Saturday, 26 December 2009

Christmas with a Swansea flavour

Each generation develops new practices that get repeated and before you know it a new familial custom has been adopted, accepted and anticipated with relish. For us such a 'new custom', to risk oxymorony (or maybe just morony in my case, after too much wine and fine food), is travelling to Swansea to have xmas lunch with Jan, Rob and their boys (read: 'young men' now) Nick, Liam and Alex. In the evening we have been invited to stay over for an evening party and the festivities generally end late Boxing Day afternoon after watching the Ospreys (their rugby team) whup arse on the Scarlets (my team) on TV. Angharad has sooo much fun 'cos everyone plays with her but treats her respectfully as the little independent miss that she already is. Each of Nick, Liam and Alex are fine athletes and at one point Angharad was passed between them as if she was a rugby ball. Needless to recount she loved it. A couple of pics of the event are attached. Next highlight will be Monday when we take Angharad to see her Taid (Welsh grand-dad), aunts, uncles and cousins in Rhoose. I feel tired already; not a problem for Angharad!

Sunday, 6 December 2009

A lollipop in Ross

We visited our friends Deb, Gary, Oliver, Joel and Sirius this weekend. Thanks to all for a wonderful time. Angharad had her first ever lollipop, which she shared with Sirius the Scottish Deerhound. Very proud of Angharad as she was happy being just one among many and didn't demand to be the centre of attention or suchlike (even though she often was, which was a different thing entirely!). It struck Gary and Deb how much easier things seemed for Angharad at meal-times - sitting down at the 'big' table without need of special high chairs and without fear of thrown crockery. I guess one can miss such changes when being with her routinely. Pics of Angharad and lollipop and an older pic of Angharad with Sirius are attached.

Tuesday, 1 December 2009

A good heart

Angharad today was signed-off by her Cardiologist, Dr Dirk Wilson. Having had open-heart surgery at 16 weeks old and been reviewed regularly since, culminating in today's final annual visit, Dirk said that there are no holes left in the heart, that her lung-pressure is normal, and that she is well enough to be discharged from his care. More than that even, she isn't really at any greater risk than anyone else; for example, in terms of the pre-emptive H5N1 jabs, she isn't in the first tranche any more, just the 'child under 5' group. To lapse into the demotic for a moment: RESULT! Our thanks to all the medical and nursing and outreach staff and helpers, families and friends, who have brought our little girl to today's excellent news.

Sunday, 15 November 2009

"Adventure Ted" comes to stay!

Angharad's school sent Adventure Ted home with her for the weekend. If you link to here you will be able to access it.

Monday, 19 October 2009

Angharad changes a CD (video)

This links to a video of Angharad mastering our CD system and putting on her favourite disc. She was three and a half at the time. She first mastered most of this process about 9-12 months ago but has got it all taped now. The video she removes was my JS Bach CD  - the Goldberg Variations, played on piano by Andras Schiff in his second recording - a phenomenal disc!.

Saturday, 17 October 2009

Up before the Beak

Last Thursday (15th Oct) Angharad's nursery teacher told me that the Deputy Headmistress, who is also the SENCO (Special Educational Needs Co-Ordinator), wanted to see Nik and me at 1100 hours on Friday. My atavistic and instinctive reaction was dread; reminded of those occasions when I had been told to stand outside the Headmaster's door. 

'Barrel' looked as you'd expect a man with that moniker to look, rotund with a shock of white hair and a square face. In Lower Sixth he assured me that I needed to get my finger out [his words]. Since then I had to see the Head of School during two of my four degrees for various offences mostly being variants on the theme of get your finger out and do yourself justice.

I broke the pattern at Cambridge when the Head Honcho wanted to know how I'd got on during the Ash Wednesday vigil at the MoD in London. I'd been arrested with 90 others, in my case for chalking "PEA  " on the walls. The arresting officer couldn't get over the fact that I'd written up a vegetable, overlooking that this was a Pacifists' Peace Rally and that he had interrupted me halfway through writing PEACE. This was during my Fellowship of Reconciliation, hippyish, hug the trees period. Now, I recommend nuking things. 

