22 April 2010
Haven’t updated this for ages (not that there’s all that many of you reading who don’t know why), but just in case there’s anyone out there who doesn’t actually know me, the reason is because I’ve been in the United States for an extended trip, which was further extended by one day due to the unpronounceable Icelandic volcano erupting. So I’ve had 11 days away from T and the children, which has been sad and a little lonely but also refreshing in a way. I’d thought when I left that I’d do lots of writing while I was out there, especially when it became clear there was no chance T would be able to join me in New York. But as it happened I managed to fill the days with meeting people, seeing movies and wandering around. In the downtime in Oregon I watched old episodes of Glee I’d downloaded. It was all strangely blissful.
According to my sources back home in England, the kids are alright. In fact, I could see for myself during the video calls I made through Skype while I was there. Whenever I got through to them, E appeared rather unimpressed with the whole event and more interested in playing with the blocks I’d left in my office where the Skype connection is set up. R, however, was delighted to see mummy and all through the call would keep clapping and waving and blowing me kisses to me. T reckons he missed me more but didn’t show it as much, whereas E was more obviously clingy and needy.
The big news is that in my absence the Naughty Box finally arrived. This is a cage-like structure that we had a builder colleague construct so that when R does something unacceptable, like hit E or bite anyone, we can put him inside to show him there’s a consequence to that sort of behaviour. I was initially upset by the idea of doing it because it was too uncomfortably like putting one’s child in a cage. However, FAE gave it her blessing, and T argued quite rationally that there was no real difference between the box and putting R in the room where the freezers are but which he sees as no real punishment because he just spends his time in there pushing at the catflap, getting things out of the fridge and pulling books off the shelves.
So the Box arrived last week. D explained to me that it was no time at all until R did something naughty requiring use of it. She plonked him inside and walked away, no doubt to return taking care of E. She left him five minutes or so and then went back to check on him, expecting R to be teary and cross with frustration.
Not at all. Much like a wily octopus at an aquarium who kept stealing fish from a neighbouring tank that an ichyologist friend once told me about, he’d managed to climb out of the Box, go and get a toy from the play room, and then climb BACK in the Box where he sat out the five minutes quite contentedly playing with the retrieved toy.
Back to the drawing board, I guess.
Showing posts with label motherhood. Show all posts
Showing posts with label motherhood. Show all posts
Thursday, 22 April 2010
Wednesday, 7 April 2010
Lovaas schmoovas
7 April 2010
Now, onto the assessment yesterday. First of all, I was in a total flap about it because not only did we sense this would be quite an important meeting, but also I had managed to lose the bit of paper that told me what time it was happening at. Usually that wouldn’t be a problem because I put all important dates (as well as many unimportant ones, like the birthdays of people I barely know) in my Outlook diary, but somehow amidst all the chaos of upgrading my computer to Windows 7 and reinstalling Microsoft Office, the diary entry about the appointment managed to get lost completely. I had a horrible feeling the appointment was at 9am, so we had R breakfasted and ready to go by 8:30, at which time the unit opened for business and I could call them to check what time his appointment actually was. It turned out not to be until 2pm.
Although the breather was welcome, this created all sorts of problems about what to do with E while we were with R at the unit. D, our heroic nanny, stepped into the breach and offered to take E with her while she went to babysit the family of three girls she used to mind full time but who she only sees on Tuesday and Wednesday afternoons now. I said I fully expected E to come home with painted fingernails and lipstick, but I draw the line at mascara. E had a marvellous time playing with the girls, especially the youngest one who seems to think of E as some kind of living doll whose utter cuteness is only marred by the occasional need to have her nappy changed.
We got R to his appointment right on time, which is at the same NHS facility where he has speech therapy so he thought he was going to see G, his lovely speech therapist, and started asking for her straight away. Instead we met with Doctors L and M, the consultant psychiatrist in charge of our assessment and the educational psychologist respectively.
Dr L is an efficient woman in maybe her 50s with close-cropped hair and a friendly but strictly professional manner. For some reason my gaydar blinks with her and I think she may be a lesbian. Dr M is a younger woman who looks partly South Asian. I hadn’t really warmed to her brisk, stictly professional manner back in November when we first met her, but she seemed more likeable this time - smilier, kinder in the eyes, more open to explaining what they were up to.
