designed to support them. This means children aren’t getting the support they need at the right time.

So The Times took a story about children with SEN being failed by the system designed to help them learn and made it into an article about blaming those children and their parents. It took a hugely complex issue and reduced it to dog-whistle headlines and inflammatory quotes.

Let’s be clear – all these children are trying to do is go to school and learn. Their parents are not asking for Ferraris and caviar for lunch. They are asking for their child to be in an environment where they can learn to count and read. It’s not their fault the support costs money and schools and local authorities don’t have enough. That’s the fault of central government, and it’s disgraceful.

I know parents whose children have special educational needs in mainstream schools and it’s almost impossible to ensure they are getting the support they need because schools are under so much financial pressure. It’s inevitable that more disabled children leave mainstream schools, either to go to special needs schools, or to other arrangements which are frequently less than ideal. Or they stay in mainstream schools but are not thriving, therefore requiring more support.

I have two non-disabled children. I think schools are best when they are diverse and inclusive. I want my kids to count and learn, but above all else I want them to be good people and I think you are less likely to be that if you have no sense of neurodiversity, difference and disability. In our family, Max sees children with special educational needs at school and home and that is how it should be. Molly had a disabled friend at nursery as well as a disabled brother at home.

Educational funding is being stripped to its bare minimum and that is effecting all pupils. If you think children with SEN are a drain on the system you are discriminating against children who need support to learn. It will be to their detriment, and we will have failed those children, but actually we’ll have failed all children. The Times should be ashamed of encouraging such a horribly reductive portrayal of a situation which is shameful to those in power, not parents trying to do the best for their children.

 

When the personal isn’t political

I don’t often write about overtly political topics. I worry that I’m not sufficiently informed and haven’t done enough research to have an opinion that I want to make public. But in the current political climate, where it seems the people who really should know what they are doing don’t, I’m going to weigh in on something.

David Cameron’s memoir, For The Record, is about to be published and of course the main story is about Brexit. I definitely do not know enough to put pen to paper about that.

He has also written about his son Ivan in the book and an excerpt was serialised in the Sunday Times last weekend (behind a paywall here). My son is different to his, but they both have cerebral palsy and having a disabled child is something I do know about.

Cameron writes movingly about Ivan’s birth and the difficulty of managing his health needs. He describes the difficulty of your child being anaesthetised for operations, having a feeding tube inserted and becoming expert in managing tubes and syringes. All of this rings true to me, including the new normality of feeding your child via their tube on trains and planes.

This is the reality of many parents of disabled children and he and his wife, Samantha, clearly loved Ivan and like all of us did what they could to give their son what he needed. They learnt fast and stretched themselves. They didn’t anticipate being parents of a child like Ivan but got on with it with grace and determination. Ivan’s death in 2009 was a tragedy and I can’t imagine how sad they must have been. The grief must have changed them in ways I can’t possibly realise and will never go away.

The way he has described the reality of his experience means I find it really hard to read his account of Ivan’s life without wondering how he has avoided making the personal political. 

Cameron writes about how difficult they were finding it to cope when Ivan was young: ‘I found the phone number of Kensington and Chelsea council’s social workers, and soon, to my great relief, one of them was sitting in our kitchen, notepad in hand, talking about the help that was available.’ He describes how grateful they were for the help they received from children’s hospices. He recounts how he had visited a constituent, before Ivan was born in 2002, who had a severely disabled child and wanted his help with the lack of care her daughter was receiving and that he couldn’t have known that he would find himself with a similar child. 

It is rare for anyone to have sufficient power to effect real change but surely the Prime Minister is one of them. After coming to power in 2010 Cameron began a programme of austerity which saw the steady reduction of all services for disabled children. The government attempted to distance itself from the effects of its policies by claiming that it was up to local authorities to fund services, whilst reducing the money local authorities received so drastically that it was impossible for there not to be cuts. I am talking about services like social services, children’s hospices, physiotherapy, occupational therapy and specialist equipment amongst others. 

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My son was born in 2009. Our experience of parenting him has aligned almost exactly with the reality of austerity, and for us it has meant less of everything. All of the services we access have reduced. Our experience is not unique. 

