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.
Tuesday, January 31, 2012
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.
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?
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.
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.
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.
Wednesday, January 18, 2012
Bugga Off Snake
I am in the newly mown garden with the boys. It is the first time we have been able to play outside, since I got hold of the strongest local brand of (organic) pesticide and temporarily freed the garden of mosquitoes and ants. It's called Bugga Off and is remarkably effectiev, plus it can only be bought from a specialist store which means you can have all sorts of fun ringing up to check they've got it in "I was wondering if you had any insect repellant" "What kind? Miss Moffet's revenge or Bugga Off?" "Sorry, did you just say Bugga Off?" Cheap fun.
I am lying on the sunlounger thinking that I really ought to put some suncream on (if you are resident in New Zealand take a deep breath and take your hands away from your keyboard, I KNOW, no ozone layer, I am constantly lectured about it, they even write it on your prescriptions here, if I had a penny for everyone who has launched at me with a glint in their eye saying "Now I must tell you about the sun here, you have to be REALLY CAREFUL" we would not be worrying about the cost of therapy) when I see a snake ooze past me, quite a small one by snaky standards I suppose, but at least forty cm. I sit up, draw up my feet, remember I am with the children and try not to scream. But New Zealand DOESN'T HAVE SNAKES, I think.
I am lying on the sunlounger thinking that I really ought to put some suncream on (if you are resident in New Zealand take a deep breath and take your hands away from your keyboard, I KNOW, no ozone layer, I am constantly lectured about it, they even write it on your prescriptions here, if I had a penny for everyone who has launched at me with a glint in their eye saying "Now I must tell you about the sun here, you have to be REALLY CAREFUL" we would not be worrying about the cost of therapy) when I see a snake ooze past me, quite a small one by snaky standards I suppose, but at least forty cm. I sit up, draw up my feet, remember I am with the children and try not to scream. But New Zealand DOESN'T HAVE SNAKES, I think.
Monday, January 16, 2012
Earl Grey and Nappies
I liked her as soon as she opened the door, the Head that is. We went into the staffroom where she offered to make me a cup of tea - I was wincing at the thought of the taste, and wondered briefly if I could refuse without being impolite. Then I spotted Earl Grey on the side, which I haven't tasted since we moved here. "Ooh, you have Earl Grey!" I said without thinking. "Oh yes, our staff very multicultural, we have Earl Grey and green tea, do you want some?" she asked. I braced myself for the Earl Grey to taste foul, but magically it didn't. So unexpected was that I blurted out "Oh my goodness, it tastes OK!" The Head smiled, as if I had clocked a local secret. "Yes, we know, it's something to do with the bergamum offsetting the chemicals, [local] water is foul, isn't it?" I almost hugged her but then my inner superego hissed "For God's sake stop being such an Expat. Do not trust this woman with your child just because she knows how to make a drinkable cup of tea."
Sunday, January 15, 2012
Biltong
is a traditional savoury Afrikaner snack. When I think of it, I think of stockings stuffed with the packets for childhood summer Christmasses, spent with grandparents in Fish Hoek, The Cape. It tastes like horse manure if you are not used to it. But to me it is heavenly. Sometimes visitors to our English house would bring us some, small smuggled packets, since in those days (of apartheid and sanctions, when it was not wise to advertise South African produce) it was pretty much unavailable in England. That has now changed, but it is still much cheaper here. I wouldn't buy biltong over the electricity bill, but hey, now I think about it, if it was a choice between biltong and sex...
(Dreamy pause. Writer hastily recovers her composure and decides it's probably a good thing that husband has shown no interest in this blog...)
(Dreamy pause. Writer hastily recovers her composure and decides it's probably a good thing that husband has shown no interest in this blog...)
Naked To School
She was great. The autism support charity woman. She was young - and Dutch, so we bonded over the grammatical simplicities of Afrikaans and the opportunity to drink rooibos tea - and full of energy and enthusiasm and ideas. Lists of people I should apply to, talk to, get therapy from. Irritatingly, many were private. Why IS it that the ideal therapy that you think you will need is never the one that you can afford at the time? I explained to her that we have stretched ourselves financially by buying this house. Never mind, she said cheerfully, there will be time, there are things you can do with this and that social benefit which you might one day be eligible for. We made lists of challenging behaviours for all three of the children and she came up with sensible suggestions as to how she and I might work on them together. She also offered to let me use their parents' lending library, although I doubt they have a tome entitled "How to Rescue Your Sons From the Emotional and Practical Chaos Caused By Emigration And Re-Establish Order Despite Feeling A Little Wobbly Yourself At Points."
In-Sink-Erator
We have never had one of these before. I am still working out how to use it. The first week, I declared it broken. My husband pointed out that it needed to be turned on to work. Ah, I said. Then I got over-confident and jammed it with apple cores. My husband discovered that egg shells didn't really agree with it either. But then we discovered that bicarbonate of soda was an effective remedy, and bought it in industrial quantities. Since then we have been tiptoeing round it rather like a new and exotic species of pet. "Do you think it will take banana skins?" "Not sure. It had a kiwi fruit yesterday." I am waiting for some In-Sink-Erator Protection Society to come along and tell us that we have been treating it shamefully, feeding it too many refined carbs and not enough vegetables.
Feel free to wince at the strained analogy, but there is something slightly similar in the post-diagnostic moment. I remember coming back to Yorkshire from London, having just been to see VERY PRESTIGIOUS AND PRICEY CONSULTANT. I looked at the boy sitting in our living room, and had a rush of totally irrational panic: I don't know how to raise a child with autism. I called up a friend who has three of them. She laughed. "It's all right. Nothing changes. You just carry on as before." She's right, of course, you do, and gradually you learn that there are remedies to get you both unstuck, people who have suggestions to make that might help. The bicarbonate of soda of learning delay. You cease to tiptoe around each other and just get on with the business of being a family again.
Rather like the post-diagnostic moment, at the present time all my senses are strained, heightened. A chance encounter in a shop can have me pondering on a possibly essential aspect of New Zealand culture. I can read too much into a road sign, into an overworked shop assistant's abruptness, into an unanswered email. I am constantly looking for clues that will enable to me to decode this new and strange society. It's a bit like learning to use the In-Sink-Erator. In time, I will gain my confidence back, just as I did post-diagnosis, and learn to live normally, carrying on as before.
In the meantime, there's always bicarbonate of soda, and blogging...
Feel free to wince at the strained analogy, but there is something slightly similar in the post-diagnostic moment. I remember coming back to Yorkshire from London, having just been to see VERY PRESTIGIOUS AND PRICEY CONSULTANT. I looked at the boy sitting in our living room, and had a rush of totally irrational panic: I don't know how to raise a child with autism. I called up a friend who has three of them. She laughed. "It's all right. Nothing changes. You just carry on as before." She's right, of course, you do, and gradually you learn that there are remedies to get you both unstuck, people who have suggestions to make that might help. The bicarbonate of soda of learning delay. You cease to tiptoe around each other and just get on with the business of being a family again.
