Making our own fun

It is the Easter holidays and like thousands of parents around the country, we are in the midst of filling the time with fun, Last week I thought we would try a cycling session at a velodrome.

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Wheels for Wellbeing run sessions at the Herne Hill Velodrome where they have a variety of adapted bikes and trikes for people to try, though we actually took our own wheels. The velodrome has a professional track with junior cyclists zooming round at high speed, and a flatter track in the centre where children and adults, with various disabilities or none, were cycling around on adapted bikes or trikes – some hand-powered, some with platforms for wheelchairs, some with two seats.

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There were very friendly, helpful people around. One of whom suggested we try some mittens to help Sam keep his hands on the handlebars. He went and found and gently fitted Sam’s hands into them, and they worked so well that I have since bought some. Then we bumped into a boy from Sam’s school, and Eli, Sam and he did some races round the track. We were there for an hour and it was fun.

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I don’t want to paint too romantic a picture of this outing: because it is actually impossible to co-ordinate the feeding and sleeping routines of three children, Stella was hungry as soon as we arrived so I unpacked Sam’s trike to the sound of her bawling in the car. As the helpful man was fitting Sam’s hands into the mittens, I was breastfeeding Stella under my jumper while walking around and making sure Eli wasn’t crashing into anyone. Elegant it was not.

It was raining for a lot of our visit, luckily not too heavily (not least because I’d accidentally left the car sunroof open) but I refused to let it put us off. If I have managed to get all of us to a velodrome with everything we require and no major meltdowns, we are NOT going home just because we’re getting a bit wet! Even if I have negligently put Eli in a sleeveless coat.

When I mentioned the idea for this trip to James that morning as he headed off for work he said it was a brilliant idea but noted that it was also so ambitious that I might be nuts to attempt it. He’s right, it’s easier to stay at home where everything is familiar, but more fun to go out. Especially to new places, with welcoming people. And lovely for Sam to see a friend from school. A velodrome! Awesome!

I would love for Sam to do more things like this, where he could meet other local kids and make friends. Maybe even without us. But that appears to be near impossible.

A social worker phoned me in September last year and asked if she could come and visit us. I didn’t know what had brought us to to her attention, but she soon came round one day after school. Since she didn’t seem to need to interact with Sam, he stayed upstairs with a carer and I sat with the social worker in our kitchen for an hour while she asked questions and I answered them.

I had never met her before so I described our day-to-day lives. She agreed that Sam needs were complex. She said she could see our lives were difficult, with the tilted head and sympathetic voice that is so irritating. She asked how we were coping, but offered no practical help because I said we were doing okay.

When she asked what help we needed I said I would like some holiday activities, or weekend clubs, or any kind of extra-curricular activity for Sam that was with other kids and not initiated by us. We can find fun things for Sam to do and fill his days, but we can’t create a peer group for him to do it with, and this is what we need help with.

I said that, as far as I know, there are no holidays clubs in our borough for children like Sam and she agreed. I found one last summer in another borough and she said I should keep looking for things like this, and that when I found them I should contact her team in plenty of time and they would see if they could fund Sam’s place. Which was nice of her, because I definitely have lots of time to be tracking down holiday playschemes, liaising with local authority bureaucracies and checking they understand Sam’s condition.

I had heard of an adventure playground in a neighbouring borough that runs weekend activity sessions for kids like Sam, and asked the social worker if he could be referred to this. She agreed that it might be suitable, but warned me that there was a very long waiting list. That is not surprising, because multiple boroughs like ours don’t provide anything like this. Fine, I said. As far as I was concerned, this was obviously the start of the referral process. She had asked what I wanted, so I had told her. She was taking this forward. Right?

Six months later I hadn’t heard anything. Wow, this is taking a while, I thought. But when I called to check, the social worker denied any recollection of this discussion. She said I hadn’t asked for any referral and so she had not done it. She was more interested in telling me that I was wrong than in actually starting the referral. It turns out we need to be assessed, and the assessment needs to go to a panel, and if they approve funding Sam, only then can Sam be put on the very long waiting list for the playground.

