Sunday, February 19, 2012

SN Top Trumps: Are you being served?

Standing in a bike shop, waiting for a puncture repair. Sons are getting restless, so I move slightly away from the workshop entrance, towards the gleaming rows of new bikes. Immediately, a salesman bounds up. "I'm being served, thanks," I say. "Ha HA!" he says, loudly, to his colleagues. "Did you hear that? I'm being served." He mocks my accent. "Just like an old British television series, I'm being served, what-what?" My sons look at him in mystification, with no idea what he means. He goes on and on about it for a few minutes. I sigh, wondering how precisely this is going to make me want to buy a bike from him. I'm used to this kind of crap in England, but it's the first time in New Zealand. I had wondered what it would be like, being a Brit in Kiwi-land: the answer is, very boring. Like a weak cup of tea. There are so many expat Brits around that my accent is neither interesting nor threatening. No one cares, which is nice. And generally, New Zealanders don't identify my RP accent as particularly posh, which is a nice change from the UK (in Yorkshire I gradually developed a regional accent for shop use, to avoid the funny looks). So it's odd that this guy is so hung up about it: and then I realise - he is British too. Oh, well of course then. That explains it. And the fact that he's an idiot, of course. Maybe they should hang a sign up at Auckland Airport: Immigrants, Please declare any bigoted views at Customs, they will be confiscated unless they relate to cricketing Australians in which case, you need to work on them.

It is strange how we English still prey on each other abroad, I think. You would think there would have been a little solidarity. I hate apologising for myself, about things I can't help, like the way I speak or the fact that my son has just had a HUGE meltdown in Macdonalds, yelling and trying to throw tables. (Perhaps he has read what proper parents have to say about the evils of Macdonalds and is protesting, if we only took him to chi-chi organic cafes he would behave superly. Still, I'm not risking it. At least the MacDonalds tables are nailed down). The salesman's nonsense bothers me a lot less when I realise that it is actually rather refreshing to feel singled out publicly for a reason that is NOT my children. Because of the ongoing pressure of experiences like that (and because I fancy getting out of the house on my own) I'm going to a support group next week. It costs fifteen dollars, a fact that caused my husband to splutter slightly and ask who exactly I thought I was supporting. But we both know it is a good idea, it is a good way to meet people , plus (of course) I get to let off steam about the boys. It's a good group, and I am really looking forward to it - so much so that I am prepared to face my personal support-group-neuroses (is there a specific disorder for that yet?) For me, part of going to any support group is also the recognition of how lucky I am, that the "isshooes" we have with our sons are so comparatively small: there is such a range of developmental delay possible that I can never go to one of those things without feeling slightly ashamed, because my boys are not phobic of social contact and will leave the house without a fight. Do I have it easy? Well yes, in comparison to some of the stories I hear. This means I go into a tight spiral of worry and angst, worrying about whether I should really be there and whether all the other parents are secretly shaking their heads and thinking "what a wuss, she thinks it is a stress not being able to go to the park safely? What about not being able to SPEAK to your son without a meltdown?" (or whatever their dreadful issue is). I can get myself into a state where I am in danger of bursting out "Look, I'm sorry, they all breathe unaided! OK? Yes, I know, I'm a fake, I'll just get my coat, oh sorry, do you guys know what a coat is? It's this strange thing we Brits wear in the rain..."

This paranoia was not helped by the experience of the only support group I ever attended in the UK, which threw together everyone from the mother of a life-limited baby, to several parents of children with non-verbal severe autism, to, um, me. After a couple of weeks one parent came over to me and said "So basically what your children have isn't disability, it is just a kind of personality, isn't it?" Well, yes, if you take a neurodiversity sort of view then that's true. But they weren't managing life at school or at home, and they needed extra help to achieve the basics, so that disabled them in practice for now, if not for life. It was also a bit dispiriting to be called - in essence - a fake - because I wasn't there because my life was easy, even if it wasn't anywhere near as hard as hers. SN Top Trumps, the Mumsnet SN board calls it - when one parent claims to have a harder time, or a worse diagnosis, than another. This experience has made me a bit suspicious of support groups, in case they have the opposite effect, create sniping instead of support. It's all petty and silly and counterproductive. Because at the end of the day, you don't pick your own disability, you just work with what you have been given, just like you get lumped with your parents' choice of family accent. (Actually, RP wasn't the worst of it. Try having a slight South African tang to your voice in England during the apartheid boycott era. I might as well have worn a badge that said "Hit me, Guardian-reading teachers." But I digress...)

You would think there was solidarity, between English people abroad and the parents of SN. Well, sometimes there is and sometimes there isn't, I guess, either the experience of marginalisation bonds you closer together or you split into ever-smaller groups, the disability equivalent of the People's Judean Front. "Ooh, look at you from Essex, I'm from South London. What are YOU doing in New Zealand?" "Who do we hate? No, not the neurotypical families, this week's seminar is about whipping up hatred of those kids with Downs, can you imagine how much sympathy and public understanding their parents get?" That sort of thing.