My son, Ben, does not have epilepsy like Ivan, but he does have a feeding tube and is entirely dependent on us for all of his needs, night and day. I have never had a social worker come round and talk to me about the help that is available. My most recent experiences have been being unable to get hold of a social worker at all. We have been assessed and we are eligible for the following over a year: funding for two hours of help a week (at a rate that is less than market rates) and ten days of playscheme a year (9am-3pm). We used to get transport to and from the playscheme which is in another borough, but that has now been cut. We used to get occasional nights when Ben could stay at a children’s hospice but since the hospice receives no statutory funding and our local authority will not contribute, that has been removed.

The occupational therapy team that oversees equipment in our home is so overstretched that it is at least four months before someone can come and check the fit of Ben’s bathseat when it is uncomfortable for him. When we need new slings, so Ben can be safely hoisted from his wheelchair to his bed, our local physiotherapist tries to help order them on the NHS system, which is not her job, because otherwise he will spend months being hoisted in slings that are too small.

When Ben grows too big for his wheelchair we will wait up to three months for an appointment to get the wheelchair adjusted because there aren’t enough wheelchair therapists. When Ben needs a new walker, which everyone agrees is useful to help him bear weight and reduce the risk of hip surgery in future, we will need to fund it ourselves. Same with the positioning system he needs to sleep. There is not enough money for these vital aids.

The NHS and local authority therapy teams are full of talented, kind people working really hard in difficult circumstances with reduced budgets. Our local social services team cannot prioritise families like ours because they don’t have enough money to go round.

This is nothing to do with Cameron’s grief, which is personal and painful and not my business, but everything to do with his experience of looking after a disabled child. I find it hard to understand how he can recognise the importance of the care and support his son and his family received without acknowledging that those resources are no longer available. There are now children who don’t have specialist chairs to sit in at nursery because they are no longer funded, families that get no respite and need to fundraise for physiotherapy. Very few families are being proactively offered help from social services. For most people, the personal is political and few things alter your politics more than having a disabled child. Cameron appears to have separated the two things entirely.

Don’t feel sorry for me. We are privileged to have the resources to mostly get Ben what he needs and this isn’t about an individual. But please, feel really bloody angry on behalf of all the disabled children who were born after David Cameron’s son. Cameron was in a position of power and he ensured that all of the families with disabled children that came after his got less.

A Blocked Tube

Ben’s gastrostomy tube blocked last week. I’m not sure why – perhaps a rogue lump of crushed medication – but it’s normally not a big deal. We keep a spare button at home and I can replace it easily. I do this roughly every three months anyway, and have been doing for the last seven years.

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(Unrelated selfie of us all having lunch at a service station to be thankful Ben’s tube was working fine on our nine hour journey from London to Lancashire over the summer.)

Ben doesn’t eat or drink. He has a gastrostomy which means he has a ‘button’ in his tummy which we connect a tube to on the outside and then conveniently push fluids, food and medication directly into his stomach on the inside. It is a simple yet amazing piece of medical engineering which allows us to feed him while bypassing his mouth.

The button is kept secure by a little inflatable balloon which sits inside his stomach and prevents it falling out. To change the button I can use a syringe to suck the water out of the balloon, except last week the valve that I connect the syringe to had fallen out. We found it in Ben’s clothes and replaced it, but it was bust. Not being able to deflate the balloon meant the blocked button was stuck there, which meant Ben couldn’t have the remainder of his breakfast nor any other food or water until we sorted it out.

These are the kinds of unexpected situations we find ourselves in. Compared to his button being tugged out of his stomach in Sussex and our only replacement being in London, or the horror of needing to reinsert nasogastric tubes when Ben was a small baby, this was not that big a deal. We haven’t had to do an A&E run for a while which has been good, and this wasn’t something we were very worried about. Ben was fine as long as we entertained him. We live close to a hospital so we packed some electronic entertainment devices and headed there to find someone who knew how to solve our problem. We took Max with us since his school is close by and reassured him that everything was fine. He didn’t really believe us because it’s not that normal to accompany your brother to hospital before you go to school.

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As we arrived at A&E, nice and early so mercifully quiet, James said, ‘I bet there’s some really simple low tech solution to this’. I called the specialist feeding nurse whose number I still had from when she had first taught us how to feed Ben by tube and as we were called into triage she was telling me we just needed to chop the button in half with scissors just next to Ben’s tummy. The balloon would deflate and go into his digestive system as if it was food, the stoma would be clear, and I would be able to pop a new button in. I explained this to the A&E nurses, and then to the doctor, who had never come across this problem before. Within twenty minutes, just as a nurse was checking I was happy to cut the button myself, the feeding nurse appeared with some scissors. She cut, I pushed a new button in, and we were back in business. Next time we’ll know what to do.

