New wheelchair

IMG_4188There are certain milestones along this journey of being a parent of a disabled child which are inevitable. Some are actually the omission of milestones: the missing of typical developmental steps, the absence of a first spoken word, there never – in our case – being a first step. Others are very much present: the diagnosis of impairment, the first feeding tube, the first operation.

One of the big ones is the first wheelchair. It’s possible to keep a baby, and then a ‘toddler’, in a buggy for a long time. At some point it becomes clear that the buggy is insufficient and some kind of wheelchair (or the compromise, a ‘Supportive Buggy’ is necessary). This will be for lots of good reasons to do with postural support. It is entirely possible to be convinced by the need for the wheelchair and sad about the arrival of it simultaneously.

Sam had his first wheelchair (more of a supportive buggy) when he was two. It was needed – he didn’t look at all comfortable in the buggy we had for him, and it was showing the strain of near continuous use. So we went for a fitting and a few months later it arrived. We heaved it up the steps to our house.

I wasn’t in love with it, but I could see the advantages. He sat well in it. It folded, so just as with his previous buggy we could lift Sam into his car seat and put the wheelchair in the boot. The slight difference was that doing so injured us almost every time.

Since Sam was still young he often slept in the buggy, and he was sensitive to bright sun, so we asked about a hood and rain cover for the wheelchair (as is standard with  a buggy). It turned out that as these were not ‘essential’, they would not be provided by wheelchair services, but we could choose to buy them ourselves. They arrived just after Eli was born and I remember fitting them while James held tiny Eli. They worked, but were incredibly clunky and would need to be removed every time we put the wheelchair in the car. They looked like something someone had made in their garage and were as far removed from the slick design of a buggy as you can imagine. I was really cross and after crying for a bit I wrote an extremely grumpy letter to the manufacturers which James had to tone down so that it was only quite cross. We sent them back and found our own solution. I have written before about the way things look here

Since then Sam has had two more wheelchairs, each a bit more ‘wheelchairy’ than the last. Over the last six years we have adapted our house and bought a “Wheelchair Accessible Vehicle” (a car with an in-built ramp, blog about it here) so we have fully accommodated the wheelchair into our lives. I see the wheelchair as an enabler for Sam, and we make do with hats and ponchos so there are no resentful conversations with suppliers of wheelchair hoods.

But what I still struggle with is the particulars of each wheelchair. Sam’s wheelchairs are supplied by our local service which is staffed by great people but, like all NHS behemoths, can be a bit inflexible.

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When we first discussed the possibility of Sam needing a bigger chair last year they showed me the type of chair they thought would be most suitable. Even allowing for the fact that it wasn’t the colour we would pick, and wasn’t set up for him, the chair I saw was really ugly. The base looked to me as though someone had rustled it up out of some spare scaffolding poles. I could see it was practical, and I was told that it was one of the most reliable chairs, but it was winning no prizes for elegant design. The seat was covered in weird synthetic fabric that had a clichéd care home vibe. It was enormous compared to his current wheelchair, and relied on a ‘knee block’ (literally a shaped block, fitted around the knees) to keep Sam in the right position, which he had never had before.

I knew Sam would need a new chair soon, and I respect the opinion of an Occupational Therapist who knew about seating for disabled people. But this was a chair that Sam would use every day, sometimes for 12 hours a day. We would see it every day – in our house, in our car, in family photos. In what other sphere of your life would you think about acquiring something like this and accept the first thing offered to you which happens to be the one in stock? Do people buy cars they hate the look of? Do people get dining chairs that they’re not sure they’re going to find comfortable? There is a huge market for buggies which people spend thousands on and have the kind of designers who formerly worked on Formula One cars.

Of course it would be replaced if Sam wasn’t happy and comfortable, but I really hate the clunkiness of wheelchair design. I resent spending a lot of time incorporating Sam’s needs into the design of our home which – if I do say so myself and may possibly have pointed out before – is beautiful AND fully accessible, only to have it cluttered up with something that may be technically good but is aesthetically shit. It’s unfair to have options for large purchases in every other aspect of our lives, but not this.

The wheelchair service was patient, told me to have a think about it, have a look at other options privately (while recounting some horror stories of chairs breaking and families having to arrange fixes themselves…). Meanwhile, Sam kept growing. An engineer came to adjust the eyegaze mount on the wheelchair and we had another conversation about the chair – we all knew his current chair wasn’t quite heavy enough to support the device, and that a bigger chair would be better. After listening to my monologue about scaffolding poles she mentioned that the base came in different colours. She emailed me later to say it definitely came in black.

