Ina Ciel

Almost a big girl now

Ina started reception class on Monday, 8th January 2007. The arrangement was to start a week later than other 'new intakes' in order to avoid the uneccessary upset at witnessing other children settling (i.e. crying and wanting to go home). This was essentially a good move, apart from many other glitches all driectly related to our everyday challenge of being both parents and unwilling representatives of educational system involved in firing and hiring teachers, managing them and at the same time dancing to the tune of school politics. Because, on that Monday, Ina's first day at reception, we didn't have tutors for 9 am. Instead, as we found that out on the 22nd December, not a single of our 4 therapists could do 9 - 1 on her first day of school. We were saved by Ina's supervisor who did a 1:1 session with Ina. And we started doing some hiring and firing.

A week later, and Ina has not been to school yesterday but had a home session in the afternoon.

School 2006 Part 1

Ok, as part of our rash of updates to get over our guilt and fast-moving events, we had an annual review of Ina's statement of special needs (as issues by Greenwich Council Education Service) to date, which basically amounted to the programme we put in place since October 2005 mainly at home, but also in nursery school at the local primary school for 2 1/2 hours each morning.

This review happened in June 2006 at the school, with the headteacher and nursery teacher, us, and, to our unsure anticipation, the council's reps.

Running through the statement of last year and the various objectives set out for the short time IEP, all from the school agreed Ina had met her targets in terms of communications, motor skills, etc.

We could but let the school staff talk in her favour and bask in their praise.

I did not hesitate to interject where needed, that some of the results where down to the approaches and techniques of the programme that simply employed good sense in terns of stimulating learning like motivation harnessing, generalisation, and extinction of bad behaviours with instructional control using consistency and only rewarding positive behaviour.

Phew, so far so good!

Unfortunately, following all that, both the nursery teacher and the head teacher have left, so we must rebuild new relationships with their replacements.

We agreed to put back entry into full time school, ie., Reception/kindergarten from this September (as she is eligible already) to January 2007. This depends on some intermittent visits for gradual familiarisation, and lots of meets with the Reception year manager.

Will this all work? So far most every thing has been done at home, and the full force of the techniques have achieved the greatest results because home has been the primary setting. School is mainly a socialisation exercise, not for skills acquisition, or breakthroughs. What will happen when she spends more time at school? Will the school continue to allow us this buffer zone of therapists practising our techniques to enable her to access the social things and National Curriculum in time?

This is all too hard to know, and we really want to find ways to involve the school staff and equip them as best as possible.

Well, the umpteenth update for 2006

Well, where do you re-start? We've promised this often enough.
Never mind.

Let's pick it up from earlier this year.
As you know, we've been carrying out our Verbal Behaviour programme with Ina since October 14th 2005 (the first anniversary of her official diagnosis of ASD by the Community Paediatrician).

We've had 3 therapists brought in the the University of Greenwich, and had a few changeovers since then. In addition to our consultant, we have a supervisor to manage delivering the programme.

Following some diversions and tantrums, we moved over to signing as a response and augmentative language technique for Ina to address problems in demanding vocal words back from her when she just wasn't ready or willing. This moved things on in terms of giving her some expression she was happy to pick up and making our interactions much more productive and fluid. We went for volume, wanting to establish the value to language with her, via the easiest form of expression to start with as a gateway to later forms.

At Xmas 2005, we spent it all apart so Vana and Ina were in Serbia and I got on with my new job after the long search over that time. Somehow we recovered and got back on track with her stuff after that were back.

Another similar thing happened later in July 2006, when they again went to Serbia and by then the whole programme was established enough so a break could not disrupt it all too much.

In fact some 2 weeks before that, Ina suddenly decided on echoing back words and using them in place of signs for her manding - Jesus, all of it just came tumbling out as Vana's article earlier foresaw. A real flood of words came out so easily and clearly in a way not just a few months ago we would have thought as impossible or at least too far away to imagine, much too far to think about as possible at the time. It's incredible to keep being reminded only in sudden and periodic and special times like these how all that potential and capability is all in there, and it is just her deciding when to release it.

So just about anything we might want to say, we can get some echo from her - once it's been said, it can easily be made more functional using the VB techniques we've all been learning, and many of these are already functional and being appropriately used for manding, her demanding use of a word, which is our starting point before carrying the word across other uses like commenting, etc.

We'll work on listing and posting regularly what we think is her current vocabulary, this is such a moving target in this crazy time.

words come tumbling down

A recurring dream of mine was (and still is) having Ina looking me in the eyes and saying something meaningful. I mean, with communicative value - we have our range of chants, whispers and shouts from Dora, counting numbers, labelling colours, but those are uttered in the air, left, right and off centre, in motion, never to someone. That tantalising desire that keeps us going, familiar to every parent of a non verbal autistic child, is having it normal (or typical - to be more pc); having her looking at you directly, capturing that fleeting moment and hearing however briefly and fleetingly; telling you a single word, however faintly or incomprehensible. Telling you what she loves, sees, wants, questions.

It has been seven months now since we started teaching her how to request what she wants through some form of communication; Ina is using, on and off, around forty signs, does a lot of pointing and saying 'look' to draw our attention. Those freakishly loud cries for attention have been gradually replaced by very confident and brisk hand moves. It has been a labour of love, all along; she has to ask for every single grape; every orange slice; every bite of bagel; we pause her favourite tunes or Dora episodes every 20 seconds so that she can ask for more; we are trying to get her to ask us for every sip of her liquid. With help of our therapists, each day, we offer Ina 500 opportunities to 'mand' - request the stuff she likes dearly.

And slowly, faintly, words are emerging, echoing what we are saying. It is hard to believe or sometimes even hear; it has been more than four years of waiting, or rather, hoping. The words seem strongest in the morning; saying Dora, good girl, all done, wait, open, juice, biscuit. We have to say it before she does; but we had to sign it before she did too; and she is signing it now. How precious some words are, however simple.