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

Saturday, January 26, 2008


This week has seen struggles and steps forward. Struggles included Victoria's growing habit of saying 'no' - or something approximating to that - about food and sometimes even the work we do in the morning. Trying to decide whether or not she understands in some areas is tricky. Consequently it's not been a very good week for eating and drinking. Another negetive this week has been filling out the form for disability living allowance. I'm aware of the arguments against Christians taking benefits ('he who pays the piper....' and Chilton's insistance that we need a benefits rebellion - Christians NOT claiming) however, (dont' we always have a scary propensity to justify ourselves???), I'm probably producing more than the average number of tax-payers (3 contributing to the coffers along with my hard-working husband) and it is a consolation to get some of it back for Victoria. Everything Victoria has to learn needs more equipment than any of the the other children have needed, and gets better used, and the money gives me the freedom to take Victoria out to zoos etc. That said, I almost thought it wasn't worth the trouble. The form causes one to evaluate how long it takes to bath, dress, train, feed and generally watch one's child. One has to evaluate how incompetent this child is compared with a 'normal' child of this age. The rest of the time we are focussed on seeing the progress she is making and what she can do NOW which she couldnt' last week or last year. One gets the feeling that the government is suggesting that if one spends more than a 'normal' amount of time and effort on ones child it is THEIR duty to pay up. Of course I don't agree with that. I had bad dreams after spending 3 hours filling out this form. Maybe, some would say, it serves me right... Another negative this week has been that Victoria has been more than usually 'naughty' picking up things which don't belong to her and messing things up as well as (shock, horror) walking into the KITCHEN!!!! Sunday was exceptionally trying - suffice it to say that involved a nappy-removal and the desperate need for a bath 10 minutes before we were to leave for church. What I would do if I didnt' have Samuel and Joanna to help me in a crisis, I'm not sure, but I'm praising God for them both.

There have been lots of positives including that Victoria will now say 'mama' and tap me to get me to look at her face so that she can tell me something - normally asking for music, juice, milk, biscuit, book, paper and various other incomprehensible things.... One of the joys of children is when they start to TALK and you find out more about what is going on on the inside. It has been fun watching Victoria learn new signs and communicate and immensely pleasurable watching her 'dance' and generally be silly when music of various sorts is played. I often think we could just scrap schoolwork and spend all day watching Victoria and her funny antics. We've had no puddles on the floor - mostly because she has an incredible ability to hold on and we take her to the bathroom to shower her feet while she's on the potty before it's too late....

The appointment to see the cardiac surgeon is a week on Monday. I get butterflies when I think about that (there I go WORRYING again...) but am heartily thankful that we are so close to the hospital and that we have a top surgeon - and all this without causing us financial distress (thanks again to all my in-house tax payers and the rest of you!!).
I've been thinking about how music helps in the develping brain and ways in which it has been and could be used in play and work with Victoria. I've looked at one sort of music therapy - and I didn't like the ethos at all - it was not at all Godly. If anyone reading this can put me in touch with anyone with any expertise in this area I'd be glad.

Wednesday, January 02, 2008

daily routine

Having been asked recently 'what DO you do with Victoria in the morning' I thought it might be useful to set down what it is which occupies our half-an-hour closetted together. We don't always do the activities in the same order, nor everything every day.
'compare bears' in red and yellow (all of one size, the little ones, they're cute!) are counted into either a red or a yellow pot. We use five of each. An extension of this is to hold out one of each colour and ask Victoria to select one of them and put it into the right coloured pot.
Lauri pegs - plastic pegs which can be lined up and pushed together and pulled apart.
Threading. Recently we have progressed from large-holed wooden beads onto a stick glued into another bead, to threading onto a stiffened bit of shoe-lace.
Using photos of 5 family members which are named Victoria has to choose (from two) the name card which I hold up and ask her for one of. Then she matches them. The goal is to have her pick up a name at my request when the pictures have been put away. I'm sure she knows 'Victoria' and less sure about the others....
A tin with a hinged lid is used to hide 3 or 4 small items. I shake it about and ask for her to pick out a particular item increasing the time lapse before I open it and she can see into the tin and make her selection.
The activity which, even on a bad day, is always pleasurable to Victoria is the jolly phonics worksheets coloured in and laminated which, when held up, prompt Victoria to rehearse some of the sounds she knows and learn new ones.
Wooden puzzles with the pieces which have little knobs on offer practice in using the thumb and finger together and putting the pieces back in give opportunity to learn words like 'too big', 'too small' , 'rotate', 'turn round' and sometimes 'behind you'!!!!

It has been helpfully said that in any activity one must keep clear in my mind what is the aim (are we counting or are we trying to improve her signing, for example) but sometimes we take a little diversion and sing a song!

This photo session started out with the aim of getting a good one of the girls but more and more faces kept appearing! This happened to be the best of of Victoria overall.

A rare cuddle with Philip during the time he was home-based working for a family in the church.

recent pictures

Here she is on Christmas day.
+ Raising Down Syndrome Awareness -