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.
Saturday 27 March 2010
Thursday 11 March 2010
Twinkle, Twinkle, Little Star
11 March 2010
A few days ago, we had a visit from our Friendly Autism Expert or FAE, as we’ll call her here. (It also conveniently stands for Favourite Autism Expert). Not only has FAE had years of experience working with families and schools about how to coax interaction out of autistic children, but she also the mother of an autistic child herself, which means she’s incredibly empathetic about what we’re going through as parents.
She’s come to see R two or three times already. I think the first time was a year ago, around when T finally broke down and agreed with me something seemed wrong with R, who was about 20 months old at the time, because he wouldn’t acknowledge T shouting his name at him in the bath. FAE was there when the health visitor came for her official visit to discuss our concerns so that she, the health visitor that is, could write a report to our GP asking he refer R to the local specialist unit, in order to get the whole diagnosis thing rolling. So knowledgeable is FAE about autism, she practically dictated to the health visitor (a lovely woman, but a little out of her depth with all this) what she should write about the signs.
On that first visit, FAE coached us and D through what we needed to do to start getting R to interact with us more. Basically, it comes down to being hyper-observant about how he’s reacting to us, and learning how to get his attention and then build on that to parlay the attention up into an interactive game, or conversely learning how to spot when to lay off a bit and give him his space. She told us how to use keywords to encourage him to use them back. For instance, when we trap him between our legs so he can’t escape, we should say, “Trap!” so he knows this game is called Trap, a bit of play he used to find hilarious. If we have him trapped in a leg vice and have got him giggling away, then we’re supposed to pause for a moment to give him a chance to say, “Trap!” himself, to effectively ask us to continue the game.
Since we can’t be inside R’s mind, we’ll never know if following FAE’s instructions made the difference or if he simply decided off his own back to start talking and interacting more, but I feel it’s been instrumental in coaxing him out of his shell over this last year. Maybe he simply liked getting more attention after having felt neglected in the wake of his sister’s birth when he was 14 months. In any event, the child FAE met a few days ago, according to her, was markedly more interactive than the one she’d met a year ago. He made eye contact with her several times, came up to her and through gesture asked her to take a lid off a pen so he could scribble on some paper like she was doing, and was generally talking and expressing himself much more, even accounting for the fact that he’s older than he was when she last saw him. He even treated her to a rendition of “Twinkle Twinkle Little Star,” a song he’s really making his own, like Frank Sinatra with “My Way.”
After going over some strategies about how to handle R’s less amusing habits – like attacking the touch-sensitive bin in the kitchen and chucking hard objects like pool-table balls as far as he can whenever he gets a chance – FAE, R and I all went to his pre-school so FAE could give his one-on-one teacher N a lesson in how to maximise her own interaction with him. Poor N, and incredibly sweet and gentle soul who’s only ever worked with neurotypicals, had been feeling lost and confused about what she was supposed to do with this weird kid who races manically around the schoolroom like he was tweaking on crystal meth.
The school had been very taken aback by his behaviour in the first few weeks he started attending, and insisted they couldn’t cope with him unless he had a one-on-one teacher. If he was to start going more than one session a week, we had to get funding from the council, which involved a liaison teacher coming in to observe him one day. (We offered to pay for the extra teacher ourselves in the interim, but for some reason they resisted this.)
Fortunately, R was particularly badly behaved the day the liaison teacher came. Her report, bizarrely enough all written in the present tense, sounded like a script for an as-yet-unmade film about an autistic child: “R goes to the art table and throws another child’s half-finished project in the air. The other child cries, but R is off to the sand table where he begins throwing sand in the air, laughing maniacally.” I’m sort of paraphrasing here, because she didn’t actually use words like “maniacally,” but that was the gist. The school was horrified by the report and worried T and I would be upset by its “negative” tone. We just shrugged and said if it gets the funding in, they can call him the next Jon Venables as far as we’re concerned.
As it happens, we got a letter a day before FAE came saying they would fund a one-on-one teacher for two sessions a week, and that will continue to be N. So on the day I’m writing about, FAE watched N and R for an hour, while I watched them, and then she gave N feedback about how to approach scenarios she’d just seen. Like, for example, if R is playing with dollhouse furniture, opening and shutting a toy wardrobe over and over, N should pick up another toy with doors on it and open and shut them too so he could see she’s interested in what he’s interested in. From there, they could escalate it into a turn-taking game. I chipped in that it was like you’re single and suddenly going out with a guy who’s only interested in football, and even though it bores you rigid, the best way to land him is to feign interest in football.
N was incredibly grateful for the guidance from a proper professional expert. I could see that FAE knows exactly how teachers think, and her years of experience in working not just with people with ASC (Autistic Syndrome Condition – we’re not supposed to call it Autistic Syndrome Disorder anymore) but with parents and educators has made her incredibly competent at dealing with both sets of folk.
That night, a friend of ours came to stay and we all watched “Rain Man,” the daddy of all autism movies. I hadn’t seen it in years, in fact I think I may never have seen the whole thing all the way through.
First of all, I was touched that the copy we watched was from D, who went out and bought it herself because she wanted to know why I kept jokingly referring to it. (When R is being particularly withdrawn and in his own world, I call him Rain Man.) In return, I gave her our copies of “Temple Grandin” and “Adam” and look forward to hearing what she makes of them.
