Tuesday, 22 June 2010

Parties and best friends

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

Playing up

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

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!

...and a while longer

In the previous post I mentioned all the parties Angharad's gone to of late. Here are some snaps. The face-painting was done by a very gifted woman at Charlie's 4th birthday celebrations. The series of pictures where the kids end up on the floor come from John's 4th party, where Angharad and Sophie invented their own game of sitting on soft-play equipment and then rocking it until they all fell to the floor. This was taken up by the other kids until they piled atop one another in a screaming mass of limbs and laughter!

It's been a while

Apologies for the recent extended hiatus. I have been querying the benefit of this blog given the limited audience but am considering ways of extending its reach. More of that another day.

Let's catch up with Angharad. Since April she has attended many 4th birthday parties (primarily school-friends) and 2nd birthday parties (primarily family friends or peers from her dance class). A couple of incidents from these stay in the memory.

At one little girl's 4th party Nik and I both went with her. It was a Saturday and it was nice to go out en famille. Towards the end of the do we lost sight of Angharad for a short while. She had walked from the room she was in with me into the room Nik was sitting. Or so I thought. Realising that I needed to check that assumption out, and no more than 10 seconds after she left my side, I looked into the next room and there was no sign of Angharad. The event was in a hall and all the rooms were connected via a central hall area which was bounded by the (locked) front doors. At the moment I went to look for Angharad the front door was opened by a staff member. No sign of ACE with Nikki or next door. My heart in my mouth, and envisaging Angharad having rushed out of the door, I called out "has anyone seen Angharad please?". All activity stopped and people dashed around to find her. After 30 seconds or so, from the room with Nikki, the mother of one of the party kids called back "here she is!". Everyone stopped searching and Nik and I ran over to get her. It wasn't Angharad. It was another little girl with Down Syndrome who was at the party. My heart beating faster than ever I ran outside to look for her and then had a brainwave. The toilets. Angharad's been training in toilet use for some while now. So I dashed back in and there she was, in the gents, washing her hands in a sink.
     I thought the moral of this story might be that we need constant vigilance and eyes in the back of our heads. Or maybe that we've conditioned ourselves to panic too easily and overprotect our kids. Or even a reflection about the horrible feeling in one's heart and stomach when our kids disappear. However, for Nikki this was a whole other story. She was very upset and this came out once I'd found Angharad; not with me for taking my eyes off Angharad, but with the mum who had shouted out 'here she is'. As Nikki put it "she didn't see Angharad just the [shared features of] Down Syndrome, and that led to the search stopping". If this judgement sounds a little harsh it was at least understandable. Angharad and the other little girl (whom we know well) looked nothing like one another, were different heights, and were wearing outfits dissimilar in almost every way. And the mum in question must have seen Angharad twice most school-days since last September. It may all have been an error of identification. But it may have been a signal that the mum saw Angharad's condition and not Angharad. Despite maintaining her silence that was what Nik believed and was what upset her. This next picture was taken that day.

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.

Emmy is possibly Angharad's best mate. With Aaron, Jack and Daisy maybe. But there are lots of kids who fall into that category at different times. Some of the children don't always treat her as an equal; because she is smaller than all bar one of her classmates some 'baby' her and smother her with protection. Others, like Em, have always managed to treat Angharad as no more nor less than an equal. This, despite the obvious drawback arising from Angharad's inability to use words to express her own wishes and desires. I guess Heidi's point is that more and more of her classmates are treating Angharad more like an equal now - because that is how she behaves with them. Language or no, she communicates very well.
     We heard a fortnight ago that the LEA has agreed that ACE should remain at the Marlborough Infants' School for her 'reception' year this coming September. She has a Statement of Special Educational Needs and this notes that she is to be admitted to the school's special requirements unit. This is staffed by the Deputy Head (who doubles as the SEN Coordinator or SENCO) and two classroom assistants, for no more than 10 kids. This excellent ratio means that Angharad will stand every chance of gaining language and other skills necessary to her future. And the kids in the Unit all follow the same curriculum as their age-peers. A down-side is that she wont be in the reception class with all her peers from this year's Nursery Class. But they'll mix, formally and informally, across the school week and we intend maintaining parental links to keep this year's friendships very much alive. A downside is that Emmy will be moving to another school. So here are two more snaps of ACE and Emmy - with Sofia also in one!

A month or so ago we visited Aaron's, and his twin Mya's youngest sister Asha, for her 2nd birthday. A grand time was had by all. Their dad, Hatel, a top clinician, likes his gadgets and he caught the kids' imaginations with one of them...

The swimming and 'dance' classes are among the highlights of the week's physical activities. We swim at a local health club where Angharad has 1:1 lessons with Natalie, a "Waterbabies" instructress. We've moved on big-time in recent weeks and instead of Angharad doing lots of playing and splashing, but not much swimming, the last two weeks have seen her build up to dog-paddling the whole length of the pool (wearing a float jacket and with a bolster across her chest and under her arms) and swimming a good third of the pool in nowt more than the float-jacket and an ear-to-ear grin. She loves it! I have no recent pictures of her swimming because the pool has an OTT policy of no snaps, even of one's own kids. The dance class is held every Thursday afternoon at the Rubicon Centre (http://www.rubicondance.co.uk/). There are a smashing group of kids there; here is Angharad with one of them, Eva, sharing a packet of crisps, and another where she demolishes a plate of jelly.