Rather like the post-diagnostic moment, at the present time all my senses are strained, heightened. A chance encounter in a shop can have me pondering on a possibly essential aspect of New Zealand culture. I can read too much into a road sign, into an overworked shop assistant's abruptness, into an unanswered email. I am constantly looking for clues that will enable to me to decode this new and strange society. It's a bit like learning to use the In-Sink-Erator. In time, I will gain my confidence back, just as I did post-diagnosis, and learn to live normally, carrying on as before.
In the meantime, there's always bicarbonate of soda, and blogging...
A Tea-Party
We must have looked astonishingly English. Or just ridiculously pretentious. My husband's uncle and aunt were kind enough to come to tea for a child's birthday - they live locally and we don't know anyone else yet. We used our best china and poured the tea out of a teapot. We also sat inside, at the dining room table, on a swelteringly warm day, much more formally than any way I have ever been entertained in New Zealand.
It was all of course a result of the upheaval - we can't find our normal mugs yet, the only ones we have are those handpainted by children which I specifically asked the movers NOT to pack. I am starting to suspect that they misunderstood me and thought they were the ONLY ones I wanted. Friends warned me that in leaving England I might have flashes of emotion that felt very much like grief. Well they were right. I have bereavement issues about those nice white IKEA cups.
It was all of course a result of the upheaval - we can't find our normal mugs yet, the only ones we have are those handpainted by children which I specifically asked the movers NOT to pack. I am starting to suspect that they misunderstood me and thought they were the ONLY ones I wanted. Friends warned me that in leaving England I might have flashes of emotion that felt very much like grief. Well they were right. I have bereavement issues about those nice white IKEA cups.
Saturday, January 14, 2012
An unquiet land
When I was a young girl visiting South Africa, I remember my cousin and her husband taking me on a daytrip to Franschoek. With my English-reared eyes, I looked at the pine-covered hillsides and thought how beautiful they were. My Afrikaner cousin broke into my thought with an impatient comment "Ach! It's such a shame how these alien forests have spoilt the habitat like this! I would so love to see it free!"
Like South Africa, New Zealand has its native species and its aliens, the ones brought by English colonists and Australian ships. An uneasy relationship exists between the native and the invader, an ongoing battle for supremacy and preservation of which our lawnmower, currently still impounded by the Ministry for Agriculture Farms and Fisheries, is an accidental victim. (It's been there for weeks, its crime to arrive uncleaned. No news ekes out from its prison cell. I wonder how New Zealand law permits such indefinite internment, whether the machine will require therapy on its release. Perhaps I shall shortly be having solemn conversations about its behavioural issues, and joining support groups for Owners of Imprisoned and Traumatised Lawnmowers)
Like South Africa, New Zealand has its native species and its aliens, the ones brought by English colonists and Australian ships. An uneasy relationship exists between the native and the invader, an ongoing battle for supremacy and preservation of which our lawnmower, currently still impounded by the Ministry for Agriculture Farms and Fisheries, is an accidental victim. (It's been there for weeks, its crime to arrive uncleaned. No news ekes out from its prison cell. I wonder how New Zealand law permits such indefinite internment, whether the machine will require therapy on its release. Perhaps I shall shortly be having solemn conversations about its behavioural issues, and joining support groups for Owners of Imprisoned and Traumatised Lawnmowers)
Crying at the Post Shop
It took me days to work out how to buy a stamp. I eventually found out online, that you had to go to this thing called a Post Shop. I found the address, drove up and down the road for half an hour, spotting nothing, and in desperation went into the police station to ask for help (on the same road). The young lad behind the desk said I was his easiest customer all day, and that it wasn't on the road at all, but in the nearby shopping mall. So I went along there, and then spent a desperate half hour trying to work out the difference between prepaid envelopes and stamps proper, and wondering if I had filled out the address right.
Because the letter I was trying to send really mattered, it was to the local trust who have responsibility for assessing you for Carers Support. This is not money, but childcare hours. I am desperate for it, quite frankly, and it would make a big difference to our lives. But the practical mechanisms of getting the letter first signed, by a GP, and then sent in the post, almost defeated me (it is not a good idea to wander around with my three unless you know EXACTLY where you are going and how you are going to get there: a reason why the search for the post shop had to wait until the weekend, when my other half could mind two of the children at home).
When I dropped it into the post box I found myself in tears, just for a moment, and I couldn't tell if it was relief, frustration or nerves. Probably a mixture of all three.
Then there was the abysmal experience of trying to set up a meeting with Barnados to arrange childcare for my middle son (not because he has SN, but because all three and four year olds are entitled to this in NZ and Barnados is a provider). The woman kept insisting she HAD to meet him before assigning a childminder, even though I explained he didn't like strangers and wouldn't respond well to coming to her office, and I had two other children who I would also have to bring. Could I not leave the other children with someone else? she asked. No, I could not: we don't have the money for extra babysitting at the moment. She was obdurate. So my three will trash her office and my middle one will be terrified for no good reason (he'll probably think she is a doctor, who he particularly hates). I am dreading it.
Looking back on the week, these are my negatives. The positives? Well, so many lovely things have happened that I am really struggling to work out whether I am in a honeymoon period, seeing everything in NZ with rose-tinted specs, or whether this really IS an amazing country that is going to be very good for myself and my family.
In that sense, it's probably quite healthy that I got cross with Barnados and cried in the post shop. If we think we are in heaven, we're generally wrong. Real life is a mix. A week with frustrations included, but sprinkled with exciting glimpses of a good time ahead: that's probably a good, healthy, transitional place to be. I'm doing all right. Still wish I could have bought a stamp without crying, though.
Because the letter I was trying to send really mattered, it was to the local trust who have responsibility for assessing you for Carers Support. This is not money, but childcare hours. I am desperate for it, quite frankly, and it would make a big difference to our lives. But the practical mechanisms of getting the letter first signed, by a GP, and then sent in the post, almost defeated me (it is not a good idea to wander around with my three unless you know EXACTLY where you are going and how you are going to get there: a reason why the search for the post shop had to wait until the weekend, when my other half could mind two of the children at home).
When I dropped it into the post box I found myself in tears, just for a moment, and I couldn't tell if it was relief, frustration or nerves. Probably a mixture of all three.
Then there was the abysmal experience of trying to set up a meeting with Barnados to arrange childcare for my middle son (not because he has SN, but because all three and four year olds are entitled to this in NZ and Barnados is a provider). The woman kept insisting she HAD to meet him before assigning a childminder, even though I explained he didn't like strangers and wouldn't respond well to coming to her office, and I had two other children who I would also have to bring. Could I not leave the other children with someone else? she asked. No, I could not: we don't have the money for extra babysitting at the moment. She was obdurate. So my three will trash her office and my middle one will be terrified for no good reason (he'll probably think she is a doctor, who he particularly hates). I am dreading it.
Looking back on the week, these are my negatives. The positives? Well, so many lovely things have happened that I am really struggling to work out whether I am in a honeymoon period, seeing everything in NZ with rose-tinted specs, or whether this really IS an amazing country that is going to be very good for myself and my family.
In that sense, it's probably quite healthy that I got cross with Barnados and cried in the post shop. If we think we are in heaven, we're generally wrong. Real life is a mix. A week with frustrations included, but sprinkled with exciting glimpses of a good time ahead: that's probably a good, healthy, transitional place to be. I'm doing all right. Still wish I could have bought a stamp without crying, though.
