Summer skateparks

It is an odd summer. The forced homeschooling of the spring and early summer kind of bled into the summer break, though of course we have now entirely given up on any formal education. There aren’t any of the usual shows or activities running and we aren’t going on a family holiday. The only rhythm to our weeks is that Ben is going to his school playscheme two days a week, which is the same routine as the two days a week he spent at school in early July. Siblings aren’t allowed at the playscheme this year.

Quite a lot of days are spent with the kids doing separate things, with different people, as we try to do things they will each enjoy whilst also finding time to work. It’s not ideal, but it’s inevitable. I feel I have this fantasy version of our days where we do activities together like an idyllic happy, inclusive family but the reality is more like James is working, I’m at a park with Max and Molly, while a carer (the backbone of a successful summer) collects Ben from school.

I think this is probably what always happened, but I’m more aware of it because we’re coming out of shielding Ben where we got used to Ben staying at home while the rest of us occasionally left the house, and I worry it’s the thin end of a wedge – of getting used to not including Ben (even if it’s sometimes for good reasons). I worry that Max and Molly won’t have enough shared experiences with Ben, that Ben will feel left out. But we do do things together, and particularly at the weekend. Mostly parks, with fresh air and easier social distancing. A few weeks ago we went to a skatepark where James rolled Ben up and down the ramps while Max and Molly scooted around, tumbling off occasionally. Ben loves going up steep ramps, tipping his chair right back, and as James pushed him round we could hear Ben squealing in delight.

This week Max wanted to go to a specific skatepark where there is nothing for Ben to do (playgrounds being particularly unwelcoming for wheelchair users in general) and my ankle is not yet up to pushing him up steep ramps while surrounded by skateboarders. I explained this to Ben. ‘Do you want to come with us?’ I asked him and he, quite understandably, said no. Molly wanted to stay with Ben so I took Max alone. I read my book while he skated and it was actually relaxing having only one child to supervise.

Max ended up becoming friends with another boy at the park and I listened to them talking. The other boy was describing his older brother. ‘My older brother is 10,’ Max said. ‘My dad pushes his wheelchair up the ramps when we go to the skatepark all together.’

‘Oh cool,’ the boy replied.

Later that day I was giving Molly a bath while Ben was in his room, just through the open door, with his eyegaze device mounted to this chair. I was washing Molly and not looking at what Ben was doing when I heard his device talking, loudly. Ben had selected the page on his device that has pre-programmed phrases and said ‘Alexa, can you smell that?’

The smart speaker lit up and replied, loudly, ‘Oh my giddy aunt, somebody open a window.’ Molly, Ben and Max, who had been lying on his bed, all collapsed in hysterics. 

Maybe it’s not about the quantity of time the kids spend together, but what we do with it, and skate parks and fart jokes are the bits they’ll remember?

Wonder

I have been reading even more books than usual to Ben during lockdown (or whatever we’re meant to call this period now). We have been choosing longer books and taking a week or two to get through them. Max often listens too.

We have just finished Wonder by R.J. Palacio which is about a boy, August, who is ten years old, has facial differences and starts a new school. It’s about how people react to the way he looks and how he makes new friends. Some parts are told from the viewpoint of his sister and his school friends. A lot of it is about his relationship with his parents, how he feels about his appearance and how he manages other people’s behaviour. It’s all the stuff that parents typically worry about when they have children who are different, or actually probably just all parents.

I make a concerted effort to read diverse books to my kids. I seek out stories about people who look different to them, or celebrate different holidays, or live in different kinds of families. I don’t think it’s enough to hope your children will see a range of people in the culture they consume – you have to proactively curate it. I’m not doing in perfectly, but I’m trying.

In the books I buy and read, I don’t protect them from potentially tricky topics. Books are a great way of introducing the beginning of something before it comes time to have a Big Chat, or perhaps there will never need to be a serious chat because books are a great way of introducing nuanced topics and having a whole series of little chats. All chats and topics are different but books have helped me have chats with my kids about flowers, racism and reproduction, just in the last few weeks. Of all the stories, I particularly seek out ones that depict disability because I want to try and provide some balance to the overwhelming majority of the stories Ben hears being about non-disabled people.