I have since had conversations with other members of the team, and am still waiting for an assessment. So we haven’t even got to step one. Meanwhile, each of these conversations has made me feel really uncomfortable – the only way to get anyone to even think about starting this referral is to ask, repeatedly, for help, something I find hard to do. It seems like I am really putting social services out by asking for assistance and I appear not to have the language to make myself understood or to have a conversation without getting upset. I know we are not in dire need, and plenty of people are worse off, but why is it so difficult to access support which other boroughs (and most reasonable people) recognise is important?

I am asked exactly what I want, which I’m not certain of because I don’t know all or any of the options. The whole thing has to be framed in terms of us ‘needing respite’, because presumably trying to help a six year old boy make friends isn’t sufficiently urgent. We probably do need some respite, but even saying that makes me feel like I’m letting Sam down.

So we will carry on organising our own fun, and lots of fun there is to be had. We’ll go cycling again and try to find other welcoming activity groups. Luckily Sam has an enthusiastic brother, carers with energy and initiative, and an easygoing personality, but it would be really lovely, and a huge relief, if our borough showed some interest in helping disabled kids be children rather than ignoring them.

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A space rocket for Sam

In December Eli and I went to Sam’s Christmas play at school. It wasn’t what you would call a traditional nativity play – each class did a segment around a theme and Sam’s bit was mainly based on the story of the three pigs and the big bad wolf! This is the second school Christmas play I have been to and they are always a triumph of logistics and imagination.

One of the older classes did a performance based on space, and were dressed as astronauts while singing ‘All About that Space’ to the tune of the Meghan Trainor song. This happens to be one of Eli’s favourite songs and he was outraged, ‘It’s All About That BASS, not SPACE!’

Then, as we watched the kids Eli said loudly, ‘Astronauts are not disabled.’

‘Um, right, don’t they look great?’ I said.

‘Astronauts cannot be in wheelchairs’, he said.

Luckily for me the next stage of the play involved chocolate coins being tossed in to the audience, so Eli was distracted and I didn’t have to deal with the inclusion-disability-space conundrum immediately. But it stayed with me.

Eli is as accepting of difference as you could hope a three year old to be. He’s a kid and they deal mainly in black and white and are hugely influenced by what they see around them. So in the same way that they might think women can’t be sea adventurers because there’s only one poxy female Octonaut on the TV programme, they think astronauts can’t be disabled because they haven’t seen one.

And of course they’re sort of right. It’s unlikely there will be a wheelchair-user visiting the International Space Station any time soon. But it’s also pretty unlikely that any of the children we know will grow up to be astronauts despite their aspirations but we don’t therefore tell them it’s impossible. Right now, they can pretend to be whoever they want to be.

The whole point of childhood is to have dreams and imagination, and the role of parents is to make the landscape of their aspirations as wide and ambitious as possible. That’s why we read fictional books. So in the same way that I don’t tell Eli that he might not meet the stringent selection criteria for space travel, we also don’t tell Sam that he can’t be an astronaut because he’s disabled. In light of Eli’s comments at the play, we spend quite a lot of time talking about how Eli AND Sam can be astronauts. And Stella, come to that (depressingly lack of female astronaut portrayal also).

Part of this issue is about representation – kids needs to see disabled people (and girls, and women, and non-white people, etc etc) in their books and on TV, doing the same things that the able-bodied, white boy characters get to do. That’s what the Toy Like Me campaign is all about – calling on the toy industry to better represent disabled kids. There’s a lovely story about their campaign here

While we wait for the rest of the world to catch up with inclusion, I seized the opportunity for action provided by a massive pile of cardboard following delivery of a new sofa from Ikea and…

I now present to you: THE WHEELCHAIR-ACCESSIBLE ROCKET!

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My eight years of architectural education have not been wasted. It’s big enough for Sam to get in in his chair and still have room for his brother. Eli has decorated it with stars and planets, it has a door to shut out the adults, and interior lighting courtesy of the pound shop. It’s a bit crude, not photogenic and an apostrophe has dropped off but the kids love it.

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IMG_0547James, Eli and Sam have between them created an elaborate bedtime routine which involves turning all the lights off, Eli climbing in to Sam’s bed, and then them playing with various light toys. For slightly obscure reasons, this is called a disco (though it involves no music). Therapists would call it Sensory Play.

We recently bought Sam a Buzz Lightyear toy to reward him for all his incredibly hard work using the eyegaze computer and along with the glow-in-the-dark stars and planets and watching clips of Tim Peake in space, the whole thing has become a bit space-themed. Now, the disco often starts with a little trip in to the rocket and a pretend voyage to the moon before the boys get in to bed.

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If the world won’t provide the imaginative horizons my kids need, we’ll have to create them ourselves.

‘To infinity, and beyond!’

Sam can cycle!

Milestones are a tricky thing for parents and children like us and Sam. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Sam’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Sam can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Sam working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Stella. It’s mid-winter (albeit one of the mildest winters on record) so Sam hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Stella and I got there Sam was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Sam himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Sam being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Sam can’t yet steer himself but let’s not quibble over technicalities).

Because Eli also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Sam was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Sam in the trike with his legs getting used to going round. I wrote a blog in April last year about Sam starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Sam the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Sam therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Sam have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Sam out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Sam the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Sam really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Sam’s life.

Self-confidence

Because Sam is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Eli learnt to really cycle his pedal bike the day before Sam’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Eli wants to do what Sam does and learn what he learns, Sam is encouraged to try games and activities that he wouldn’t tolerate at all if Eli wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Sam’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

Sister Stella

Sam and Eli’s sister, Stella, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Eli broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Sam started crying because Eli was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Stella, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Sam has shown once again that he can cope with a lot of change and take it in his stride, while Eli has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Sam’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Eli was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Eli. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Stella was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Stella and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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Sam is 6!

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Sam is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Sam joined us, on the day I am also mindful that this time six years ago Sam was being resuscitated then being transferred on his own in an ambulance to a different hospital, and that our lives changed forever.

But it gets easier every year, as the memories are less immediate, there is more to celebrate and Sam is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Sam’s year. I won’t post it, partly for reasons of privacy but also because of self-indulgence; while most parents will happily watch a ten minute video of their own child, no-one I know really wants to watch a long video of someone else’s child, even if that child is the subject of a semi regular blog they read. It’s surely the modern equivalent of being made to sit through someone else’s holiday photos.

So, here’s the executive summary. It is unashamedly positive. Let’s ignore the tiresome stuff for now.

In Sam’s sixth year he:

  • Enjoyed ice-skating and went round the rink quite a lot faster than grandpa;

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  • Had a massive and briefly scary allergic reaction to nuts and had to go to hospital in an ambulance;

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  • Went down a zipwire, swung from a sports hall ceiling and went kayaking at the Calvert Trust;
  • Did a lot of triking;

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  • Was a lovely older brother to Eli, letting him wear his lycra suit and clamber all over him;

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  • Moved house (again – his fourth since he was born);
  • Got a new wheelchair-accessible car (which is great but unfortunately turns out to be one of the cheating VW emission scandal cars…);
  • Got his own eyegaze computer to use at home and used it to tell us knock knock jokes;
  • Went to the House of Commons and met an MP;

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  • Lost four baby teeth, swallowing at least one;

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  • Did a lot of trampolining;
  • Went to a summer playscheme for the first time and made a biscuit the size of his head;
  • Went on holiday to the Cotswolds and Cornwall. Next year places beginning with D. Suggestions welcome;

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  • And last but not least, left one wonderful school and started at another, settling in quickly.

Sam had a lovely birthday. Over the years we have learnt what works and what doesn’t. We are less concerned these days about what a typical six year old birthday party would be like and just do what we think he will enjoy – small family celebrations, lots of presents and balloons, ice-cream cake which he can at least taste if not eat.

