Tuesday, 15 June 2010

Bikes, curves, toilets, screams and self-assertion!

We got Angharad a trike a while ago now. The daft thing was that her legs were too short for it. She could push down but not far enough to bring her trailing-foot back up sufficiently high that it was in position to push down in turn. Another problem was that the seat on a trike is necessarily low-slung meaning that Angharad's legs neither pointed downwards nor developed any force. With a trike beyond her we assumed that it would be an age before she'd sit astride a proper two-wheeler bike (albeit one with stabilisers). But we went for a look to test this hypothesis out and found it blown out of the water. On a bike, the seat is much higher but it means that she can position her legs so that they point downwards and allow her to develop pressure. She still occasionally simply back-pedals until the pushing leg comes back to the top and repeats the process. But more often than not she is able to pedal and push-through successfully. Very happy child and parents. We'll post a pic of this soon. And, unlike when she rides a scooter, she finds the steering much easier to negotiate and usually points in the direction she's aiming for. Don't get me wrong, she's not yet ready for a maillot jeune; but she 'gets' it. Her poor balance and coordination will ensure that she has plenty of problems before she can get rid of stabilisers. Logically, she may never manage that. We'll see. But Nik and I are optimistic.

Angharad's growth and height have recently been measured both by the Community Dietitian and up at the Hospital during her out OPD visits. Though she remains a tot by the standards of many kindergaten behemoths who do not have DS, when compared with her Down Syndrome peers Angharad is growing resolutely in line with her 'curves'. At just over 2.25 stone and just about 93 cms (3') tall, give or take, she is on the 25th centile for weight and on the 55th for height. I.e. 75% of kids her age with DS are heavier than her and 45% of them are taller. These are the curves she has followed all her life so she is growing happily and successfully for who she is.

We've been concentrating on toilet-training these last few months. Parents of non-DS kids will be surprised that we have waited until she is 4 years old before starting this. The truth is though that her condition means that she lacked the motor-skills and muscle-tone before now. The school Nursery have joined in willingly. And the nappies have been binned. For the past 7 mornings in school Angharad has either successfully used the loo or, simply, not had any accidents. This is becoming a very positive experience. She sometimes asks to use the loo or even places her 'steps' in position and climbs up to her toilet seat (or uses the potty). But not always. And she doesn't find it easy removing clothing or getting dressed again. Still, we feel sure that she knows what's going on and is 'getting it'.

Which makes it all the more frustrating (actually, that should read 'annoying') when she battles us. She'll battle about going to the loo, about what and whether she'll eat, about doing (or not doing) something we think necessary. A favourite of hers: when in the shower with her mam she will scream as if being murdered when Nik tries to wash her hair; ditto in the bath with me she sounds like banshees being slaughtered when I attempt the same thing. (Yes, we are sure that there is nothing organically wrong with her head or ears.) It's a horrible racket and it is equally horrible when she goes limp, or makes her body as firm as a board, or - like the unions with BA - withdraws all cooperation, or even tries to pinch her mam (never her dad; she probably knows I'd pinch her back). Then, we get days like yesterday and today, when she is as good as gold. It's all about self-assertion, self-determination, choice and finding new skills and needs as she interacts with the world around her. But it's darn frustrating at times. And even more so when School tell us that she is very well behaved with them. Pah!

Still, to end on a lovely note, four pics that show why it is all worthwhile; Angharad grinning at a party; a rare picture of her with dad (I'm normally the other side of the camera); Angharad playing fetch with the dogs; (i.e.she throws, they fetch!) and Angharad at the PARC play-centre last Friday enjoying some rays!

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