I really don't expect anyone to wade through all this...unless you know something about disability, in which case, please do!
It was a Friday afternoon when it all went wrong.
Just over a week before, the frame on Smiley's buggy had broken for the second time. It went straight back to distributors for review and repair. But I'd been very clever. By having a buggy and a wheelchair, Smiley would always be able to go places. Or so I thought.
Since the buggy was gone, I'd had to use the wheelchair for everything.
And just to remind you again, this is a wheelchair that has no accessories, and is so big that the metal casing on the front wheels takes lumps out of doorways: the ones that you can actually get it through.
It has a special moulded seat that I don't think is designed to cope with Irish downpours, though she does sit beautifully in it. And, as I discovered, it does not travel well....
This is the wheelchair firmly tied down in the car before we set off.
During the ten minute trip to the supermarket Smiley sways and bounces around in the back and when we arrive the straps look like this:
That does not look right to me. PROBLEM ONE. And it doesn't happen with the buggy. But there are apparently no reports of this happening with other wheelchairs so I've got to traipse down the country to the place where I bought the van to rule out the straps.
(I haven't blogged about this before as I was trying to calm down. It seems I am still not succeeding!)
So back to Friday afternoon.
There has been an incident the previous day when the handle of the wheelchair had unexpectedly dropped suddenly, and then one of the adjustment handles snapped off when I was trying to fix it. This might not sound much, but imagine the handle of your baby's buggy dropping just as you are trying to manoeuvre it off the pavement. Then it happened to the bus driver on the way home from school on Friday and the other handle broke off and the brakes stuck.
So I was stuck on a Friday afternoon with a potentially broken/unsafe wheelchair, no buggy and no idea what to do.
I spent the rest of the afternoon on the internet, and on the phone to anyone who hadn't gone home. An urgent call was made to an engineer to come and look at the chair, but I was told it probably wouldn't happen until Monday. I couldn't find anywhere in Ireland that hire supportive wheelchairs and buggies for children like Smiley who have a weak upper body: The Irish Wheelchair Association has standard adult wheelchairs for hire but they would not be suitable.
I could find no plan in place to deal with this situation. PROBLEM TWO. It seemed that to be completely safe, she should have spent the weekend in bed! Would this be acceptable for a non-disabled healthy teenager?
Of course she didn't stay in bed...I took her out in the wheelchair very carefully. And she got lots of floor time.
On the Monday the wheelchair was 'fixed', but it still rocked around the van. Soon afterwards I was loaned an ex-demo buggy, so everything was looking up.
But then the bad news started to trickle in. The buggy can be repaired, but it seems that Smiley is just over the maximum weight limit, which means that the professional therapists recommend that she should no longer use it. PROBLEM THREE. In fact at a meeting to which I was not invited, those attending noted that she is too old to be in a buggy. I can understand that. I worry that I am babying her. But she is not aware of this. She just enjoys all the opportunities it gives her and us. There are very few restrictions - apart from not going on beaches (now) and mountains *sigh*.
But perhaps it's time to accept a life indoors unless there is a guarantee of a rain-free day? Don't expect Smiley to be happy in one of those silly wheelchair capes with the rain running down her neck...
I really don't know what to do.