If I do say so myself, we have done particularly well with Sam’s presents this year. It’s tricky to think of things he will really like beyond yet more books, but he is really enjoying a puppet theatre where we put on shows for him with hand puppets, a lightbox that we can spell words on, and a teddy bear that will play Daddy’s voice (from Kuwait this week) or anyone else who records their voice via an app. So satisfying when all of the thought I have put into presents he will like pays off.

The coming year will involve more change for Sam, not least with a new sister and another house move. His somewhat relentless life will continue with the usual levels of complexity and endless appointments, but he has continued to prove that he can take it. It feels like he (and we) are more resilient and happier than ever. We will inevitably have some blips. I am certain the arrival of a third child will throw us all off course, he’ll get the usual winter bugs and we will face unexpected challenges. But, but… if I had been able to see how well we are all doing six years on from the awful day of his birth, maybe I wouldn’t have been quite so sad.

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Brothers and sisters

All kids look up to those older than them, and Eli is no different. Sam is almost 6, Eli is 3 and Eli wants to do all of the things Sam does: go to school, go swimming, watch Dennis the Menace.

Eli knows Sam is disabled and because chronology is tricky when you are 3, Eli wonders whether he will become disabled when he is older. He doesn’t see this as a particularly negative potential development. He wants to know whether he’ll get a wheelchair like Sam’s, or go to the same school when he’s disabled.

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There is something bittersweet about our able-bodied son climbing in to Sam’s wheelchair when Sam isn’t using it, about demanding to sit in Sam’s specialist supportive chair to have his snack. I hope it continues like this – Eli’s relaxed attitude to disability is how we would all be if we came across more disabled people at school and work.

Over the summer we went to the Liberty Festival at the Olympic Park . It was on one of those British summer days when the rain was relentless and so I can’t say we stayed that long, but they had curated a selection of cultural and sporting events which deserved sunshine and crowds.

One of the activities was a racing track, and a basketball court, with loads of sports wheelchairs for people to use. What an incredibly simple idea, but have you come across it before? Giving people the opportunity to just sit in a wheelchair? There were loads of kids trying to play wheelchair basketball and race along the track. Eli was super keen even though the chairs were way too big for him, and off he and Sam went to race (with James pushing Sam). He still talks about it – remembering the time that he got to go in a cool wheelchair and raced against his brother.

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I am mindful of this whole business of how you raise siblings of your disabled child. I am pregnant and we expect (fingers crossed, which didn’t go that well with Sam’s birth) another, female, mini-Jess in December. We have thought carefully about this. There are disadvantages to Sam of his parents being spread between other kids, just in terms of time and attention if nothing else – there is less time to model a PODD communication book if another child needs a wee or is in the midst of a meltdown. And there are ever present risks of a sibling feeling like Sam gets the lions share of our attention, of everyone’s attention. Sam’s needs dictate our holidays, mean there are constantly carers in our house, that our lives are disrupted by hospital stays.

Eli is also seeing various things I wish he wouldn’t. He recently asked me to teach him how to click with his fingers. When I asked where he’d seen clicking, he recounted in painfully accurate detail an incident a few weeks ago when a lady (who was in a position of responsibility and should have known better) was clicking in Sam’s face as an apparent attempt to distract or entertain him. When James asked her not to, and suggested she speak to Sam rather than click her fingers directly in front of his nose, she got very defensive and we all ended up having an argument. Eli was with us and was confused by it all, ‘You and Daddy were very cross, and the lady was shouting, and Sam is in our family’. He thinks people shouldn’t click in Sam’s face, but he likes the general idea of clicking.

We hope all of these potential stresses and strains are convincingly outweighed by the massive advantages of there being more people in our gang. Eli loves his brother. He wishes Sam didn’t go to school so that he was at home with us every day. He makes us buy Sam toys so he isn’t left out .

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Meanwhile a chatty 3 year old is a marvellous lubricant in social situations and forces all of us, not least Sam, to engage when it would be easier not to. We do all sorts of things as a family that we wouldn’t do if it were just me, James and Sam. And we all laugh more. We now have to charge the stimulator in Sam’s tummy daily so Eli has been comparing Sam to an iPad. Sam thinks this is funny as do we all. (Yes, we overuse screens in our house and Eli spends too much time with an iPad – another consequence of being Sam’s brother).