So we started reading Wonder, and I found bits of it difficult. There are sections where kids are really mean to August and I worried that I was telling Ben that kids are bullies, but reminded myself that Ben might not relate to August. Not least because his physical differences are entirely different to Ben’s. So I continued, relieved when we got to a bit where August made good friends. Ben was engaged, enjoying the story, showing no signs of distress.

There were a number of points where I welled up while reading – partly because I’m an absolute sucker for this kind of storytelling, and partly because people’s kindness often moves me to tears and August makes a really good friend in the book. There are passages where there is a danger of August being depicted as the kind of ‘inspiration porn’ that so enrages disabled people – the plucky, courageous person who is congratulated for completing an everyday task, living an everyday life. But there is also something beautiful in Wonder about the way August rises above horrible people and makes meaningful connections. His teacher makes a speech at the end: ‘It’s not enough to be kind. One should be kinder than needed… we carry with us, as human beings, not just the capacity to be kind, but the very choice of kindness’, I read to the boys as my voice wobbled around the threat of tears. August is clever, hard working and funny. He makes friends in the book, just through being himself.

When we got to a chapter written by August’s sister, Olivia, I worried because she eloquently describes her parents not having time for her when they are so distracted by her brother. I didn’t (don’t) want Ben to feel like his siblings might be resentful of him, or to plant in Max’s mind that he’s been dealt a bad hand in siblings or families. I found it hard to read the passages where Olivia doesn’t want August to come to a show at her new school, because she is embarrassed that her brother is so different, but she feels awful for feeling that way.

I realised that reading books like this is as important for Max as it is for Ben. It’s easy to forget that having a disabled sibling is, in itself, an identity. It affects so much of who Max is, what he does, and how he lives. I would love for him to see that being Ben’s brother is hard in some ways, and wonderful in others. But there are things he finds difficult, and perhaps it’s helpful for him to know that other siblings find this too. It’s very unlikely he’ll suddenly become resentful of his brother because he heard a character in a book was. And if Max is at all resentful, me pretending he isn’t won’t make it go away. 

What Max mainly wanted to talk about as we read the book was why other kids, friendly and not, were behaving the way they were. Max wondered why one particular boy, Julian, was so mean and why his parents didn’t want him to be friends with August. Max has some experience of kids not liking his brother and far from it making him self-conscious about Ben it has, so far, just made him really sad, which made me even sadder.

But for every unkind character, there is a friendly one. And August’s parents are there beside him. There is a bit at the end where August and his dad are discussing the astronaut helmet that August wore all the time, for years, so people couldn’t see his face. August’s dad is telling him how much he hated the helmet: ‘The real, real, real, real truth is: I missed seeing your face, Auggie. I know you don’t always love it, but you have to understand… I love it. I love this face of yours, Auggie, completely and passionately. And it kind of broke my heart that you were always covering it up.’

‘Oh, that is SUCH a parent thing to say,’ Max groaned. ‘That’s exactly the kind of thing you guys say.’ Too right, kid, and not going to stop anytime soon…

Limping through lockdown

It has now been over four and a half weeks of us being at home – at first in self-isolation because Molly was ill, then in the typical lockdown that everyone is doing. It has been over five weeks since I slipped on a small hill in a kids’ playground and broke three bones in my ankle. Tomorrow will mark exactly five weeks since I was wheeled into surgery, telling James I would see him in two hours, only to return five hours later with three metal plates and ten screws in my very swollen ankle.

I was discharged from hospital two days before Molly got ill and so our lockdown is inextricably linked with my ankle injury and my often clumsy attempts to manoeuvre myself around on crutches, bearing no weight on my left leg. Having a leg in a cast was not ideal preparation for having three children at home, all the time. Yet, when I was first in hospital the thing that upset me the most was being separated from my family. I was so lonely and all I wanted was to be in my own house with my children. So in some ways all my dreams came true!

