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!