So let’s hope we can produce another one like Eli. I mean, of course we won’t. Kids have a habit of being their own people as the two we’ve got have shown. But if the next one is even a bit as accepting then it will be okay.

 

Brain surgery

Sam had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

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Sam spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Sam to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Sam’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Sam never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Sam with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Sam knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Sam was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Sam’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

Rotas

When Sam has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Sam well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Sam and someone with Eli, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Sam and for Eli be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Sam wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Eli started visiting Sam at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Eli’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Sam, that he was having brain surgery, that we hoped it would help Sam control his muscles. His first question was, ‘Will Sam be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Sam, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Sam for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Sam in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Sam being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

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Sam and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Sam wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Sam wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Sam and her just before his surgery). Along with looking after Eli for days despite him almost continually insulting her.

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It will be okay

So here we are. We’re on Day 9 and Sam is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Sam’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Sam and Eli jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Sam is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Sam was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Sam’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Sam and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.

Fear

Sam has a phobia of dogs. Or at least, we first noticed that he was scared of dogs. Then we found it was also cats, then foxes, and guinea pigs. And chinchillas.

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For a boy who has very limited communication, Sam found a very effective way to express his disquiet upon seeing these animals (or, as time went on, pictures of them): by gagging or sometimes actually being sick. Maybe the whole thing started because he happened to be sick when a dog was around, so the two became conflated in his mind and seeing a dog triggered vomiting. Who knows – Sam can’t tell us.

Either way, it started last summer and got progressively worse. At the beginning Sam would gag when we saw dogs in the park. Then he gagged at some dogs in TV programmes, sometimes being sick. Then it grew to include drawings in books, or dog-like bears, or cats. And plastic toys of animals. And TV adverts for plastic toys of animals. We sent the ’12 Dogs of Christmas’ DVD which someone gave him as an unfortunate but well-meaning present to the charity shop.

We get worried about Sam being sick for a whole number of reasons. Nutrition: because he needs all the calories he can get. Safety: because he chokes easily. Health: because he is prone to chest infections and repeated vomiting could lead to aspiration (breathing in stuff which doesn’t belong in lungs). And mess: because he tends to be sick on his chair or carpets which is a pain to deal with.

We got to the point where we would avoid or switch off TV programmes or books that had characters that triggered a reaction. One morning, a rogue TV show slipped through and Sam was so sick that we had to let the bus go and I drove him to school once we’d washed and changed him. He was unable to engage at all with the mobile petting zoo when it visited his school without gagging. He started gagging when we told stories about him gagging earlier in the day when he saw a dog. So much gagging.

It was having a significant negative effect on our day-to-day lives and we were wondering how to get some help. By coincidence, we saw a hospital psychologist about something unrelated and she arranged a course of therapy for Sam at the hospital with a trainee psychologist. We were very lucky to be offered this – the difficulty of access to Child and Adolescent Mental Health Services is well documented and I doubt we would have got such personalised treatment as quickly or easily if we had waited for a referral.

We have just finished a block of sessions where we worked with the psychologist to draw up a hierarchy of Sam’s fears – with talking about dogs with him in earshot at the bottom, through to him stroking an actual dog at the top. We figured that we’d focus on dogs and hope the chinchilla fear abated as a result.

Already, Sam has clearly demonstrated that he can learn to manage his anxiety – stories and pictures which made him gag the first time he heard or saw them are okay after a few weeks. We still have a way to go but are seeing real progress. I inadvertently tested this in our local shop last week. I went to get some milk and when I came back Sam was gagging for no apparent reason. Then I noticed I had left him directly opposite a card rack which featured literally nothing but photos of dogs! A few months ago he probably would have been sick, but this time we talked about it, and he recovered really quickly. You wouldn’t believe how many dog images there are in the world once you start looking for them.