Anyway, we turned up on Friday and the Deputy Head simply wanted to talk about Angharad's Individualized Education Plan. For three year olds these are quite basic of course. Listening to Today on Radio 4 that morning Ministers of Education were doing their best to rubbish the Cambridge report that stated the emphasis on SATS for 5 year olds was wrong and that later commencement of formal education was more effective. So we were already thankful that here in Wales the Assembly has adopted a Foundation Phase that recognizes the benefits of learning through play for the earliest years. Well, for Angharad the school wants her by xmas 'to understand and express person and action phases when supported with signs and symbols', and 'with support, to be able to sit still on the mat during class/group book sessions alongside the other children'.

Fancy that - ACE is not yet brilliant at sitting to order! Mistaken identity surely? Mind you, she can sit when SHE wants to for lengthy periods. But that one should be achievable. And, judging by her fine achievements since starting school, she should make further progress on the words and signs too.

It's interesting this. In Thursday's dance classes the kids are each asked to choose something for the group to do in that song - wriggling, jumping, rolling, running, etc. Similarly, in Friday's music class the kids are asked to name their favourite animals so that the group can make the relevant noise.  Angharad understands each of the concepts (running etc) and knows all of the animals that might be chosen. She can differentiate between each concept/animal and she can use the relevant Makaton sign. She can even accurately point/pick out combinations of these (e.g. running horses, wriggling snakes, sleeping elephants as opposed to sleeping horses, and such combinations). But she is not yet able to make that separate conceptualization of imagining ab initio from a tabula rasa (heh, sorry!) an action or animal noise. So I give her a paired verbal comparison/choice and ask her to say 'yes' to the one she'd like me to convey to the group. Close but in no way the same thing.

I'm not sure whether this is a deficit that is a consequence of Down Syndrome or simply a slowish development of a skill that she will develop as soon as her language development gets over the current, DS-related, early difficulties. Of course, there is no guarantee that she will get over these early difficulties, but most of us expect her to. The downsed publication 'An overview of the development of infants with Down syndrome, page 7 (link below at end of posting)' puts it thus:


...are more delayed than the children's non-verbal understanding and reasoning abilities. This is a pattern of specific language impairment. Most children with DS understand more language than they can use as a result of specific speech production difficulties. For this reason, learning to sign will help the majority of children to communicate, to show their understanding and reduce their frustration. Hearing difficulties, usually due to 'glue ear' are common and contribute to speech and language difficulties.  For msot children with DS, the most serious delay that they experience is in learning to talk. This is not only frustrating but it has serious consequences for all other aspects of their social and cognitive development.

...As children learn to talk, each new word that they learn is a new concept or piece of information about their world. Once they can string words together, speech becomes a powerful tool for learning and communicating with everyone in their world, and it also becomes a tool for thinking, remembering and reasoning. We carry out these mental activities using silent speech in our minds. While we can also use visual imagery to imagine and recall events, reasoning with the use of language is considerably more powerful. It follows that a serious delay in learning to understand and to use language will lead to delay in all aspects of mental or cognitive development. Conversely, if we can improve the rate at which children learn language, this should benefit all areas of their social and cognitive development.'

The advice goes on to note that 'working memory development, particularly short-term memory, seems to be specifically impaired - again not processing as fast as would be expected for non-verbal abilities - and this has consequences for their children's ability to process information', but that 'visual memory and visual processing are relative strengths... and [they] should be thought of as visual learners'. While 'reading ability is often a strength from as early as two years of age, perhaps because it builds on visual memory, and reading activities can be used to teach spoken language from this time'.

At page 6, the downsed publication notes:


...Most children with DS can achieve a number of the same developmental goals at 5 years of age as other children. Most 5-year-olds are walking, toilet-trained, able to feed themselves and put on at least some of their own clothes.

