Since I spend so much of my time lamenting the distress involved in mothering 2 boys with some big challenges, you think I'd be nodding my head vigorously when I get feedback suggesting that one of them is indeed disruptive and unequipped to participate in an age-appropriate activity. Well now that it's actually happened, that's so far off the mark I feel like I have a split personality; the mother who writes this complaining blog, and the mother who feels like ringing the neck of the judgemental martial arts teacher who has basically told us not to come back.
It doesn't help that this came after the sense of disapproval directed at Secundo yesterday by another adult at the end of a playdate. And I kind of knew it was coming, so why it has knocked me quite so badly off my balance is a little surprising. I suppose suspecting something is different from being told it bluntly. Suppose, indeed; I don't often get up in the middle of the night to sit at the computer, sleep is too hard to come by in our house, but after Primo woke up with a nosebleed as he does about once a month, my head was filled again with this little piece of news, which then drifted to merge with all sorts of other senses of failure that I'm experiencing in relation to my parenting, a whole wash of self-criticism from my being unable to keep my home remotely functional, to the disastrous, fragmented eating habits of the household, to the sense of having screwed up my little boy's life pretty much from birth, probably stirred up by the OT yesterday probing a little about his infancy, looking for more insight into that impulsive anger of his.
The stupid thing about this class is, it was in many ways a nightmare. I bought the classes at a charity auction and only found out after purchase where they were held; across town just before peak hour. Sometimes it took an hour to drive home, almost double the time to drive there. After a term of driving across the city straight from school, having to settle Primo in a different part of the facility and barely making it there on time, I've watched Secundo dance around, wobble, throw himself of the floor, and generally move compulsively in a way that clearly irked the teacher of this very disciplined, well-behaved group. I spoke to his OT, I even spoke to Primo's gym teacher, who specialises in kids with disabilities. Because of the rush in getting there and the class immediately following, I did not speak to the class teacher, so I can't blame him entirely for his reaction. But despite all this, Secundo was loving it. After years of trying miserably to get him to participate in any kind of group, this is the one he clicked with. I could see he was really responding to the strongly structured format, and glowed with pride when he sat down amongst slightly older kids who simply included him as one of the group. And he's strong, it was clearly good for him to be letting that energy out with some powerful kicks. He was doing his best, but that was hard for the unfamiliar eye to detect. The end of term came, and he was adamant he wanted to continue. On top of the logistical difficulties, it was pretty clear to me that the teacher found him frustrating, although Secundo didn't seem to pick up on that.
I couldn't just abandon the whole experience, so I found a local class which his Dad took him to this morning. He loved Dad going, but the class was more than twice as long with only one other child his age. He did not click with it. With resignation, I sent an email asking to rejoin the class he's been going to, only to get a curt and unfriendly reply. I had a kind of out-of-body look at myself sobbing because my child didn't quite cut it in a martial arts class, thinking lady, you've got to lighten up. If it was in isolation, maybe.
I found another school on this side of town and have sent an email asking about availability. If they have a place, I will present it to him as a fait accompli; we are changing because the other class is too far away, and, bonus, Dad will be able to go to the new place as well. If they don't take him, I just don't know. We considered telling him he could only go back to the other place if he stopped mucking around, in the hope that he would draw on his reserves of self-control and rise to the challenge, but I suspect it's more likely that his self-esteem would truly suffer and the rest of the household would go through the ringer in the process. I'm sure as hell not going to tell him that he's not good enough, but he's so rigid about many things, this could truly be the end of the whole experience, and I want so desperately for him to find something fulfilling for himself that he can take some pride in and experience the joy of developing skills ...
A big part of why I take such things to heart goes back to problems I articulated when I started with this blog; I don't really know what I'm dealing with. I don't believe I just have a quirky kid, don't think I ever did, but nor do I believe I have a second ASD kid, despite some recent inferences again from the OT. But the world does not come together for him in ways that I intuitively understand, and as time goes on I feel increasingly as though I'm failing him.
In this blog I attempt to air some of the vicissitudes of my experience of motherhood, especially where Asperger's Syndrome and other behavioural difficulties are involved, and I also hope to find someone out there who understands!