The object of the appointment was to do a videotaped assessment of R mostly for Dr M’s sake so she could look through it and review his social, communicative and play skills based on what she saw there and earlier at his pre-school. Dr L held the camera and I was a little concerned she wasn’t using a tripod, but I suppose they’re don’t need Barry Ackroyd levels of quality here. We were told to hang back and let them get on with it at first as they watched him react to the room full of toys, but in the end we interacted with R quite a lot and talked to them throughout.
As I mentioned, Dr M had observed R at his pre-school and written up a report about her findings, which she gave to us to read later. She played with him with some blocks, pretending first that a round, cylindrical one was a car and then gave it to him with a “your turn.” He copied her. Then she pretended to drink from the same block, as if it were a cup. Again, he copied her. I’m guessing this was to test his aptitude for imaginative play or maybe just his ability to imitate behaviour, and it looked like it was all going swimmingly.
Next Dr M got out a bubble-blowing gun and started blowing bubbles. R looked a little taken aback, but intrigued and with lots of coaxing from me and T he came forward and tried popping some tentatively, like they might bite. Then Dr M blew up a balloon, which excited him, but when she let it go and it flew around the room he freaked out. Given that the next day he was happily playing with a mechanical chicken that made a noise equivalent in decibel levels to the Fall playing on the Pyramid Stage at Glastonbury, it was an odd reaction, but you never know what he’ll be spooked by. The remote control car she got out next was just as loud, but he loved that, although he preferred to play with the car on his own.
She also got him to choose which he wanted: sweeties or biscuits from a couple of boxes, using the exact same verbal formula ("which one? You choose.") that G uses in speech-therapy and he got that right away, although he preferred to feed his sweetie rewards to his daddy rather than eat them himself.
A key test involved me trying to get his attention just by calling his name and then getting him to look at something interesting just by using my eyes, not pointing. That he didn’t get. The only way I could get him to look was by shouting his name several times, touching his arm to get his attention, and then waving my finger at the object in question like I was trying to land an airplane with invisible flags.
After about an hour, it was all done. The doctors fetched their diaries and we set up an appointment for a feedback meeting on the 27th of April to discuss their findings, at which R won’t attend. I asked when we were going to get a diagnosis at last, and it turns out it will basically be on that day, although they were still kind of cagey about it and kept trying to explain that there is a particular procedure they have to follow with all this. It was all very redolent of social worker-speak or lectures from Health & Safety officers.
But we pushed a bit more and I said that I expected that we’re going to have a diagnosis of autism at the high-functioning end. Dr L nodded her head, and later T said he remembered that she said something like yes, that she verbally agreed, but I can’t remember her actually saying those words. I suppose it doesn’t really matter – we’ll find out on the 27th.
Dr M said that she was going to recommend that the school focus more on getting him to concentrate on tasks and finish them because he flits around so much when he plays, although we noted that he can concentrate on books being read to him and favourite DVDs for quite long periods, it’s just that new environments like their examination room and school are too exciting. T and I conjectured later that they may tell us on the 27th that they think he has Attention Deficit Disorder too.
But the interesting thing was that they seem to think his verbal skills are coming on pretty well now and that he’ll continue to develop in that area. Where he seems to be really behind is in social skills, especially paying attention to other people, responding to his name, playing collective games and so on.
This sort of took T and me aback a bit. We’d been going along thinking he was really improving because we just see him and E as examples, and by his standards he is improving. When I see the difference between him and other kids at school, I clock it, but somehow I filter out just how different he is from them after 20 minutes.
One other interesting thing was that we mentioned that we were curious about the Lovaas technique, and intensive interaction therapy that requires an autistic kid to be coached for around 40 hours a week one-to-one. I’d read about it before, and wondered if it might help him although it sounds like an extreme solution. FAE is dead against it, and says it really just works by behavioural reinforcement and turns autistic kids into robots who say please and thank you on cue, but have no idea why they need to say it.