Most 5-year-olds are able to be part of an age-appropriate group and can conform to the social expectations in the classroom. They are able to sit at a table, listen to the story and follow the teacher's instruction - with some needing no help to do this and others needing some support. Most children can control their own behaviour and are not anti-social. They have appropriate understanding of the emotions of others, e.g., when they are happy, sad or hurt.

Therefore motor skills, social progress and behaviour are strengths. However, most 5-year-olds with DS will have significant delays in spoken language - typically talking in 2 or 3-word phrases, and the words may be difficult to understand. Some children will have a knowledge of the maths concepts needed in the classroom, and be starting to count, despite general language delay. Some children will be reading a sight word vocabulary and know their letter names and sounds, despite having language delay.

One excellent sign: ACE already loves books and being read to. She will also sit by herself for long periods looking through her books. And playing the piano! I am looking into music encouragement for her working with Helen from Fridays' classes. We are going to take her to pound some gamelan in the St David's Hall soon and she loves Helen's electric piano too. This week Nik, ACE and I went to the fun pool at the Sports Village in the Bay. It's the first time that the 3 of us have been in the water simultaneously and we all loved it. ACE was her usual self and also explored the water slides. 'Explored' is the wrong word. 'Bounded onto again and again' does it more justice! 

A snap of ACE in her Pippi Longstocking mode taken this morning is attached. For horse and monkey swap dogs and parents!


Friday, 2 October 2009

Interesting links

This first link shows a young Dutch man with DS who lives a more active life than I manage just now!

And I found that last link by visiting this music-making site, which itself links to informative dissertations:

Create your child's own book!:

Thursday, 1 October 2009

Boosters and pigs

Angharad had her two Booster jabs today. No more now until she's 13. As a reward she did her Peppa Pig thing!

Two weeks into Nursery School

How to tell whether Angharad is enjoying nursery school? After breakfast this morning she signed to Nikki demanding, more or less, that her raincoat be found so that she was ready to go; then she went to get her school-bag and  carried it to the front door, where she waited impatiently for me to catch-up. No 'creeping unwillingly to school' for her. Secondly, when I got her to school,  much earlier than usual!, she and her friend Sophie gave each other huge hugs and then sat down next to one another talking, pointing at sunflowers and happily swinging their legs back and forth. Then, mid-morning, we had a phone call from Mary, Angharad's Helper, telling us that she was so excited that writing this up in our School/Home Liaison book was insufficient communication. Angharad had worked hard today and was saying, not just signing, a whole host of two or three word phrases. Since starting nursery on 17th September, we have seen a significant increase in her signing of of two-word phrases and a  similar increase in her attempted pronunciation of single words. Her Speech and Language Therapist, Wendy, has given Mary and us exercises and games to work through with ACE and they are clearly having some effect already. These include the Mulberry Bush game, and a Springy Spiders game. Add to these a foam cube wrapped in plastic casing into which pictures or words are slotted and we are currently in Low Tech language heaven! 

Wednesday, 12 August 2009

Chez Amanda

We had a lovely afternoon yesterday with Amanda, Aaron, Mya, and Asha at their magnificent garden, under Amanda's wonderful hostess-ship! I took couple of vids on the moby but the quality of picture, though not of sound is awful. Camera work not a lot better. Still, you can recognize ACE as a car passenger under Stirling Aaron's excellent driving, see a few secs of ACE driving the car herself and a few secs of each of the kids. (Memo to self: take the darn video camera next time - that's why you bought it!) Amanda wrote something lovely to us after we got home: "Angharad's speech is lovely, she has a lovely voice". Blast. Can't get the vids to load.

Monday, 27 July 2009

Well, Angharad has excelled in recent weeks. Significant growth spurt allied to signing and talking lots of words now. Her most recent activities include swimming, yoga and artistic expressionism (drawing on the walls of her bedroom!). Starts in mainstream, integrated, five mornings a week, nursery this September and we think that she will enjoy every minute of it.

Monday, 9 February 2009

Farewell Portage... and thank you!