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Sunday, April 14, 2013
Friday, November 2, 2012
Non-finite grief
A pretty self-explanatory phrase; there is no end point to the sense of loss, but there are ups, downs, moments of prominence, contradictions. P, my AS son, appears enough like other kids for the most part that the world around the family fails to see the problems, and encourages everyone to focus on the strengths, leaving his parents sometimes feeling quite bewildered and uncertain of themselves. Then, without warning, you are hit hard, knocked flat, by a most unmerciful sense of certainty.
I had to take P to a special out-of-school activity this morning, along with 2 other girls from his class. It's a short course available to certain children who are considered to be talented in the area being taught; what parent in their right mind could find a problem here? But from the beginning, P struggled in unpredictable ways. The staff were great, and I felt proud of him, as well as satisfied that he had managed the whole experience enough to engage somewhat with the course.
I turned up to drive the group to the venue for the final session. Traffic was heavy and the 5-minute drive turned into 15. No hardship there; it prolonged my glorious conversation with 2 lovely little girls about everything from Enid Blyton to Gangam Style. Whilst enjoying the interaction for what it was, I was simultaneously modelling for P, as well as working to provide opportunities him to engage as well. His responses were minimal and generally unenthusiastic.
We got out of the car and they all went about their business while waiting for the doors to open; I hung around till they went inside. P to his credit lined up with the boys playing 4-square and got a turn, but it was such a fragile-looking success, it was hard to watch. I kind of imploded. I realised that I am utterly, utterly starved of so much that should be taken for granted; emotionally, life with a little AS boy is so austere. So much of myself is on hold, so much that I wish for from him is not forthcoming. There was nothing conscious, nothing analytical about any of this: the emotions just tumbled, tumbled out without me understanding or having any control. The tears started to roll.
And that, for the uninitiated, is non-finite grief.
I had to take P to a special out-of-school activity this morning, along with 2 other girls from his class. It's a short course available to certain children who are considered to be talented in the area being taught; what parent in their right mind could find a problem here? But from the beginning, P struggled in unpredictable ways. The staff were great, and I felt proud of him, as well as satisfied that he had managed the whole experience enough to engage somewhat with the course.
I turned up to drive the group to the venue for the final session. Traffic was heavy and the 5-minute drive turned into 15. No hardship there; it prolonged my glorious conversation with 2 lovely little girls about everything from Enid Blyton to Gangam Style. Whilst enjoying the interaction for what it was, I was simultaneously modelling for P, as well as working to provide opportunities him to engage as well. His responses were minimal and generally unenthusiastic.
We got out of the car and they all went about their business while waiting for the doors to open; I hung around till they went inside. P to his credit lined up with the boys playing 4-square and got a turn, but it was such a fragile-looking success, it was hard to watch. I kind of imploded. I realised that I am utterly, utterly starved of so much that should be taken for granted; emotionally, life with a little AS boy is so austere. So much of myself is on hold, so much that I wish for from him is not forthcoming. There was nothing conscious, nothing analytical about any of this: the emotions just tumbled, tumbled out without me understanding or having any control. The tears started to roll.
And that, for the uninitiated, is non-finite grief.
Labels:
Aspergers Syndrome,
emotion,
grief,
motherhood,
parenting
Monday, January 16, 2012
Always back to "labels"
Yesterday, I heard Bernard Henri Levy on Start the Week, one of my favourite podcasts, pontificating about all that is wrong with the world. I've heard him speak once before on a very specific issue (a murder) and don't remember much of what he said; I was certainly not astounded by his fatuousness as in this latest instance. The point where I switched off was when he equated modern, medicalised societies, which tend to eradicate the notion of "evil" in favour of a range of treatable pathologies, as "totalitarian" -- doctors controlling us all with little pills.
I had an epiphany of sorts about the burden that this kind of thinking contributes to my own very personal circumstances. I suppose because to some degree I would be one of Levy's natural constituents, a leftie-type who values intellectual critique, almost reflexively suspicious of much that modern western capitalism "offers", always on the lookout for a bigger picture or a deeper issue. I transpose his observation a little here from pills (although I could easily get worked up about that -- another blog topic perhaps) to the difficult distinction between personality and disorder -- the medicalisation of personality, I suppose. Having a child diagnosed at 2 with a pervasive developmental disorder, I've had plenty of experience with this one. I've now realised that I need to become more articulate about why I can accept his diagnosis, his "label" as helpful and don't see it as reductive, as some kind of denial of his humanity. Again, the topic for another blog.
