0 comment Monday, May 19, 2014 | admin
My somewhat idyllic day's peace yesterday was broken at 10:15pm with a rather angry call from Ex. Now, I don't really want to turn my blog into an Ex-bashing space, but I am going to use this scenario as a perfect example of where advocacy with regard to my son comes in - this is a conversation I've had with many a school, childminder, nursery, or well-meaning friends.
Sprog was at his father's house after a very busy day, and apparently by ex's account had spent a half hour obsessing about a watch that Ex had given him; he didn't come home with it the last time he had been round, and he said he had left it at his dad's. So, at 9:30pm, he was distressed that he couldn't find it and ransacked the house, getting more and more upset. The Ex therefore assumed it was because I had told sprog the watch was at his father's house, and therefore sprog had obsessed upon it and torn the house apart. I was therefore instructed in no uncertain terms to never "make a fuss" about things being over at his place until I call him first and check. A bit more abuse down the wire and since I was already half asleep, I hung up!
My own peace and "weekend break" was now shattered, and after a few muttered abuses of my own, I found myself staring up at the ceiling and putting the pieces together, as this is something I've dealt with on a regular basis with child.
Autism has a very Jekyll/Hyde personality: when an autistic person is in "guest mode" in a new situation, they can often be exceedingly charming. My son charms the pants of everyone he meets, and quite often people therefore tell me "Oh, he's not THAT bad" as if my own experiences were somehow overwrought or made up. However, that is my son in "guest mode". Once he gets comfortable with a person or a place, he reverts to his usual behaviour - and then these same people are shocked and in a panic, wondering what has happened (again, usually thinking there must be some abuse at home causing the change) and the frantic phonecalls begin.
The explanation is, once you know the signs, rather simple; the honeymoon period is over. Now that sprog is comfortable in his surroundings, it is like a second home. It is familiar and therefore should be just like it is at home. Bedtimes, meal times, coping mechanisms, everything has to be like it is here. And if it isn't, he goes into a meltdown (or, as happened last night, he fixates on something just like he did during the fire scare).
The mistake is that people focus on the meltdown - and granted, his meltdowns can be very violent and catch one quite off-guard if one has never seen it before - and don't think much about the behaviour leading up to it. Now, sprog had a late start to the day due to the trains, the whole trainride back to Ex's house was disruptive as well. He refused breakfast and was probably already quite hungry. He went to ex's house and now it seems that is officially a familiar place, and to sprog's mind should follow the same rules. Unfortunately, Ex has his own parenting style, which quite often flies directly opposed to my own - meal times are rarely set and often come only when sprog's behaviour deteriorates, the day is packed with happenings with very little downtime, and his bedtimes are very late - because Ex loves his lie-ins and the longer he keeps sprog up, the longer he'll sleep in.
This would be fine with a mainstream child - it might make back-to-school routines a bit problematic but not overly so. However, with a child like mine, it's a disaster; with so much going on and so many changes to his usual routine, it's no surprise that his mind overloaded at 9:30pm (well over two hours past sprog's usual bedtime) and he fixated upon a trivial thing and couldn't get off it. As far as the meltdown itself goes, it's been so long since Ex has been subjected to such a thing as his visits with his son are rather brief that I imagine he was just unable to cope.
It's important to note that Ex is also on the spectrum; high-functioning or Asperger's. So he also has his own fixed regimen and routine - and him attempting to adapt to sprog's routine is rarely successful. I had to play referee many times between their arguments, much as I imagine Ex's mum had to do when it came to Ex himself and his own dad. So, communication with Ex is already frought with difficulty as any suggestion to adapting his routine is taken as a direct and personal attack upon his very world. There is no way Ex would get up with sprog at 4, no way that he would allow a light on in his room (even a tiny pinpoint of light is enough to keep him from sleeping), no way that he'll allow sprog to eat at exactly the same time if he himself wasn't hungry. To his mind sprog just "has to learn to cope". Dealing with two incredibly inflexible people is a challenge, and so I have to be very careful how I word things like this to Ex - I know his opinion of my advice is that I'm just a nag.
But I've had to have these exact same conversations with many different groups of people for the past four years, and so I've got it down pretty much to a science:
Don't blame them for the meltdown, even if their own behaviour was a direct result of the trigger. A late and chaotic trainride with no breakfast, a trip to the zoo, familiarity that isn't and a ridiculously late bedtime was just asking for trouble. I know it; but I have to fight down my own anger and irritation at such behaviour, because people who feel they're on the defensive won't listen to solutions. I've called a much calmer ex this morning and explained to him that it wasn't the watch, it was the Jekyll/Hyde syndrome and the routine break. Ex has agreed the point, and the watch was secondary - it is definitely lost however and this was more than likely due to it being on a rather naff elastic band. Ex will get a new one which won't be so easily loosened, so that crisis sorted.
