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Tuesday, January 31, 2012

An Interesting start

So on the first day of school, my eldest got lost at lunchtime. He didn't come back to his classroom. Fortunately, he hadn't left the school grounds: the alert was raised that he hadn't responded to the bell and the headteacher, deputy head and groundsman started looking for him. "It was a bad ten minutes," the deputy head said to me cheerfully. The groundsman spotted him trying to get into a shed in a distant part of the grounds.
"You know the good news?" Mr Cumulus said to me on the phone when I told him. "They told you."

He's right, of course: we have had similar episodes at English schools which have been brushed off or covered up by staff. His class teacher was, however, delighted with him. Apparently when she gave the class a warning not to waste paper he piped up with a little lecture about why exactly that was, what happened to trees if you did that...it went on for some time (I imagine she may grow less fond of these spiels if they occur too often) and another boy asked the teacher "Is he a genius?" Hopefully they are all still young enough that this does not spell death to his street-cred. To my delight (and astonishment), he has already been assigned a TA: for half an hour a day at the beginning of lessons, to do some social stories and explain to him anything unusual that is going to happen during the day. The fabled Ministry are also involved, after school rang them and told them that from my description it sounded as if he fitted the category of moderate needs. They are meeting us next week to discuss what extra help he may need.

On the way home - I decided to walk, it is only down the road, about a ten-fifteen minute walk although most of it uphill - he started complaining of pain in his foot. It was hot. I was tired and pushing a very heavy double SN buggy. No, you can't have a ride, I said snappily, you have GOT to walk. Come on, keep going, at home there's cake. But oddly for what looked like classic whingy-child-syndrome, the promise of cake didn't work. He whinged and moaned, got another ten metres and then collapsed at the top of our driveway complaining that it was too sore. When I challenged him to get down the long driveway anyway - yes, I am cruel, I didn't want the extra weight in the buggy - he started to shuffle, crying, on his bottom. Oops, Mother-FAIL, it WAS referred pain caused by the Perthes disease temporarily incapacitating him, and not just a whingy child who didn't fancy a walk home. Well, how am I to know?

So tomorrow I shall have to ask school to ensure that he plays gently, no jumping, climbing frames etc. On the one hand, what a nuisance. On the other hand, they are getting a fairly good flavour of why this is a child who might need extra support from time to time.

Saturday, January 28, 2012

Mistranslating Maori: more butterflies about Kindy

Every country has its own mythology. Prior to moving here, I thought that New Zealand was remarkably clear-eyed about itself, with the exception of a forgivable and entirely understandable national delusion that the All Blacks are in fact God's Chosen Team. But I have discovered a second, the simplicity of Maori, which is apparently such an easy language to pick up that it is astonishing that you, dear reader, aren't already speaking it fluently purely by virtue of having watched the haka on telly during the Rugby World Cup. There is a particular gleam that comes into New Zealanders' eyes when you mention you would love to learn Maori one day. "Ah yes," they say, "no problem, it's very easy."
Really? you say hopefully. I thought, being a South Pacific language with no grammatical similarities to the IndoEuropean group of languages, that I might find some of it a bit tricky, if not darned impossible. I mean, a language teacher once advised me it helped to speak Maori if you already knew Japanese. Call me naive, but I have never thought of Japanese as an easy linguistic stepping-stone before.

Thursday, January 26, 2012

"But he has such lovely manners": Not Eating My Hat Yet

On the first day of kindergarten "settling-in" period, all seemed to go unexpectedly well. I almost wrote a post titled "Eating My Hat," so helpful and chirpy seemed the staff. I was particularly impressed - again - by the kindergarten manager, who took great trouble to get to know my son, pointing out several developmental features that his former school had missed. All seemed hunky-dory. Don't be too pessimistic, I thought.

But I'm glad I didn't ACTUALLY eat my hat, because the very self-important teacher who had given me such a hard time about my son still being in nappies had not finished her work of spreading alarm and despondency yet. Today came over for a chat to me today. She pointed at my youngest son. Who is gorgeous, and has amazing visual and spatial skills. And spends most of his time at home wandering around with a toy hammer, shouting "amma!" and banging everything he can find. Unsurprisingly, he was fascinated by the hammer and nails on the woodbench, and had spent most of the morning holding a hammer and trying to bang, a task that we had all noted he was managing extremely well.