As I got Ben back in his wheelchair, the feeding nurse reminded me that when Ben was a few months old there had been a problem with his nasogastric tube and I had called her. She had been at home, trapped by one of the numerous snowstorms that were the hallmark of Ben’s early months, but talked me through what I needed to do. 

I had forgotten that occasion, but I remember calling her. I always called her when we had a problem with his feeding tubes, because of all the people we met in those early months she was the one that could offer us the most helpful advice. She knew all that we needed to know about feeding Ben and always answered the phone. When I was struggling to pump breastmilk she put me in touch with another mother who had been through the same. When the end fell off his feeding tube she explained how to fit a new one. When Ben’s gastrostomy was infected she would arrange for it to be swabbed. She was the person we needed at that time. Most other people we saw then either never dealt with a gastrostomy, or did occasionally whereas feeding tubes were this nurse’s bread and butter.

And now, almost ten years later, she solved our problem again whilst commenting on how big Ben is. He’s big because we’ve been feeding him though all of these various tubes which she helped us to feel were manageable. 

James had delivered Max to school mid-button chop so we phoned the school office so someone could tell him that Ben was totally fine, then James drove Ben to school. Crisis efficiently averted. There was a simple solution. Hurrah for the people who know the solutions and always answer the phone.

How to wee in space, or South Kensington

Do you know about Changing Places? Ben can’t use a standard accessible toilet so when are we are away from our house we need a Changing Place which is a room with a changing bench, a hoist and room for us and his wheelchair. Without a room like this, our options for visiting places are limited.

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Many of our favourite places to visit in London have taken it upon themselves to install Changing Places: Tate Modern, Barbican, Royal Festival Hall. They have just opened a new one at City Hall, and there’s one in Queen Elizabeth Olympic Park.

Yet other places have so far been apparently incapable of finding the space, funding or enthusiasm to install one. Between the Science Museum, the Natural History Museum and the Victoria and Albert Museum there are no facilities to cater to any of their more disabled visitors despite the thousands that must visit every year. The museums are next to each other in Kensington – it would be easy for disabled visitors to move from one museum to the other to find the facilities they need but according to the Changing Places map it is a barren wasteland.

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This means that when we visit one of these museums, which we do often, our day is determined by how long it is reasonable to stay out before we need to return home. It doesn’t matter how much fun we are having, how interested Ben is in nocturnal creatures or how much Max doesn’t want to leave Wonderlab. We have to leave and drive home because there is no toilet within two miles for Ben to use.

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Let’s just think for a second about using the loo, or rather not being able to use the loo. I’m a woman so I’m used to queueing, but I know there’s going to somewhere I can use pretty much everywhere. I drink a lot of tea and water, I’ve had three kids, I wee a lot. Just imagine not being able to go to the loo, restricting fluids and organising your whole day, life, around where there might be a loo. People like Ben have to tolerate a certain amount of discomfort to get to see more of a museum.

During the recent anniversary of the moon landings I read a fascinating Twitter thread about peeing in space. The author, a science fiction writer, points out that it is a common misconception that women couldn’t go into space initially because they lacked the technology for them to pee. Actually, the technology for anyone to pee in space was untested and initial space flights involved a lot of men weeing in their spacesuits and capsules smelling of poo. By the time women were going into space, NASA developed a solution for launch and spacewalks called the Maximum Absorbency Garment (MAG) which was, essentially, a large nappy or pad. Men used them too because they were more comfortable and involved less pee floating around the cabin.

It is super cool that the Science Museum is giving it’s disabled visitors a genuine space experience by leaving them to sit in a MAG while admiring a lunar module, but it would be better to have proper facilities. At the cutting edge of human endeavour, forty years ago, it seemed reasonable for astronauts to wear pads for long periods of time. On a Tuesday morning in the school holidays, in 2019, it does not seem reasonable. It appears that public institutions in central London don’t care enough about their disabled visitors to provide for them.

Presumably at the heart of this is people’s incapacity to imagine what they have not experienced. As a Continence Nurse said to me recently, ‘If I could persuade NHS managers to experience what my patients do, they might provide more for my patients and install Changing Places in hospitals’. Imagine the results we might have if MPs or Museum Directors got the full MAG experience.