As a film about someone with ASC, “Rain Man” is better than I expected it to be, although it naturally rather romanticizes the Dustin Hoffman character as a sort of noble autistic savage savant. We watched a documentary (surprisingly boring) a few days ago about a pair of autistic savant twins, and it made the point that savantism is incredibly rare – there are only about a hundred known cases of people with ASC who can add up huge numbers in their heads automatically or tell you what day of the week any given date was or will be. I read once about a parent who’s also a doctor and has an autistic child. He said that it annoyed him that the two questions he’s always asked about his kid are first, does he think the MMR vaccine caused the syndrome and, secondly, does his kid have any amazing savant skills. (The answer is no in both cases.)
But still, from what I can gather based on my limited experience of having R and reading a shit load of books about autism, Hoffman nails the mannerisms bang on – the monotone voice, the shuffling, tippy-toed gait, the furtive quality poor eye contact creates. It’s just too corny the way he suddenly loses his inhibitions about body contact in order to let Valerie Golina dance with and then kiss him in an elevator. Also, his character copes rather better than I would expect with his routine being disrupted when he’s taken out of the institution he’s been living in for 30 years or whatever it’s been. He insists on having lime-flavoured jello every Tuesday night, but if that were R he’d have thrown a fit if the jello the Tom Cruise character managed to provide didn’t taste the exactlyn the same as it always tastes. But what the hell, it’s a Hollywood movie and the character couldn’t be too weird or annoying lest it put the audience off.
Strictly as a movie, we were amazed at how slowly its action moved forward, and how baggy the script was compared to the wham-bam of current movies which can’t trust an audience to just sit patiently and watch two people interacting, unless it’s a mumblecore movie and that’s all they do, as if drama were some kind of aesthetic sin. It seemed somehow very telling that this won the Best Picture Oscar in 1988, while just a few days after we watched it last week the tension-fest that is “The Hurt Locker” won Best Picture.
The other thing that struck me was how exotic the term “autism” still was in 1988. There’s a scene in “Rain Man” where a nurse in a provincial health centre doesn’t know what it means at all. Now it’s like the trendy mental-health problem, as Bruno says. A few days before we saw “Rain Man,” We also watched an old episode of “Oprah” about parents of autistic kids, and Oprah kept saying that this was the first time she’d ever done an episode about a condition that affects, at a conservative estimate, one in a hundred and fifty children - more than childhood leukaemia. (Someone told me the other day that they think it now affects one in 40 boys, and one in a 150 girls in this country.) You can see why it’s being talked about as if it were an epidemic, although no one knows if the rise in cases is an effect of better diagnostics (in the old days, a kid like R would just have been considered eccentric or “retarded”) or a real rise in the incidence of autism. Curious.
A few days ago, we had a visit from our Friendly Autism Expert or FAE, as we’ll call her here. (It also conveniently stands for Favourite Autism Expert). Not only has FAE had years of experience working with families and schools about how to coax interaction out of autistic children, but she also the mother of an autistic child herself, which means she’s incredibly empathetic about what we’re going through as parents.
She’s come to see R two or three times already. I think the first time was a year ago, around when T finally broke down and agreed with me something seemed wrong with R, who was about 20 months old at the time, because he wouldn’t acknowledge T shouting his name at him in the bath. FAE was there when the health visitor came for her official visit to discuss our concerns so that she, the health visitor that is, could write a report to our GP asking he refer R to the local specialist unit, in order to get the whole diagnosis thing rolling. So knowledgeable is FAE about autism, she practically dictated to the health visitor (a lovely woman, but a little out of her depth with all this) what she should write about the signs.
On that first visit, FAE coached us and D through what we needed to do to start getting R to interact with us more. Basically, it comes down to being hyper-observant about how he’s reacting to us, and learning how to get his attention and then build on that to parlay the attention up into an interactive game, or conversely learning how to spot when to lay off a bit and give him his space. She told us how to use keywords to encourage him to use them back. For instance, when we trap him between our legs so he can’t escape, we should say, “Trap!” so he knows this game is called Trap, a bit of play he used to find hilarious. If we have him trapped in a leg vice and have got him giggling away, then we’re supposed to pause for a moment to give him a chance to say, “Trap!” himself, to effectively ask us to continue the game.
Since we can’t be inside R’s mind, we’ll never know if following FAE’s instructions made the difference or if he simply decided off his own back to start talking and interacting more, but I feel it’s been instrumental in coaxing him out of his shell over this last year. Maybe he simply liked getting more attention after having felt neglected in the wake of his sister’s birth when he was 14 months. In any event, the child FAE met a few days ago, according to her, was markedly more interactive than the one she’d met a year ago. He made eye contact with her several times, came up to her and through gesture asked her to take a lid off a pen so he could scribble on some paper like she was doing, and was generally talking and expressing himself much more, even accounting for the fact that he’s older than he was when she last saw him. He even treated her to a rendition of “Twinkle Twinkle Little Star,” a song he’s really making his own, like Frank Sinatra with “My Way.”
After going over some strategies about how to handle R’s less amusing habits – like attacking the touch-sensitive bin in the kitchen and chucking hard objects like pool-table balls as far as he can whenever he gets a chance – FAE, R and I all went to his pre-school so FAE could give his one-on-one teacher N a lesson in how to maximise her own interaction with him. Poor N, and incredibly sweet and gentle soul who’s only ever worked with neurotypicals, had been feeling lost and confused about what she was supposed to do with this weird kid who races manically around the schoolroom like he was tweaking on crystal meth.