Thursday, January 12, 2012
Danger, again
New Zealand might be good for our family in more ways than I expected.
For different diagnostic reasons, both my elder children have an incompletely developing sense of danger.
Because they're bright, I have to assume that one day this will kick in: that they will work out that say, traffic really ISN'T worth running into, that Mummy isn't just being silly about that hot stuff in the kettle, and that you really could hurt yourself quite badly if you threw yourself down the stairs. But at the moment, life is complex, because the sense of danger absence thing means that I have to be careful of an awful lot that other parents take for granted: trips to the park, trips to the supermarket, other people's houses etc, all have to be planned and executed with meticulous care. This is obviously exacerbated by having three little boys: two is easier, and one even easier still. So this week, when I got two opportunities to take just the older two out on their own, I grabbed it.
The first time we went to the wood (they call it "reserve") at the bottom of our road. There was a path, and a river, and bridges: so far so good, I made sure that hands were held near water and gave dire warnings about children getting lost forever in the dense New Zealand forest. We wandered happily along, making little arrows out of wood and holding branches "in case we see some baddies." Then the path stopped: and there was a river. With stones, nothing else, for us to cross.
I flinched. Was about to turn back, delicately: but it was too late, they had both seen it and were begging to cross the river. I looked. It wasn't too deep. "OK," I said, fully expecting a dunking, "I will carry A across and come back for B." My eyes widened as I saw B sitting quietly on the rock where I had placed him, exactly where I had told him to wait: and A walking carefully behind me, placing his feet exactly where I wanted him to on the slippery rocks.
I didn't dare to believe it. But the thought occurred to me that for the first time I had ever seen them, they had recognised a dangerous environment and were responding appropriately. A sense of danger, useful awareness of danger, sensible behaviour, might be achievable after all.
The next day I took them both to the park. Outside the fenced area is a tree, which unsurprisingly they wanted to scramble in. Child A wanted to climb high. "Help me," he said, "help me do it." I helped him, nervously, suggesting feet and handholds. He climbed until his feet were over my head and then asked to come down. He listened when I told him how to manage it and I swung him down to safety.
Outdoors, it seems, is good for my boys. It wasn't possible in England - too much bad weather, too many small children running in different directions, not enough help, the constant threat of collapse from my eldest's dodgy hip which would have stranded us all outdoors. We were outside as much as I could manage it, but generally in our safely-fenced back garden. Lots of paddling pool and cricket time, but not much adventure. But here, and with an improving hip, things are looking different. I am realising that here, with the outdoor lifestyle at hand, real trees to climb in the safety of a park and lowkey walks in a town reserve with real rivers to cross suddenly accessible to this mobility-restricted family, I may be able to help them develop a sense of safe behaviour, by gradually exposing them to small risks and helping them to manage them.
It won't take away what my husband and I affectionately term "the crazy" in them overnight, but it may be a developmental step on that path. I do hope so. It wasn't why we emigrated, but what a plus point that would be.
For different diagnostic reasons, both my elder children have an incompletely developing sense of danger.
Because they're bright, I have to assume that one day this will kick in: that they will work out that say, traffic really ISN'T worth running into, that Mummy isn't just being silly about that hot stuff in the kettle, and that you really could hurt yourself quite badly if you threw yourself down the stairs. But at the moment, life is complex, because the sense of danger absence thing means that I have to be careful of an awful lot that other parents take for granted: trips to the park, trips to the supermarket, other people's houses etc, all have to be planned and executed with meticulous care. This is obviously exacerbated by having three little boys: two is easier, and one even easier still. So this week, when I got two opportunities to take just the older two out on their own, I grabbed it.
The first time we went to the wood (they call it "reserve") at the bottom of our road. There was a path, and a river, and bridges: so far so good, I made sure that hands were held near water and gave dire warnings about children getting lost forever in the dense New Zealand forest. We wandered happily along, making little arrows out of wood and holding branches "in case we see some baddies." Then the path stopped: and there was a river. With stones, nothing else, for us to cross.
I flinched. Was about to turn back, delicately: but it was too late, they had both seen it and were begging to cross the river. I looked. It wasn't too deep. "OK," I said, fully expecting a dunking, "I will carry A across and come back for B." My eyes widened as I saw B sitting quietly on the rock where I had placed him, exactly where I had told him to wait: and A walking carefully behind me, placing his feet exactly where I wanted him to on the slippery rocks.
I didn't dare to believe it. But the thought occurred to me that for the first time I had ever seen them, they had recognised a dangerous environment and were responding appropriately. A sense of danger, useful awareness of danger, sensible behaviour, might be achievable after all.
The next day I took them both to the park. Outside the fenced area is a tree, which unsurprisingly they wanted to scramble in. Child A wanted to climb high. "Help me," he said, "help me do it." I helped him, nervously, suggesting feet and handholds. He climbed until his feet were over my head and then asked to come down. He listened when I told him how to manage it and I swung him down to safety.
Outdoors, it seems, is good for my boys. It wasn't possible in England - too much bad weather, too many small children running in different directions, not enough help, the constant threat of collapse from my eldest's dodgy hip which would have stranded us all outdoors. We were outside as much as I could manage it, but generally in our safely-fenced back garden. Lots of paddling pool and cricket time, but not much adventure. But here, and with an improving hip, things are looking different. I am realising that here, with the outdoor lifestyle at hand, real trees to climb in the safety of a park and lowkey walks in a town reserve with real rivers to cross suddenly accessible to this mobility-restricted family, I may be able to help them develop a sense of safe behaviour, by gradually exposing them to small risks and helping them to manage them.
It won't take away what my husband and I affectionately term "the crazy" in them overnight, but it may be a developmental step on that path. I do hope so. It wasn't why we emigrated, but what a plus point that would be.
Wednesday, January 11, 2012
A sigh of relief
There was a single sentence in my doctor's appointment today that struck through me like a chord in a beautiful piece of music: it rippled through my ears like a wave crashing on a shore, so that a small amount of the tension I have been feeling dissipated, the same way the force and power of the wave dissolves into bubbles of frothiness, slumping on the sand.
It wasn't the willingness to sign a referral form to the support services, asking for a home assessment: nor was it his cheery helpfulness when it came to the tricky question of the parking badge form, amazing relief though it was that he thought it would be managable. It wasn't the immediate agreement to send all my children for full paediatric assessment at the local hospital, so that stuff could be put in place properly. All these were good, and so was the suggestion that this could all be done without seeing the children personally, so avoiding the dreadful prospect of trying to manage my three for 45 min in his office. Very reassuring, too, was his view that it would be totally reasonable for us to put bolts on the outside of bathroom or bedroom doors, so long as it was to safeguard property and keep children from danger (e.g. through running taps), rather than to lock children in their bedrooms. After the horrendous experience of April this year, when our local Surestart threatened to report us to child protection services for precisely this kind of issue, this was all a breath of fresh air.
But it wasn't any of those things that really reassured me. Because here, you have small medical practices that mean you see the same GP again and again, so that it is possible to build up a rapport. Obviously that only works if the GP is on your wavelength. So I was on tenterhooks as we chatted, wondering if at some stage the mask would slip and I would end up with some ignorant ill-educated patronising nonsense, of the kind I have heard several times from doctors in the UK.