T’s sister C has a friend (R) who has a friend (P) who has an autistic child and R was telling C that Lovaas worked wonders for them. I told C that I’d heard it was very full-on and required 40 hours of practice a week and she got a bit huffy like I was poo-poo’ing it out of hand. This was all very typical of C who, since she’s training to be a therapist, thinks she knows everything about psychology and I’d clearly got her on the back foot by knowing fractionally more about this particular subject. Just out of curtesy, I’m going to call P and ask her about how it’s worked for her and hear about “her journey” with her kid as she rather ickily put it in an email, but I don’t think it will be for us. Just to confirm my suspicion, Dr M said that she actually worked in a Lovaas centre years ago and although she didn’t exactly slag it off she was very keen to insist it doesn’t work for all kids and it might not be right for R. I presume that’s another thing we’ll all discuss on the 27th.
Now, onto the assessment yesterday. First of all, I was in a total flap about it because not only did we sense this would be quite an important meeting, but also I had managed to lose the bit of paper that told me what time it was happening at. Usually that wouldn’t be a problem because I put all important dates (as well as many unimportant ones, like the birthdays of people I barely know) in my Outlook diary, but somehow amidst all the chaos of upgrading my computer to Windows 7 and reinstalling Microsoft Office, the diary entry about the appointment managed to get lost completely. I had a horrible feeling the appointment was at 9am, so we had R breakfasted and ready to go by 8:30, at which time the unit opened for business and I could call them to check what time his appointment actually was. It turned out not to be until 2pm.
Although the breather was welcome, this created all sorts of problems about what to do with E while we were with R at the unit. D, our heroic nanny, stepped into the breach and offered to take E with her while she went to babysit the family of three girls she used to mind full time but who she only sees on Tuesday and Wednesday afternoons now. I said I fully expected E to come home with painted fingernails and lipstick, but I draw the line at mascara. E had a marvellous time playing with the girls, especially the youngest one who seems to think of E as some kind of living doll whose utter cuteness is only marred by the occasional need to have her nappy changed.
We got R to his appointment right on time, which is at the same NHS facility where he has speech therapy so he thought he was going to see G, his lovely speech therapist, and started asking for her straight away. Instead we met with Doctors L and M, the consultant psychiatrist in charge of our assessment and the educational psychologist respectively.
Dr L is an efficient woman in maybe her 50s with close-cropped hair and a friendly but strictly professional manner. For some reason my gaydar blinks with her and I think she may be a lesbian. Dr M is a younger woman who looks partly South Asian. I hadn’t really warmed to her brisk, stictly professional manner back in November when we first met her, but she seemed more likeable this time - smilier, kinder in the eyes, more open to explaining what they were up to.
The object of the appointment was to do a videotaped assessment of R mostly for Dr M’s sake so she could look through it and review his social, communicative and play skills based on what she saw there and earlier at his pre-school. Dr L held the camera and I was a little concerned she wasn’t using a tripod, but I suppose they’re don’t need Barry Ackroyd levels of quality here. We were told to hang back and let them get on with it at first as they watched him react to the room full of toys, but in the end we interacted with R quite a lot and talked to them throughout.
As I mentioned, Dr M had observed R at his pre-school and written up a report about her findings, which she gave to us to read later. She played with him with some blocks, pretending first that a round, cylindrical one was a car and then gave it to him with a “your turn.” He copied her. Then she pretended to drink from the same block, as if it were a cup. Again, he copied her. I’m guessing this was to test his aptitude for imaginative play or maybe just his ability to imitate behaviour, and it looked like it was all going swimmingly.
Next Dr M got out a bubble-blowing gun and started blowing bubbles. R looked a little taken aback, but intrigued and with lots of coaxing from me and T he came forward and tried popping some tentatively, like they might bite. Then Dr M blew up a balloon, which excited him, but when she let it go and it flew around the room he freaked out. Given that the next day he was happily playing with a mechanical chicken that made a noise equivalent in decibel levels to the Fall playing on the Pyramid Stage at Glastonbury, it was an odd reaction, but you never know what he’ll be spooked by. The remote control car she got out next was just as loud, but he loved that, although he preferred to play with the car on his own.
She also got him to choose which he wanted: sweeties or biscuits from a couple of boxes, using the exact same verbal formula ("which one? You choose.") that G uses in speech-therapy and he got that right away, although he preferred to feed his sweetie rewards to his daddy rather than eat them himself.
A key test involved me trying to get his attention just by calling his name and then getting him to look at something interesting just by using my eyes, not pointing. That he didn’t get. The only way I could get him to look was by shouting his name several times, touching his arm to get his attention, and then waving my finger at the object in question like I was trying to land an airplane with invisible flags.
