I reckon R wasn’t even a year old yet when I first noticed something was… not exactly wrong, but different. He didn’t seem to be responding to his name the way he should do. His powers of concentration on favourite toys and pretty sparkly things were preternaturally strong. The far-away look in his wide-set, marine blue eyes, which only rarely look at you, put me in mind of fairy child changelings, creatures from other worlds with half a mind to go back there as soon as they can book the next flight.
When R was about 11-months-old, a friend of a friend came over with her little boy A. The two kids were only three weeks apart in age, but little A was already talking, feeding himself, and on the verge of walking, and R wasn’t even close. They develop at different rates, the other mother reassured me. She’s not just a schoolteacher and therefore understands kids but she’s also a better mother, I thought to myself. Maybe R is a bit thick I thought. Maybe he has Asperger’s or autism, I said aloud. Nonsense, said A’s perfect schoolteacher mother. I’ve seen autistic kids and he’s nothing like one of them. I put the thought to bed for another few months.
T would have no truck with the concept anyway. They just develop at different rates, he said, echoing our GP, the health visitor, his parents, my parents, and everyone else who met or knew of R. And look at how good he is at using a walker, T pointed out. Little A was terrified of the thing, and R can do three-point turns in it already!
So here we are, nearly two years later, and we finally have an official piece of paper with NHS letterhead and everything that says yes, R has an Autistic Spectrum Disorder. I have an overwhelming urge to shout “I told you!” at someone, but the words taste like ash in my mouth.
I feel strangely desolate about getting the diagnosis. We knew it was coming. We urged them to get on with it. I thought I, perhaps more than T or anyone else, was psychologically prepared for it. When Dr L finally said it, after Dr M had finished going through the ADOS assessment’s findings, I felt nothing but relief at first. And then minutes later I was crying and asking them if they could reassure me again (because I already knew the answer) that it wasn’t because I’d not taken good enough care of myself when he was in the womb. I admit it – I smoked some cigarettes, I drank some wine, I went to film festivals and got myself incredibly stressed. No, she reassured me. It’s not my fault. But if still feels like it is.
T, on the other hand, seemed to take it all in his stride. I think he went through the grieving more thoroughly last year, when the realization that R probably had some kind of autism drove T to give up drink for good so he could deal with it better. The other night T said he’s glad now that the next time someone says, Are you sure? He’s still very young, i.e. please don’t tell me there’s something wrong with your child because I don’t know how to handle the pity for you and I don’t want to know it, he can say, yes, we are sure now.
Friday 30 April 2010
Thursday 22 April 2010
The Octopus and the Box
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.
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.
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.
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