To wander away from my incredulousness at Levy's simplistic thinking, this question of whether or not to "label" one's child has been more burdensome with S. This blog was basically born from this struggle, which often seems to boil down to: am I inadequate as a parent, or is there actually something unusual about this child? It has been a terrible uncertainty to live with. Only a few weeks ago, the psychologist once again made it known that she considers him to have ASD traits. Whereas with P, being told this gave me a map to work with; with S, I feel the most gut-wrenching, paralysing confusion, because it just doesn't seem to fit, but I have no better explanation.
A few days ago S had a friend for a sleepover, a lovely, compliant, cheerful little boy who is simply not interested in conflict or trouble for trouble's sake. It had a positive effect on my 2, whose behaviour improved a lot while he was here. About an hour after he left, without any conscious thought process on my part, I found myself impulsively typing "opposition defiant disorder" into Google. The contrast between the 2 boys was so striking that the term just welled up into relevance. I've mentioned that Q and I joke that whatever the diagnostic specifics of this term, it always sounded right to us, but we've never been encouraged by any professionals to see S as fitting with this profile. But he does, he does, he does. I've gone to site after site and he is so much the child they describe. And I felt that same sense of being presented with a map; all the distressing crap that goes on in the day now has a name and even though we were pretty much doing what they recommend, we have greater understanding of why we are doing it, and so it gets easier to handle the disruptions, feeling now as if we are really on a path to changing his behaviour for the better.
So it could be that I've become a victim of Levy's totalitarian, medicalised society, that I can't function without a bunch of artificial distinctions about individual difference to tell me how I should behave. But I also know that there is a huge qualitative difference between my settling upon these labels for my boys. ASD is fundamental to a person's experience of the world; ODD is more or less a secondary condition that arises from other difficulties, usually ADHD I've discovered, but that I'm happy to say is clearly not in play here. I could beat myself up well & truly over one of the other cited causes -- authoritarian parenting -- but I really do know now that that is simplistic as well. I can certainly accept that we have fallen into bad patterns where stressed parents have reinforced these tendencies; that is the whole reason I went looking for help, knowing that I was losing the battle to have a supportive, nurturing relationship with my child. We have more to discover, but this weekend, having both read through the most concise descriptions of ODD and its management, Q and I have experienced a calmness and a conviction that has been nothing but good for us, and will be nothing but good for our children.
I had an epiphany of sorts about the burden that this kind of thinking contributes to my own very personal circumstances. I suppose because to some degree I would be one of Levy's natural constituents, a leftie-type who values intellectual critique, almost reflexively suspicious of much that modern western capitalism "offers", always on the lookout for a bigger picture or a deeper issue. I transpose his observation a little here from pills (although I could easily get worked up about that -- another blog topic perhaps) to the difficult distinction between personality and disorder -- the medicalisation of personality, I suppose. Having a child diagnosed at 2 with a pervasive developmental disorder, I've had plenty of experience with this one. I've now realised that I need to become more articulate about why I can accept his diagnosis, his "label" as helpful and don't see it as reductive, as some kind of denial of his humanity. Again, the topic for another blog.
To wander away from my incredulousness at Levy's simplistic thinking, this question of whether or not to "label" one's child has been more burdensome with S. This blog was basically born from this struggle, which often seems to boil down to: am I inadequate as a parent, or is there actually something unusual about this child? It has been a terrible uncertainty to live with. Only a few weeks ago, the psychologist once again made it known that she considers him to have ASD traits. Whereas with P, being told this gave me a map to work with; with S, I feel the most gut-wrenching, paralysing confusion, because it just doesn't seem to fit, but I have no better explanation.