After about an hour, it was all done. The doctors fetched their diaries and we set up an appointment for a feedback meeting on the 27th of April to discuss their findings, at which R won’t attend. I asked when we were going to get a diagnosis at last, and it turns out it will basically be on that day, although they were still kind of cagey about it and kept trying to explain that there is a particular procedure they have to follow with all this. It was all very redolent of social worker-speak or lectures from Health & Safety officers.
But we pushed a bit more and I said that I expected that we’re going to have a diagnosis of autism at the high-functioning end. Dr L nodded her head, and later T said he remembered that she said something like yes, that she verbally agreed, but I can’t remember her actually saying those words. I suppose it doesn’t really matter – we’ll find out on the 27th.
Dr M said that she was going to recommend that the school focus more on getting him to concentrate on tasks and finish them because he flits around so much when he plays, although we noted that he can concentrate on books being read to him and favourite DVDs for quite long periods, it’s just that new environments like their examination room and school are too exciting. T and I conjectured later that they may tell us on the 27th that they think he has Attention Deficit Disorder too.
But the interesting thing was that they seem to think his verbal skills are coming on pretty well now and that he’ll continue to develop in that area. Where he seems to be really behind is in social skills, especially paying attention to other people, responding to his name, playing collective games and so on.
This sort of took T and me aback a bit. We’d been going along thinking he was really improving because we just see him and E as examples, and by his standards he is improving. When I see the difference between him and other kids at school, I clock it, but somehow I filter out just how different he is from them after 20 minutes.
One other interesting thing was that we mentioned that we were curious about the Lovaas technique, and intensive interaction therapy that requires an autistic kid to be coached for around 40 hours a week one-to-one. I’d read about it before, and wondered if it might help him although it sounds like an extreme solution. FAE is dead against it, and says it really just works by behavioural reinforcement and turns autistic kids into robots who say please and thank you on cue, but have no idea why they need to say it.
T’s sister C has a friend (R) who has a friend (P) who has an autistic child and R was telling C that Lovaas worked wonders for them. I told C that I’d heard it was very full-on and required 40 hours of practice a week and she got a bit huffy like I was poo-poo’ing it out of hand. This was all very typical of C who, since she’s training to be a therapist, thinks she knows everything about psychology and I’d clearly got her on the back foot by knowing fractionally more about this particular subject. Just out of curtesy, I’m going to call P and ask her about how it’s worked for her and hear about “her journey” with her kid as she rather ickily put it in an email, but I don’t think it will be for us. Just to confirm my suspicion, Dr M said that she actually worked in a Lovaas centre years ago and although she didn’t exactly slag it off she was very keen to insist it doesn’t work for all kids and it might not be right for R. I presume that’s another thing we’ll all discuss on the 27th.
Show me the bunny
7 April 2010
There’s a lot to catch up with this morning, and I only have a little time to write. It’s 7:02 in the morning, and T’s turn on baby morning duty. Usually this would mean I get to lie in until the luxurious hour of, say, 8am, but instead I’ve slipped off downstairs to write. For some reason I feel guilty about it, like I’m pulling a sicky from work.
Anyway, before I get on to what happened yesterday at R’s assessment, it’s worth noting that last Sunday was Easter and we took the kids to our neighbours the N---s for their annual Easter Egg hunt party. The N---s are toffs like T’s family (the two families have known each other for years, and T's dad is WN's godfather), and they’re always having parties with dozens of louche, semi-bohemian posh folk and their children of many ages are milling around, drinking, and playing either ping-pong, snooker, football, rugby, cricket or all of the above at once. I used to find the whole scene kind of intimidating and too sporty and posh by half, but I’ve got to know them better now and rather enjoy the hugger-mugger muddle of it all.
As per tradition, on Sunday the grown-ups and the older kids all ran around the N---s’ several acres of garden hiding Easter eggs for the little kids, and when the signal was given, WN (our host, who’s like a golden retriever in human form) set off the children in batches according to the year they were born, which meant E was one of the first to get going having been born in 2008. Me and my very dear friend A, who I used to squat with back in the day and is now one of R’s godparents, herded E toward the Easter eggs while T wrangled R.