No, the thing that really sent my mind racing into exhausted, relieved surprise and happiness was the simplest, really. He was asking if I wanted my eldest's diagnosis on his records as autism or Aspergers. Autism, I said, adding that in the UK the name of the diagnosis could make a difference to the level of help you received. "Oh, it's not like that here," he said. "Aspergers will be fine." My face must have shown my uncertainty, because he added
"I know because my son has Aspergers, and he hasn't had any difficulty getting support."
I don't dare to believe it yet. Time will tell. But perhaps, just perhaps, I have got the right GP for my sons.
It wasn't the willingness to sign a referral form to the support services, asking for a home assessment: nor was it his cheery helpfulness when it came to the tricky question of the parking badge form, amazing relief though it was that he thought it would be managable. It wasn't the immediate agreement to send all my children for full paediatric assessment at the local hospital, so that stuff could be put in place properly. All these were good, and so was the suggestion that this could all be done without seeing the children personally, so avoiding the dreadful prospect of trying to manage my three for 45 min in his office. Very reassuring, too, was his view that it would be totally reasonable for us to put bolts on the outside of bathroom or bedroom doors, so long as it was to safeguard property and keep children from danger (e.g. through running taps), rather than to lock children in their bedrooms. After the horrendous experience of April this year, when our local Surestart threatened to report us to child protection services for precisely this kind of issue, this was all a breath of fresh air.
But it wasn't any of those things that really reassured me. Because here, you have small medical practices that mean you see the same GP again and again, so that it is possible to build up a rapport. Obviously that only works if the GP is on your wavelength. So I was on tenterhooks as we chatted, wondering if at some stage the mask would slip and I would end up with some ignorant ill-educated patronising nonsense, of the kind I have heard several times from doctors in the UK.
No, the thing that really sent my mind racing into exhausted, relieved surprise and happiness was the simplest, really. He was asking if I wanted my eldest's diagnosis on his records as autism or Aspergers. Autism, I said, adding that in the UK the name of the diagnosis could make a difference to the level of help you received. "Oh, it's not like that here," he said. "Aspergers will be fine." My face must have shown my uncertainty, because he added
"I know because my son has Aspergers, and he hasn't had any difficulty getting support."
I don't dare to believe it yet. Time will tell. But perhaps, just perhaps, I have got the right GP for my sons.
I must find my passport...
...because I have to see the doctor today.
I've delayed doing this until the very last day or two before my husband is paid, because it's not free here. I have to go on my own behalf, but also to talk through the boys' referrals: the receptionist suggested on the phone that they would each need to attend a fifteen-minute appointment in their own right, but then changed her tune when she saw them freewheeling around the waiting room and suggested maybe I could come in on my own first, talk to the doctor and see what we can suggest together without needing to see them in person?
I hope this works. It's worth a shot, anyway. Must start looking for my passport, because I need it to complete registration. That's the thing about being a new immigrant, you do things SLOWER and more LABORIOUSLY than everyone else, partly because you don't understand the system and have to have everything explained to you (often several times, in different ways) and partly because you have different needs, need extra paperwork, more time to process you. People are - fortunately - very patient. But it's still galling, a bit like swimming through air - you are making all the right motions, but you are not getting the result you expect.
I realise that it is a temporary experience of having additional needs, of needing extra support to communicate, to do even the most basic daily tasks. Not bad for me, really. When I reflect on disability issues in the future, this experience of having all my contextual skills stripped away, and having to relearn them, may be quite useful.
For now, though, it's just frustrating. Or maybe that's the point I need to remember? How frustrating it is, not to be able to do anything quickly and efficiently, to need help at every point in the day?
I've delayed doing this until the very last day or two before my husband is paid, because it's not free here. I have to go on my own behalf, but also to talk through the boys' referrals: the receptionist suggested on the phone that they would each need to attend a fifteen-minute appointment in their own right, but then changed her tune when she saw them freewheeling around the waiting room and suggested maybe I could come in on my own first, talk to the doctor and see what we can suggest together without needing to see them in person?
I hope this works. It's worth a shot, anyway. Must start looking for my passport, because I need it to complete registration. That's the thing about being a new immigrant, you do things SLOWER and more LABORIOUSLY than everyone else, partly because you don't understand the system and have to have everything explained to you (often several times, in different ways) and partly because you have different needs, need extra paperwork, more time to process you. People are - fortunately - very patient. But it's still galling, a bit like swimming through air - you are making all the right motions, but you are not getting the result you expect.
I realise that it is a temporary experience of having additional needs, of needing extra support to communicate, to do even the most basic daily tasks. Not bad for me, really. When I reflect on disability issues in the future, this experience of having all my contextual skills stripped away, and having to relearn them, may be quite useful.
For now, though, it's just frustrating. Or maybe that's the point I need to remember? How frustrating it is, not to be able to do anything quickly and efficiently, to need help at every point in the day?
Danger
I was on my way out to pick up some antkiller. The bloke who was cutting the lawn at the house at the top of our drive had an English accent, we got talking. He was not the owner, but a professional lawncutter. It so happens that our lawnmower is still in MAFF quarantine for cleaning. So I asked him if he would come and cut our grass - it is currently such a wilderness that the boys can't play outside.
When I came back a couple of hours later, he had already been down to check out the garden. There he'd spotted a couple of hazards, that neither Mr C nor I had noticed: there were some bushes growing that would give my boys hives and rashes, if they were to brush up against them. He arranged with the handyman who is fitting a fence that the bushes would be cut down immediately - it was done before I returned. I was hugely grateful, and once again aware of how little I, we, know about our surroundings. The foreignness of it all hit me again. I know nothing about the foliage, nothing about the risks of the flora around us. If the boys had swelled up in sudden hives, would we have even known what had caused it?
We are so reliant on the kindness and insight of strangers right now, to protect us and our sons. I look at the whiteboard: there are now five meetings in the next few days. The headteacher. The local rep of a children's organisation offering childcare who may be able to arrange some funded hours for my middle son. The autism support woman, who does behavioural strategies. The developmental therapist. And a preliminary meeting with our new GP, to work out where the boys need to be referred. I hope they are all as switched-on and diligent and determined to safeguard us as the guy who mows the lawns.
When I came back a couple of hours later, he had already been down to check out the garden. There he'd spotted a couple of hazards, that neither Mr C nor I had noticed: there were some bushes growing that would give my boys hives and rashes, if they were to brush up against them. He arranged with the handyman who is fitting a fence that the bushes would be cut down immediately - it was done before I returned. I was hugely grateful, and once again aware of how little I, we, know about our surroundings. The foreignness of it all hit me again. I know nothing about the foliage, nothing about the risks of the flora around us. If the boys had swelled up in sudden hives, would we have even known what had caused it?
We are so reliant on the kindness and insight of strangers right now, to protect us and our sons. I look at the whiteboard: there are now five meetings in the next few days. The headteacher. The local rep of a children's organisation offering childcare who may be able to arrange some funded hours for my middle son. The autism support woman, who does behavioural strategies. The developmental therapist. And a preliminary meeting with our new GP, to work out where the boys need to be referred. I hope they are all as switched-on and diligent and determined to safeguard us as the guy who mows the lawns.