If I ever thought I needed a bit of sympathy and solidarity, it was after I had the experience of taking my boys to the park - by myself - this weekend. Do I never learn? Well, I thought it would be OK. It was one of the Families in the Park days where lots of toys are brought out by the local council for children to use. We'd been to one in the summer holidays, and they had stayed close to the toys and played beautifully. So I was optimistic. But this time, the toys were familiar and less interesting. So my boys decided to add a little bit of pzazz to the proceedings.

Firstly, and most scarily, my middle son decided that what he really wanted to do was be up in the trees at the edge of the park, the ones way out of sight by the road. Naturally, due to speech delay, he didn't tell me this so there was a nasty five minutes where I and the organisers hunted for him: when we found him, he was not at all remorseful, hid behind a tree and hissed. (He's not getting speech therapy any more since we moved, he's clearly making up for this by taking language lessons from the stray cats that inhabit our garden). I spent some time trying to persuade him down, trying to watch the other two as well:

then dealt with the eldest son's fury with me at the idea he should wear suncream, sensory issues mean that he hates the stuff so I end up trying to hold him down to apply it without falling foul of New Zealand's stringent child cruelty laws (sod the idea of suncream protecting the skin, the stress of applying it to him daily is clearly hastening my wrinkles):

then my middle son decided he needed a drink, but refused to drink from the fountain, so I had to beg for a water bottle to give him (all the other parents seemed to be there with one beautifully behaved one-year old, they looked at me with distaste and a clear certainty that they would never, ever, develop into a harassed screaming water-bottle-less harridan like me):

somewhere in the middle of all this I rang my husband at home and informed him that this was the last Sunday afternoon I was ever, ever, doing this by myself again.

He was very reasonable and understanding about it, which was probably good because I was in the mood to have a right row with anyone who got in my way. Except the boys, of course, because if I yelled at them they would all lie down on the grass and scream, and I would have no way of getting them back to the car. So of course, I am tolerant and sweetly patient and reasonable with them, and then FOUL with everyone else. This is my problem. I get very snappy and impatient. I have no patience left for friends who think that they know what I should be doing to sort out behaviour, for stupid English people who think it is fun to mock my accent. I have no patience for ANYONE ELSE to be unreasonable except my sons. And actually, I don't have much patience for reasonable requests either, like my husband wanting a sleep on Sunday afternoon. You want me to PAY you? I feel like yelling in a shop occasionally. Do you know what kind of morning I have had? And yes, he's knocking that display to the ground. You should be GRATEFUL, I tell you, grateful that's not YOUR HOME he's destroying. People talk about parents of SN children being depressed. I dunno, I think it's more surprising we're not all in jail for grevious bodily harm because someone asked us if we wanted sugar with that.

And that, ultimately, is where I think the problem of SN Top Trumps comes from. The day-to-day reality of being calm and unflappable and kind to your kids does take its toll. And you end up rather jaundiced about everything and everyone else, and squinting out of the corner of your eye at other mums, even other mums of children with SN, whose problems are subtly different from your own, and wish that you had them instead.

Judge not, and all that. But it's tricky not to do. When you are sleep-deprived and fed up with being incredibly understanding and tolerant of your children's weird and wacky ways, it is terribly easy to judge all the other parents in the universe ever, even the ones of SN kids. And that is why I am rather excited about this support group I am going to again, because I really didn't feel judged or misunderstood at all. Well worth fifteen dollars. The only downside is that last time the tea did not seem to be made with boiling hot water. We all bring different experiences and expertise, don't we? All are to be valued and listened to equally. We speak in different accents and tongues but the message is the same. Hmm. Well, there are limits to all this inclusion. I mean, I might have to do something to educate the group about proper tea.

5 comments:

  1. That's a really insightful post. Can't imagine how you manage. Still, you do well to be unflappable with your boys. Hope your new group works out well.

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  2. Thank you - and especially for reading all the way through, I was assuming it would be too long and meandery for most readers!

    I am not always as unflappable as I would like with them, be reassured...

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  4. No, not too long and meandery at all. As ever, actually, a compelling and clear train of thought. Your situation does sound so tough, and I admire the way you describe it with such good humour. (Though sometimes feel guilty for chuckling... Still, you made me).

    Good luck with the group - and get that tea making sorted (you might want to say that last phrase aloud in a Yorkshire accent for the full effect and a taste of home).

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  5. Hah! Have had that experience of Brits latching on to me simply because of my accent - actually, I've had a few British friends here who are good friends, but we worked together & liked each other, not just because of shared culture (though that plays its part).

    I have many days of snappiness and being on the edge of my patience with two "perfectly normal" children, so I can imagine how you are feeling for much of the time -only I assume it's far more so.

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