A few days ago S had a friend for a sleepover, a lovely, compliant, cheerful little boy who is simply not interested in conflict or trouble for trouble's sake. It had a positive effect on my 2, whose behaviour improved a lot while he was here. About an hour after he left, without any conscious thought process on my part, I found myself impulsively typing "opposition defiant disorder" into Google. The contrast between the 2 boys was so striking that the term just welled up into relevance. I've mentioned that Q and I joke that whatever the diagnostic specifics of this term, it always sounded right to us, but we've never been encouraged by any professionals to see S as fitting with this profile. But he does, he does, he does. I've gone to site after site and he is so much the child they describe. And I felt that same sense of being presented with a map; all the distressing crap that goes on in the day now has a name and even though we were pretty much doing what they recommend, we have greater understanding of why we are doing it, and so it gets easier to handle the disruptions, feeling now as if we are really on a path to changing his behaviour for the better.
So it could be that I've become a victim of Levy's totalitarian, medicalised society, that I can't function without a bunch of artificial distinctions about individual difference to tell me how I should behave. But I also know that there is a huge qualitative difference between my settling upon these labels for my boys. ASD is fundamental to a person's experience of the world; ODD is more or less a secondary condition that arises from other difficulties, usually ADHD I've discovered, but that I'm happy to say is clearly not in play here. I could beat myself up well & truly over one of the other cited causes -- authoritarian parenting -- but I really do know now that that is simplistic as well. I can certainly accept that we have fallen into bad patterns where stressed parents have reinforced these tendencies; that is the whole reason I went looking for help, knowing that I was losing the battle to have a supportive, nurturing relationship with my child. We have more to discover, but this weekend, having both read through the most concise descriptions of ODD and its management, Q and I have experienced a calmness and a conviction that has been nothing but good for us, and will be nothing but good for our children.
Monday, November 28, 2011
"Professional Support" and the Book Trade
I had a strange realisation today. My latest bruising encounter with the education system (more later) led me to mull over all sorts of things today, sifting through experiences and discoveries to try to find a way to communicate more effectively with "them", to be taken seriously.
I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital. We left with a recommendation to see a speech therapist and little else.
I went home that night and got on the computer, looking for information. Where did I look? Amazon.com. Today is the first time that I have wondered why on earth I did that? Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked. I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman. I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.
As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information. So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son. Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help. Instead there was fear, fear, fear, and grief, which there would have been anyway. But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.
I feel a surge of activism coming on. More next time on my experience today.
I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital. We left with a recommendation to see a speech therapist and little else.
I went home that night and got on the computer, looking for information. Where did I look? Amazon.com. Today is the first time that I have wondered why on earth I did that? Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked. I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman. I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.
As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information. So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son. Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help. Instead there was fear, fear, fear, and grief, which there would have been anyway. But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.
I feel a surge of activism coming on. More next time on my experience today.
Labels:
Aspergers Syndrome,
autism,
child development,
education,
emotion,
parenting,
professional support,
schooling
Friday, October 21, 2011
Pushing and shoving
The meeting with P's classroom teacher and the early years co-ordinator has come and gone. Monitoring my own performance, I'd have to say I'm finally learning. I did push my agenda yesterday, probably got too involved with my own thoughts at times, but at crucial points where I would normally feel uncomfortable about being "pushy", I didn't back down. I don't think I've changed the face of the education lanscape, and with the benefit of hindsight realised I missed some opportunities to make more concrete demands, but I do believe I have made some fundamental alterations to their understanding of what P needs to be included and extended at school. I was still strongly receiving the message that it mustn't be "extra" work for his sake, so that he is not stigmatised, but I feel fairly sure that this was their strategy for avoiding extra preparation on the teacher's part, as was the ever so nonchalant suggestion that feedback on some of what was discussed could be fitted into the school report (thus avoiding these apparently dreadfully onerous face-to-face meetings).
Q and I have had a crazy few days and so have not had a chance to debrief properly. He did, however, tell me he thought I had "thrown" the co-ordinator. Once upon a time I would have been disconcerted by the thought that my attempts to share information and work together had caused someone discomfort. This time, I felt like that was a little independent confirmation that I had shifted the agenda a bit. It is a big learning curve that the staff there are not really willing to embark upon, so I hope that my persistence has gotten through to them just a bit.
