Sunday, January 8, 2012

An hour a week

I wish that I had money. Lots and lots of money. Or, alternatively, that I had no more money than I had now, but I had never been introduced to Mumsnet SN board who pointed out to me the vast range of useful therapies and treatments out there.

When we arrived in NZ, we were crammed, sardine-like, into the tiny twobedroom flat that the university had decreed in its wisdom would be adequate for five people to share for three weeks (since none of my children are safe to share rooms with each other, the eldest went on the sofa whilst poor third son had to sleep in his cot next to the toilet). I had two appointments booked. The first was with a mortgage broker - we had to buy a house immediately, because no landlord would allow us to make the sort of alterations we needed to make the average New Zealand property safe for our kids. The second was with a VB/ABA consultant. Her prices were low, her website fitted my likes: not too intensive, plenty of time for living and playing outside the schedule of behavioural therapy: and when she came to see us in the flat, I liked her instantly. Yes, I said cheerfully, we'd love you to work with my son. Number Three, who threw quite a performance for her, hitting and biting and hairpulling before falling asleep in an exhausted twenty-three-month-old heap on the floor. We agreed three mornings a week, she suggested we build up to five: I said we didn't need that much, which translated of course as couldn't afford it.

Then of course the inevitable happened. The house purchase almost fell through. Our valuation came in ten thousand dollars too low. The way it works here, you need a registered valuation done if you have a teeny tiny deposit (we did) and need to buy a large house (we did: we needed four bedrooms, the boys cannot share safely and the alternative was to continue the family sleeping arrangement we had had in England, where in our three-bed ex-council semi my husband slept downstairs on the sofa with Number Three, an arrangement that our local Social Services Occupational Therapy Dept had officially deemed unacceptable). If you have a deposit of less than 10 per cent your valuation must conform to the price you are paying: but this is tricky, in a country where house prices are often twenty, thirty, forty or even a hundred thousand dollars above the latest RV. Our vendor dropped the price. We upped our deposit. The shortfall was made up: but we had no spare cash for therapy.

So I emailed, with a heavy feeling of foreboding, to this nice lady to tell her that we probably couldn't afford her after all for now, that this might change if we got carers' hours (a local version of disability support for families for which people keep saying we MIGHT be eligible): and that would she possibly, possibly, consider working with us for one hour a week, giving me exercises to do with my son in the interim, rather like the UK Portage model?
Obviously for anyone who knows anything about ABA this is a laughable idea, the ideal in many people's eyes is a 40hour programme and many therapists won't work with any less. But here we were, with no money and a new diagnosis of autism (our second: my middle son has global developmental delay with verbal dyspraxia) and no money to pay for a proper programme. I loathed writing the begging email, I loathed the wait for the inevitable, patronising, mechanical refusal to explain that it would be a waste of her time and mine.

Only it didn't come. Instead I got a kind email saying that was absolutely fine, she'd be delighted to work with us for an hour a week initially, and that she would be happy to wait for payment until we had been assessed for carers' hours.

Most of the people who read this will know that I am an Anglican deacon, ordained although not currently working. Much of my prayer life is devoting to berating God for not sending more help. A moment like this humbles me, an answered prayer, a reminder of the tale in the Bible where Moses strikes on a desert rock and water pours out. Sometimes God sends an angel to guide us in a foreign land.

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