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).
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.