Q and I have had a crazy few days and so have not had a chance to debrief properly. He did, however, tell me he thought I had "thrown" the co-ordinator. Once upon a time I would have been disconcerted by the thought that my attempts to share information and work together had caused someone discomfort. This time, I felt like that was a little independent confirmation that I had shifted the agenda a bit. It is a big learning curve that the staff there are not really willing to embark upon, so I hope that my persistence has gotten through to them just a bit.
Labels:
advocacy,
Aspergers Syndrome,
education,
parenting
Thursday, September 8, 2011
Belatedly, the scorecard
I have neglected to report on the outcome of all the professional assessments that we endured in the first half of the year. And so, the scorecard for S: does he have AS or not? We now have, on the no side, two pediatricians and one speech pathologist; on the almost certainly not, one OT, on the fence but leaning towards the not side, one psychologist and one psychiatrist. We continue to see the psychologist who, without the distraction of the AS question, more and more identifies patterns of behaviour related to anxiety.
What I take from all this is that he is odd enough to raise question marks from all these professionals (although least from the OT, SP, and the Pediatrician who specialises in autism, who tend to see him as "normal" but with some regulation issues), but no-one quite knows what to say. It's kind of fascinating in a way. For me, I feel a slight sense of relief that no-one is sending me away saying my child is fine, it's all my problem -- that doubt about my parenting, I presume that that's not just my own pathology, that most parents share it to some degree. Other people have now seen his blocking, antisocial behaviours and confirmed that they need some kind of attention.
Having undergone this ordeal of professional speculation, it feels, happily, almost to be part of the past. He has discovered what the concept of "friend" means. He is having some play sessions with children his own age, and generally they go very well.
When lamenting the months of waiting before an appointment was available with the pediatrician of our choice, the OT to my surprise was pleased at the delay, saying that with any luck he'd have a huge developmental leap in the meantime and all would be resolved for the best. She was pretty much on the money, but back then, there was no way I could wait calmly for nearly 9 months to pass before this could be verified. One of the earliest signs that the tide was turning came a couple of months ago, when S and I went to the museum together. It was the outing of my dreams. We conversed; he asked question and was thoughtful about my answers. We were really, truly together. There was a tinge of sadness to all of this though, as he was particularly interested in a some stuffed animals, and wanted to know if they were alive. So I explained that they had died and there were some people who knew how to take the skin from an animal and make it look like it was still living. From then on, it was "poor bird", "poor horse", "poor lizard". Finally, we entered the ocean gallery and found ourselves in front of the giant squid. Two years ago he'd seen for the first time the video of the scientists measuring and then cutting out some part of its anatomy, to this day I'm not sure what. At the time he stared with big eyes and then said to me, "hurt?" I said "no". I don't remember if I told him it was already dead -- I don't know what I could have said to a 2-year-old who was quietly but clearly having a crisis. We watched the same video yesterday, and then the animation of the squid hunted by the whale. "Poor squiddly" he murmurred, turned to me, and hugged me with his heart and soul.
It sounds too trite, both psychologically and aesthetically, but I think that his nascent confidence with friends let him drop his defiant barriers and share this basic, fearful pain with me. This acknowledgement of vulnerability flickers in and out of sight, but on the whole, life has been calmer and happier for the whole household, largely because S seems to have emerged into a new phase of his life.
What I take from all this is that he is odd enough to raise question marks from all these professionals (although least from the OT, SP, and the Pediatrician who specialises in autism, who tend to see him as "normal" but with some regulation issues), but no-one quite knows what to say. It's kind of fascinating in a way. For me, I feel a slight sense of relief that no-one is sending me away saying my child is fine, it's all my problem -- that doubt about my parenting, I presume that that's not just my own pathology, that most parents share it to some degree. Other people have now seen his blocking, antisocial behaviours and confirmed that they need some kind of attention.
Having undergone this ordeal of professional speculation, it feels, happily, almost to be part of the past. He has discovered what the concept of "friend" means. He is having some play sessions with children his own age, and generally they go very well.