The school had been very taken aback by his behaviour in the first few weeks he started attending, and insisted they couldn’t cope with him unless he had a one-on-one teacher. If he was to start going more than one session a week, we had to get funding from the council, which involved a liaison teacher coming in to observe him one day. (We offered to pay for the extra teacher ourselves in the interim, but for some reason they resisted this.)
Fortunately, R was particularly badly behaved the day the liaison teacher came. Her report, bizarrely enough all written in the present tense, sounded like a script for an as-yet-unmade film about an autistic child: “R goes to the art table and throws another child’s half-finished project in the air. The other child cries, but R is off to the sand table where he begins throwing sand in the air, laughing maniacally.” I’m sort of paraphrasing here, because she didn’t actually use words like “maniacally,” but that was the gist. The school was horrified by the report and worried T and I would be upset by its “negative” tone. We just shrugged and said if it gets the funding in, they can call him the next Jon Venables as far as we’re concerned.
As it happens, we got a letter a day before FAE came saying they would fund a one-on-one teacher for two sessions a week, and that will continue to be N. So on the day I’m writing about, FAE watched N and R for an hour, while I watched them, and then she gave N feedback about how to approach scenarios she’d just seen. Like, for example, if R is playing with dollhouse furniture, opening and shutting a toy wardrobe over and over, N should pick up another toy with doors on it and open and shut them too so he could see she’s interested in what he’s interested in. From there, they could escalate it into a turn-taking game. I chipped in that it was like you’re single and suddenly going out with a guy who’s only interested in football, and even though it bores you rigid, the best way to land him is to feign interest in football.
N was incredibly grateful for the guidance from a proper professional expert. I could see that FAE knows exactly how teachers think, and her years of experience in working not just with people with ASC (Autistic Syndrome Condition – we’re not supposed to call it Autistic Syndrome Disorder anymore) but with parents and educators has made her incredibly competent at dealing with both sets of folk.
That night, a friend of ours came to stay and we all watched “Rain Man,” the daddy of all autism movies. I hadn’t seen it in years, in fact I think I may never have seen the whole thing all the way through.
First of all, I was touched that the copy we watched was from D, who went out and bought it herself because she wanted to know why I kept jokingly referring to it. (When R is being particularly withdrawn and in his own world, I call him Rain Man.) In return, I gave her our copies of “Temple Grandin” and “Adam” and look forward to hearing what she makes of them.
As a film about someone with ASC, “Rain Man” is better than I expected it to be, although it naturally rather romanticizes the Dustin Hoffman character as a sort of noble autistic savage savant. We watched a documentary (surprisingly boring) a few days ago about a pair of autistic savant twins, and it made the point that savantism is incredibly rare – there are only about a hundred known cases of people with ASC who can add up huge numbers in their heads automatically or tell you what day of the week any given date was or will be. I read once about a parent who’s also a doctor and has an autistic child. He said that it annoyed him that the two questions he’s always asked about his kid are first, does he think the MMR vaccine caused the syndrome and, secondly, does his kid have any amazing savant skills. (The answer is no in both cases.)
But still, from what I can gather based on my limited experience of having R and reading a shit load of books about autism, Hoffman nails the mannerisms bang on – the monotone voice, the shuffling, tippy-toed gait, the furtive quality poor eye contact creates. It’s just too corny the way he suddenly loses his inhibitions about body contact in order to let Valerie Golina dance with and then kiss him in an elevator. Also, his character copes rather better than I would expect with his routine being disrupted when he’s taken out of the institution he’s been living in for 30 years or whatever it’s been. He insists on having lime-flavoured jello every Tuesday night, but if that were R he’d have thrown a fit if the jello the Tom Cruise character managed to provide didn’t taste the exactlyn the same as it always tastes. But what the hell, it’s a Hollywood movie and the character couldn’t be too weird or annoying lest it put the audience off.
Strictly as a movie, we were amazed at how slowly its action moved forward, and how baggy the script was compared to the wham-bam of current movies which can’t trust an audience to just sit patiently and watch two people interacting, unless it’s a mumblecore movie and that’s all they do, as if drama were some kind of aesthetic sin. It seemed somehow very telling that this won the Best Picture Oscar in 1988, while just a few days after we watched it last week the tension-fest that is “The Hurt Locker” won Best Picture.
The other thing that struck me was how exotic the term “autism” still was in 1988. There’s a scene in “Rain Man” where a nurse in a provincial health centre doesn’t know what it means at all. Now it’s like the trendy mental-health problem, as Bruno says. A few days before we saw “Rain Man,” We also watched an old episode of “Oprah” about parents of autistic kids, and Oprah kept saying that this was the first time she’d ever done an episode about a condition that affects, at a conservative estimate, one in a hundred and fifty children - more than childhood leukaemia. (Someone told me the other day that they think it now affects one in 40 boys, and one in a 150 girls in this country.) You can see why it’s being talked about as if it were an epidemic, although no one knows if the rise in cases is an effect of better diagnostics (in the old days, a kid like R would just have been considered eccentric or “retarded”) or a real rise in the incidence of autism. Curious.
Thursday 4 March 2010
Late-night update
4 March 2010
Something amazing happened tonight. I'd put E and R to bed, and as per usual, after reading him a book ("Curious George" for the first time) and turning out the light, I heard him start up his nightly babble in the dark, giggling, chattering, singing a verse or two of "The Wheels on the Bus" and the "Alphabet Song" (which in his version includes some experimental letters, not yet represented in dictionaries). There was a sudden cry of alarm which usually means he's done a poo and wants a change.
