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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Chairs of Freedom

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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 Sam 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. Sam spends hours in his.

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Sam’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 Sam.

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, Sam’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 Sam’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 Sam’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 Sam 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 Sam 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 Sam’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 Sam’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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(Yes, his shoe fell off. We are in a war of attrition with that right shoe.)