Tuesday, January 10, 2012
Paying for Luxuries: Developmental Therapy, and Proper Cups of Tea
It's been quite a battle getting a decent cup of tea. First, there was the discovery that New Zealand brands do not - to an English palate - just taste right, no matter how expensive or well-packaged they are. Then, when we moved into this house, the problem arose that the local fluoridation has a strange effect: although it doesn't taste in cold water, boiling the water means that a strong chemical tang enters the flavour, hitting the palate at exactly the same moment as the aroma of tea and drowning it out almost completely. No matter what brand we tried, the same thing happened.
I realised that I am weak-willed, I thought I was up to the inconveniences and stresses of transition, but when it came down to it I simply could not face the future without the prospect of nice cups of tea. So my tealeaf and tannin habit is costing us dearly: we are buying huge vats of bottled water in order to fill the kettle. I suppose it is better than demanding annual flights to England as the price of emigration, but still it feels rather...well...excessive. Having taken pride in my household frugality, I am embarrassed by myself. Perhaps my tastes will change, but for the moment I need it, the weekly 10 litres of bottled water an unavoidable cost of settling in.
We could, I am sure, cope without behavioural therapy too. Our boys' issues are minor. We fully expect them to lead adult independent lives. I'd be astonished if any of them didn't end up at university. This will happen not because of the effort we put in, or the example we set, but the entirely random genetic lottery result that has produced three intelligent kids. So is it a luxury, therapy at this time? Since they will grow up to be highly functioning adults, should I be wasting our family resources on this expense, when we could spend it on cheese and potatoes?
I guess that the way I see it is simple, really. Like tea, therapy will make us happy. We need interventions not to change the children's future, but to change the quality of their childhood now. We need to be able to teach the youngest not to be so frustrated and rigid, to be able to enjoy a park without worrying about the messy leaves on the ground. We need to remind the oldest and the middle that there are boundaries, and that Mummy and Daddy love them, and that this is a big move and many things have changed but we have not, and we still need them to listen, and respect, and obey: and not do crazy things. And, for all these reasons, we need interventions, the state and the private kind. Both cost, the private kind in money and the state kind in time and energy. Help is not free, even if we don't sign a cheque at the end of every session. There is the opportunity cost, the time that is spent listening to experts and following their suggestions, when we could be doing other things. There is the headspace aspect, the parental loss of control and self-sufficiency, the trying to do things via another person's way of seeing things, which slows everything down and can bring great benefits, but also can lead one to doubt one's instincts. And there is the grinding recognition that therapy brings home - that the children are not quite 100 per cent where they should be developmentally, that life is not as straightforward as one might like. Therapy brings help, but it is a depressing path to have to walk, when you see your colleagues in the mothering world spending their time on softplay and coffee with friends.
I have worried at times that it is my inadequacy as a parent that makes all this necessary, that somehow my children wouldn't HAVE these issues if I wasn't raising them wrong. I have similarly worried, when feeling overburdened or exhausted, that actually the therapy and support has been doing the opposite of what it is meant to: draining me dry. I am reminded of a dream I once read of, a dream that came to a woman who was struggling with whether to leave the Mormon church. She was in hospital, and was surrounded by wires that she believed were keeping her alive: to her horror she realised that they were doing the opposite, they were draining her body of nourishment and strength. That was for her a metaphor that summed up her experience of Mormon religious authority - that which was meant to give her strength and nurture her, was in fact an oppressive system. In dark moments, I have sometimes wondered if the support systems in the UK that were meant to help my family were in fact in some ways a depressing and life-sapping force, albeit unintentionally so. Strangely, I too had a series of dreams about being in hospital, and wires feeding into my body: I struggled to leave, but in my case I realised that the wires were there to help me, they were bringing me blood, vitality I guess. I was weak, and they were bringing me strength.
It's a fine balance, whether to take help or not. But I think the advantages outweigh the disadvantages. Anyway, I haven't much choice, already my diary is filling up. The head of the school down the road wants to meet first thing on Tuesday, to discuss the boys and how she can meet their needs: later that day the ABA therapist is arriving, to give Number Three his first morning of intervention: on Monday a representative from the local autism charity is coming to meet us and see what stuff she can do/teach/recommend. Perhaps it is just that I am weak-willed, that I think I need this help. Perhaps a better mother would know what to do instinctively, rather than needing to search for outside support. But, rather like the paying good money for bottled water to have a proper cup of tea, I DO need it, or I feel that I, we, will be unhappy without it. That's the best I can do for now. In time, perhaps I won't need bottled water. And I'll learn to manage this parenting lark on my own. In the meantime, thank goodness for the internet, which has enabled me to make local contacts quickly, and get the boys and I some support until we are managing better, and properly settled in. Because otherwise, I risk my parenting feeling like those insipid, depressing, tasteless sips of tea that so horrified me in the first few days: all the ingredients are there but somehow it is lacking, a certain je ne sais quoi. Parenting, ordinarily, is something that I love. I don't want to feel like the equivalent of a tasteless teabag. I want to have fun, relish the time I spend with my boys. The same way I really, really enjoy the strong, tangy taste of a good proper cup of tea.
John's Gospel's Jesus famously compared himself to a vine. "I am the vine, and you are the branches." That is an ideal text for me to meditate on right now, I think. Branches need water, nourishment. I, my family, are such a branch right now. I had better relax, and let the support take shape. Nourishment may flow to us that way. It's worth a try, at least. The last thing I must do is try to be self-sufficient, in this new country, away from all that I know. Branches quickly wither if they are separated from their roots. They don't survive for long on their own.
I realised that I am weak-willed, I thought I was up to the inconveniences and stresses of transition, but when it came down to it I simply could not face the future without the prospect of nice cups of tea. So my tealeaf and tannin habit is costing us dearly: we are buying huge vats of bottled water in order to fill the kettle. I suppose it is better than demanding annual flights to England as the price of emigration, but still it feels rather...well...excessive. Having taken pride in my household frugality, I am embarrassed by myself. Perhaps my tastes will change, but for the moment I need it, the weekly 10 litres of bottled water an unavoidable cost of settling in.
We could, I am sure, cope without behavioural therapy too. Our boys' issues are minor. We fully expect them to lead adult independent lives. I'd be astonished if any of them didn't end up at university. This will happen not because of the effort we put in, or the example we set, but the entirely random genetic lottery result that has produced three intelligent kids. So is it a luxury, therapy at this time? Since they will grow up to be highly functioning adults, should I be wasting our family resources on this expense, when we could spend it on cheese and potatoes?
I guess that the way I see it is simple, really. Like tea, therapy will make us happy. We need interventions not to change the children's future, but to change the quality of their childhood now. We need to be able to teach the youngest not to be so frustrated and rigid, to be able to enjoy a park without worrying about the messy leaves on the ground. We need to remind the oldest and the middle that there are boundaries, and that Mummy and Daddy love them, and that this is a big move and many things have changed but we have not, and we still need them to listen, and respect, and obey: and not do crazy things. And, for all these reasons, we need interventions, the state and the private kind. Both cost, the private kind in money and the state kind in time and energy. Help is not free, even if we don't sign a cheque at the end of every session. There is the opportunity cost, the time that is spent listening to experts and following their suggestions, when we could be doing other things. There is the headspace aspect, the parental loss of control and self-sufficiency, the trying to do things via another person's way of seeing things, which slows everything down and can bring great benefits, but also can lead one to doubt one's instincts. And there is the grinding recognition that therapy brings home - that the children are not quite 100 per cent where they should be developmentally, that life is not as straightforward as one might like. Therapy brings help, but it is a depressing path to have to walk, when you see your colleagues in the mothering world spending their time on softplay and coffee with friends.
