Tuesday, 15 June 2010

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.

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