I went in and found he had managed to wiggle out of his Grobag and indeed smelled a bit whiffy. "Nappy?" I asked, somewhat rhetorically. "I want nappy change," he said back, looking me in the eye. He just generated his own sentence, and without prompting, in order to express a need. He might as well have recited the Gettysburg Address, I was so knocked out. I cheered with delight and covered him in kisses. He looked very chuffed with himself. Maybe we'll be able to start potty training before he starts college.
Something amazing happened tonight. I'd put E and R to bed, and as per usual, after reading him a book ("Curious George" for the first time) and turning out the light, I heard him start up his nightly babble in the dark, giggling, chattering, singing a verse or two of "The Wheels on the Bus" and the "Alphabet Song" (which in his version includes some experimental letters, not yet represented in dictionaries). There was a sudden cry of alarm which usually means he's done a poo and wants a change.
I went in and found he had managed to wiggle out of his Grobag and indeed smelled a bit whiffy. "Nappy?" I asked, somewhat rhetorically. "I want nappy change," he said back, looking me in the eye. He just generated his own sentence, and without prompting, in order to express a need. He might as well have recited the Gettysburg Address, I was so knocked out. I cheered with delight and covered him in kisses. He looked very chuffed with himself. Maybe we'll be able to start potty training before he starts college.
The Neurotypical Girl Next Door
4 March 2010
Our home-programmed autism film festival continues. The other night, T and I watched “Adam,” which I’d seen already but T hadn’t, in which Hugh Dancy plays a guy with Asperger’s Syndrome, or “aspie” as he calls himself in the movie. Both T and I welled up a little at key points, but it didn’t provoke the full-on saline soaking we got from “Temple Grandin” a few nights before, mostly because it’s not that good a film. The script is too schematic, too jaggedly assembled, like it started off as someone’s personal passion project and then got rewritten three times too many after notes came back from Fox Searchlight.
Basically, the title character (Dancy) falls in love with a pretty neurotypical neighbour girl (Rose Byrne) named Beth after some meet-cute stuff, but things go wrong when he’s insufficiently supportive of her troubles when her shit of a father gets convicted for fraud. The plot point that Adam never lies is planted early on, apparently one of the defining characteristics of people with ASD because they’re so literal-minded. Then, in order to have some kind of drama-generating conflict for the third act, they have him freak out when he finds out she lied to him. Because it’s a little indie-movie with minor-but-not-totally-negligible stars, it’s allowed to have the main characters fail to sustain their relationship at the end, but they still Grow Because Of Their Experience. The dripping soundtrack, all little-known singer-songwriters plucking guitars and twittering semi-archly about hipster shit, is particularly off-putting for us.
Watching through the prism of parents of a kid with autism, T and I have interestingly divergent reactions. During the early scenes, where you see Adam coping with life alone after his father has died, eating the exact same food every day, going to work as an electronic engineer, having just the one friend (a kindly, salty-tongued older black man, of course), I think, here’s a portrait of someone with the condition who’s coping pretty well. T thinks exactly the opposite. He sees someone who’s lonely, adrift, not high functioning at all.
When it’s over, we talk about our fears for R’s future. Will E always have to look after her older brother? Will he ever have a job, get married, make friends? T says he can see an almost-worst-case scenario where R is living at 40 in a sheltered housing unit, being visited once a week by a social worker to make sure he’s not eating food past its sell-by date. If we make enough money to leave him cared for, then – whoopee – he could be living in a slightly larger, privately owned flat somewhere while a paid-for carer comes to see him three times a week to make sure he’s not eating food past its sell-by date.
I worry a lot about how R’s condition will affect E. At the moment, she totally worships her big brother. When he’s not around, because he’s still asleep in the morning, or out for the afternoon visiting his speech therapist, she wanders around the playroom looking for him, calling for him like a lost sheep. When she tries to give him things – her dummy, a book about tractors she thinks he’d like to read, her juice – he usually ignores her. Even the fact that he usually hits or knocks her over once a day doesn’t seem to put her off him. She loves him desperately and gets almost nothing back. I fret this will set some sort of pattern for life, with her ending up falling in love with emotionally unavailable shits, like I used to. Not that R’s a shit or anything – I just mean she could get stuck thinking love can only go one way.
T and other friends try to reassure me that sibling relationships don’t usually serve as models for the romantic attachments we make as adults, but I’m not convinced. Even if she copes really well with having R as a brother, I worry she’ll miss out on things and be, in some ways, like an only child. I vaguely consider having one more child, but that’s too close to the “heir and a spare” model. And anyway, research seems to suggest that the chances of having another autistic child increase as you get older, especially if it’s a boy. Even if we have another neurotypical kid, would E totally bond with the second child and leave R left out on his own, literally spinning his wheels in a corner?
On the upside, we’re starting to notice that she’s having a positive influence on him. He sees her trying new foods and has a go, even if he spits out the first mouthful. If he sees her having fun playing a game with us adults, he sometimes wants to join in too. He rolls his Matchbox car to her across the breakfast table, singsonging, “Roll the car to E!”, knowing she’ll roll it back to him. Okay, it’s not like they’re playing chess together, but it’s a start.
Our home-programmed autism film festival continues. The other night, T and I watched “Adam,” which I’d seen already but T hadn’t, in which Hugh Dancy plays a guy with Asperger’s Syndrome, or “aspie” as he calls himself in the movie. Both T and I welled up a little at key points, but it didn’t provoke the full-on saline soaking we got from “Temple Grandin” a few nights before, mostly because it’s not that good a film. The script is too schematic, too jaggedly assembled, like it started off as someone’s personal passion project and then got rewritten three times too many after notes came back from Fox Searchlight.