When lamenting the months of waiting before an appointment was available with the pediatrician of our choice, the OT to my surprise was pleased at the delay, saying that with any luck he'd have a huge developmental leap in the meantime and all would be resolved for the best. She was pretty much on the money, but back then, there was no way I could wait calmly for nearly 9 months to pass before this could be verified. One of the earliest signs that the tide was turning came a couple of months ago, when S and I went to the museum together. It was the outing of my dreams. We conversed; he asked question and was thoughtful about my answers. We were really, truly together. There was a tinge of sadness to all of this though, as he was particularly interested in a some stuffed animals, and wanted to know if they were alive. So I explained that they had died and there were some people who knew how to take the skin from an animal and make it look like it was still living. From then on, it was "poor bird", "poor horse", "poor lizard". Finally, we entered the ocean gallery and found ourselves in front of the giant squid. Two years ago he'd seen for the first time the video of the scientists measuring and then cutting out some part of its anatomy, to this day I'm not sure what. At the time he stared with big eyes and then said to me, "hurt?" I said "no". I don't remember if I told him it was already dead -- I don't know what I could have said to a 2-year-old who was quietly but clearly having a crisis. We watched the same video yesterday, and then the animation of the squid hunted by the whale. "Poor squiddly" he murmurred, turned to me, and hugged me with his heart and soul.
It sounds too trite, both psychologically and aesthetically, but I think that his nascent confidence with friends let him drop his defiant barriers and share this basic, fearful pain with me. This acknowledgement of vulnerability flickers in and out of sight, but on the whole, life has been calmer and happier for the whole household, largely because S seems to have emerged into a new phase of his life.
Labels:
Aspergers Syndrome,
childhood,
diagnosis,
kids,
parenting
Thursday, August 4, 2011
Feeling stalled
My uplifting return to my former pre-child existence was followed almost immediately by the school holidays and other responsibilities. This is thus the third week where I have experienced "days off", where I do what I like at my own pace. I'm always taken by surprise by the counter-intuitive effects of such relief; every time something in the world of child-rearing improves, every time I feel a release from some kind of relentless pressure, I expect myself to return to the coal face refreshed and energised. What actually happens is that I balk at going back at all, and find the descent harder than ever. And, being good at beating myself up, I feel guilty about it.
In theory, every week there should be one shortish and one longish day to myself. But P is missing his 4th day of school today in 4 weeks, and this particular day is -- yes, my long day off. So perhaps parenting has in some ways been a little harder than usual, and I shouldn't beat myself up too much, not to mention the ongoing need for Q to be absent for substantial periods of time caring for his elderly father. I have noticed, though, that I have much more energy and focus when there is another adult around. P couldn't go to gym the last 2 weeks, but instead of cancelling the babysitter for S, I had her come to help anyway. I found myself at the park with S on his bike while P played on the laptop in his bed. Knowing that someone was folding the washing & so forth, and that I didn't have to negotiate with 2 contrary sets of desires (in this case 1 child who finds movement in general draining, & one who is strong & craves more of it), I noticed just how much easier it was to get involved in the outing. On that note, S also continues to mature, and we are having more satisfying encounters in general. It all makes me wonder if I tend to shut down in sometimes in anticipation of the physical, mental and emotional exhaustion of juggling practical responsibilities with the communication and emotional regulation difficulties that both boys have.
On that note, memo to self; I might go off-topic sometime revisit life with chronic pain. There is also P's upcoming 7th birthday, a milestone age and a time to reflect on how we can support him as the social world of his peers picks up speed. There is much on my mind, but there still seems so little time to unravel it all!
In theory, every week there should be one shortish and one longish day to myself. But P is missing his 4th day of school today in 4 weeks, and this particular day is -- yes, my long day off. So perhaps parenting has in some ways been a little harder than usual, and I shouldn't beat myself up too much, not to mention the ongoing need for Q to be absent for substantial periods of time caring for his elderly father. I have noticed, though, that I have much more energy and focus when there is another adult around. P couldn't go to gym the last 2 weeks, but instead of cancelling the babysitter for S, I had her come to help anyway. I found myself at the park with S on his bike while P played on the laptop in his bed. Knowing that someone was folding the washing & so forth, and that I didn't have to negotiate with 2 contrary sets of desires (in this case 1 child who finds movement in general draining, & one who is strong & craves more of it), I noticed just how much easier it was to get involved in the outing. On that note, S also continues to mature, and we are having more satisfying encounters in general. It all makes me wonder if I tend to shut down in sometimes in anticipation of the physical, mental and emotional exhaustion of juggling practical responsibilities with the communication and emotional regulation difficulties that both boys have.