It’s not going to be linear progress; Sam is now okay with the cat that visits our garden, but gags when we read him a new story about a dog. But we can now envisage a time when we can go for walks in the park without being on high alert. We’re currently on holiday and have been to a farm park* where Sam happily saw and fed goats, sheep, horses and turkeys. This is huge progress compared to our visit to a Miniature Pony Sanctuary this time last year which Sam DID NOT LIKE.

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What the therapy has made clear is that it is us adults who need to change our attitude as much as Sam. By immediately turning off offending TV programmes, or generally panicking at the first sign of Sam being sick, we were confirming to Sam that there was definitely something to worry about: these dogs must indeed be truly terrifying if all the grown-ups are so keen to get rid of them. We did all of these things for good reasons – it’s entirely justified to want to avoid Sam vomiting – but we were ultimately making things even worse and have had to retrain ourselves in how we respond. We also have to try to re-educate Eli, who has become so attuned to the problem that he shouts ‘DOG, DOG’ at the first sign of a canine, which isn’t hugely helping.

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As with so much of parenting, it’s all about being calm and consistent, about forcing oneself to demonstrate to your kids that everything’s going to be okay even though they are scared. We have to risk Sam being sick. We can’t carry on visiting people’s houses, finding out as they open the door that they have a dog, and introducing ourselves by Sam threatening to vomit on their 100% wool rug.

When going through this process, we also have to bear in mind Sam’s consent. On the one hand, we are trying to improve Sam’s quality of life by helping him overcome the feelings of anxiety he gets when he sees or hears dogs (or cats, guinea pigs, bears…). But it’s perfectly reasonable for him to not like dogs. We have to respect his right to really not want to look at pictures of dogs for fun, or to be able to say ‘No’ if he’s terrified. Eli hates lawnmowers – we don’t make him stand around next to men mowing lawns.

We are treading a narrow and tricky path between pushing Sam’s comfort zone a bit, while respecting his right to move at his own pace. Ultimately, he should be able to express a dislike of dogs, or anything else, and have that view acknowledged. We would just like him to be able to express his dislikes like he does with other things he hates – by whinging, or sticking out his bottom lip, or loudly protesting – rather than puking all over us all.

* We went to the Cotswold Farm Park which was brilliant – easily accessible for wheelchairs, loads for both boys to do, and Sam particularly loved their maze. Unlike the Model Village in Bourton-on-the-Water which lets in those ‘confined’ to wheelchairs for free because they can’t actually get to any of the model village. Which would be sort of okay if they didn’t charge the rest of your family full price and be insulting and grumpy about the whole thing.

Listening to the lungs

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When you are a parent, there are times when you really can’t be sure you’re doing it right. Much like when you thought all grown-ups knew what they were doing and then got to your twenties and realised the world is full of clueless adults, it turns out a lot of parents are winging it with varying levels of success.

Sometimes I have days like this Saturday, when my three year old found out that the ramps installed to enable his disabled brother to get out to the garden also mean he can drive his outdoor toy car straight up and into the kitchen. Then he repeatedly barged my legs, and on the back of a major toileting incident and various other small but irksome exchanges, I found myself pushing the car (with him in it) back out to the garden, with a noticeable lack of good humour. I then ignored him for a few minutes, so when my husband returned from the shops he was a little alarmed to find Eli was standing at the back door screaming, wearing nothing but a pair of pants. At this point I wondered if I had any idea what I was doing.

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I have many moments along this theme – wondering or worrying whether Sam’s doing enough or too much therapy, whether the boys watch too much TV, feeling bad that we haven’t taken them swimming for weeks, or that we’ve made them move house for the second time in two years, and they’ll have to move at least twice more in the next two years, etc, etc.

But then some days I think to myself… Jess, you have this job totally nailed!

Sam had a heavy cold last week, caught from me. He was snotty and a bit feverish but not awfully ill. He started to have a bit of a cough, and on Wednesday night I wasn’t very happy with it. But his temperature wasn’t that high, and he wasn’t that miserable. We put him to bed as usual, and about 10 minutes later he was sick. Which wasn’t ideal, and is relatively rare these days, but it’s not extraordinary. Then he slept well that night, which was very unusual, and by this point my metaphorical ears were pricked.