I have worried at times that it is my inadequacy as a parent that makes all this necessary, that somehow my children wouldn't HAVE these issues if I wasn't raising them wrong. I have similarly worried, when feeling overburdened or exhausted, that actually the therapy and support has been doing the opposite of what it is meant to: draining me dry. I am reminded of a dream I once read of, a dream that came to a woman who was struggling with whether to leave the Mormon church. She was in hospital, and was surrounded by wires that she believed were keeping her alive: to her horror she realised that they were doing the opposite, they were draining her body of nourishment and strength. That was for her a metaphor that summed up her experience of Mormon religious authority - that which was meant to give her strength and nurture her, was in fact an oppressive system. In dark moments, I have sometimes wondered if the support systems in the UK that were meant to help my family were in fact in some ways a depressing and life-sapping force, albeit unintentionally so. Strangely, I too had a series of dreams about being in hospital, and wires feeding into my body: I struggled to leave, but in my case I realised that the wires were there to help me, they were bringing me blood, vitality I guess. I was weak, and they were bringing me strength.
It's a fine balance, whether to take help or not. But I think the advantages outweigh the disadvantages. Anyway, I haven't much choice, already my diary is filling up. The head of the school down the road wants to meet first thing on Tuesday, to discuss the boys and how she can meet their needs: later that day the ABA therapist is arriving, to give Number Three his first morning of intervention: on Monday a representative from the local autism charity is coming to meet us and see what stuff she can do/teach/recommend. Perhaps it is just that I am weak-willed, that I think I need this help. Perhaps a better mother would know what to do instinctively, rather than needing to search for outside support. But, rather like the paying good money for bottled water to have a proper cup of tea, I DO need it, or I feel that I, we, will be unhappy without it. That's the best I can do for now. In time, perhaps I won't need bottled water. And I'll learn to manage this parenting lark on my own. In the meantime, thank goodness for the internet, which has enabled me to make local contacts quickly, and get the boys and I some support until we are managing better, and properly settled in. Because otherwise, I risk my parenting feeling like those insipid, depressing, tasteless sips of tea that so horrified me in the first few days: all the ingredients are there but somehow it is lacking, a certain je ne sais quoi. Parenting, ordinarily, is something that I love. I don't want to feel like the equivalent of a tasteless teabag. I want to have fun, relish the time I spend with my boys. The same way I really, really enjoy the strong, tangy taste of a good proper cup of tea.
John's Gospel's Jesus famously compared himself to a vine. "I am the vine, and you are the branches." That is an ideal text for me to meditate on right now, I think. Branches need water, nourishment. I, my family, are such a branch right now. I had better relax, and let the support take shape. Nourishment may flow to us that way. It's worth a try, at least. The last thing I must do is try to be self-sufficient, in this new country, away from all that I know. Branches quickly wither if they are separated from their roots. They don't survive for long on their own.
Monday, January 9, 2012
Discrimination
We're at the park. One of the many dotted around this region. I have drilled my boys that they are TO START LISTENING TO ME and STOP RUNNING OFF AND SCREAMING, and for now it seems to be having an effect. They are wearing their all-in-one waterproofs, which have been useful in the Lake District and Yorkshire and are now doing service here, in what New Zealanders keep apologising to me about, the wettest summer for ages. Well, it must be dreadful if you are a Kiwi and expecting weeks and weeks of hot sunshine on end at this time of year, but if you are from Wakefield, then frankly it is all rather normal and even better weather than you would expect given that when the rain falls it is still warm enough to be outside. So my boys are splashing in the fountains, thinking it is brilliant fun (and probably wondering why on earth the local children aren't outside enjoying it with them on such a nice day).
Since we're alone in the park, I can relax a bit about safety issues - no traffic, no pushing other children - and have fun. My youngest is determined to go down the slide, despite the fact that he has already a bloody nose and bumped forehead from the last attempt. I sit him on my lap and go down - far too fast - and bump my bottom, hard, on the gravelly surface at the bottom. As I wince, I hear an Irish accent, and see that we are no longer by ourselves: a grandmother has brought her children to mess around in the puddles too. We compliment each other on our Northern Hemisphere-bred hardiness, and she asks me how long I have been in the country. She came in 1973. She tells me how different the country was then, how much prejudice they faced, how her son couldn't bear being bullied at school as the only one who could read (he was fourteen: it was a small rural area: the other children were Maori) and how he ran away for a while.
Her story makes me think a little about the racial silences and glaring imbalances of this community. I realise that despite the mixed community I meet at softplay etc, the Maori guy mowing the lawn ahead is only the third Maori I have seen in a working context in the whole month since arriving: the other two were the men who unpacked our furniture. Since I've been in and out of dozens of different offices/shops etc since arrival, it is odd. I am a little disquieted by the evidence that the Maori community may well be found in more menial jobs.
The experience of the last couple of years, of learning to grapple with the idiom and realities of disability in childhood, has made me hyper-sensitive to any other kind of segregation or discrimination. It pierces me, now, in a slightly different way from hitherto. I am wary of any suggestion that my kids' mild delays give me some sort of insight or understanding of other social dilemmas, problems, exclusions: that would be to suggest a false homogeneity: but they have perhaps given me a new wanting-to-understand, a feeling of urgency about them. I understand perhaps better than I did how all-encompassing a social disadvantage can become, how it can impact every single aspect of your life, so that you are circumscribed (and thus, pinned in) deeply by it. That is what stereotypes and under-funding do, they pin people into a smaller sense of themselves, they reduce opportunity so that life becomes less, so that the stereotype becomes painfully truer, as its inhabitants lose the opportunity to do more, to become more, to be more than the sum of their disadvantages, to be truly themselves.
Sitting on my bookshelf is an unopened Maori language book, borrowed from the local library. I remember how years ago, when we talked about moving to this area, I suggested that we might send our kids to a Maori language nest preschool for a year or so, in order to give them a start in the language. With the boys' additional needs to think of, that dream now looks impossible: disability, delays, syndromes, these will already make integration difficult enough. We have enough to grapple with making sure that they can cope and flourish in the local Paheka (non-Maori) culture, never mind adding in a significant language and cultural barrier. I am sorry for the lost dream. Sorry too, that Maori and Pakeha culture remain so - so - what is the word I am looking for? Disconnected. I could live here for fifty years and never grow closer to Maori culture than I am now. This disturbs me, because I know the social consequences of this kind of isolation. My father was a Protestant in South Ireland. My mother was born an English-speaking white in South Africa. Her father was a German Jew. I know a little about racial segregation and distrust from family experience. I do not want to pass these fears and hang-ups onto my children.
Yesterday I rang a local Trust, the provider of assessments for these fabled Carers' Hours. I ran through the boys' difficulties briefly. "Someone suggested you might be of help." "I should say you need us!" said the woman at the other end of the phone, and sent out an application form that arrived this morning. I shall have to grapple with the foreign language that is Carers' Needs, as assessed by local support services, quickly. No time to learn Maori as well?
