Two little girls told me last week that Angharad is their best friend. It matters not that tomorrow may see some other child taking that role and another the next day. My heart burst with happiness that, at that moment, Angharad had the role. What's more they were both little girls she obviously likes to be with and, had she the words, I am sure she would want to say are among her best friends too. How come as we get older we keep such emotions closer to our chests? Is it because we have 'grown-out' of 'best' friends, or is it because we have just gathered-up so many friends, or is it simply that we assume our 'best' friends know who they are and that we are embarrassed to make a fuss?! Anyways, a few pictures from Sofia's lovely party last Saturday.
Wednesday, 16 June 2010
Following the description in recent posts of Angharad 'fighting' Nik and me - going stiff as a board, flopping to the floor, having sulks, screaming when having her hair washed - it was a blessing today to be told by 4 mums that their 4 year olds are also behaving in the exact same way just now. Apparently it can continue for a while...
... so it's not that we are poor parents. It's a developmental stage deriving from evolutionary circumstance. Yip yip! (That, or we are, all 10 of us, poor parents. Pah!) Lol!
Tuesday, 15 June 2010
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!
This last weekend however, at another kids' event a much more positive interaction. Heidi, one of the mums, enthused realistically about how much ACE has come on: "She's not just a 'baby' any more, she has presence and confidence and plays with the others, not just alongside them". And it is noticeable that many of the kids want to come and play here with her or have Angharad visit them. When they visit here, Nik's stairlift is usually a source of great pleasure. Here is Angharad with Emily.