Basically, the title character (Dancy) falls in love with a pretty neurotypical neighbour girl (Rose Byrne) named Beth after some meet-cute stuff, but things go wrong when he’s insufficiently supportive of her troubles when her shit of a father gets convicted for fraud. The plot point that Adam never lies is planted early on, apparently one of the defining characteristics of people with ASD because they’re so literal-minded. Then, in order to have some kind of drama-generating conflict for the third act, they have him freak out when he finds out she lied to him. Because it’s a little indie-movie with minor-but-not-totally-negligible stars, it’s allowed to have the main characters fail to sustain their relationship at the end, but they still Grow Because Of Their Experience. The dripping soundtrack, all little-known singer-songwriters plucking guitars and twittering semi-archly about hipster shit, is particularly off-putting for us.
Watching through the prism of parents of a kid with autism, T and I have interestingly divergent reactions. During the early scenes, where you see Adam coping with life alone after his father has died, eating the exact same food every day, going to work as an electronic engineer, having just the one friend (a kindly, salty-tongued older black man, of course), I think, here’s a portrait of someone with the condition who’s coping pretty well. T thinks exactly the opposite. He sees someone who’s lonely, adrift, not high functioning at all.
When it’s over, we talk about our fears for R’s future. Will E always have to look after her older brother? Will he ever have a job, get married, make friends? T says he can see an almost-worst-case scenario where R is living at 40 in a sheltered housing unit, being visited once a week by a social worker to make sure he’s not eating food past its sell-by date. If we make enough money to leave him cared for, then – whoopee – he could be living in a slightly larger, privately owned flat somewhere while a paid-for carer comes to see him three times a week to make sure he’s not eating food past its sell-by date.
I worry a lot about how R’s condition will affect E. At the moment, she totally worships her big brother. When he’s not around, because he’s still asleep in the morning, or out for the afternoon visiting his speech therapist, she wanders around the playroom looking for him, calling for him like a lost sheep. When she tries to give him things – her dummy, a book about tractors she thinks he’d like to read, her juice – he usually ignores her. Even the fact that he usually hits or knocks her over once a day doesn’t seem to put her off him. She loves him desperately and gets almost nothing back. I fret this will set some sort of pattern for life, with her ending up falling in love with emotionally unavailable shits, like I used to. Not that R’s a shit or anything – I just mean she could get stuck thinking love can only go one way.
T and other friends try to reassure me that sibling relationships don’t usually serve as models for the romantic attachments we make as adults, but I’m not convinced. Even if she copes really well with having R as a brother, I worry she’ll miss out on things and be, in some ways, like an only child. I vaguely consider having one more child, but that’s too close to the “heir and a spare” model. And anyway, research seems to suggest that the chances of having another autistic child increase as you get older, especially if it’s a boy. Even if we have another neurotypical kid, would E totally bond with the second child and leave R left out on his own, literally spinning his wheels in a corner?
On the upside, we’re starting to notice that she’s having a positive influence on him. He sees her trying new foods and has a go, even if he spits out the first mouthful. If he sees her having fun playing a game with us adults, he sometimes wants to join in too. He rolls his Matchbox car to her across the breakfast table, singsonging, “Roll the car to E!”, knowing she’ll roll it back to him. Okay, it’s not like they’re playing chess together, but it’s a start.
Tuesday 2 March 2010
Green Ball... Red Ball...
2 March 2010
Yesterday, R went to see his speech therapist. As soon as I say, “Let’s go see G,” he starts chanting one of her mantras: “Green ball… red ball… which one? You choose?” which she always asks him when they play with a ball maze. He still hasn’t quite mastered the choosing part, maybe because in all honesty nothing particularly different happens in the maze if you drop a green or a red ball in it. They all go down the maze the same way, so perhaps R can’t see the point in choosing.
At the NHS centre where speech therapy happens, he can’t wait to get through the gate, and without prompting asks G to open the door for him. So far so good. But then it turns out G has to do a test on him at the request of Dr L in preparation for his upcoming assessment, to see how good his comprehension is. She lays out a selection of eight toys – a teddy, a doll, a chair and table, and so on – along the table and asks him to do things like “sit teddy on the chair,” or “make dolly touch the table.” She asks me not to say anything to prompt him, and I sit there squirming, willing him to do well on his test, ever the helicopter mother.
Some requests he gets straight away, but then he starts to slow down. G, a cozy maternal middle-aged woman with a voice like golden syrup, starts putting dashes instead of ticks down on her form when he doesn’t respond. This isn’t going well. R gets bored and asks for her tractor. He doesn’t want to talk much today, and won’t respond when we feed him his lines like “Pull cord!” “Take off lid!” or “I want bubbles!”
We’d been doing really well with the “I want…” stuff before I went away on a business trip, getting him to express his desires with three words (“I want ham!”) instead of just saying “ham!” or “cheese!” or, worse still, grunting in frustration. G and I conjecture whether he’s been upset that I’ve been away, or upset that she’s been away for a couple of weeks. Trying to figure out what’s going on in R’s head is the number one occupation for everyone around him, like we’re all Kremlinologists during the Cold War, trying to divine what Brezhnev’s up to with troop movements on the NATO border. Will he invade? Is he just bluffing? Is he going to pull out of Afghanistan?