Will it prove so tricky to integrate my boys into the local culture that I give up the dream of making sure they encounter BOTH New Zealands, long-term?
I hope not. But who knows?
Since we're alone in the park, I can relax a bit about safety issues - no traffic, no pushing other children - and have fun. My youngest is determined to go down the slide, despite the fact that he has already a bloody nose and bumped forehead from the last attempt. I sit him on my lap and go down - far too fast - and bump my bottom, hard, on the gravelly surface at the bottom. As I wince, I hear an Irish accent, and see that we are no longer by ourselves: a grandmother has brought her children to mess around in the puddles too. We compliment each other on our Northern Hemisphere-bred hardiness, and she asks me how long I have been in the country. She came in 1973. She tells me how different the country was then, how much prejudice they faced, how her son couldn't bear being bullied at school as the only one who could read (he was fourteen: it was a small rural area: the other children were Maori) and how he ran away for a while.
Her story makes me think a little about the racial silences and glaring imbalances of this community. I realise that despite the mixed community I meet at softplay etc, the Maori guy mowing the lawn ahead is only the third Maori I have seen in a working context in the whole month since arriving: the other two were the men who unpacked our furniture. Since I've been in and out of dozens of different offices/shops etc since arrival, it is odd. I am a little disquieted by the evidence that the Maori community may well be found in more menial jobs.
The experience of the last couple of years, of learning to grapple with the idiom and realities of disability in childhood, has made me hyper-sensitive to any other kind of segregation or discrimination. It pierces me, now, in a slightly different way from hitherto. I am wary of any suggestion that my kids' mild delays give me some sort of insight or understanding of other social dilemmas, problems, exclusions: that would be to suggest a false homogeneity: but they have perhaps given me a new wanting-to-understand, a feeling of urgency about them. I understand perhaps better than I did how all-encompassing a social disadvantage can become, how it can impact every single aspect of your life, so that you are circumscribed (and thus, pinned in) deeply by it. That is what stereotypes and under-funding do, they pin people into a smaller sense of themselves, they reduce opportunity so that life becomes less, so that the stereotype becomes painfully truer, as its inhabitants lose the opportunity to do more, to become more, to be more than the sum of their disadvantages, to be truly themselves.
Sitting on my bookshelf is an unopened Maori language book, borrowed from the local library. I remember how years ago, when we talked about moving to this area, I suggested that we might send our kids to a Maori language nest preschool for a year or so, in order to give them a start in the language. With the boys' additional needs to think of, that dream now looks impossible: disability, delays, syndromes, these will already make integration difficult enough. We have enough to grapple with making sure that they can cope and flourish in the local Paheka (non-Maori) culture, never mind adding in a significant language and cultural barrier. I am sorry for the lost dream. Sorry too, that Maori and Pakeha culture remain so - so - what is the word I am looking for? Disconnected. I could live here for fifty years and never grow closer to Maori culture than I am now. This disturbs me, because I know the social consequences of this kind of isolation. My father was a Protestant in South Ireland. My mother was born an English-speaking white in South Africa. Her father was a German Jew. I know a little about racial segregation and distrust from family experience. I do not want to pass these fears and hang-ups onto my children.
Yesterday I rang a local Trust, the provider of assessments for these fabled Carers' Hours. I ran through the boys' difficulties briefly. "Someone suggested you might be of help." "I should say you need us!" said the woman at the other end of the phone, and sent out an application form that arrived this morning. I shall have to grapple with the foreign language that is Carers' Needs, as assessed by local support services, quickly. No time to learn Maori as well?
Will it prove so tricky to integrate my boys into the local culture that I give up the dream of making sure they encounter BOTH New Zealands, long-term?
I hope not. But who knows?
A New Headmistress
Any experienced SN parent will tell you that the quality of the school you find is the single most important factor in determining your young child's general happiness, and that you need to look beyond the brochure or results (or, here, the socio-economic "decile" factor). It's not class or achievement, it's attitude and inclusiveness that matters. So clearly I should be interviewing dozens of headteachers, sitting in on classes, comparing a list of difficult questions, chatting to other parents, before making my move. But I can't. It's impossible to research schools at all, what with it being the middle of the summer holidays. I could wait until term starts and then do it, but the idea of an extra week or so before my eldest starts school makes me quail slightly. So it's a case of going with what's closest and hoping it works out. There's a primary school in our road, and our babysitter (whose son has Aspergers) reckons it's good for children with additional needs. That'll do for now, then. So I "flicked" (this is what you do here, no one talks about email, it's like being in a permanent virtual game of Tiddlywinks) an email to her to say that my son (6) would be starting in February, and could we register him please? Oh, and by the way he had high-functioning autism and would she like the opportunity to discuss his needs?
She flicked me back straightaway, as fast as a horse's tail reacting to a new and unknown type of fly. Yes, she would like to meet up to learn about my son, and would 11 am on 17th suit? I wrote back explaining that I was terribly sorry but no, actually it wouldn't, because I was meeting a therapist for my youngest son at that time, who also had autism, and oh, by the way, I should probably mention my second, who would be starting at her school in six months and has a diagnosis of global developmental delay and verbal dyspraxia?
Headmistress is probably picking herself off the floor and wondering what on earth she did wrong in a former life to get THIS family moving into her school zone.
When I was a teenager I read a book about the Kindertransports, when thousands of desperate Jewish parents packed their children on a train and sent them out of Germany to a new life in the UK: an international precursor to evacuation. I have often wondered how that must have been for the parents, and how it must have felt to trust their children's future to the kindness of strangers, foreigners even. I don't for a minute want to compare our situations, clearly that would be ludicrous. But there is a sense of acute vulnerability that I feel now, as I start making contacts with significant professionals, circling schools and doctors' receptionists warily, wondering "Is your institution going to be really helpful to our family, or (another) frigging nightmare?" The fear of entrusting your vulnerable child to school is magnified a hundred times by being in a new country. In the UK I knew my legal rights backwards, could tell instantly when a SENCO or Head or lazy medical specialist tried to fob me off. Here I know nothing. I can only hope that I will meet the right kind of professional, with integrity and a desire to help my kids properly, rather than simply wanting to arrange the bare minimum of provision and have an easy life.
I remember the Israelites wandering in the desert, again. I always think that when they got to Canaan, setting up a society from scratch can't have been that easy. You can imagine the elders of the tribes scratching their heads when they hit a glitch, the crops failed or disease struck the community, and saying to each other "You don't suppose we took a wrong turning? What if this was still desert, and we were mistaken in thinking we'd got to the Promised Land?"
Exile or Home-Coming? Desert or Promised Land? Emigration gives you a flavour of both. For a while after you arrive, your life remains desert-like and transient. You are travelling without resources, hoping that you have arrived in a land that will bloom for you in time.
I study the Head's email carefully for hints that she doesn't want my son, and wait for her reaction to the news of the other boys. Her response will define much of how my kids experience her school. I'd like flowers to bloom in this desert soon.
