Ben is Ten

Ben hadn’t ever had a birthday party with friends. It’s not like we didn’t celebrate his birthday: we had a little gathering every year with family and close friends, including his brother, sister and the kids of our friends. We’d had cakes and garlands, songs and presents. Every year James makes a video of Ben’s last year and we all watch it together. We instigated a tradition of birthday ice skating at Somerset House. But no big party with friends and chaos.

This was partly because Ben didn’t seem to really like parties. He found the number of people and the noise difficult. He didn’t enjoy party games with lots of kids and often cried when we sang him happy birthday, especially if we clapped too loudly at the end. He didn’t have an obvious friendship group in the way Max, for example, did – his school has never been local and his classes have been smaller – so it was hard to know who to invite. I didn’t want him to have a party for the sake of a party. Also Ben couldn’t and then didn’t request a birthday party in the way that Max and Molly do, relentlessly. We didn’t think he would enjoy a typical child birthday party so we didn’t organise one. Or perhaps I felt too sad about the fact that I wasn’t sure how to pull together a birthday party with friends for him, so I didn’t.  Or both.

But then Ben was turning ten years old which felt like a milestone to mark. Ben was invited to a friend’s party at an ice rink and ice skating is one of Ben’s favourite things. I was thrilled to realise it’s possible (though not cheap) to briefly hire an ice rink. All of this culminated in …

Last weekend he had a tenth birthday party with family and friends, kids from school and home and their siblings. Thirteen kids on the ice, six of them using wheelchairs. At the start we were the only ones there and Ben and James swirled around alone, the whole rink to themselves. Ben’s friends arrived and the rink was a wonderful mix of semi- and in-competent skaters offering to push wheelchairs in the interests of their own stability. Molly and her cousin wobbled around holding onto plastic penguins. Max approached it with admirable confidence.

When we finished skating, the kids that could eat helped themselves to carbohydrates and sugar and Ben sat happily amongst them. Then we lit candles and sang him happy birthday around some amateur egg-free cupcakes. As we sang, he beamed, thoroughly enjoying the noise and the attention. I had pre-blended a cake at home so we fed him cake via his feeding tube as others tucked in. In the unphotogenic surroundings of a local authority ice rink, sat in front of a vending machine, Ben had fun and after ten years we had worked out how to give him a party he enjoyed.

We then moved on to a pub which usually caters for football fans and so had wheelchair-accessible open spaces, friendly staff and plasma screens everywhere you looked. We had not planned this, and we’d never been to the pub before, but Ben loves a screen and watching football pundits appeared to be exactly the post-party vibe he was looking for. (The Tollington Arms was as welcoming a pub as you could hope for).

I am so delighted to have been a mother to this boy for ten years and, this year, to have found a way to celebrate with his friends. I think we got there for Ben’s tenth birthday because we had waited to find the kind of party he could enjoy. It’s taken time for us to facilitate his friendships. It’s only after ten years that he’s come round to the idea of being the centre of attention at parties. All of it culminated in a bunch of children, half using wheelchairs, zooming round an ice rink to the sound of George Ezra (again) and it was glorious. He is glorious.

Ben is 6!

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Ben is 6! Like every year, the actual day is full of mixed emotions. While we are joyful that we are celebrating six years since Ben joined us, on the day I am also mindful that this time six years ago Ben 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 Ben is more engaged in birthdays.

As is now our annual tradition, James made a video to summarise Ben’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 Ben’s sixth year he:

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

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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 Max, 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.

Ben 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 Ben’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 Ben, 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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Chairs of Freedom

Using a wheelchair is a sort of shorthand for being disabled – easy to understand, simpler to explain than a gastrostomy or dystonia or dysphagia, and a good graphic symbol. It is the approachable face of disability – a chair with wheels! We all understand chairs!

But of course they are also intimidating. Many parents of recently diagnosed babies wonder whether their child will walk, whether they will need a wheelchair. Lots of people have asked us if Ben will walk, whether he will always need his wheelchair. Everyone is preoccupied with walking, when its significance for us has been eclipsed by other more pressing matters. At least weak legs can be compensated for with a chair; finding a way to get round the inability to eat or talk is much more complicated.

If you have the good fortune to walk up stairs and run up hills then a wheelchair seems incredibly restrictive, something to be ‘confined’ to. However, if you find walking difficult then a wheelchair is an optimistic, helpful aid – providing the opportunity to get out in to the world (stairs/kerbs/snow/sand/mud/gravel/cobbles permitting). It’s crucial that it fits right, that it supports in the correct way. Ben spends hours in his.

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Ben’s wheelchair is provided by the NHS (I think, to be honest I’m not certain) through our local Wheelchair Service. We’ve worked our way through a couple so have visited numerous times and once we’re there we meet knowledgeable therapists who try their best to find and adjust the best chair for Ben.

But the process! The process of getting to the actual appointment is enough to drive me nuts.

Unlike every other aspect of interaction with therapists who work with disabled children, there is no process for review except for me to think, ‘Oh, Ben’s grown! He’s not looking as comfortable in his wheelchair, let’s make a wheelchair appointment’. Or to think, ‘Actually he’s flopping to one side in this chair, it could do with an expert reviewing it’.

Meanwhile, if something on the wheelchair breaks, we’re supremely relaxed. Should we find ourselves in a restaurant for lunch and Ben’s footplate drops on to the floor, we just call Wheelchair Maintenance. That is a totally different ballgame. One phone call and they will visit Ben’s chair at school the following day, wheel it off in to their magical van, and back it comes Good As New.

But if I phone the Wheelchair Service because the chair needs to be adjusted or reviewed, they put Ben on their waiting list. Two – four months later he gets an appointment, generally in the middle of the day so he misses hours of school.

One/two/three months is a long time for a boy who sits in the chair every time he leaves the house. Every time he visits the cinema, or gets on the school bus, or goes to meet Michael Rosen.

Of course, what actually happens is that I wait until Ben is looking like he might possibly be getting a bit longer and so in approximately three months time his chair will be too small, and so I phone and put him on the list.

It seems to me ironic that it’s so hard to see a wheelchair therapist, when they more than anyone realise the value of a good wheelchair and take pride in making sure wheelchairs are comfortable and practical.

This is an absurd system. It is bonkers to not acknowledge that children grow. Every other piece of Ben’s equipment can be adjusted by a physio or occupational therapist at home or school, and they will do it within a week or so of a problem being identified.

I have no doubt the reasons for such a creaky system are many and varied; I have expressed my frustration at length with the friendly, talented therapists who work for the service! Presumably there’s not as much money as there could be in areas like this. I have been told it’s difficult to recruit therapists to wheelchair services – it’s maybe not the most glamorous end of the physio world. The service has a high rate of DNAs (Did Not Attends) because by definition the kids they see are more complicated than the general population, more likely to be ill, more likely that something will come up last minute, and the DNAs mean fewer appointments to go around.

One of the advantages of having a comfortable, functioning wheelchair is you can use it to go ice skating. Then you realise that being in a wheelchair works incredibly well. Ice is one of the few environments where people in wheelchairs experience no inconvenience, while walking people are near-incapacitated. Hanging on to Ben’s wheelchair becomes really helpful, and then we can whizz him around at high speed, something he loves, as long as we go as fast as possible.

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