When we do get to the ball maze, he imitates G by almost dropping the red ball into the blue hole, then saying no and hovering it over the green hole, then saying no, and then again with the yellow hole before slamming it down the red hole with satisfaction, as if he’s set off a bomb. This is a good sign, G tells me. Kids who do that pretending to drop the ball imitation usually ended doing well. Hooray!
At bedtime, he doesn’t want me to stop reading stories. He lays his head on my shoulder and sits stock still while I read “Tatty McTat,” a new one he doesn’t know that well, as well as “Bear on a Bike,” an old favourite, in which a bear takes a variety of vehicles (bike, boat, carriage, rocket, etc.) to reach a series of exciting places (forest, island, the moon). His favourite is the rocket.
Yesterday, R went to see his speech therapist. As soon as I say, “Let’s go see G,” he starts chanting one of her mantras: “Green ball… red ball… which one? You choose?” which she always asks him when they play with a ball maze. He still hasn’t quite mastered the choosing part, maybe because in all honesty nothing particularly different happens in the maze if you drop a green or a red ball in it. They all go down the maze the same way, so perhaps R can’t see the point in choosing.
At the NHS centre where speech therapy happens, he can’t wait to get through the gate, and without prompting asks G to open the door for him. So far so good. But then it turns out G has to do a test on him at the request of Dr L in preparation for his upcoming assessment, to see how good his comprehension is. She lays out a selection of eight toys – a teddy, a doll, a chair and table, and so on – along the table and asks him to do things like “sit teddy on the chair,” or “make dolly touch the table.” She asks me not to say anything to prompt him, and I sit there squirming, willing him to do well on his test, ever the helicopter mother.
Some requests he gets straight away, but then he starts to slow down. G, a cozy maternal middle-aged woman with a voice like golden syrup, starts putting dashes instead of ticks down on her form when he doesn’t respond. This isn’t going well. R gets bored and asks for her tractor. He doesn’t want to talk much today, and won’t respond when we feed him his lines like “Pull cord!” “Take off lid!” or “I want bubbles!”
We’d been doing really well with the “I want…” stuff before I went away on a business trip, getting him to express his desires with three words (“I want ham!”) instead of just saying “ham!” or “cheese!” or, worse still, grunting in frustration. G and I conjecture whether he’s been upset that I’ve been away, or upset that she’s been away for a couple of weeks. Trying to figure out what’s going on in R’s head is the number one occupation for everyone around him, like we’re all Kremlinologists during the Cold War, trying to divine what Brezhnev’s up to with troop movements on the NATO border. Will he invade? Is he just bluffing? Is he going to pull out of Afghanistan?
When we do get to the ball maze, he imitates G by almost dropping the red ball into the blue hole, then saying no and hovering it over the green hole, then saying no, and then again with the yellow hole before slamming it down the red hole with satisfaction, as if he’s set off a bomb. This is a good sign, G tells me. Kids who do that pretending to drop the ball imitation usually ended doing well. Hooray!
At bedtime, he doesn’t want me to stop reading stories. He lays his head on my shoulder and sits stock still while I read “Tatty McTat,” a new one he doesn’t know that well, as well as “Bear on a Bike,” an old favourite, in which a bear takes a variety of vehicles (bike, boat, carriage, rocket, etc.) to reach a series of exciting places (forest, island, the moon). His favourite is the rocket.
Monday 1 March 2010
Hello, R!
1 March 2010
R has good days and bad days. At the moment, we’re going through a run of not-so-hot days. He’s more in his own world than usual, staring off into the distance, not responding to his name, “good morning,” “Hello, R!” or “Don’t hit your sister!” He works through his drawer of cars one by one, laying his head on the ground so he can watch the wheels going round as he pushes them along. You have to drag him physically away to play with anything else, but he usually will comply for a while. He’s really very sweet-natured that way.
His latest joy is playing with his penis. Aware now that we’ll try to stop him from doing this, he hides behind the sofa to rub it, although it’s not shame or furtiveness, just a practical method of getting his jollies where we can’t see him. Because he can reach inside his Grobag at night to play with it, he manoeuvres it out of its sheaf of nappy and pyjama bottoms and massages contentedly away at it. For a week now, everything has been soaked through with urine in the morning. T suggests I find pyjamas on the internet that have drawstring closures, to keep him from getting it at his willy, but part of me wonders if we shouldn’t let the poor sod have his fun. We don’t want to give him a complex about it, do we? D, our nanny, has tried telling him like a Victorian governess that he’ll go blind, half-joking because she knows as well as I do that he doesn’t understand what she’s saying. I’m not sure if I approve of this approach, however jocular, but as per usual I’m too timid to suggest she shouldn't say that. I want D to be happy because I know taking care of R is a tough gig.
At least he’s responding to music very well at the moment. We sing “The Wheels On the Bus” over breakfast and he makes eye contact, smiles, then positively grins with pleasure as he windmills his hand around for the “round and round” part, giving it wellie at the top of his voice. I get enormous pleasure when I can occasionally coax him to sing along to “Close to You,” which I used to sing to him every night when he was littler, drinking his bedtime milk. He’s mostly in tune, or at least as off tune as my own singing. I wonder if he had a mother who could sing better, he’d have perfect pitch. At the Baby Music classes he goes to on a Monday, he’s the only kid who really sings along. T has taken him there today for a change, which has carved a space for me to write this. I’m glad because I know it will give T a chance to feel pride seeing how well R does some things, sometimes even better than other kids.