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Over the last few months I contacted the South Kensington museums about this issue. The V&A and Natural History Museums told me they have hopeful plans to install Changing Places in 2020. In the meantime the Natural History Museum says it can provide a mobile Changing Place on request. That doesn’t allow for a great deal of spontaneity, as it means we need to plan trips sufficiently in advance, but it is a good interim solution. The Science Museum hasn’t yet responded.

The Changing Places campaign estimates there are quarter of a million people in the UK who have some kind of disability and cannot use a standard accessible toilet. Yet there is no requirement for public buildings, old or new, to install Changing Places.

Thousands of people are living their lives constrained or in discomfort due to a lack of loos they can use. Surely if we can get people into space we could provide a few more specialised loos on earth?

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‘This is Ben. He’s playing the iPad.’

About five years ago I did a BBC Radio 5 Live interview, which was indeed live, about Ben’s nativity play which we had been to the day before at his then school. The BBC had been filming the rehearsals for the play and interviewing parents before the final performance, and a lovely film featured on their website. It was also picked up by 5 Live and Ben’s school asked if I could be interviewed on air. I said I’d think about it and spoke to my husband, James, who said obviously I should do it – why wouldn’t I? And he was, of course, right.

Before talking directly to the presenter on air I had a conversation with the producer of the show who asked about nativity play. He was friendly, but it was clear the story they were looking or hoping for (similar to the website headline: ‘The parents who never expected to see their child in a nativity play’) was one of my surprise that my disabled child had taken part in a nativity play. Ideally I would talk about how amazed I was, that I had never expected this to happen because my child was, you know, disabled.

I gently pushed back and said the play had been amazing but not beyond what I had dreamt for my son, because the school was great so it was entirely within expectations that they’d do a Christmas performance. Then I tried to give them an alternative story (encouraged by James who has done substantially more media interviews) which worked. When I was put on air and talking to the presenter she asked about Ben’s progress at school and I told everyone that he’d read new words the week before which was a much better, feelgood, story. I wrote a blog about it at the time here.

I had never thought about nativity plays and been sad that Ben would never get to be in one. I’d never really thought about nativity plays at all – for either (at the time I had two) of my children. I don’t spend much time thinking about whether they will or won’t take part in these rites of passage. But if I had then I would have presumed that Ben’s excellent schools would make some version of it happen, and they have – we’ve been to a Christmas play every year since Ben started school. I wouldn’t say he has always enjoyed them, but they have happened.

Over the years Ben has got better at being able to take part in these kinds of performances without finding it all too overwhelmingly bright, loud, unexpected and unpredictable. His current school has an Awards Night every year where all of the pupils’ achievements are celebrated. There are some speeches and performances and each child goes up onto the stage to accept a certificate. The first time we went Ben hated most of it, but particularly the moment when he had to go up to the stage, and we wheeled him off the stage in tears straight to the car to drive home, leaving six members of our extended family clapping for children they were not related to. He gets overstimulated by the cacophony of music, clapping, lights, people and being the centre of attention. This kind of event doesn’t happen every day and therefore is hard to handle for him.

We didn’t go to the second awards night. We gave the third a try and didn’t invite other family; Ben’s crying that year wasn’t quite as loud but still heartfelt. This year we tried again and prepped thoroughly. We talked Ben through it for days before, agreed with him who would go onto the stage with him. As the ceremony started James read furiously from a poetry book and Ben allowed himself to be occasionally distracted. When it came to his class’s turn, James and Max wheeled him up to the side of the stage and delivered joke after joke to Ben.

I watched nervously from the audience as they came up to the stage and the headteacher handed Ben his certificate. I could see Ben was tense, already sweating from the stress of it all, but HE WAS NOT CRYING. He even managed a small hint of a smile. And then they wheeled off. Max appeared a few moment later demanding more sweets and when James and Ben returned to our seats we agreed we shouldn’t push our luck and beat a jubilant retreat to the car.

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So when, a week later, the school asked us whether Ben should take part in an evening music performance we were unsure. They reminded us that we had said no the year before. But now, fresh from the success of awards night, maybe we should give it a go? It’s a delicate balance with these things between it feeling wrong to force Ben to take part in events he hates and making him stretch his comfort zone so that he can discover that it’s broader than he thought. We said yes.