Get everyone on the same page. I have very fixed routines for sprog's mealtimes, for his bedtimes, and rituals for each. He knows what these are, and while they can differ in various scenarios (such as at school) I do try and keep these the same. Mealtimes cannot vary quite so much, and bedtimes should only be about an hour off. Will he push his limits? Of course! But after the routine becomes established, he's grateful for its presence. Ex is aware of sprog's bedtime but he couldn't get sprog to settle, and sprog pushed his limit by saying he always got a video after his bath (which isn't true - he's a sneaky little bugger!). However, the wrapping sprog in a blanket was news to him and also the new "calm down" steps that I take to get sprog to get out of meltdown-space is something Ex will have to learn.
Give him the safe space and the time to use it. There are going to be triggers and meltdowns regardless of everything you do - the only thing you can do is minimalise their frequency, but they'll never disappear entirely. Safe space can be as simple as a pop-up tent strung with lights or as elaborate as a sensory room with all the fancy trimmings. But it is a VITAL space for people with autism to have. The school has had to create a quiet room for sprog (which sadly is completely empty), and I'm still working on getting sprog's room sorted as a sensory space, but it's necessary for him to have that safe-chill area in order to cope and process the day at his own pace, in his own way. Ex already acknowledged this and told me today he has plans to create a sensory tunnel over sprog's bed space - this is a huge deal considering Ex's issue with lights or noise or anything in his room, and I'm pleasantly surprised and grateful he'd even consider it. He will also be building cabinet space that can be locked to keep sprog from tipping out the contents of Ex's stuff all over the room; out-of-sight, out-of-mind.Stay vigilant. I find myself learning that, just when I've taken care of one issue, two more issues crop up. You can't rest on your accomplishments, you have to stay apprised of how a child with autism is developing - new information is learned, new skills need to come into play to deal with it. Autistic children do learn and grow, they're not frozen in amber and so just because one coping mechanism worked when the child was two does not mean it will work when they're four. This is maybe the most frustrating part of things, but you have to not get too comfortable with your child-rearing, and you need to be able to adapt. This is probably Ex's weakest point - change is as alarming to him as it is to sprog, but I think he has had time to think on it, and it helps that he lives with a professor of psychology who was also able to tell him that coping mechanisms need to be in place. After Ex was able to calm down himself, he was able to see the issue and even asked me for advice on how to deal with such behaviour.I spend a considerable amount of time educating people with regard to coping with sprog's behaviour. It's an ever-evolving job, and it is something I have learned to deal with. People don't believe me until they see these things for themselves, and it's frustrating that I have to wait until that period of time, but when they come to me for answers, at least I am now rather well practiced in being able to give them, and it works out eventually in the end. Communication is important and without a team of people actually willing to ask me for advice, things can go a lot worse - as is happening now with sprog's school, but that's probably another post.
Sprog was at his father's house after a very busy day, and apparently by ex's account had spent a half hour obsessing about a watch that Ex had given him; he didn't come home with it the last time he had been round, and he said he had left it at his dad's. So, at 9:30pm, he was distressed that he couldn't find it and ransacked the house, getting more and more upset. The Ex therefore assumed it was because I had told sprog the watch was at his father's house, and therefore sprog had obsessed upon it and torn the house apart. I was therefore instructed in no uncertain terms to never "make a fuss" about things being over at his place until I call him first and check. A bit more abuse down the wire and since I was already half asleep, I hung up!
My own peace and "weekend break" was now shattered, and after a few muttered abuses of my own, I found myself staring up at the ceiling and putting the pieces together, as this is something I've dealt with on a regular basis with child.
Autism has a very Jekyll/Hyde personality: when an autistic person is in "guest mode" in a new situation, they can often be exceedingly charming. My son charms the pants of everyone he meets, and quite often people therefore tell me "Oh, he's not THAT bad" as if my own experiences were somehow overwrought or made up. However, that is my son in "guest mode". Once he gets comfortable with a person or a place, he reverts to his usual behaviour - and then these same people are shocked and in a panic, wondering what has happened (again, usually thinking there must be some abuse at home causing the change) and the frantic phonecalls begin.
The explanation is, once you know the signs, rather simple; the honeymoon period is over. Now that sprog is comfortable in his surroundings, it is like a second home. It is familiar and therefore should be just like it is at home. Bedtimes, meal times, coping mechanisms, everything has to be like it is here. And if it isn't, he goes into a meltdown (or, as happened last night, he fixates on something just like he did during the fire scare).
The mistake is that people focus on the meltdown - and granted, his meltdowns can be very violent and catch one quite off-guard if one has never seen it before - and don't think much about the behaviour leading up to it. Now, sprog had a late start to the day due to the trains, the whole trainride back to Ex's house was disruptive as well. He refused breakfast and was probably already quite hungry. He went to ex's house and now it seems that is officially a familiar place, and to sprog's mind should follow the same rules. Unfortunately, Ex has his own parenting style, which quite often flies directly opposed to my own - meal times are rarely set and often come only when sprog's behaviour deteriorates, the day is packed with happenings with very little downtime, and his bedtimes are very late - because Ex loves his lie-ins and the longer he keeps sprog up, the longer he'll sleep in.
