Month: June 2015

The world of the Wheelchair Accessible Vehicle

/ jess / 3 Comments

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We are spending quite a lot of time at the moment thinking and planning how Ben 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 Ben 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 Ben kicks all the time, it meant the front passenger had their back pummeled for the entire journey, which can be wearing.

(Side point: Max (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 Ben as far near the front as possible, so we could keep an eye on him and he wouldn’t be totally separate from Max. There’s something hideous about the idea of me, James and Max sitting in the front two rows and then Ben 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 Ben 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. Ben is happy to travel in any vehicle that has Charlie & The Chocolate Factory audio CDs playing, and Max thinks that a car with DVD players and headphones is pretty brilliant. This is a classic example of Max benefitting from his brother’s disability – Ben 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.

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A trip to Westminster

/ jess / 7 Comments

I didn’t realise quite what a difference it would make to our lives once Ben was at school. We’re now coming to the end of his first year of full-time school, and it’s been bloody marvellous. The thing about having a very small disabled child, who’s at home a lot, is that you are responsible for every almost every aspect of their lives; what they’re doing, who they’re doing it with, what they’re learning (or not), how much variety they have in their days. Even with the aspects that aren’t entirely down to you, you are still the one providing taxi services or co-ordinating appointments, having conversations and arranging outings. It’s a lot of pressure and hard not to take things personally.

If you are lucky enough to get your child into a really good school (via interaction with your local Special Educational Needs department, which is bound to be stressful), a significant chunk of responsibility is lifted from your shoulders and you are handed back whole swathes of time. 5-6 hours a day to be precise.

Of course there’s still a lot to do and arrange. And there are school holidays to fill. But every day during term time, your child is with people who are teaching them, playing with them, taking them to go swimming and to other interesting places.

Ben’s school celebrated the election of a new parliament in May by going on a school trip to Parliament for all of the children who are part of the MOVE programme, which is all about integrating physical tasks, goals and skills in to the school day and is designed to involve the expertise of everyone who works with the children – parents, teachers, therapists, classroom assistants and others.

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Ben’s MOVE goals focus on him sitting unsupported and standing for short periods of time. Being part of the programme means practicing these skills every day at various points throughout the day. The idea is to go beyond just working on this in designated physiotherapy sessions. It a great idea, and Ben’s ability to sit with less support has improved noticeably over the last 6-9 months.

The outing to Westminster was to celebrate the achievements of all of these kids, and where better to take them for a treat than to the heart of power? The place that, for a group of eleven disabled children, ultimately determines so much of their lives, from education and transport, to benefits and healthcare.

If I decided to take Ben on a trip to Westminster, it would be a big deal and I would spend a lot of time planning and fretting. The idea of taking eleven children in wheelchairs, eleven staff and all of the necessary bags on the tube, in order to make an appointment time with an important person would send me into some kind of collapse. But that’s what the school did – cheerfully and enthusiastically. Presumably somebody was planning and worrying, but they gave the impression of easy calm. They even, in the spirit of MOVE, got all of the kids out of their wheelchairs on the tube to practise sitting on seats. Brilliant! Nuts!

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I met the party at the Houses of Parliament and we went though security – all lovely slopey ramps, friendly frisking and smiles for the army of wheelchairs. We went through to New Palace Yard where we were met by Neil Coyle, the very newly-elected MP in whose constituency Ben’s school sits. He’d only had a couple of days to familiarise himself with the workings of the Houses of Parliament but he got us in, and happily chatted to us all, kids included. You could not meet a more welcoming MP.

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There’s a video here.

I love the idea of politicians and their colleagues coming across these kids as they walk through the Palace of Westminster. I got by far the best bit of an ambitious day – just swanning in for the photos in front of Big Ben. What a luxury for me – none of the anxiety about logistics or whether Ben would be happy, and all of the fun of the adventure. But mainly, lucky Ben!

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(Surprisingly hard to fit my large head, Ben’s wobbly head and Big Ben in a selfie.)

Listening to the lungs

/ jess / 3 Comments

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 Max 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 Ben’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!

Ben 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.

Ben 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 Ben 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 Ben 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).

(Max might not agree.)