Once I could leave my bed, my inability to move, carry or help has been difficult and it has felt like the worst timing because what we could do with now, more than anything, is two adults who can both look after our children. My incapacity meant James doing everything, for all of us, for weeks and it was a lot for him. More than once when I tried to be helpful and independent, I fell over. I have found it incredibly frustrating. I am unused to dependency and have found it hard to rely on nurses, my husband and my children for the most basic of my needs.

But in some ways I injured myself at the best possible moment. We had bumped into a friend in the playground just before I fell and so she distracted Max and Molly while I worked out how to get myself to A&E. I had delivered a massive work project the day before I injured myself so it has been okay that I haven’t worked for a month. James had returned from a work trip to Canada two days before I was admitted to hospital. I was discharged from hospital just before the pandemic took full hold, and my limited mobility is less of an issue since I’m barely allowed to leave my house.

We have bought me a one-legged scooter and so I can now prop my healing leg on it and potter around the house. I can cook, and carry things from one place to another without needing to pack them into my rucksack. I have made it out to the garden and have played an extremely amateur, ridiculous, game of seated volleyball with Max. I have been reaping all of the benefits of a house without steps, with doorways wide enough for a scooter, and a lift that takes me to my bedroom. I have been so grateful for the mobility aids that have allowed me to move around and increasingly parent my children. And yet I am so resentful that I can’t use my legs like I am used to. It’s been a surprise to find myself dependent on crutches and a scooter and I struggle to reconcile my long-standing belief that mobility aids are freeing, not confining, with feeling incredibly constrained, all of the time. I hope this is more a process of change management in my own mind than latent prejudice against disability, but it’s hard to fathom my own thoughts when I have only left the house twice in a month and we’re in the midst of a pandemic.

Because obviously the pandemic weighs heavily. When Molly was ill, we attempted to self-isolate her and Max from Ben, so after years of encouraging our children to touch, kiss and cuddle each other we had to stop Molly going near Ben in the house. It felt necessarily but wrong. Max stopped sleeping in the same room as Ben. We still had some carers coming to spend time with Ben, and we had to tell Molly and Max not to go downstairs when they were here. After years of encouraging an ease around Ben and his carers, we had to police everyone’s exposure to each other, spraying cleaning fluid in their wake. It was heart-breaking. I’m not sure how long it will take for us to undo our policing of touch.

As Molly entered her second full week of illness, it seemed like Ben was in a vulnerable category and we tried to work out what we would do if he got ill. We spoke to Ben’s lead consultant and he suggested a plan which made us feel reassured, but we were on tenterhooks every time Ben coughed or grimaced. Somehow he has so far remained unaffected, and now we are all healthy, touch wood. It now seems like Ben no longer officially counts as vulnerable, though who knows, and there is only so much we can do to keep him safe. We remain vigilant, nervous and concerned.

In the midst of all of this, I scoured the internet for guidance about how we should manage carers coming into the house. Not having carers was not an option given my inability to look after Ben and James needing to look after all five of us. I cannot push Ben’s wheelchair or move him between his chair and his bed. I can barely change him without wobbling perilously and can’t get to him in the night in any kind of timely fashion. So we came up with our own version of guidelines for how we would manage the risk, long before the government produced anything helpful.

I noticed news reports that told us, with a tone of reassurance, that many of the people who died had underlying health conditions. I knew that is how Ben would be described. I was relieved that children did not seem to be among the worst affected, but then there were reports of child deaths, and plenty of other people to still be worried about. When NICE published guidance setting out how access to critical care would be managed, I noticed that it was on the basis of frailty, and that according to their criteria Ben would be frail. I realised these criteria didn’t apply to children, and I was both relieved and still stricken, because Ben will one day be a disabled (apparently frail) adult, and we have friends who are disabled adults. I am still shocked that a formal, public document set out the ways in which a disabled person’s access to life-saving treatment would be considered rather than assumed. It was later edited to say the guidance should not be used with younger disabled people, but why did it take outrage to prompt that clarification? Of the many things I never imagined before COVID-19 appeared, I didn’t think I would ever worry whether my child would have to compete for medical attention and whether his disability would count against him if he did. 