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On the day Ben’s teacher said they would take the kids to a rehearsal between the end of school and the performance so we just needed to turn up at the venue at 7pm. We had sent in his dinner that morning and they got him ready to go. We were so nervous we left home early and had time for an unusual Monday evening drink – just two parents having a semi-relaxed glass of wine before going to watch their son in a concert. It felt like a Thing that we hadn’t been involved in any of the preparation for this – we weren’t the ones getting him fed and changed and ready – we would just be spectators.

The performance was in a converted church and we took our seats looking down on the large area of floor which was the stage, where once there would have been an altar. Ben and his gang (five kids, five teachers/assistants because that’s how special needs schools roll) were at the side of the stage and Ben looked more relaxed than we had expected. The concert began and it was a mixture of folksongs played by professional musicians and pieces with children from other, mainstream, schools. We could see Ben getting more tense but his teacher was sitting right next to him and talked him through it.

When it came to Ben’s school’s turn they wheeled the children onto the stage as the compere/conductor explained that musicians from the London Symphony Orchestra had been visiting the school and had composed a piece with the pupils. He introduced each of the children and their instrument: ‘This is Ben. He is playing the ipad’. Ben had a trumpeter standing directly in front of him and when he touched the ipad with his hand the notes changed according to the pressure and direction of his touch. The trumpeter then played each phrase back, mimicking his ipad music, like a freeform duet. Other pupils played drums and buttons linked to recorded music. It was glorious.

Ben sat patiently at the side of the stage for the rest of the concert, listening to beautiful children’s choirs and enthusiastic drumming. At the end we collected him, thanking his teacher for the utterly brilliant way she had helped steward Ben’s emotions through the evening, and saying hello to the trumpeter who was chatting to Ben. We paused outside the church to collect ourselves and our belongings and people came up to Ben to say hello, to say well done. One lady bent down to his level and stage whispered, ‘Ben. That. Was. Fabulous.’ As we walked away, the evening warm and still light, a family coming the other way said, ‘Bye Ben, well done.’ We don’t know any of these people. None of them knew his name before his performance. It was amazing.

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I hadn’t imagined Ben would perform with LSO musicians, not because I’d thought he wouldn’t be able to do it because he’s disabled and would be sitting at home excluded from normal childhood opportunities (see BBC headline above), but because I didn’t know my children would have the opportunity to perform with LSO musicians at all. I would have been proud of any of them taking part in a ‘proper’ concert like this.

But particularly for Ben – it’s not that I’m amazed that he took part in these performances despite his disability; it’s that I’m so proud of him taking part in these performances because he’s disabled. Because he’s worked (working) hard to overcome all the reasons why things like this are sometimes overwhelming for him. I think it’s amazing that he has got to the point of being able to enjoy these opportunities despite finding it hard to cope with the noise, stress, unfamiliarity they involve. I love that the iPad was treated equally to the trumpet, and his disability incorporated, and that all the other parents and children remembered his name and came to say hello. It was one of THOSE moments which I’ll talk about when I’m old and dotty and reminiscing about how much joy my children brought me.

‘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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What to expect from grown-ups

I recently took Ben to a new place, for a new thing, which involved us swimming in a pool. It was a brilliant morning – the kind of pinch-me event that makes me so grateful that Ben has these opportunities, that I get to do this stuff with him.

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But accompanying the #blessed vibe, there was the cold, hard reality of needing to get Ben and me into our swimming costumes. We were at an unfamiliar school and there was a teaching assistant on hand to help get Ben and another child ready. As I got Ben onto the changing plinth, she said she would get Ben undressed while I got changed. This seemed sensible since I couldn’t really get naked in room full of strangers, so I left her to take Ben’s jumper and tshirt off while I popped next door. When I came back, I took over and continued to undress Ben. As I was putting some of his clothing in our bag, she started to undress Ben’s bottom half. I said I would do it but as I did, she continued to help. I repeated that I could do it.

She was being helpful. But it felt uncomfortable. I was there and happy to do all of it. We didn’t need help. Ben didn’t know her, and there is an intimacy to undressing which feels odd with someone who he has just met, who he had been cursorily introduced to, and who he is now expected to be on intimate, but unequal, terms.