This would be fine with a mainstream child - it might make back-to-school routines a bit problematic but not overly so. However, with a child like mine, it's a disaster; with so much going on and so many changes to his usual routine, it's no surprise that his mind overloaded at 9:30pm (well over two hours past sprog's usual bedtime) and he fixated upon a trivial thing and couldn't get off it. As far as the meltdown itself goes, it's been so long since Ex has been subjected to such a thing as his visits with his son are rather brief that I imagine he was just unable to cope.
It's important to note that Ex is also on the spectrum; high-functioning or Asperger's. So he also has his own fixed regimen and routine - and him attempting to adapt to sprog's routine is rarely successful. I had to play referee many times between their arguments, much as I imagine Ex's mum had to do when it came to Ex himself and his own dad. So, communication with Ex is already frought with difficulty as any suggestion to adapting his routine is taken as a direct and personal attack upon his very world. There is no way Ex would get up with sprog at 4, no way that he would allow a light on in his room (even a tiny pinpoint of light is enough to keep him from sleeping), no way that he'll allow sprog to eat at exactly the same time if he himself wasn't hungry. To his mind sprog just "has to learn to cope". Dealing with two incredibly inflexible people is a challenge, and so I have to be very careful how I word things like this to Ex - I know his opinion of my advice is that I'm just a nag.
But I've had to have these exact same conversations with many different groups of people for the past four years, and so I've got it down pretty much to a science:
Don't blame them for the meltdown, even if their own behaviour was a direct result of the trigger. A late and chaotic trainride with no breakfast, a trip to the zoo, familiarity that isn't and a ridiculously late bedtime was just asking for trouble. I know it; but I have to fight down my own anger and irritation at such behaviour, because people who feel they're on the defensive won't listen to solutions. I've called a much calmer ex this morning and explained to him that it wasn't the watch, it was the Jekyll/Hyde syndrome and the routine break. Ex has agreed the point, and the watch was secondary - it is definitely lost however and this was more than likely due to it being on a rather naff elastic band. Ex will get a new one which won't be so easily loosened, so that crisis sorted.
Get everyone on the same page. I have very fixed routines for sprog's mealtimes, for his bedtimes, and rituals for each. He knows what these are, and while they can differ in various scenarios (such as at school) I do try and keep these the same. Mealtimes cannot vary quite so much, and bedtimes should only be about an hour off. Will he push his limits? Of course! But after the routine becomes established, he's grateful for its presence. Ex is aware of sprog's bedtime but he couldn't get sprog to settle, and sprog pushed his limit by saying he always got a video after his bath (which isn't true - he's a sneaky little bugger!). However, the wrapping sprog in a blanket was news to him and also the new "calm down" steps that I take to get sprog to get out of meltdown-space is something Ex will have to learn.
Give him the safe space and the time to use it. There are going to be triggers and meltdowns regardless of everything you do - the only thing you can do is minimalise their frequency, but they'll never disappear entirely. Safe space can be as simple as a pop-up tent strung with lights or as elaborate as a sensory room with all the fancy trimmings. But it is a VITAL space for people with autism to have. The school has had to create a quiet room for sprog (which sadly is completely empty), and I'm still working on getting sprog's room sorted as a sensory space, but it's necessary for him to have that safe-chill area in order to cope and process the day at his own pace, in his own way. Ex already acknowledged this and told me today he has plans to create a sensory tunnel over sprog's bed space - this is a huge deal considering Ex's issue with lights or noise or anything in his room, and I'm pleasantly surprised and grateful he'd even consider it. He will also be building cabinet space that can be locked to keep sprog from tipping out the contents of Ex's stuff all over the room; out-of-sight, out-of-mind.Stay vigilant. I find myself learning that, just when I've taken care of one issue, two more issues crop up. You can't rest on your accomplishments, you have to stay apprised of how a child with autism is developing - new information is learned, new skills need to come into play to deal with it. Autistic children do learn and grow, they're not frozen in amber and so just because one coping mechanism worked when the child was two does not mean it will work when they're four. This is maybe the most frustrating part of things, but you have to not get too comfortable with your child-rearing, and you need to be able to adapt. This is probably Ex's weakest point - change is as alarming to him as it is to sprog, but I think he has had time to think on it, and it helps that he lives with a professor of psychology who was also able to tell him that coping mechanisms need to be in place. After Ex was able to calm down himself, he was able to see the issue and even asked me for advice on how to deal with such behaviour.I spend a considerable amount of time educating people with regard to coping with sprog's behaviour. It's an ever-evolving job, and it is something I have learned to deal with. People don't believe me until they see these things for themselves, and it's frustrating that I have to wait until that period of time, but when they come to me for answers, at least I am now rather well practiced in being able to give them, and it works out eventually in the end. Communication is important and without a team of people actually willing to ask me for advice, things can go a lot worse - as is happening now with sprog's school, but that's probably another post.
Labels: Sprog