"He's very advanced for his age," she said to me. "Yes, he's good at that," I said, absent-mindedly - I had found a Maori picture dictionary, and was passing the time trying to learn a few words - I can't remember what she said next, but it was something else complimentary about my son, and she said it quite aggressively. This made me look up. "Yes," I said, laughing "of course the difficulty we have is getting him to do anything that isn't his own agenda."
"He's two," she said, "for goodness sake." I looked at her oddly. "You do know he has a working diagnosis of autism?"
"Yes, and I would challenge that," she said flatly, "because he held my hand when I wanted him to."
Oh God, I am in one of THOSE conversations. "Right," I said, non-committally, hoping for an escape route.
"And [she named my oldest son, who was leaping around the climbing frame in bliss at having something to do that wasn't just hanging out with Mum] He has such lovely manners, I mean the best manners I have seen."
Yes, thank you. I am a good parent, I have taught him to behave. Oh, and he has ASD which means that he remembers social rules very well when they are clear and literal, like always ask adults nicely for things. It's actually slightly symptomatic, that he is so extremely polite. I didn't say that, of course, because I could tell what was coming next.
"I just think he's very very bright. I mean I think he's bordering on being a bit of a genius really. The things he knows. And he's very affectionate. I don't think there's anything wrong with him."
There were so many ways I could have challenged this. Perhaps I could have started by saying that in essence I agreed, that I think "wrong" is an unhelpful term to use for many HF ASD kids because it is more that their brains are developing differently and that they need some help in specific areas as the grow, rather than that they are unlikely to lead independent adult lives (the practical longterm definition of intellectual disaiblity as opposed to delay, I always think). Perhaps I could have pointed out that Einstein was a good example of someone who was both bright and autistic, and that the two designations weren't mutually incompatible. I could have done what I in fact did, point out that the idea of affection and ASD being incompatible is a mistaken one. Or I could have finally done what I have always longed to when the ignorant come out with guff like this, ask her if she knew of a really nice big cliff locally, because I was more than happy to help her take a running jump. But really, it didn't matter what I said, because she would have not listened to a word anyway. I was a BAD PARENT and I was WRONG about my sons. (And the community paediatrician and the consultant and the speech therapist and the OT, of course. And my eldest's last school. And his Beavers pack. Yes, we were all WRONG).
She broke into my explanation with "You see, I am very experienced, and I have taught a lot of kids, and do you know, I don't like labels, that label will follow them around all their lives, and - "
Fortunately at that moment another parent wanted her attention.

So I am caught between a rock and a hard place. I am incredibly tempted to send him elsewhere. Such prejudice about labelling would normally spell doom to any chance of a successful working relationship. But actually, I reasoned, I don't have to have a relationship with her at all. She's only one of three teachers, she isn't the manager - and the manager seems to me to be superb. Also - her concerns were about my other two sons - the ones who WON'T be going to her kindergarten. It's sort of irrelevant to my middle son, who doesn't have a diagnosis of ASD, but global developmental delay and verbal dyspraxia, and we are keen to keep it that way unless his steady progress towards neurotypical speech and behaviour falters. So really, her strictures about diagnosis and labelling are quite irrelevant here.
At the same time I felt it was impossible to do nothing. So I called up this afternoon and complained. I didn't quite "complain," I said that I had a concern, and that things were obviously very different in New Zealand but that in the UK I would not have expected a nursery teacher to feel sufficiently qualified to make that kind of sweeping judgement on my other children. (Sometimes it is quite useful to be foreign) Could I therefore ask that any future issues of this kind were raised with me via the manager?

Manager was clearly sympathetic and eager to reassure me that this would be fine, so I am taking a deep breath, taking into account the fact that my middle son clearly LOVES the kindy and can't wait to go again, and giving it one more chance.