Sam hasn’t had a chest infection for over two years, but previously he’s had a lot. And I remember the sound of them.

First thing on Thursday morning he still had a bit of a cough, so I phoned the GP. We can normally get an appointment on the same day but they were short of doctors so the best they could offer was going to the surgery and waiting an unspecified length of time to see someone. Nothing sounds less fun than taking a slightly ill boy with a low boredom threshold to sit in a room full of sick people for hours so I dithered a bit. But then Sam coughed and I decided we’d go.

As we arrived, I could hear the administrative staff behind the desk talking about how few doctors there were, and that there were too many people waiting without appointments. Then the doctor came and queried whether all of these waiting people really needed to be seen today.

I was feeling a bit sheepish – on the face of it, yes Sam is disabled and complicated, but his symptoms weren’t that stark: a cough that his mother thinks sounds wrong, a little bit of a fever, some snot, and a really good night’s sleep.

We waited less than an hour before being called in to the doctor’s room. I set out my concerns, and she took his temperature (a bit high) and listened to his chest: crackles on the right! Needs a course of antibiotics!

I mean obviously I’d prefer he wasn’t ill. But the feeling of satisfaction at being proved right was a parenting high point. I know this boy. I know his lungs. And some days I am ALL OVER this mothering (*smug face).

(Eli might not agree.)

Cycling

In our quest for fun weekend and holiday activities, Sam’s tricycle has been a godsend. We are constantly aiming for variety in Sam’s life; things to do that aren’t us reading him books or watching an ipad, activities that get him out of his wheelchair.

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The trike offers all of the above, whilst also allowing a rare opportunity for Sam and Eli to do the same thing at the same time and pace. Both boys have got orange bikes/trikes, and we have just hit the moment when Eli has worked out how to ride his balance bike for longer than 2 minutes without demanding we carry it. Meanwhile, Sam has hit his stride on the trike.

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This means we can spend fun mornings in the park. Sam is happier, and more active, than he would be if we were pushing him in his wheelchair (and strangely less scared of dogs). The boys like racing each other, and I feel like we’re a normal family. Our boys are learning to ride their bikes together, on sunny days, in parks full of daffodils. We’re living the dream!

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We’re not the only ones who like the trike – people smile at us as we pass, much more than they would if Sam was in his wheelchair. I think a big orange tricycle gives people a way in – even legendarily unfriendly Londoners find themselves saying hello. One woman asked if she could take a photo.

We bought Sam’s trike last year. We got advice from various physios and had trials with two companies. There is no statutory (e.g. NHS) funding for equipment like this, and they are really expensive, so we took our time deciding what kind would work best.

The trike we decided on, made by a company called Theraplay, can be parent-operated from behind, so Sam can ride the trike normally with us pushing and steering. This allows it to be as normal a riding experience as possible, but with us doing most of the work. Sam chose to have an orange one.

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Whenever we consider buying big pieces of kit like this there’s a tension between enthusiasm and caution. Enthusiasm for the possibility of this being The Thing That Sam Loves, that he can use easily and effectively, that he is able to operate independently and generally makes all our lives brilliant and fun. Caution because we’re about to spend £1400 on something that Sam might not like, might not be able to use, and then we’ll have to work out how and where to store a huge white elephant and manage our disappointment.

This time the gamble has paid off. We have been slowly increasing the distance and speed that we push Sam. He now likes us going really fast. So far, we have been doing all the work – Sam’s feet are forced round as we push the trike forward, but we might be on the cusp of him being able to do some of it himself.

He finds holding on to the handle pretty tricky, but he can sometimes push the foot pedals round on his own now. We still hold the handle in order to steer for him but for a couple of metres we aren’t pushing at all – all of the forward momentum is Sam on his own.

This is the moment that I really hoped might happen, but was worried might not actually materialise. To pedal the trike, Sam needs to control his legs separately and time it right. It is difficult for him but, like so much that he does, he is trying really, really hard. Well done that boy! Well done that trike!

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