Holiday challenges

Trying something new can be difficult. Challenging.

And when you’re making decisions on someone else’s behalf, it’s even easier to stick with the same old things. I know I’m guilty of that with Pudding. I know what he likes and often don’t branch away from the tried and tested. After all, I can’t ask him what he thinks.

CPWe’ve recently come back from a holiday at Center Parcs at Sherwood. A tried and tested formula for us. We go with the whole of my family (parents, Sister, Brother and their children) so there are lots of people around to chat with or do activities. I loved going before Pudding was diagnosed with MPS, and I’ve come to appreciate it even more since. Holidays can be challenging for us in many ways, but I know what we’re getting at Center Parcs. I’ve always found the staff to be really helpful and responsive regarding Pudding’s accessibility needs and they even have a Changing Places toilet in the Sports Centre with another one planned in their pool revamp.

While we’re there, all the other kids get to try out new activities, stretch themselves and their abilities. We find things they like and things they don’t, and that’s ok. And I need to remember that Pudding deserves that chance too.

This holiday I challenged myself and booked him on the Mini Captains Adventure – a boat ride for young children with one accompanying adult. I had suggested that we could draw straws to see who went with him, but no-one else was brave enough!

To be honest, I had no idea what he’d make of it. The success of an outing or activity can depend very much on his mood at the time (and whether he’s had something to eat). But I was prepared for pretty much anything short of being capsized.

It’s often the people we encounter that can make or break an experience for us. I often think Center Parcs have good customer care and the chap running this session was no exception. He was very happy to accept us on our terms and didn’t bat an eyelid when Pudding sat in his wheelchair watching his tablet throughout the safety briefing and instructions.

Grandma, Brother and Sister had come along with us for moral and physical support (very useful when it came to getting the chair across a short stretch of beach), but found it terribly funny when the instructions told us to visit each buoy in turn and note down which picture was on them. I very sensibly decided to ignore them and the instructions!

Pudding looking through the front window of a boat holding onto the steering wheel. I am sitting by him, arm just visible guiding the wheel too.Once the other three boats had set out (again, my decision) we got Pudding out of his chair and took him down onto the jetty. The massive smile on his face made it worthwhile even just for those few seconds. Manhandling him into the right place on the boat was a bit difficult but we did it. And then we set out onto the lake.

He loved turning the wheel, but wasn’t quite so keen on me actually steering so our progress on the water was somewhat erratic! He also loved the occasional person zooming past overhead on the zipwire. I had a feeling though that a good mood wouldn’t last too long, so after a while negotiated back to shore. Seeing his fan club there brought more massive smiles and we even got a picture of him holding his Captain’s graduation certificate.

It was probably the most expensive ten minutes he’s ever spent, but I don’t care. We tried something new!

(PS. I am not being paid for this post and haven’t been asked to promote it, so any advertising is entirely coincidental – just my opinion! Other holiday companies do exist, etc, etc)

Wheelchair

Gosh it’s been a while since a blogpost, hasn’t it? Loads of potential updates going round in my head, but what with house-moving stresses and other stuff, none of them are making it into print! So I’m making an effort today.

A few months back I had the decision of whether to replace Pudding’s special needs buggy with something similar or to go with a wheelchair this time. As well as the buggy becoming harder and harder to push given how worn-down the wheels were, the appointment was triggered by my worries about his safety. When he got cross (who’d think it of that gorgeous smiling face?!) he would push down on the footplate, arching his back and being in real danger of tipping the whole thing over backwards.

OLYMPUS DIGITAL CAMERAWe did talk about various options to stop this happening, but also there was the knowledge that he wasn’t getting any smaller and would eventually outgrow the buggy anyway. The physiotherapist got a wheelchair out for him to try and his little face when he climbed into it… Well, I knew that it was the right thing!

We’ve had the chair for just over a month now, and I’m happy to report that I still think it was the right decision. It has changed our lives in a number of ways – some expected, and some not so much.

I had got into the habit of driving more often than I’d like as it was such an effort going any distance with the buggy. The wheelchair though is a dream in comparison. I can even push and steer one-handed! I do have to be better at remembering to put the brakes on – without them it does want to head off independently down even the slightest of slopes. (And no, we have not crashed yet…)

 

parkingThe accessibility (or not) of the built environment has become much more obvious to me. The little wheels at the front of the chair make it a bit harder to negotiate small obstacles than with the buggy. (Drivers please note: dropped kerbs are there to make it possible for wheelchair users to get around – if you park over them it might save you 30 seconds but take someone else far longer to find a different route). And I never knew that some surfaces are near impossible to get across. My unfavourite so far is this sort of surface used around the accessible parking bays in a place near us.

One thing I hadn’t realised is how much heavier it would be, so I’m eternally grateful for the friend who helped us find our new car earlier this year. He chose one with no lip on the boot which makes it possible for me to lift it in myself without too much damage to my back. One of those solutions that lifts the wheelchair onto the roof of your car would be absolutely fabulous, but at around two thousand pounds not really affordable.

It does feel easier to use our Blue Badge card. Previously I always worried that our right to park in the disabled bay would be challenged as there have been instances where those with invisible disabilities have been on the receiving end of horrible comments. With a wheelchair we ‘fit’ people’s expectations of disability more.

Attitudes towards us when we’re out and about are also quite different now. The first time I caught a bus with Pudding in his new chair was a marked change. The bus driver stopped at a slightly better place, got the ramp out and asked if we had a disabled travel pass. Not all travel is that easy when disabilities are added into the mix and perhaps we just hit lucky with an excellent driver, but we certainly never had as attentive service when he was in the buggy.

I had expected to receive a bit more understanding from adults  – seeing a wheelchair automatically signals more of a difference than a buggy – it prepares people to accept that the wheelchair user/carer may need more help and support. And if Pudding is being particularly loud I hope that he won’t be dismissed as ‘out of control’ as much. But I guess one thing I wasn’t prepared for was how many more stares we get from other children. They see buggies all the time of course, but a wheelchair is outside their daily experience.

I may just have to grow a thicker hide again, but of course Pudding couldn’t care less. In the chair he seems very happy – he is more upright and therefore more actively involved in his environment. It’s the perfect height for most cafe tables meaning that he can join us more easily. And he can climb in and out all by himself so gets the added pride of being more independent.

We’re wheely happy!