Ben will always require assistance, he will need people (mostly able-bodied) to help him access the world. There is likely to be an imbalance in power and a dynamic in these relationships where Ben is more dependent, and this be interpreted as weakness. The solution isn’t for me or James to do everything for him, and for us to reduce his dependence on other people by increasing his dependence on us as parents. I am thinking about how to frame these interactions in an age-appropriate way – all children are dependent on adults in some way, but for Ben that means help to be changed and fed as well as taught and entertained.

Some of this is basic – it’s reasonable for Ben to expect people to introduce themselves and explain or ask him about what’s going to happen next before they start to undress him. Some of it is more nuanced. There are people whom Ben immediately likes and trusts, but we can’t expect that this magical energy will materialise in every interaction. Maybe sometimes Ben’s immediate need to be changed, fed, moved or assisted overrides his lack of immediate warmth to the person doing the changing, feeding or moving. Children don’t get to choose all of the adults who they interact with, but I think they should have a sense of what is okay and what is not, and should always feel safe and respected.

Last year we had a carer at home who was mainly assisting and entertaining Ben with us at the weekend. We weren’t convinced she was hugely enriching Ben’s life but with a full family life including two other kids, she helped ensure Ben had what he needed and was read some books. I felt guilty that he was spending time with her (albeit only a few hours), but that’s the bread and butter of being a mother to three kids.

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One afternoon I went upstairs to see how Ben was getting on and as I walked into his room she was hoisting him out of his chair in a way that was wrong, despite having been shown how we do this to make sure Ben is safe and comfortable. I then realised that she hadn’t moved him all afternoon and he was wet and uncomfortable from being in the same chair for hours. I was shocked and explained to her why all of this was unacceptable in front of Ben before asking her to leave the room and having a further chat with her on our landing. I felt protective, like a lioness who needed to corral her cubs and keep them close forever, and I asked her to leave. I bathed Ben carefully and put him in dry, clean clothes and we all watched TV together.

I had reacted in the moment. We generally try to have conversations with Ben’s carers away from the children as we don’t want our house to be a constant management exercise witnessed by them, and they need to have relationships with the carers we employ independently of us. But as I calmed down, I thought it was totally fine for Ben to have witnessed my shock and to know that I thought it was unacceptable.

It is not right for Ben to feel unsafe in his own house. It is not okay for him to be dependent on others for his personal care and for those people to not give it the thought and attention that they should. He shouldn’t have to put up with mediocre communication and monosyllabic conversation. He needs to be able to trust people with intimate moments of access.

I think it’s appropriate for him to see us calling out moments where people do this wrong. We need to make explicit what our expectations are, and to hopefully build in him a sense of what he can expect from adults, how much he has to put up with and when he’s allowed to protest. Later that night Molly, then age two, asked what the carer had done that was ‘naughty’ because she had heard my conversation with her on the landing and had (correctly) interpreted it as a telling off. I told her that the carer had done something wrong to Ben and she had gone home.

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As I put Ben to bed, I explained that it wasn’t okay for the carer to have moved him in a way that was risky, to have left him in his wheelchair for so long. I don’t know for sure how much of this he understood, but I hope Ben – and Max and Molly – know that he has a right to feel safe and comfortable, and grown-ups aren’t always right.

Clicking in the gallery

We took the kids to Tate Britain at the weekend. It’s a good thing to do first thing on a Sunday morning – we can drive there easily, it’s not busy, and we can get coffee and pastries in the café which incentivises the whole trip for all of us.

It was the last day of the Turner Prize exhibition so I had a chat with a guy at the front desk about whether it was suitable for children. I mentioned nudity, and he started talking through whether there were naked people in any of the pieces. I had to clarify that nudity wasn’t the problem, it was what the potentially nude people were doing, since I’d accidentally once walked Ben into a room of Gilbert & George works which were utterly inappropriate. Oh, no, no sex, he said.

And he was right, no sex. But the four nominees for the Turner Prize had all presented video works, two of which were about people who were being or had been killed. Of the other two, we all enjoyed some of a film about the legacy of colonialism in Tripoli. Yes, really. It was beautiful and interesting, and Molly only asked to leave four times.

Video art is perfect for Ben. He is drawn to screens, and these screens were huge. Each artist’s room had just one bench and people came and went so it was easy to manoeuvre Ben’s wheelchair in and out.