Will this be the turning of the tide, or am I like the frog, slowly being boiled in water and reassuring myself that it's not too hot yet?

Monday, January 23, 2012

"Oh my goodness, is he still in nappies?"

Today's meeting was fairly dreadful.I had high hopes of this kindy. I still do, kind of. I guess my son will be starting there, if they give us a place soon. Not because I was impressed and relieved - I wasn't, not in the slightest - but because time is running out and I just don't have the energy to look anywhere else.

Saturday, January 21, 2012

Leaving Hobbit-Land

Before our move, I trawled the Internet for emigrant stories. One theme came up quite regularly amongst those with children - emigrants from the UK and North America tended to be shocked by how different New Zealand attitudes were to health and safety. Reading them, I decided that the North Americans and Brits were probably a bit namby-pamby, and that the New Zealand attitude of teaching children to manage risk safely was a wiser one. This, I now realise, was about as sensible of me as deciding to move to New Zealand in the hope of catching sight of some Hobbits.

Thursday, January 19, 2012

Yes, he's disabled. Do you still have that preschool place?

One of the disconcerting things about living in New Zealand after England is the constant chirpiness and friendliness. As I bought some strawberries from the roadside yesterday, the vendor noticed my sons in the car "Kids, eh? Aren't they the best? I love selling strawberries to kids." I nodded politely, walked back to the car and he yelled after me "I'm a grandparent and it's the BEST time of your life!" Well, er, OK, that's lovely to hear but actually I just wanted some soft fruit. At first I thought it was just me being a newbie - "Welcome to NEW ZEALAND!" the Mcdonalds staffworker yelled at me in my first week here, as if I'd just won the lottery. But gradually I realised no, this is really how Kiwis talk.

In England you'd be lucky to get eye-contact. Here people pump your hand, laugh uproariously at your jokes. "New Zealand is the FRIENDLIEST COUNTRY IN THE WEST," everybody keeps telling me, there was a survey which proved it and everything, and the population seems determined to live up to their reputation. "Are you buying fish today? Well done! Welcome to New Zealand!" This is all great when you are in a holiday mood, but now I am living here it is a bit overwhelming to my stand-offish English sensibilities. I kind of like to mooch in to the supermarket and get some milk without being quizzed about how I am finding things and what are my plans for the weekend. The entire country seems fixed in a permanent smile. It got to the stage where I started to wonder if New Zealand was all a vast Truman show, taking parts in a endless pageant for tourists and new arrivals of warmth and friendly bonhomie, before slipping off to a secret off-stage area where they all scowled and grumbled amongst themselves about the state of the country today. It is rather like being in a country entirely composed of children's television presenters. I keep expecting the petrol station attendant to offer to help me make a kitchen-roll and foil rocket for my Mummy before I pay for fuel.

But I have discovered there is one way to complicate the unabashed friendliness, and that is to mention to a preschool or kindergarten that your child has disabilities. The law says that they are not allowed to refuse, but human nature being what it is, the unscrupulous and lazy can send a very clear message to anxious parents. "Well, we could take him," said the manager of the preschool on our road doubtfully, "and I would say we have some, that is to say, very limited, experience of disabilities. I would say, our experience is very limited. But you would have to contact the Ministry of Education and apply for a teaching aide first." By the time she had stressed the fact that they had a waiting list, I was already mentally walking out of the door. Which of course is exactly what the manager wanted, but you can't unfortunately fight prejudice and ignorance with your son as the battering-ram. If this was the Truman Show, then the actors were on a rest break.

Giving up the idea of walking to preschool, I said a prayer to St Aelred, the patron saint of friendship. That was what I needed, proper friendship, someone who was prepared to show love and commitment, to make a real commitment to my son. I mass emailed every kindergarten in the area asking about places. Some emails were defunct but a couple replied, telling me that yes, they had places. One asked for my telephone number. I wrote back thanking them both and asking them what the procedure would be to apply for a teaching aide for my disabled son. Mysteriously, neither kindergarten rang or emailed back. Hmm. Maybe Aelred was off-duty too. If this was the Truman Show, the actors didn't want the job.