I’ve barely articulated any of these thoughts because I am mainly aware of our luck. We are currently healthy, in a large house with a garden where we have time to appreciate the tulips. We have offers of supplies and the money to buy them. I have a husband to help, and subscriptions to streaming services. We have as much hope as anyone else does of home-schooling our children, albeit with the colossal pressure of being not only Ben’s teacher but also his physiotherapist, occupational therapist, speech and language therapist and support system. 

We could be in a much more difficult situation, and I know many are. We are okay – letting our kids watch marginally inappropriate films, making and eating too many cakes and wondering how to get any work done. We are more fortunate than many, yet each morning I remember that this crisis has laid bare an assumption that Ben’s life might be, if not now then in the future, a little bit less valuable than someone else’s and I just hope that we are going to weather this storm and then come out fighting, with strong ankles perhaps.

The Tale of the Token

We took the kids to junior parkrun on Sunday morning. It meant being up and out early, but the sense of satisfaction gained from having undertaken a family activity by 10am on a weekend morning is immense. Max likes running the 2km race, though is perhaps lacking some of the competitive edge of other participants, and since we got an all-terrain buggy for Ben one of us can jog alongside Max while pushing Ben, which they both love. Molly tolerates waiting around until she can go to the playground nearby.

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We can’t fit Ben in his normal wheelchair plus his buggy plus the rest of us in one car so we go in two cars and move Ben from the wheelchair to the buggy at the side of the road. We’ve done this a couple of times, and as usual last Sunday we were cutting it fine with timing so arrived as the group were warming up, pleased that it hadn’t started yet. Last weekend it was misty and atmospheric but not too cold. Parkrun is an amazing idea – free communal running, open to everyone, and the junior parkrun is just a slightly shortened, slightly calmer, 2km version of the 5k adult run.

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Ben was a bit grumpy as we arrived but we thought we’d carry on and see if he came around to this running idea like he has before. James did the pushing on Sunday and Molly and I waited at the start line, cheering them on as they ran past us at the halfway mark. I could see Ben had perked up. As they came towards the end Ben was smiling and we followed them as Max sprinted to the line. As with all parkruns they had set up a funnel and each runner is clicked in as they cross the finish line and then handed a token as they leave which corresponds to their race time. If you have registered online you have a barcode which you can get scanned with your token and then your time will be recorded online. You can then keep track of how many runs you have done, and what your times have been.

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As Max sprinted across the line he was clicked through and then handed a token, and James and Ben followed shortly behind but were not clicked in and so not given a token. James asked for one for Ben but by then the next runner had been clicked through and so it was too late. He continued forward to allow other runners through. As Molly and I caught up with them, James told me that Ben had high-fived one of the organisers as they’d been running, which is a big deal because Ben can’t easily control his arm, and we congratulated him while Max collapsed on a bench and demanded water.

It felt like a shame that Ben hadn’t been given a token like Max. It’s pretty hard to find activities that both boys like doing at the same time, and with the help of an all-terrain buggy and an able parent to push, this is something they can do together. When the boys do things together we try to treat the same, and Ben not being given a token did not feel like treating them equally. As James and I talked about it an organiser came up to ask if everything was okay.

I said it felt wrong that Ben hadn’t been clicked in so given a token and the organiser said that they didn’t give tokens to participants that were pushed over the finish line – children needed to run in order to be registered. He said he hoped I wasn’t disappointed, but I was incredibly disappointed – I had perceived parkrun to be inclusive and welcoming, and refusing to give a token to a disabled child who had done the full 2km run, albeit pushed, did not feel inclusive. They hadn’t come across this situation before, he told me that he’d been at lots of different junior parkruns before and had never seen a disabled child participating so they would need to ask head office for guidance. In the absence of direct instructions I suggested they could have erred on the side of inclusion, which would be to give him a token. I didn’t see how refusing to acknowledge him could be seen as anything but exclusion. I said I didn’t see what the risk was – what’s the danger in giving Ben a token and us being able to see his time? It felt like the person at the finish line had looked at Ben, saw he was disabled, and dismissed him.