James took Ben into a film about queerness and Scotland which seemed safe for kids. For most of the time it was silent, with sweeping footage of ancient standing stones in remote Scottish islands. The other visitors were sitting silently and Ben was engrossed. The only noise was the rhythmical clicks of Ben’s tongue.

Ben has dystonia, which means he has involuntary movements in his muscles. It makes it very hard for him to control his own movements which affects his ability to sit, walk and talk. It also affects the way his tongue works, in that it moves a lot but not in a way that makes eating possible. This means Ben doesn’t control his saliva, and he makes a clicking noise sometimes as he moves his tongue within his mouth.

When he was first at nursery the staff would call him “Dolphin Boy”, for the little clicks he would make throughout the day, like he was trying to communicate on some level unintelligible to mere humans. He would make the sound when he was relaxed or interested in something – never when he was stressed or uncomfortable, when his mouth would be tense. He would often click when he was lying in bed, or when we were hanging out at home and he was content. Over the years he has done it less.

When Ben was younger we were self-conscious about him making noises, particularly in very quiet places. For a child who doesn’t talk, Ben can be quite noisy. He often kicks which makes his wheelchair squeak, or makes noises to complain, or shrieks if he is excited. It doesn’t matter if you’re in open, noisy areas but in silent galleries (or cinemas, restaurants, planetariums, theatres) the noises can seem loud and potentially disruptive. I would hate the idea of other people being bothered by the noise. I’m the kind of person who would rather not eat sweets than risk making loud crackles with a packet of fruit pastilles in a cinema.

Over the years we have come to notice or care about this less and less. If Ben is making a lot of noise he is often not enjoying himself, and we will take him somewhere else, out of the theatre. But if he’s making noise while enjoying something, then so be it. Ben is often the one laughing loudest and longest at something funny at the cinema, but he may also be making some noise in the quiet bits. If someone else is bothered by a disabled child making some noise, then I don’t really care. Odds are they could visit again, whereas outings for us are logistical challenges. I think expecting one mode of behaviour from all humans in every public space is, when you start to think about it, ridiculous. And actually, much of my anxiety about disrupting other people with our family’s noise is (was) presumptive – I imagine people are annoyed, when the vast majority of people either haven’t heard it, or have but are relaxed about it. We meet lots of people who are friendly to us in these situations, even when we’re blocking their exit from the row with Ben’s wheelchair and the four hundred bags we like to carry with us at any one time.

Still, it’s one thing to intellectually decide that it’s okay for Ben to make his noises in places where they might draw attention, but it can be another to not feel a twinge of anxiety about it. Over time, I’ve come to marry the two. I hear the noises themselves less, I’m less likely to see whether other people have noticed, and I care less about all of it.

In the dark room at Tate, James said no-one turned towards the noise as he, Ben and a group of strangers watched sweeping Scottish scenery accompanied by the rhythmical clicks of Ben being content. I think that’s kind of wonderful.

We then rewarded ourselves with croissants and cappuccinos, and then wandered through the main galleries of Tate looking at art back through the centuries. Somewhere towards the sixteenth century Molly took her shoes off and tried to jump off the benches, before shouting that she wanted to run. I tried to tame her while James talked to the boys about paintings of men on horses, and paintings of men fighting.

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Molly’s just turned three, and it’s an ‘interesting’ age. During our trip to Tate our disabled child was at no point the one that we were self-conscious about, that we were noticing people’s reactions to, or worrying whether his behaviour was appropriate for the space. Partly because I think the noises Ben makes are largely appropriate to all spaces, but also because no-one notices him when a small but furious girl is careering towards art of national importance, tripping people up as she goes. There’s a moral in there somewhere, beyond the immediate lesson that one way to distract yourself from overthinking your disabled child is to take a three year old whirlwind with you wherever you go.

Ben is 9!

Ben is now 9! I just reread my last proper blog about Ben’s birthday, when he turned 7, and much of it I would like to repeat: I can’t believe he’s 9! He’s so tall! Well done us for 9 years of parenting!

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A lot has happened in the last two years, though in many ways things for Ben and us can seem similar – the appointments, the physio, the school, his interests. When you are there every day you don’t notice your kids growing up, until you catch sight of them across a playground and cannot believe that massive child once lived in your (my) womb.

Two years ago I said Ben had:

“made huge progress on using his eyegaze computer: using it almost every day, knowing exactly what he wants to do, reliably choosing stories and then navigating through them like a pro, using communication software to create messages that were totally appropriate to the moment.”