In brief, they did great. Even at 18 months (well, I guess it’s 19 now), E totally grasped the whole looking-for-chocolate concept, and so did R.
He’s been weirdly obsessed with eggs, as in chicken eggs, for a while. He can’t stand the taste of the real thing but of course loves chocolate ones. If he spots a box of chicken eggs in the kitchen during a meal he has to try to get to them, even though the result is usually so disappointing, much like life itself. But this time it was all win-win, and he found lots (with assistance) and stuffed as many as he could in his mouth as he went along. At one point he found a chocolate rabbit and I had to take a picture of him. “Show me the bunny!” I shouted, pace “Jerry Maguire.” (Tom Cruise movies have strangely evolved into a sub-theme on this blog.)
Later, E and R played exceedingly happily on the N---s’ trampoline with half a dozen other kids jumping all around them. (For some reason, my children just don’t get how to jump with both feet simultaneously.) E sat in the middle, still shovelling bits of chocolate in her mouth, grinning from to ear with joy at being bounced, while R ran around the outside, occasionally making a lunge to pull another child’s hair but, reassuringly, pulling back right in time if he said his name warningly.
From a distance he would have seemed totally normal, just another little boy tweeking on chocolate overload. At one point he wandered into the huge 50-man football match that was in progress, completely delighted to be chasing the ball and everyone negotiated around him. It reminded me of a time when I went to go see a rugby between Scotland and France (one of the dullest two-hour stretches of my life, since I have no idea how the game is supposed to be played). One of the France supporters released a chicken onto the pitch. It just flapped around contentedly the whole game, flying into the air whenever players or the ball came near. R is like that chicken.
Saturday, 27 March 2010
Padded cells
25 March 2010
Things have been ticking along nicely, with Spring coming and visitors visiting, and plans afoot to go to the States next month without the kids. R is in his happy zone these days, although he was under the weather the other day with a cold, so I kept him home from school. D put him to bed at lunchtime. (I was in my office on the phone to someone while reinstalling software after an update to Windows 7). Then D came in to inform that my presence had been specifically requested by R, who had said quite clearly, “I want mummy.”
This is the first time he’s ever asked for me. In fact, one of the earliest warning signs that he might be on the spectrum was the fact that, no matter how distressed he was, he never called for either me or T by name, a skill E had picked up before she was even a year old. Instead, he’d just howl like a wounded lion cub. It’s a mark of how far we’ve come that now he’s asking for me by name.
This last week he’s resumed a rather irritating habit of getting up on top of his chest of drawers when he’s supposed to be sleeping to play with the light switch, tear stickers off the wall and for some inexplicable reason, take the tops of Vaseline jars and smear the stuff on the wall. Because he’s climbing while still in his Grobag, an impressive feat in itself, he has an unfortunate tendency to fall off the chest of drawers and then scream like it’s our fault. T and I haven’t moved the chest of drawers out because it somehow depresses us that this will mean the last bit of furniture in the room will be gone, and all that will be in there will be his mattress on the floor, like the cell in a lunatic asylum. Perhaps it’s better to let him keep falling off the bureau until he realizes it’s no fun, although I’m worried he’s going to eventually break a limb.
Thank god it’s physically impossible for him to open the window in his room more than five inches, otherwise it would be like the opening sequence of “Antichrist,” albeit without the shagging in the shower. Otherwise, he’s developing very nicely, almost making conversation now as he asks for things with the full monty, “I want…” construction with hardly any prompting at all. He also knows how to say, “My name is R…”, and I think he’s getting to grips with how pronouns can change according to who’s speaking. The other night after he got out of the bath, he was hiding in the towel and then revealing himself with a theatrical, “here I am!” every time.
E is doing great too. I took her to Tumble Tots yesterday and she walked along a one-inch wide balance beam like it was a tightrope, admittedly with handrails, but the Tumble Tot helper and I were gobsmacked. I think she may be the really coordinated, sporty one that T half-secretly hoped R would be. At last, the fact that she was tiny at birth and is still dinky for her size will pay off in career options.