It was a small thing but it slightly took the shine off an otherwise fun run. We had wondered how inclusive an event it was when we’d taken Ben previously and mentioned to an organiser that we would push him over the finish line. Their immediate response had been that no adult was allowed over the official finish line, and therefore Ben couldn’t cross it either. When James had pushed back, they had agreed he could cross it but it hadn’t been the accommodating response we have generally become accustomed to. Ben hadn’t been given a token that time but we hadn’t noticed.

I don’t want this to be about this particular organiser of this particular parkrun. In this case the organiser took my email address and contacted me later that day to say that he had found guidance which said it was fine for Ben to participate and to cross the finish line and be given a token. He asked that I register Ben online and we make ourselves known to the organiser at the beginning of the run, and that should ensure we have no problems in future. He dealt with the follow up promptly and effectively.

I do want to make this about how people respond when presented with a disabled person unexpectedly. Parkrun apparently has a policy of not letting parents push buggies over the finish lines at junior parkruns, presumably to stop overzealous keen-bean runner parents overshadowing six year olds or running them over. They don’t want adults crossing the finish line because it’s all about the kids at junior parkrun. Fair enough. But a nine year old disabled child being pushed in a specialist buggy is different. In this case, the people confronted with this difference reverted to the only similar rule they could think of which dictated that Ben should be excluded from the finish line of the run. When challenged, they said they didn’t have specific guidance and so they couldn’t, wouldn’t, give him a token because he can’t run.

This isn’t about the token – I’m not even sure Ben cared that much about the token – it’s an exemplar about what some people do when faced with an unfamiliar situation. Rather than thinking ‘oh, how can we include this person’, they think, ‘oh, he can’t run, so we won’t include him’.

We all find it difficult to be confronted with unfamiliar situations, especially under pressure, especially at 9.20am on a chilly Sunday morning. We are all raised in a society that sees kids who run as the norm. We are all influenced by a society that sees disability as difficult and we can’t help but take this message on board however much we (I) try to unlearn it. But let’s just all try to be the person who errs on the side of including, adapting and being friendly. Let’s not assume that if we don’t know what to do, the best thing is to is say no, exclude and ignore. And then try and justify it when challenged, concentrating on the really specific act of running rather than an overriding ethos of parkruns being ‘for everyone’ (see parkrun website).

Let’s all try to be the person who would just hand over a token to a nine year old boy who had just done a high five and participated in a 2km run.

Let’s keep the fun run mood cheerful and not sour the morning of a family who are really proud of themselves for making it out of the house before 9am on a Sunday morning.

Don’t treat my sons totally differently because one of them can run and the other can’t. People who can’t run can still take part in a run.

Don’t make me say the word ‘token’ ever again.

JUST BE THE PERSON WHO WOULD HAND OVER A FRICKING TOKEN.

(Photos below from the playground, post-run. Obviously it’s another playground where there’s nothing for Ben to do, but let’s not get into that now.)

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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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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.

Playscheme

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

 

 

A Weekend Away

We went away for the weekend in June to the Calvert Trust, an activity centre in Devon. James, Ben, Max and I spent the weekend being the kind of people you see in adverts for happy families. We canoed, cycled, abseiled and swam.

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The Calvert Trust is fully adapted for people with disabilities to be able to do all of the activities on offer. I think of it as Centre Parcs crossed with a youth hostel in a utopian inclusive world.

James and I took Ben there three years ago. Then, we’d had a good time and Ben had had some extraordinary experiences. It was the first time he had been down a zip wire, or canoeing, and he had liked those things, but he hadn’t enjoyed everything. He’d struggled with the unfamiliarity of it all and the amount of waiting involved in being part of a group. In addition to preparing all of his meals in a bathroom, and getting up with him during the night, James and I were also trying to entertain him between and during the activities. It was a worthwhile but utterly exhausting weekend for all of us. I wrote a blog at the time which is here.