And so, slowly, I came round to the idea. The seat fabric could also come in black which made it look a bit less healthcare setting. We eventually ordered the new chair, and it arrived last month. Sam very patiently sat through adjustments and we brought it home with us.

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You know when you are away from your kids for a few days and when you are reunited it’s like you are seeing them anew. You notice the size and the feel of them with a jolt – both familiar and novel. It was like that with Sam in the new chair – it was Sam in a wheelchair, which is our daily experience, but he looked taller and older and relaxed. It made me feel like I must have been squeezing him into a ridiculously small chair before, like we hadn’t noticed that he was now eight. Pushing the new chair is like a dream – no weird knobbly bits on the handle, much less veering unpredictably into gutters. It comes with a tray which is a perk. There’s even just enough room on the side bar for Stella to hitch a lift (don’t tell wheelchair services…)

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There’s of course a little hint of melancholy – it’s wider, it will be a bit harder to squeeze into small spaces. We won’t be able to carry him and it upstairs to friends’ first floor flats like we have done recently. These are sadnesses relating largely to physical barriers, not to Sam’s need for a wheelchair.

Sam’s not hugely keen on the kneeblock so we’re taking that slowly (not as unkeen as we originally thought though – turns out his shoes were too small and we hadn’t noticed which was making him understandably grumpy). It’s all come good in the end. Bring on the adventures.

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The world of the Wheelchair Accessible Vehicle

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We are spending quite a lot of time at the moment thinking and planning how Sam travels. Now that he and his wheelchair are heavier, it’s more difficult to put him in a car seat and heave the wheelchair in to the boot. And he’s on the cusp of his head popping out the top of the car seat anyway.

We knew this was coming, and had been considering the possibility of a Wheelchair Accessible Vehicle (WAV) for a while. Like lots of these things, it’s important to have the idea suggested early so you can think, ‘Oh, we definitely don’t need one of those yet’. A year or so later, as you struggle to get the wheelchair out of the boot for the third time that day, you think ‘I can see there might be advantages to having a WAV’.

Finally, we got to the point where we had to actually do something about this, not least because we were asking other people to drive Sam places and it’s one thing choosing to destroy your own back but quite another to force it on other people. We also had a couple of long car journeys close together and because Sam kicks all the time, it meant the front passenger had their back pummeled for the entire journey, which can be wearing.

(Side point: Eli (age 3) calls the driver seat ‘Daddy’s chair’ and the front passenger seat ‘Mummy’s chair’ despite me driving more than James. It drives me nuts! I’m trying to raise a feminist!)

WAVs are normal cars that have been adapted to include a ramp so that a wheelchair can be wheeled in and strapped down. We considered the options.

For us, it was crucial to get Sam as far near the front as possible, so we could keep an eye on him and he wouldn’t be totally separate from Eli. There’s something hideous about the idea of me, James and Eli sitting in the front two rows and then Sam being stuck back in the boot. We also need enough space to fit all of our other stuff, but for the car to not be too huge. We borrowed a WAV van last year and it was enormous – like driving a minibus to the shops. We live in inner London – we need to be able park.

We are incredibly fortunate – we have been able to get a brand new car, with lots of amazing features, where Sam is safe and comfortable (ish – his wheelchair needs adjusting but don’t get me started on the FOUR -SIX MONTH waiting list for wheelchair services). But still it will take some getting used to. I have a mixed relationship with unfamiliar cars; I can force myself to drive any car, anywhere (I’ve driven happily in Syria and Qatar) but I get extremely attached to the car I know. I’m currently having to remind myself daily that the new car is better than the old car (which was massive, and intimidating for other people to drive, but feels like my friend and I am – boast warning – amazing at parking it in busy central London).

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Also, a WAV forces you to rethink everything you know about safety. Up until last week, it was all about putting a seat belt on, checking the car seat was correctly fitted. Now it’s a fiddly routine of belts and clamps, tightening and tensioning, remembering the seat belt on top of all the other paraphernalia. In the past, I’ve become blase about inserting nasogastric tubes and tube feeding – clearly it is within my wits to get this process down but it’s going to take a while. And I’m a tiny bit resentful of all this palaver.

The boys need no convincing. Sam is happy to travel in any vehicle that has Charlie & The Chocolate Factory audio CDs playing, and Eli thinks that a car with DVD players and headphones is pretty brilliant. This is a classic example of Eli benefitting from his brother’s disability – Sam has a tendency to vomit in the car which is reduced if he watches something on TV while we drive.

So, apart from the business of going over speed bumps painfully slowly to avoid scraping the bottom of the ramp, and needing to find massive parking spaces to leave room for the ramp, the car is good. We will grow to appreciate the ways it helps us. I will learn to love it.