Last night while he and E were asleep, T and I kicked off our home autism film festival with “Temple Grandin,” the new biopic of the famous autistic veterinary scientist, and cried steadily all the way through it. I’d been looking forward to seeing it ever since someone I knew posted a link to the movie’s trailer on Facebook with a mocking comment. Soon, lots of people, including some good friends of ours, had joined in the ridicule. I felt strangely hurt and protective of the movie because round our house, Temple Grandin is a secular saint, the woman who overcame her syndrome’s worst problems did something useful with her life.
The trailer was cheesy, the way trailers are, full of shots of Claire Danes as Grandin talking in that stilted way the real Grandin talks (a bang on impersonation, as it happens). The people on Facebook sniggered about “doing the full retard” à la “Tropic Thunder,” and Jodie Foster’s “blowin’ in the wiii-nnnd” autistic speil in “Nell.” There’s something embarrassing about seeing actors play autistics and mentally handicapped people, the naked neediness of thespians fishing for awards by playing damaged people. In the old days I would have sniggered along with them, but now it’s all too close to the bone. Now I all I can hear in their sarky comments is the sound of class bullies in the future teasing R when he talks funny in class.
The movie was better than the trailer suggested. Touching, but never too sentimental, it used a similar device to the one in “A Beautiful Mind” to show how Temple thinks in pictures, but done with a light touch. It was even nice to see the film is as much about her work with animals it is about her autism. Sure, it felt a little made-for-TV but in a good honest way.
The bit that really got to me was a scene showing Temple’s mother Eustacia (Julia Ormond, nice to see her back in work) sitting on the stairs with the young actress playing Temple aged four or so (played by an unknown child actor, enjoying an easy gig since all she has to do is stare into the middle distance). Eustacia is showing Temple flash cards of a dog and a cat, and sounding out the words slowly, trying to get Temple to say the word back, but she keeps turning her head away to stare at the pretty chandelier. Defeated, Eustacia gives up. “Mommy needs a five-minute break now,” she says. And a cigarette, I think, projecting.
That was me a year ago. There had been the odd words. I think R’s first, around five months when I was feeding him something, was “no,” but then after that it was just sounds, random, vaguely comprehensible babble that we “interpreted up” as words. We were in California visiting my family and T had bought R a big double handful of Matchbox cars from the thrift shop to play with, which he loved. At every meal, we let him play with the cars, and I would point to them over and over again saying, “car,” “car,” “CAR!” Eventually, he finally looked me straight in the eyes one day and said the word back: “car.” That was really his first word, aged 20 months.
I just know that while watching the movie that T and I are thinking the same thought: Temple Grandin didn’t speak until she was four, and R is already talking now, at two and three quarters! He won’t be so bad! There’s hope! I wonder if every parent of an autistic child makes these silent calculations when they hear about another autistic kid, holding up mental yardstick in their minds against their own child’s development. We feel luckier than the ones who have older kids who are still not talking, or hate to be touched (R, thank goodness, loves to be hugged). We envy the ones who seem to have higher-functioning kids, who might someday “pass” for normal. Watching neurotypical kids doing neurotypical shit, even my own daughter E, makes my heart break for R.
R hasn’t been officially diagnosed yet. When people ask, we tell him that it’s still pending, although he has already been to see the local authority’s special-needs unit that does the diagnosing. He had a big assessment day back in November, with a consultant psychiatrist who asked us questions for three hours while two psychologists and a speech therapist watched him play. T and I thought this was a preliminary meeting, not the Big One, so we were relaxed as we responded to the questions, our answers slightly different sometimes. They thought we were taking it all very well, when really we were just confused about the date and hadn’t taken in that this particular meeting could change the course of his life.
At the end, they decided they couldn’t give us a diagnosis and deferred for another six months, which means his next assessment is in four weeks. What seems clear is he’s not quite neurotypical, the term they use to describe what the rest of the world calls normal. Yes, they said, he’s showing some signs of autism (lack of eye contact, impaired verbal development, lack of interest in social interaction), but there are many signs he’s not showing -- yet. He’s not very compulsive, for instance, or obsessed with things being in a certain order or routines being followed. The consultant asks, for example, if he’s ever upset by the way we drive. My driving would upset anyone, but I know immediately what she means having read the misery memoir “A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces” by Christopher and Nicola Stevens in which a severely autistic boy freaks out and tantrums every time his parents turn left in their car, forcing them to spiral round the block to get home on every journey. R is just happy to be in the car, wherever we’re going. Cars are very much R’s thing.
R has good days and bad days. At the moment, we’re going through a run of not-so-hot days. He’s more in his own world than usual, staring off into the distance, not responding to his name, “good morning,” “Hello, R!” or “Don’t hit your sister!” He works through his drawer of cars one by one, laying his head on the ground so he can watch the wheels going round as he pushes them along. You have to drag him physically away to play with anything else, but he usually will comply for a while. He’s really very sweet-natured that way.
His latest joy is playing with his penis. Aware now that we’ll try to stop him from doing this, he hides behind the sofa to rub it, although it’s not shame or furtiveness, just a practical method of getting his jollies where we can’t see him. Because he can reach inside his Grobag at night to play with it, he manoeuvres it out of its sheaf of nappy and pyjama bottoms and massages contentedly away at it. For a week now, everything has been soaked through with urine in the morning. T suggests I find pyjamas on the internet that have drawstring closures, to keep him from getting it at his willy, but part of me wonders if we shouldn’t let the poor sod have his fun. We don’t want to give him a complex about it, do we? D, our nanny, has tried telling him like a Victorian governess that he’ll go blind, half-joking because she knows as well as I do that he doesn’t understand what she’s saying. I’m not sure if I approve of this approach, however jocular, but as per usual I’m too timid to suggest she shouldn't say that. I want D to be happy because I know taking care of R is a tough gig.