This time we took a night carer with us. And Max.  And realistic expectations.

The combination of Ben being older and Max’s boundless enthusiasm meant we had a really good time. It was still tiring, but the kind of tiring that comes of having had a fun day with kids who have enjoyed themselves. We went canoeing with Ben sitting in a special seat. We went cycling on special bikes which was marvellous (apart from the moment when Max careered off into the biggest patch of stinging nettles in Devon). We connected Ben to a rope and dropped him from a perilous height, and then sent him down a zip wire.

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As Ben gets older it becomes hard for us to help him to take risks, to really feel a sense of danger and the physical rush of being thrown or falling, which he has always enjoyed. We always tell people he likes speed – when he goes ice skating we encourage the professionals to take him round as fast as they can. When he was smaller we could easily throw him in the air or push him hard on a swing and he loved it. It feels good to give him the opportunity to be dropped from height in a terrifying way – to hear him shriek and then laugh. Just because you’re disabled doesn’t mean you should be mollycoddled, gently pushed over surfaces with small changes in gradient for the rest of your life.

It wasn’t all wholesome fun. We still had to entertain Ben and cajole him into wearing a helmet. He spent some time watching an ipad while others were doing activities he’d made clear he wasn’t interested in. He and I went abseiling which he hated and it made him cry. I took him back to the room while Max went climbing because Ben was totally over physical activities by that point in the day.

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But really, that’s fine. It was fun! It was lovely to have a weekend of just me, James and two kids (Molly was at home with family). Away from the activities, we spent more time together as four than we have done for years. The comparison to our previous trip, when Ben was younger and less happy, was stark.

It was one of those trips when Max makes everything more fun. Ben is often happier when he is around and vice versa. New experiences don’t feel as high stakes when you have two children doing them – if Ben can’t cope with it and has to bail, Max will probably still have fun so it feels worth the effort or vice versa again. And it’s hard not to enjoy yourself when you have a six year old telling you that what you are doing is fun, awesome, and brilliant repeatedly, before, during and after each thing.

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This visit it happened that ours were the only children there and the other groups were of adults with various impairments, some visibly physical, some not. Max made friends with some of the other guests, playing table football with them and asking them about their days. The kids stayed up late to watch live music, though we all refrained from the disco. I felt so strongly how idealistic a place it is – somewhere where everyone can do the same activities and eat in the same room, regardless of impairment. No-one needs to explain their disability. Conversations are about what people’s access needs are rather than what they can’t do. No-one stares. It’s how the world should be and we’re so fortunate to get to experience that if only for a weekend.

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Lucky

IMG_9945I’m trying to institute a new tradition in our house: on each of the children’s birthdays we will all get up and do birthday breakfast, open presents and be generally celebratory, and then I will go back to bed for at least an hour. I think it is a good idea for all of us to remember that this is the anniversary of these kids coming out of my body and that body could do with a little lie down.

Molly’s birthday a few weeks ago was the first time I implemented this brilliant new tradition, and as I was lying down remembering her birth two years ago, I read an article by Chitra Ramaswarmy about her tendency to catastrophise. It was poignant to be reading about how incubating and then having children affects your outlook on life, particularly if one of your children is diagnosed with a disability.

Ramaswarmy experienced a very tough year in which numerous difficult things happened. By its end she had – after a complicated pregnancy – given birth to a healthy baby, her partner and mother had been seriously ill and recovered, and her son had been diagnosed with autism. Was it a year of disaster or, actually, was her family lucky?

Ramaswarmy describes how she is naturally a catastrophist, and inclined to be anxious about the potential for the worst case scenario to occur. She makes the case that the parenting is an antidote to catastrophising:

‘The hard graft and small, pure joys of looking after a baby and a little boy with autism anchor me to the present. The baby keeps me healthy, makes me feel lucky and gives me a constant dose of perspective. She is also exhausting: I am too tired and busy to catastrophise with as much fervour as the habit demands.’

