When Big grew out of her Stage 1 carseat (you remember, the rear-facing one that you were forever stopping the car and running round to make sure she wasn’t dead – no? Ssh then or you’ll wake her!) we went to Mothercare and bought her a nice forward facing one. When she grew out of that one, we went to Halfords and bought the cheapest booster seat we could find. Job done.
When Small started to grow out of the Stage 2 seat we suspected the next one wasn’t going to come from Halfords. He can’t go into a booster as, although his muscles are growing stronger every day, we can’t trust him to sit up unsupported as at any minute he might decide it would be much more fun to lie sideways, or lean his head on the window. Funny? Yes. Safe? No…
So my first port of call was my lovely OT. Car seats…? I asked, tentatively. I love the peculiar sense of logic that the current system has. All children have to have a carseat, it’s the law. Not to mention that all kids with additional needs have a multitude of appointments to get to that they need transport for. Are they funded? Absoutely not, no. I wouldn’t mind if they were £30 but, as with the word ‘wedding’, mention the words ‘additional needs’, and you can add on some zeroes. The cheapest ones start at £600 and just keep on rising. OK, I said, how do I find the one that’s right for Small? And this is where the system falls over. She didn’t know. Despite the fact that every child needs one, and I can’t have been the first person to ask, she didn’t know. My OT is good, she really tries for us, but she could give us no pointers. I don’t understand why there is this gap in the system.
Thank goodness for the online community. I love that people are free with their knowledge. We were recommended carseats and we were recommended suppliers. Having made appointments with 3 different suppliers we found one we and Small liked. You could tell he liked it as he just sat there grinning. And flapping. Then – how can we fund this? Because it’s £600+ and we don’t really have that just knocking about?
There are, wonderfully, charities out there whose sole purpose is to fund equipment for disabled children. We looked at Newlife, who are amazing in what they achieve and saw they would fund a carseat. I dithered as we also need a bed funded for Small, and these are *really* expensive, but the carseat was becoming urgent. But really? I must sell my soul for this basic piece of equipment? To fill in the grant application you must tell them diagnoses, what your income is, what benefits you receive and if you are funded will you help by sending pictures of your child using the equipment. Without wishing to bite the hand that feeds… these are all very invasive questions/ requests into what would normally be our very insular world and they do grate. But you learn, with a child with additional needs, that you are no longer insular and that, really, pretty much whatever it takes to get recognised, listened to and funded is ok by you.
Thank you Newlife, we love it.
Newlife is here:
Mick from Windmill Special Needs Co supplied our carseat. He drives round the whole country so will go wherever you are: