Updates on Victoria Lily Joy van den Broek, born 120705.

Friday, January 30, 2009


I have been aware that I needed to update- my excuse for leaving it so long again is that I've not really been well enough.
Victoria is getting along nicely although a recent run through the developmental check-lists was a little discouraging - mostly because she doesn't SAY much. I tell myself that she follows conversations well and communicates (finding a bit of biscuit she left yesterday she just asked me, quite effectively, whether she could have it) so I assume she understands a lot. The report from the recent speech-therapy visit (which went a bit better than the September one, but not much!) was also depressing. The lady who is of most help right now is the visual impairment support lady. She told me she knows of a group which meets about 10 miles away - it's a group speech-therapy thing. I hope to find out more. I am painfully aware that parents with a child who has d.s., if they have NOTHING else ALWAYS have a speech therapist. A group opportunity will be a good sight better than nothing. Meanwhile I continue to follow the guidance from the Down syndrome Education trust and otherwise do just as I have with the others and hope for the best.
While I've not been well Samuel has been doing the morning session with Victoria some times. She seems to enjoy that. Advice from the visual impairment lady (Cathy) has caused me to re-do the names in Arial so I'll need to laminate them. It will be interesting to see if Victoria finds them easier to read. meanwhile I have finally added sentences to the book of pictures of family members - we'll start on reading that tomorrow. An action-packed weekend of visitors will give Victoria lots to entertain and instruct her - she LOVES people.

Wednesday, January 14, 2009


today at dinner we had carrot-and-celeriac salad. Towards the end of the meal there were some allusions to the similarity between the salad and hay. Asked what was in it I listed the ingredients : raw carrot, raw celeriac, mustard and yoghourt. Victoria was paying attention and began making 'roaring' noises at those within reach - it took Ron to re-wind the conversation and discover that it was simple matter of equivocation which was the cause. What a hoot!!

Off to Cardiff tomorrow - with the reading stuff (today she read NO names, I wonder if they are too small.....).

Tuesday, January 13, 2009

speech therapy

Tina seemed to be bending over backwards to convince the youngster who is assessing Victoria in her capacity of speech therapist that Victoria isn't as stupid as her September report indicated. Victoria still didn't either warm to her or easily understand what she expected of her. I confirmed that I didnt' want weekly input from this person (though she did seem to indicate that it could be her 'or someone else') and she is going to ask her supervisor (who, I hope, will be the lady I had a good chat to after her lecture on speech-therapy services which I attended a few months ago) whether it is OK to just assess at 3-month intervals.
I'm glad it's over but we're not really any wiser. she suggests that the sounds we should begin working on are those which Victoria CAN'T do (like 'k' ) and blend them with any vowels. I thought there might be certain consonant/vowel combinations which would LOGICALLY be a good starting point. It's galling when you just are not understood by the person you are trying to communicate with. it makes me very thankful for having had Tina, who always seemed to understand where I was coming from and supported me perfectly.
At least Victoria showed perfectly well (and with astonishing swiftness) which, of three pictures showing vowels, she was asked to point to. she even went back to the book afterwards and named/signed some of the pictures.
Victoria will be expected to learn some new signs for verbs next, once we recieve the promised list from the speech therapist.

Saturday, January 10, 2009

precious moments

Ron and I went to costco this mng. Victoria came along for the ride. She enjoyed seeing all the things and from time to time would wave her arms about and interpret what she was seeing. On the way back I was holding her hands to make them warm and she started singing . The first two phrases seemed to be about being warm (or maybe her hands being warm) and she developed the theme for the next 10 minutes. The range of notes she used was from Doh to Soh - all fascinating stuff. I was reminded of an 'Ealing Comedy' in which the bad guy was masquerading as the Bishop of Matebeleland and offered a mock quote from Scripture in the local lingo!! I can't say it often enough, Victoria is the greatest blessing this family has ever had!
Still in the habit of pulling out the hair on the right while she sucks the left fingers, it really was looking VERY wild. Today after Joanna bathed her and washed her hair I made a fringe and trimmed all round so that it was less imbalanced. Before she went to bed last night I sewed up her sleeve so she couldn't pull out hair - will have to do that on all her PJ's I fear, if she is to develop proper HAIR any time.
She's having a late sleep now after all the excitement of the morning.

Thursday, January 01, 2009

expanding vocabulary

After visiting friends with a dog Victoria can now, when she thinks about it, say 'dog' - rather than 'oooh' when she sees one. Today I noticed that she said 'don't' when I threatened to tickle her - I daresay she's been saying that to James for a while since he often does, or threatens to do, things of which she disapproves.
As for all the other things she says, well, I'd better get making a list because next Wednesday we have a visit from the speech therapist who was so very negetive back in September.
Victoria has really enjoyed all the visitors we've had over Christmas - we've got more today and more again (including small people) on Saturday.
Monday sees us all with our noses back to the grindstone and since all the details of what I need to be doing with Victoria over the coming weeks is not yet are not finalised I'll be needing to do some more reading-up today.
Photos are being printed for which I have to type up text to make a 'book' for Victoria which will use some of the words she has been workign on each day (including many of the family names).
+ Raising Down Syndrome Awareness -