That was true then. It is also true now: what I want to tell you on Ben’s 9th birthday is that he’s got so much better at using his eyegaze computer (and lowtech communication book). That he often knows exactly what he wants to do, will choose the story he wants and navigate through it, that he goes into and then exit activities when he wants. That he uses his communication software to say things that are entirely appropriate.

Some of what I want to say sounds so similar to 2016 that it begs the question of what  what exactly has changed since he was 7. The complexity of the way Ben learns and communicates means progress, or development, is hard won. It can be inconsistent and hard to capture precisely. I look back on Ben two years ago and I know that he wasn’t as good at navigating around his communication device as he is now. That isn’t to say he wasn’t doing those things before, but perhaps I did see small improvements and leapt on them. I know more now, I expect more of him now. In some ways Ben is doing much the same stuff he was doing two years ago, and in other ways he’s made wonderful progress.

The timescale of helping Ben learn new skills is difficult – it can take a long time. It can be hard to know whether he is improving or learning, and therefore whether you are doing the right thing. It can feel pointless to continue working on something that appears to be having little impact. We knew that communication was a long term project, probably lifelong, but you still can’t help hoping that there will be some kind of miraculous progress at some point.

Which of course there isn’t. But there is slow incremental improvement, a bit more nuance, a little more unprompted communication. It is all subtle and understated. We are talking about complex skills, involving deft eye control, motor planning, memory and language knowledge. It’s difficult to articulate, but I’ll do my best.

Two years ago Ben was using a high-tech eyegaze device that we had bought ourselves – it was a laptop with an eye tracker connected via USB. He could only use it when sat at a table. For the last 18 months he has had an NHS-funded eyegaze device which mounts to his wheel-, school- and home-chairs. He is still quite light, so his weight isn’t sufficient counterweight when the device attached which means it can’t be mounted all the time (e.g. on uneven ground), but he has it mounted on his chair at home and school for some portion of every day. For the last year he has also had additional educational funding so he has two hours of 1:1 time each day when an adult supports his communication specifically – modelling how to say something on his device, helping him find specific vocabulary, helping him use his device to do school work.

These developments have given him more time to practise and more opportunities to find pathways within his communication software. Sometimes progress doesn’t look how you imagined: over the summer he used all of this input to navigate out of his communication software every time I tried to talk to him using it. Every single time. This was disheartening – isn’t supporting his communication meant to mean he communicates with us more?

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To do this he was adeptly selecting three different cells in different positions on three different pages in order to exit his PODD communication software and then go to one of the stories on his device – clearly communicating that he didn’t want to talk to me, he wanted to read (and be read) a book. So I had to admire his determination and skill, and respect his wishes – to force him to talk would be as inappropriate as trying to make a verbal child speak to you.

Since the summer he has chilled out in this particular regard, and will now talk with his device. It is mostly in the context of a specific conversation rather than unprompted speech. It’s getting increasingly relevant and timely, with some ‘scaffolding’ provided by  his communication partner.

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For his birthday Ben’s aunt Rosie sent him some incredible shoes with lights in the soles. Once we’d opened the package and put them on, we talked about them with his device. I went to the homepage of his communication software, where there are various categories of words, and went to Special Events. He then chose ‘happy’ and ‘birthday’, and then I selected ‘present’. I said ‘this present was from…’, and I went back to the home page and into the People folder, where Ben selected ‘Rosie.

I said, ‘yes, from Rosie. And look what she’s bought you!’. I couldn’t remember where exactly to find the word but went into the ‘Clothes’ page. I then got distracted by trying to stop Molly inspecting Ben’s shoes so closely that she risked being kicked in the face. Then I heard Ben, via his device, say ‘shoes’.

He had gone to the folder called ‘shoes’ and then had ignored the cells called boots, thongs (it’s Australian software), AFOs, sandals and trainers to select the one that said ‘shoe’.

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Ben knew what I was talking about, he knew exactly which words we needed, and he found them with his eyes by navigating between pages, selecting the correct one of 18 cells on the screen, repeatedly. It’s functional, practical, appropriate communication. It’s everyday speech, only it has taken years of practice and support for this to become close to our everyday.

It’s one step further forward for a boy who has spent nine years working so hard to make himself understood. He’s 9! I’m so proud!