At least he’s responding to music very well at the moment. We sing “The Wheels On the Bus” over breakfast and he makes eye contact, smiles, then positively grins with pleasure as he windmills his hand around for the “round and round” part, giving it wellie at the top of his voice. I get enormous pleasure when I can occasionally coax him to sing along to “Close to You,” which I used to sing to him every night when he was littler, drinking his bedtime milk. He’s mostly in tune, or at least as off tune as my own singing. I wonder if he had a mother who could sing better, he’d have perfect pitch. At the Baby Music classes he goes to on a Monday, he’s the only kid who really sings along. T has taken him there today for a change, which has carved a space for me to write this. I’m glad because I know it will give T a chance to feel pride seeing how well R does some things, sometimes even better than other kids.
Last night while he and E were asleep, T and I kicked off our home autism film festival with “Temple Grandin,” the new biopic of the famous autistic veterinary scientist, and cried steadily all the way through it. I’d been looking forward to seeing it ever since someone I knew posted a link to the movie’s trailer on Facebook with a mocking comment. Soon, lots of people, including some good friends of ours, had joined in the ridicule. I felt strangely hurt and protective of the movie because round our house, Temple Grandin is a secular saint, the woman who overcame her syndrome’s worst problems did something useful with her life.
The trailer was cheesy, the way trailers are, full of shots of Claire Danes as Grandin talking in that stilted way the real Grandin talks (a bang on impersonation, as it happens). The people on Facebook sniggered about “doing the full retard” à la “Tropic Thunder,” and Jodie Foster’s “blowin’ in the wiii-nnnd” autistic speil in “Nell.” There’s something embarrassing about seeing actors play autistics and mentally handicapped people, the naked neediness of thespians fishing for awards by playing damaged people. In the old days I would have sniggered along with them, but now it’s all too close to the bone. Now I all I can hear in their sarky comments is the sound of class bullies in the future teasing R when he talks funny in class.
The movie was better than the trailer suggested. Touching, but never too sentimental, it used a similar device to the one in “A Beautiful Mind” to show how Temple thinks in pictures, but done with a light touch. It was even nice to see the film is as much about her work with animals it is about her autism. Sure, it felt a little made-for-TV but in a good honest way.
The bit that really got to me was a scene showing Temple’s mother Eustacia (Julia Ormond, nice to see her back in work) sitting on the stairs with the young actress playing Temple aged four or so (played by an unknown child actor, enjoying an easy gig since all she has to do is stare into the middle distance). Eustacia is showing Temple flash cards of a dog and a cat, and sounding out the words slowly, trying to get Temple to say the word back, but she keeps turning her head away to stare at the pretty chandelier. Defeated, Eustacia gives up. “Mommy needs a five-minute break now,” she says. And a cigarette, I think, projecting.
That was me a year ago. There had been the odd words. I think R’s first, around five months when I was feeding him something, was “no,” but then after that it was just sounds, random, vaguely comprehensible babble that we “interpreted up” as words. We were in California visiting my family and T had bought R a big double handful of Matchbox cars from the thrift shop to play with, which he loved. At every meal, we let him play with the cars, and I would point to them over and over again saying, “car,” “car,” “CAR!” Eventually, he finally looked me straight in the eyes one day and said the word back: “car.” That was really his first word, aged 20 months.
I just know that while watching the movie that T and I are thinking the same thought: Temple Grandin didn’t speak until she was four, and R is already talking now, at two and three quarters! He won’t be so bad! There’s hope! I wonder if every parent of an autistic child makes these silent calculations when they hear about another autistic kid, holding up mental yardstick in their minds against their own child’s development. We feel luckier than the ones who have older kids who are still not talking, or hate to be touched (R, thank goodness, loves to be hugged). We envy the ones who seem to have higher-functioning kids, who might someday “pass” for normal. Watching neurotypical kids doing neurotypical shit, even my own daughter E, makes my heart break for R.
R hasn’t been officially diagnosed yet. When people ask, we tell him that it’s still pending, although he has already been to see the local authority’s special-needs unit that does the diagnosing. He had a big assessment day back in November, with a consultant psychiatrist who asked us questions for three hours while two psychologists and a speech therapist watched him play. T and I thought this was a preliminary meeting, not the Big One, so we were relaxed as we responded to the questions, our answers slightly different sometimes. They thought we were taking it all very well, when really we were just confused about the date and hadn’t taken in that this particular meeting could change the course of his life.
At the end, they decided they couldn’t give us a diagnosis and deferred for another six months, which means his next assessment is in four weeks. What seems clear is he’s not quite neurotypical, the term they use to describe what the rest of the world calls normal. Yes, they said, he’s showing some signs of autism (lack of eye contact, impaired verbal development, lack of interest in social interaction), but there are many signs he’s not showing -- yet. He’s not very compulsive, for instance, or obsessed with things being in a certain order or routines being followed. The consultant asks, for example, if he’s ever upset by the way we drive. My driving would upset anyone, but I know immediately what she means having read the misery memoir “A Real Boy: How Autism Shattered Our Lives - and Made a Family from the Pieces” by Christopher and Nicola Stevens in which a severely autistic boy freaks out and tantrums every time his parents turn left in their car, forcing them to spiral round the block to get home on every journey. R is just happy to be in the car, wherever we’re going. Cars are very much R’s thing.
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