She flicked me back straightaway, as fast as a horse's tail reacting to a new and unknown type of fly. Yes, she would like to meet up to learn about my son, and would 11 am on 17th suit? I wrote back explaining that I was terribly sorry but no, actually it wouldn't, because I was meeting a therapist for my youngest son at that time, who also had autism, and oh, by the way, I should probably mention my second, who would be starting at her school in six months and has a diagnosis of global developmental delay and verbal dyspraxia?
Headmistress is probably picking herself off the floor and wondering what on earth she did wrong in a former life to get THIS family moving into her school zone.
When I was a teenager I read a book about the Kindertransports, when thousands of desperate Jewish parents packed their children on a train and sent them out of Germany to a new life in the UK: an international precursor to evacuation. I have often wondered how that must have been for the parents, and how it must have felt to trust their children's future to the kindness of strangers, foreigners even. I don't for a minute want to compare our situations, clearly that would be ludicrous. But there is a sense of acute vulnerability that I feel now, as I start making contacts with significant professionals, circling schools and doctors' receptionists warily, wondering "Is your institution going to be really helpful to our family, or (another) frigging nightmare?" The fear of entrusting your vulnerable child to school is magnified a hundred times by being in a new country. In the UK I knew my legal rights backwards, could tell instantly when a SENCO or Head or lazy medical specialist tried to fob me off. Here I know nothing. I can only hope that I will meet the right kind of professional, with integrity and a desire to help my kids properly, rather than simply wanting to arrange the bare minimum of provision and have an easy life.
I remember the Israelites wandering in the desert, again. I always think that when they got to Canaan, setting up a society from scratch can't have been that easy. You can imagine the elders of the tribes scratching their heads when they hit a glitch, the crops failed or disease struck the community, and saying to each other "You don't suppose we took a wrong turning? What if this was still desert, and we were mistaken in thinking we'd got to the Promised Land?"
Exile or Home-Coming? Desert or Promised Land? Emigration gives you a flavour of both. For a while after you arrive, your life remains desert-like and transient. You are travelling without resources, hoping that you have arrived in a land that will bloom for you in time.
I study the Head's email carefully for hints that she doesn't want my son, and wait for her reaction to the news of the other boys. Her response will define much of how my kids experience her school. I'd like flowers to bloom in this desert soon.
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.
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.
Baggage
So we have arrived in New Zealand. We have bought a house. We have fitted safety locks and built a fence to stop the children running down the slope, plus gates to stop them leaping down the balcony steps - "deck" they call it here - to oblivion. Plus a lock on the sliding door to stop them slipping out onto the balcony, and hence to oblivion.
We are shattered but happy. The move feels right, the climate feels great so far (admittedly we are in the middle of the wettest summer New Zealand has known for many years so that all the locals are complaining, but by our Yorkshire-honed standards it seems pretty temperate and nice), the kids like their new lifestyle...
Ah yes, the kids. There is one thing we seem to have acquired on the way from England - dreadful, absolutely dreadful, behaviour from all three of them at points. We were kind of expecting it, you don't take three children with additional needs out of everything they know and expect, throw them on a plane for forty hours, coop them up in a two-bedroom flat for three weeks, then let them loose in a new house with nothing to do and no school and expect there to be no repercussions.
However I was hoping not quite to be in the position I was in today, when I emailed the local childhood autism charity and pleaded for help, because I really didn't feel I was managing the children's behaviour.
Because the thing is, I brought lots of experience with me. We had a brilliant Learning Disability nurse who taught me some tricks of the trade, visual timetables and scales of emotions and now-and-then boards and...and...and plenty other stuff. We had an awesome speech therapist, specialist in autism, who sat in our house and dripped expertise, drawing us up social stories and lending us books about CBT....
I should be fine. I have all this baggage. But none of it quite fits what I need right now. Because of course my boys aren't behaving in the ways that I am used to managing, this is a new situation and they have responded by developing new strategies to try my patience: I shall have to find new strategies to respond to them. Now that I look at my skills, I feel somewhat like the woman described in Susan Coolidge's novel of nineteenth-century emigration from east to the American West, who insisted on bringing thread and needle, because there would be nothing as civilised as that locally. When she arrives, she finds that what she has brought is either excessive or useless, because there is plenty of stuff locally available and she needs to find what is to hand. Clearly, from the conversations I have had today on phone and email, there is lots of local expertise, lots of support available: I need to stop rummaging in my baggage for skills that aren't working and go hunting for the right local expert, the right strategy, the right network here. To enable the boys and I to have fun here, in this beautiful land. Because too much baggage weighs you down: it will be no fun if I spend all my time struggling under the strain of not feeling able to handle them.
I feel like a newborn child in New Zealand. No awareness of the local culture, no grasp of the practicalities like how to buy a stamp. I can't even find a GP willing to register us. And I have to find superb disability support, IMMEDIATELY, for my bright, high-functioning and challenging kids if we are not all to spend the rest of the summer screaming at each other.
It's a tough call. I'll let you know how it goes.
We are shattered but happy. The move feels right, the climate feels great so far (admittedly we are in the middle of the wettest summer New Zealand has known for many years so that all the locals are complaining, but by our Yorkshire-honed standards it seems pretty temperate and nice), the kids like their new lifestyle...
Ah yes, the kids. There is one thing we seem to have acquired on the way from England - dreadful, absolutely dreadful, behaviour from all three of them at points. We were kind of expecting it, you don't take three children with additional needs out of everything they know and expect, throw them on a plane for forty hours, coop them up in a two-bedroom flat for three weeks, then let them loose in a new house with nothing to do and no school and expect there to be no repercussions.
However I was hoping not quite to be in the position I was in today, when I emailed the local childhood autism charity and pleaded for help, because I really didn't feel I was managing the children's behaviour.
Because the thing is, I brought lots of experience with me. We had a brilliant Learning Disability nurse who taught me some tricks of the trade, visual timetables and scales of emotions and now-and-then boards and...and...and plenty other stuff. We had an awesome speech therapist, specialist in autism, who sat in our house and dripped expertise, drawing us up social stories and lending us books about CBT....
I should be fine. I have all this baggage. But none of it quite fits what I need right now. Because of course my boys aren't behaving in the ways that I am used to managing, this is a new situation and they have responded by developing new strategies to try my patience: I shall have to find new strategies to respond to them. Now that I look at my skills, I feel somewhat like the woman described in Susan Coolidge's novel of nineteenth-century emigration from east to the American West, who insisted on bringing thread and needle, because there would be nothing as civilised as that locally. When she arrives, she finds that what she has brought is either excessive or useless, because there is plenty of stuff locally available and she needs to find what is to hand. Clearly, from the conversations I have had today on phone and email, there is lots of local expertise, lots of support available: I need to stop rummaging in my baggage for skills that aren't working and go hunting for the right local expert, the right strategy, the right network here. To enable the boys and I to have fun here, in this beautiful land. Because too much baggage weighs you down: it will be no fun if I spend all my time struggling under the strain of not feeling able to handle them.
I feel like a newborn child in New Zealand. No awareness of the local culture, no grasp of the practicalities like how to buy a stamp. I can't even find a GP willing to register us. And I have to find superb disability support, IMMEDIATELY, for my bright, high-functioning and challenging kids if we are not all to spend the rest of the summer screaming at each other.
It's a tough call. I'll let you know how it goes.
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