Thursday, February 16, 2012

"Oh wow, autism is amazing."

It is my first morning at this toddler group, and I am trying to work out the decent interval that needs to pass before I can stop watching my son, go into the kitchen and make myself a cup of tea. (God forbid that it turns out to be one of THOSE toddler groups where they make you wait for tea until the children are having juice and a biscuit). To pass the time, make friends and most importantly dull the tea-cravings, I am chatting to the mother next to me. We swap ages, schools of our other children, have the same eternal conversation about the weather, it always runs like this:
Random Kiwi: "Oh, poor you, what a terrible summer, all this rain, so dreadful to arrive like this."
Me: "No, not really."
Sympathetic Kiwi, certain that I am putting up a brave front and keen to reassure me: "No, no, it must have been awful for you."
Me (looking at blazing sunshine): "No, honestly, if you've been living in Yorkshire this weather is amazing."
Them: "Oh really? Yorkshire, you say? Worse than this?" (dubious stare and momentary glance away, as if they are trying to pretend that the thought "THIS WOMAN MIGHT BE INSANE WATCH HER AROUND MY KIDS" isn't running through their head).

I am doing my usual trick of trying to think of ways not to mention the diagnosis. Then I think, sod it, it will have to come up sometime, and with an unusual level of chutzpah I say, clearly and loudly, "Oh, and by the way, he has a working diagnosis of autism, and yes, I know that he doesn't look like it, I'm just telling you now to get that conversation out of the way."
There is a moment's pause and then the man next to me says "Wow! How amazing!" He steps forward. "You know, I used to work with autistic children. How amazing. You know, it is the most FASCINATING condition."
Now Kiwi enthusiasm is great, and I suppose it is better than shunning me, but I can't help but feel there is something a little weird and inappropriate than enthusing how amazing it is to have a child with autism. Yes, it's amazing, my life is so much richer what with all the extra biting and yelling and hitting. I resist the temptation to snap "You can look after him and his brothers for a couple of weeks, I bet you'll find that REALLY fascinating." Instead, I comfort myself with the thought that this is a worthy entry for my long-planned book "THINGS NOT TO SAY TO THE PARENT OF A CHILD WITH ADDITIONAL NEEDS."
Oh Lord, I think, I am really not sure that this toddler group is worth it, even with the prospect of an imminent cup of tea.

I tell myself that I must not be grumpy, that I must be glad that he is being positive and welcoming. We talk for a few more minutes, during which he enlightens me that children with autism have these extraordinary sensory issues - really? You don't say? Do you mean THAT is why I am importing strawberry toothpaste from England? I thought I was just spoiling my sons - then I escape to get myself the long-awaited tea, and fall into conversation with another woman who is here as a childminder. We chat re: diagnosis, and she asks "So why do you think it is a good thing to get it diagnosed?" (Er, because if you don't your child will be labelled naughty and stupid and will probably not manage to learn anything in a mainstream school, is that enough?") As I flounder for an appropriate, non-offensive response, she says apropos of nothing: "Oh, but toddler groups like this are great." I nod, delighted that we have found something we can agree on. Yes, it is a decent toddler group. There is tea, and toys, and it's cheap. Then - and I am not making this up - she looks at me with tender complacency and adds "Because you come here and you realise, it's not just you, everyone's going through the same thing, your child is not difficult or unique, they're no different from anyone else." I can feel my eyes starting to roll and push my face into that nod-and-smile looks to stop myself barking "Well, it's not QUITE like that for all of us. Noticing how different and extra difficult and unique your child is is EXACTLY what toddler groups mean for me." As first impressions go, this was not going well. Two contendors for "worst thing to say to a mother of a child with additional needs" in a single morning. I would probably have left the room on the spot had I not known we were nearly at the point where it wouldn't look greedy to have a second cup of tea.

But here's the thing. They were all lovely people, and I am looking forward to going back. And the reason is simple. Shortly after these intensely depressing and frustrating conversations, my son decided to show them just how jolly autistic he could be. He obsessed about a toy trolley, then tried to ride a tricycle of the stage. When I told him off, he refused to engage in eye-contact, went to a far wall and banged his head, then, when I distracted him, went straight to another wall and did the same. Oh, it was dreadful, but it was also really good. Because it was a bit like an acid test of good intentions versus actual intelligent, wise, behaviour: not one of those people tried to lecture me or patronise or reassure me that it was normal. Because it clearly wasn't, and it was clearly tough, and they just sort of accepted that, and got on with the business of including me in other ways, by talking about families and holidays and swimming pools. And I felt hugely reassured, and as if this might be a safe space for us both after all.

It was a bit like what happened when I went to a thing called Mainly Music, which is a fun morning activity run by a friend. You sort of dance around to weird songs about bending left and right, waving scarfs in time to the music. If you ever go, make sure you wear a sports bra. Then we had coffee, and I was introduced to a lovely family who live close by and have three boys. The mother was planning to home-educate, grandma told me with a beaming smile. I expressed polite enthusiasm thinking "That is the problem with this sort of ambitiously structured activity, it attracts all the ambitious and amazing parents who find everything a walk in the park and expect you to do too." Hoping for a bit of battlefield camaderie, I said to this Supermum that she must find it hard at times. "Oh, it's fine, they are really easy," she said. I could see her point. The three boys sat side by side on the mat, companionably sharing their snacks. Mine would have been rolling around on the carpet. "Oh, right," I said, my heart sinking, and with a kind of kamikaze this-friendship-is-clearly-going-nowhere-then type honesty, said truthfully something along the lines of "Wow, that's amazing, I can't even cope with my boys before and after school, the government are giving us respite to help them manage them." (There, that's how rubbish I am. Now go away with your perfect family and leave me alone). "I taught a child with Aspergers," she said, "he could be VERY hard to manage. I don't envy you at all." And all of a sudden I thought she was lovely, and wanted to make friends.

Sometimes it's wise NOT to despair of the rest of humanity, or give up on a toddler group on the first sign of patronising guff. Especially one that offers unlimited tea.

5 comments:

  1. I'm so impressed at you managing to bite your tongue each time! I imagine, though, that the majority of these silly comments stem from people not knowing what to say. So instead of sounding sympathetic (like the lovely lady in the last example), they want to say something positive and end up saying something really incredibly insensitive instead.
    Now off you trot, have a cup of tea and thank your lucky stars for the 'fascinating' life you now have before you :? ;)

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  2. Well, yes, I think that is right. I also think that it was quite good for me that the toddler group turned out to be lovely, because that reminded me that it was just nervous conversation (rather than a sign they were very unsympathetic) because you can get so jaded, you don't give people a fair chance. Or i can, anyway. :-)

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  3. This is brilliant stuff. And very familiar. I would love to have a virtual cup of tea with you please. Pass the milk!

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  4. Oh, I can get jaded, too, C. In my case, it's the endless, boundless fascination with my accent. It gets so tedious. Hopefully for your sake NZers are less prone to that particular topic of conversation than Yanks! (I'd assume they are).

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  5. That's an interesting point, LM, need to think and reflect - there might be another post in it!

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