So I went to Barnados, who run a home-care program, bit like a childminding network. They were initially helpful, and asked me to come in for a meeting to meet the child. When I got there, there was effusive friendliness, plus the breathless news "Isn't it WONDERFUL? We have found someone who is willing to take your child. But she only has twelve hours a week spare." Since the son in question will be eligible for twenty hours a week funding, and I had indicated that I would travel by car to wherever a childminder could be found, and they had told me there were several in my area with places this didn't seem absolutely fantastic news. It sounded rather dire, actually, was there really only one? Didn't that mean that my son was going to be denied his full entitlement?

I asked the question that school had discreetly suggested I pose: were they eligible, as home-based childminders, for the Early Support service from the Ministry? (Bit like Harry Potter, all this talk of the Ministry. Maybe I should scrap this request for a teaching aide and instead demand a couple of Aurors and a personal owl). They looked at me blankly. If this was the Truman Show, they hadn't learnt their lines. Er. Could they just go and check that? One woman left the room and came back. Yes, they could. If I wanted them to, they could get someone to come and help them set targets for my son. If I thought that was a good idea. Well, yes, I have this eccentric idea that my developmentally delayed son might benefit from some input from an educational specialist with expertise in helping children with learning delay. Call me fussy. Oh, and can I have an owl too?

In this context, the friendliness felt hollow, unsubstantiated by actual care. I came home, depressed. But then Dumbledore showed up, with a letter inviting my boy to start at Hogwarts. Or at least, an email from another kindergarten that did have a space, starting next week. Glumly, I emailed them back. Great, but my son is disabled, he has GDD and verbal dyspraxia and he's still in nappies, he's going to be a Muggle amongst wizards, do you still want him? Of course we do, they shot back. Come in and talk to us about his needs. See you on Monday. Oh, and of course bring all the children, we will find something for them to do whilst we talk.

I haven't turned Barnados down yet, I will wait and see what the kindy are like when we meet. There was nothing wrong with Barnados' desire to do a good job, just I felt a hopeless lack of understanding of what these kids with additional needs are likely to need in order to progress. Bit like sending your kid to Hogwarts but not giving him a wand or a broomstick. I think of St Aelred, his injunctions to choose your friends carefully and show them real commitment. Well, I am choosing my son's friends with great care. We may be back in the Truman Show of course, this may be surface and indiscriminate friendliness only, but the enthusiasm and clarity of the email exchange suggests that they mean what they say, they really DO want my son and are eager to try and meet his needs. Not just to bounce around grinning, but to get help from people who know what they are doing, set proper targets to help him progress. So I do feel a little more optimistic that there may be a kindergarten out there where the friendly reputation of New Zealanders is matched by the qualities that Aelred tells us to look for in a friend: compassion, commitment. Plus of course, a real desire to show love, to be welcoming to all.

1,200 hits in 10 days

I am astonished. Thank you for reading. I am very touched. I kind of wonder who you all are (and whether I should link you all to something more worthwhile to read, like the New York Times or a telephone directory): but seriously: thank you. The blog has been read across the world, in England and South Africa (of course), but also further afield, like United Arab Emirates, France and Canada.
Your interest has been a huge comfort in a foreign land. I feel I have an invisible army of friends marching into battle with me, as I grapple with the niceties of school and carers' allowances and kindergarten: ah yes, kindergarten. That has been a complete nightmare. Will describe at some future time. But for tonight, I just want to say, thanks.
It feels very fitting that in a blog about the search for support I have been so hugely supported by the broader internet community. Sometimes all we need is a listening ear, a sense that someone out there is interested and cares. I have had that 1,200 times in a few days. Whoever you are, please know how uplifting it has been me to receive your interest. Sometimes I have felt like a mountaineer trying to scale Everest without the right equipment. Checking this blog and seeing the readership level rise has been a daily dose of oxygen, giving me the energy for the next spurt.
And don't tell the boys, when they are cool teenagers desperate to impress their girlfriends, that I wrote this blog about their youth!
Thank you.