Our autism festival was on pause for a while, but resumed a couple of nights ago with the Bollywood movie “My Name Is Khan,” one of the biggest foreign-language hits of the year in which Shahrukh Khan (like, I’m reliably informed, Tom Cruise, Philip Seymour Hoffman and Brad Pitt all rolled into one in Hindi-cinema terms) plays an Indian Muslim guy named Rizwan Khan. Over the course of a brisk two and a half hours, Kahn, who has Asperger’s Syndrome, moves to the US, falls in love and marries a Hindi girl named Mandira (the actress is called just Kajol, like Cher or Madonna). He survives the anti-Muslim hostility post-9/11, but finds himself helpless when his stepson is murdered by racist bullies. Because he’s so literal-minded he takes grief-deranged Mandira at her word when she tells him to leave and not come back until he’s told the president that he’s not a terrorist. (She irrationally blames him for the kid’s death because he’d adopted him and so the kid, having been renamed Khan, had got more stick from schoolmates than he might have done if he’d stuck with calling himself Rathore, although I somehow doubt many racist bullies can distinguish that well between Indian surnames.)
So Khan goes on a cross-country journey with nothing but a backpack on a quest to tell the president, at the time George Bush, that his name is Khan and he’s not a terrorist. Think “Rain Man” meets “Forrest Gump,” but with South Asian accents. He meets po’ black folk in Georgia who accept him unconditionally, real Muslim terrorists (whom he reports to the FBI), and all kinds of other folk. There are other crimes and attempted murders, and generally enough action to fill your average daily soap opera for a year.
T and I were completely swept away with it all, even though the subtitles were hilariously badly translated, and somewhat infrequent to boot. (Sample: “When Zakir [Khan’s neurotyp brother] become 18. He went to america. He got scholarship at Michigan University. I felt very bad very bad when he was leaving. But I didn’t told him.”) In fact, the comedy of the terrible subtitles helped us get a little distance on the grand orchestral emotions on the display, and I might have wept all the way through it otherwise, especially in the last half hour which is sheer melodrama and all fab.
Once again, in a way like “Temple Grandin,” it’s a film about a character with autism but it isn’t only about autism. Khan’s condition creates and engine for the drama, but he’s misunderstood and suffers much more because he’s a Muslim rather than because he’s someone with ASC. The script sees nothing odd in the fact that this incredibly vibrant, beautiful woman should choose to marry this odd guy who shuffle walks, can’t make eye contact and has a violent phobia about the colour yellow. But Khan the actor has incandescent star quality. I can see why something like a quarter of the world’s population worship him like a god.
A friend of mine reviewed a few months ago and was telling me all about it and said he really wanted to know what I would make of Khan’s autism acting, like I’m some kind of expert or something now. The funny thing is, because, as far as I can work out, there’s such a huge range of behaviours associated with the conditions there can’t be one right way to “act autistic” on film, although I guess people who know a little bit about it will expect the actor to do a few key tics, like avoid eye contact, talk a little funny, walk on tippy-toes a bit. They’re like the universal signifiers, even though not everyone with ASC acts that way. It’s like in the old days when people played characters with Down’s (now there’s enough Down’s people around do the roles themselves) or mentally impairments used to talk funny-shouty and smile too much.
Things have been ticking along nicely, with Spring coming and visitors visiting, and plans afoot to go to the States next month without the kids. R is in his happy zone these days, although he was under the weather the other day with a cold, so I kept him home from school. D put him to bed at lunchtime. (I was in my office on the phone to someone while reinstalling software after an update to Windows 7). Then D came in to inform that my presence had been specifically requested by R, who had said quite clearly, “I want mummy.”
This is the first time he’s ever asked for me. In fact, one of the earliest warning signs that he might be on the spectrum was the fact that, no matter how distressed he was, he never called for either me or T by name, a skill E had picked up before she was even a year old. Instead, he’d just howl like a wounded lion cub. It’s a mark of how far we’ve come that now he’s asking for me by name.
This last week he’s resumed a rather irritating habit of getting up on top of his chest of drawers when he’s supposed to be sleeping to play with the light switch, tear stickers off the wall and for some inexplicable reason, take the tops of Vaseline jars and smear the stuff on the wall. Because he’s climbing while still in his Grobag, an impressive feat in itself, he has an unfortunate tendency to fall off the chest of drawers and then scream like it’s our fault. T and I haven’t moved the chest of drawers out because it somehow depresses us that this will mean the last bit of furniture in the room will be gone, and all that will be in there will be his mattress on the floor, like the cell in a lunatic asylum. Perhaps it’s better to let him keep falling off the bureau until he realizes it’s no fun, although I’m worried he’s going to eventually break a limb.