Today, the wonderful Janat Bebb visited Angharad at home to deliver ACE's last Portage session. Jan is a CDA (Child Development Assistant) and is part of the local Child Psychology Department. Janat said that in all her time doing the job she's only known of one or two other kids who have reached this "out of criteria" stage and had their Portage stopped in advance of the due date which, in Angharad's case, would have been September 2009.

This is fantastic news in just about every way - despite her DS, Angharad does not have learning difficulties and hence doesn't now require Portage. Still, we'll miss Jan. Apart from her professionalism and friendliness she has been our yardstick of ACE's development. She brings fresh, age- and development-related tasks each week; tasks that are based on the development of kids without any syndrome or difficulties. And Angharad is where such a 'normal' child would be for her age in almost all the categories, the exception being the physical categories - where her DS has necessarily slowed her development and will catch up with time - rather than the cognitive, social or emotional developmental categories where she holds her own.

An emotional morning. Still, Angharad also had Speech and Language Therapy today at UWIC with Hannah Plumpton and her mature student Cathy. We are concentrating on 'P's and 'S's for the week ahead and, as ever, Angharad was a little star in the session. I love that little girl! The pics were taken from the Portage xmas party 2008 and Santa Claus was Jan so they seem appropriate today of all days!

Monday, 2 February 2009

"What it says on the tin..."

Excuse the lengthy delay. Not gotten into this properly yet, that is clear. Mind you, another part of my mind rails against setting up and continuing a blog and website - there are enough nutters and perves out there as it is; am I putting my family's safety and privacy at risk even with the sites I have today? No answer to that yet except to keep alert and ask the same question again in the future.

Anyways.  A few bits of good news that have nonetheless unsettled Nikki and me.

First, we mentioned previously that the assessment of Angharad for a Statement of Special Educational Needs was underway. We'd always assumed that such a Statement would be both necessary and forthcoming. We'd assumed it because Angharad has Down's Syndrome. Thus, in error, we labelled our little girl according to her condition and had expectations that followed naturally from our original error. Well, Janat, our Portage Care Profesional ( had previously intimated to us that maybe ACE wouldn't need a Statement or might not need the type of Statement that we'd assumed would be necessary. Our first reaction was that "no Statement = ACE loses out" and it took us a few hours to get used to the idea that this was good news. Yet, had we been told, at the same time we were advised that she had DS, that Angharad would be able enough not to need a Statement then we'd have been delighted. She'd have been just like any other 'normal' little girl. Well, Janat was only expressing a subjective opinion when she made that suggestion a few weeks ago.

Then, the Statementing process got underway and ACE was assessed by an Educational Psychologist both at the Playbox nursery (where she has a whale of a time two mornings a week) and at home. He took her IQ. I have no end of problems with IQ testing in principle and in practice; but I can return to those another day. It turns out that ACE was "well within the 'broad normal' range". If 100 marks the population average for IQ then the broad normal range is 80-119. Learning Disabilities are judged to be ratings of <70.

Today, Janat told us that Angharad is now "out of criteria" by which to measure her Portage needs and that after only one more visit - next week's - ACE will have no further need for, nor be in receipt of, the weekly Portage sessions. By any criteria this is good news. Angharad's detailed developmental profile is assessed in the Portage sessions. This assesses her performance in areas such as Self-Help, Motor skills, Language skills, Socialisation, and Cognitive skills. Anyways, since she doesn't have Learning Disabilities Angharad can no longer have the Portage service. Which also coincides with her high performance in each of the headings, above, as assessed by Janat. Again, this is good news but we feel as if it is bad news too. We've come to see Janat as a friend to us both and to Angharad, and her weekly visits have become much more than assessment sessions. So there's going to be a need to 'let go' of her professional expertise and her friendly support. It shouldn't maybe, but this feels scary! 

Still, Angharad manages to kick our backsides each time we run the risk of labelling her and I'm sure that she'll do the same thing this time and continue to go from strength to strength!

To conclude, I shall write-up something about the classes that Angharad attends in 2009. These include Tumble Tots (, Music with Mummy and Wyn (, Disco Tots (, Tatty Bumpkins (, and more. Bottom line? She's having a whale of a time!