03/12/2010

Portrait of Autism #14

It's one of those days when the sun is shining through dirty window panes and the heating is on full blast everywhere. It makes me feel a little sick, and not nicely predisposed towards to the people around me. There's a lot of them today - parents, siblings, grandmothers, everyone has come out for therapy. All women today - which is unusual - and most of them covered - even more unusual.

There's a child screaming, somewhere. He was whimpering just before his class started but now he's howling - has done for fifteen minutes.

Opposite me there's a tiny boy in a pushchair. He's waiting for an older brother, but it looks as though he's on the spectrum too. He's shaking his head violently from side to side. His grandmother who encouraged him at first - maybe he's trying to say 'no'? -  is trying to stop him now, as he looks like he might hurt himself. God, that child must be hot! He's wearing woolly tights under warm trousers, and what looks like three layers of polyester on his back, plus a huge blanket for going outside that hasn't been moved off him properly. I want to get up and undress him and the only reason I don't is that I remember what it was like having strangers coming up to me in the streets, telling me my children weren't dressed warmly enough, pulling their trousers down so their ankles weren't exposed. How can something like being too hot be a cultural variable?

The mother is fussing with little plastic bags containing food and drink. I can see her think 'If I get  the right combination of drinks, and food into my boy he won't act out'. I know, I've been there.

On the other side of the room, there's another group of women sitting around the laptop, arguing over how to make it work. 'Is it plugged in?', one of them keeps asking. It turns out it's not. A teacher comes in and helps them put the plug in the hole. Now they need to decide who is going to watch their child on the webcam. Normally it's all pre-arranged, but today is chaotic.

And then, just like that, nearly everyone's gone. The only people left in the room are Charlotte and myself, and a woman and her daughter. The sun's shining a bit less too, and I'm beginning to feel more comfortable. I whip out my pad, and start to write about the weather, and the crowded waiting room. I feel this is going to be a bad-tempered post and I think it's just about okay, it will show that parenting an autistic child doesn't make you immune to pettiness and trivial peeves.

But as jot down the first paragraph, the woman at the laptop speaks to me. She's asking me if I'm French. I look at Charlotte for confirmation that I've heard right. The woman is covered, wearing a long coat as well as a headscarf - not a bright peasant outfit, but not a typical city covering either. Sort of quiet and cheerful at the same time, with a little grey fabric flower pinned on the breast of her coat. People don't normally ask me if I'm French. They assume I'm German, or American. They either speak to me in what they think is my native language, or ignore me completely. I'm a foreigner.

So I say yes. And I volunteer that my husband is English. She says something else: 'Why are you here?' I'm not sure I've understood so I turn to Charlotte again. I expect she wants to know why I'm Turkey, why I bring my son to a Turkish speaking therapy centre. It turns out she wants to know who my autistic child is, and what his diagnosis is. So I tell her. And I ask about her. She says her son is sixteen. Non-verbal. Does not communicate in anyway, just likes to sit by himself, playing electronic games. They've been coming here for four years now. Before that, they used to go to a place near their home, which is a village by the airport, a couple of hours from here. But that place wasn't any good, so now, they come here once a week. It takes them the whole day for a two hour session.

She asks me what I do with my son during the day. She asks if I work. If I've found someone to help look after him when he's not at school. She doesn't work, she has to stay at home with the boy, as he won't allow anyone else to look after him. Her husband is a mechanic for the local 'jendarm' the army run rural police. She has two other children, both daughters, both very bright. The youngest, who is here, is fascinated by Charlotte's ability to speak three languages. She's not shy about talking to us either, and, like her mother, she's understood that she needs to speak slowly, clearly, and use simple words when she addresses me.

The mother asks me what I think 'caused' the autism. I say I don't know. I hear it's partly genetic. She says: do you have any autism in your family? I say no, not that I know of. She says, me neither. We both shrug. She says: 'What can I do? I come here every week, but nothing changes, he never makes any progress.' I ask 'Is he happy?' She says 'No, except when he's by himself. Or with his sisters. He loves his sisters.' The little girl looks to Charlotte: 'Do you and your brother love each other too?' Charlotte says yes, emphatically. The two girls look in each other's eyes, and something passes between them.





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7 comments:

Looking for Blue Sky said...

Someone once commented to me that it would be good to have more brothers and sisters for my special needs child (as it was then) and while they have their issues my little gang all love each other - wish it was a bigger gang though!

@jencull (jen) said...

My bunch are all besotted with each other too and I love to watch them together. It does matter, a lot. Jen

Elenchus said...

Sandrine, this post is quite, quite beautiful.

http://philosopher-without-a-cause.blogspot.com/

Marylin said...

This is such a sweet ending to a post. My boys absolutely adore each other, I'm so glad they have that. :)

Jade Summer said...

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autismandoughtisms said...

Such a beautiful, heart-touching post. You are a gifted writer.

I take a lot of joy from watching my 5 year-old autistic son playing with his 1 year-old neurotypical brother. They adore each other and learn a lot from each other. When the rest of the day has been stressful and distressing, all it takes is seeing them giggle at each other in that special way, and I quite literally have to hold back tears of joy.

Sandrine said...

Thanks for commenting! I know what you mean - it makes my world a much more peaceful and less frightening place when I see the children being happy together. Not that they don't fight as well! But that's reassuring too - seeing them argue over who's turn it is to play on the computer.

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