This rings true for me. I am not a catastrophist. My natural tendency is towards slightly anxious optimism. But there is no doubt that I thrive when I am rooted in the present, and nothing keeps you in the present like having a small child, and then another, and then another. It’s not all rose-tinted snuggles – Ben’s early months were difficult for us all and he was frequently made miserable by reflux and feeding difficulties. But my focus on looking after him meant that by the time I looked up and around we had largely weathered the storm.

I went on to have two more babies and, luckily for all of us (and I mean luck, because these things are just a roll of the dice), Max and Molly were babies that were easy to please. I have been largely too busy caring for all of them over the last eight years to spend much time thinking about what might have been, or what might go wrong.

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What really resonated with me was Ramaswarmy’s reaction to her son’s autism diagnosis:

Then there is my brilliantly singular, loving and brave son. Before he was diagnosed with autism (that happened this year, too) I feared this moment: how will we manage? What will we do about school? How will he develop? Is everything going to be OK? The mystery and idiosyncrasy of autism can be frustrating, but it is also a visceral reminder that none of us knows what lies ahead and that compassion is the most powerful weapon against anxiety. So, here I am, living and thriving in the future over which I once catastrophised. And you know what? It is not so scary after all.’

We have had Ben’s birth described as a catastrophe, and in purely medical terms that may be true. But it has not been a catastrophe for our family. Sure there are difficult times, and complications, and we are sometimes sad and frustrated, but there is no catastrophe here. Something that was unfamiliar and therefore terrifying has become normal to us, and with familiarity comes an ease (hugely helped by the privilege of having carers to help and living in an adapted house).

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Over Christmas, all the kids were largely at home every day for two weeks, something that is rare, which meant they spent more time together than usual. Molly can now talk and asked about, or talked about, Ben at least every hour. Ben happily tolerated her climbing on his wheelchair, wiping his face, pressing her cheek into his. Max is currently obsessed with gags about bodily functions and Ben encouraged him by laughing at his poo jokes. Ben let Max play with all of his Christmas presents. Molly clambered on Max and ruined his games and he only snapped after such goading that any jury would be on his side. Ben and Max watched Star Wars for the first time and were scared and excited by the same bits. We went ice skating, for walks, swimming and to the cinema.

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The ‘mystery and idiosyncrasy’ of cerebral palsy can be difficult, but it is also a prompt to live this life that is happening right now, even if it is one that would have counted as a bad outcome at some point. We have three healthy kids, and it’s not so scary after all. Are our family the survivors of a disaster, or are we lucky? Perhaps ask me again when they’re all teenagers, but on the basis of this Christmas we’re extraordinarily lucky.

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A New Standing Frame

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Ben needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.

On a busy day Ben can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.

There are lots of advantages to standing. Human bodies are designed to be upright and although Ben spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Ben are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.

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Ben first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Ben will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Ben are worth having it available to him.

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A rep visited recently with a new kind of standing frame for Ben to try. There was normal amount of fiddling and adjusting, but once Ben was in the new standing frame he was happy and his physio was able to see that it worked.

At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Ben’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.

Ben’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.

Then James said, ‘Um, shouldn’t Ben choose what colour he wants his standing frame to be?’.

Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Ben directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?

Except… I have a history of manipulating my children’s choices. When Max is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Max and Molly’s bedroom because I don’t like them (e.g. massive garish posters).

I had a strong suspicion that given the choice Ben would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.

Fortunately for Ben he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Ben was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.

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So using his latest communication book I talked Ben through the options and asked him what colour he would like his standing frame to be:

Would you like a new blue standing frame, Ben?

No.

Would you like a black standing frame?

No.

Would you like a pink standing frame?

No.

Would you like your new standing frame to be orange?

Yes.

Obviously.

Totally cocking up my interior design aspirations.

Thanks Ben.