Thank god it’s physically impossible for him to open the window in his room more than five inches, otherwise it would be like the opening sequence of “Antichrist,” albeit without the shagging in the shower. Otherwise, he’s developing very nicely, almost making conversation now as he asks for things with the full monty, “I want…” construction with hardly any prompting at all. He also knows how to say, “My name is R…”, and I think he’s getting to grips with how pronouns can change according to who’s speaking. The other night after he got out of the bath, he was hiding in the towel and then revealing himself with a theatrical, “here I am!” every time.
E is doing great too. I took her to Tumble Tots yesterday and she walked along a one-inch wide balance beam like it was a tightrope, admittedly with handrails, but the Tumble Tot helper and I were gobsmacked. I think she may be the really coordinated, sporty one that T half-secretly hoped R would be. At last, the fact that she was tiny at birth and is still dinky for her size will pay off in career options.
Our autism festival was on pause for a while, but resumed a couple of nights ago with the Bollywood movie “My Name Is Khan,” one of the biggest foreign-language hits of the year in which Shahrukh Khan (like, I’m reliably informed, Tom Cruise, Philip Seymour Hoffman and Brad Pitt all rolled into one in Hindi-cinema terms) plays an Indian Muslim guy named Rizwan Khan. Over the course of a brisk two and a half hours, Kahn, who has Asperger’s Syndrome, moves to the US, falls in love and marries a Hindi girl named Mandira (the actress is called just Kajol, like Cher or Madonna). He survives the anti-Muslim hostility post-9/11, but finds himself helpless when his stepson is murdered by racist bullies. Because he’s so literal-minded he takes grief-deranged Mandira at her word when she tells him to leave and not come back until he’s told the president that he’s not a terrorist. (She irrationally blames him for the kid’s death because he’d adopted him and so the kid, having been renamed Khan, had got more stick from schoolmates than he might have done if he’d stuck with calling himself Rathore, although I somehow doubt many racist bullies can distinguish that well between Indian surnames.)
So Khan goes on a cross-country journey with nothing but a backpack on a quest to tell the president, at the time George Bush, that his name is Khan and he’s not a terrorist. Think “Rain Man” meets “Forrest Gump,” but with South Asian accents. He meets po’ black folk in Georgia who accept him unconditionally, real Muslim terrorists (whom he reports to the FBI), and all kinds of other folk. There are other crimes and attempted murders, and generally enough action to fill your average daily soap opera for a year.
T and I were completely swept away with it all, even though the subtitles were hilariously badly translated, and somewhat infrequent to boot. (Sample: “When Zakir [Khan’s neurotyp brother] become 18. He went to america. He got scholarship at Michigan University. I felt very bad very bad when he was leaving. But I didn’t told him.”) In fact, the comedy of the terrible subtitles helped us get a little distance on the grand orchestral emotions on the display, and I might have wept all the way through it otherwise, especially in the last half hour which is sheer melodrama and all fab.
Once again, in a way like “Temple Grandin,” it’s a film about a character with autism but it isn’t only about autism. Khan’s condition creates and engine for the drama, but he’s misunderstood and suffers much more because he’s a Muslim rather than because he’s someone with ASC. The script sees nothing odd in the fact that this incredibly vibrant, beautiful woman should choose to marry this odd guy who shuffle walks, can’t make eye contact and has a violent phobia about the colour yellow. But Khan the actor has incandescent star quality. I can see why something like a quarter of the world’s population worship him like a god.
A friend of mine reviewed a few months ago and was telling me all about it and said he really wanted to know what I would make of Khan’s autism acting, like I’m some kind of expert or something now. The funny thing is, because, as far as I can work out, there’s such a huge range of behaviours associated with the conditions there can’t be one right way to “act autistic” on film, although I guess people who know a little bit about it will expect the actor to do a few key tics, like avoid eye contact, talk a little funny, walk on tippy-toes a bit. They’re like the universal signifiers, even though not everyone with ASC acts that way. It’s like in the old days when people played characters with Down’s (now there’s enough Down’s people around do the roles themselves) or mentally impairments used to talk funny-shouty and smile too much.
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