On that note, memo to self; I might go off-topic sometime revisit life with chronic pain. There is also P's upcoming 7th birthday, a milestone age and a time to reflect on how we can support him as the social world of his peers picks up speed. There is much on my mind, but there still seems so little time to unravel it all!
Wednesday, July 6, 2011
Same person, different lives
I wrote this a few weeks ago.
I am half-way through what is, for me, a most extraordinary adventure. A return to the life I inhabited before having children, which has been all but scoured from my daily existence for nearly 7 years. And so I am away without them, for the first time, EVER, for a good week, presenting papers at not one but 2 conferences. The tumult of emotions that have accompanied this venture have drained me utterly. I can see my reflection in the screen of this netbook and I look so very tired and older than I thought. For me there is so little solid ground involved in this expedition: I have left the family that commands almost every unit of my time, energy, attention, affection, to place myself under the scrutiny of would-be colleagues, I suppose I could call them. I rose to the challenge of this because of a strong interest in the topic of one of the conferences, and added the other (which has just finished) because I felt that it would be good to make the most of the opportunity. But I am relying on old research rewritten with a new emphasis; nothing wrong with that in some ways, it’s just that I have so little sense of validity in my return to this fold. I have no formal affiliation, a minimal track record for my age, I am not paid in any respect (and I believe this matters), and because of my family circumstances, little of this is about to change.
Well, the response to the paper that I just presented I think was positive, but it’s not entirely clear. It consisted of a lot of intensely communicated advice from senior people in my field whose work I respect very much; what I extrapolate is that their attention demonstrated a worthiness in my work of their consideration, but the many helpful suggestions also suggested that they felt I needed in some sense to pull my socks up. It might not be quite that bad; after all, one of these people asked me to send a copy of the paper to him, another then asked if I’d do the same ... and I have had a slightly unrelated coup, in that in the days before I left, I had a piece accepted for publication by a journal which I am proud to be included in. This article I have been working on in dribs & drabs during the years at home with babies, to the point where sometimes I felt that I cut a figure of total ludicrousness. For instance, when S attended occasional care the year before last, I was physically and emotionally exhausted. I knew that leaving him there would rouse his anxiety and cause me more stress than it was worth. The saintly woman who ran the show, after years of working with stressed bubs of working mothers in long day care, was totally sympathetic to my admission that what I really wanted was just to have some mental space where I was not subjected to his voracious need for attention, and that I would rather stay quietly in his sight while he got used to being around other people in a new place. And so I spent many a morning perched in a patch of sun on the side of the sandpit working on precisely this article. And now it has crossed that seemingly impermeable divide between my chaotic personal life to the public domain – at least, it’s on its way.
But amid the emotions of wondering what I want from this trip and my battle with the anxiety with the legitimacy of being here, I found myself in an aeroplane with a crying baby a few rows away. It took me back to trips with my own, of course. Later, I made eye contact with this child after she’d cheered up. She mirrored every face, hand and voice gesture I made. That was enough to bring on the tears. I still, still, still feel anguish about this. Even though S now more or less officially does not have an asd (much has happened in the last few months and I will provide an update), he, almsot as much as his brother, has not had such a relationship with me in many ways.
I am half-way through what is, for me, a most extraordinary adventure. A return to the life I inhabited before having children, which has been all but scoured from my daily existence for nearly 7 years. And so I am away without them, for the first time, EVER, for a good week, presenting papers at not one but 2 conferences. The tumult of emotions that have accompanied this venture have drained me utterly. I can see my reflection in the screen of this netbook and I look so very tired and older than I thought. For me there is so little solid ground involved in this expedition: I have left the family that commands almost every unit of my time, energy, attention, affection, to place myself under the scrutiny of would-be colleagues, I suppose I could call them. I rose to the challenge of this because of a strong interest in the topic of one of the conferences, and added the other (which has just finished) because I felt that it would be good to make the most of the opportunity. But I am relying on old research rewritten with a new emphasis; nothing wrong with that in some ways, it’s just that I have so little sense of validity in my return to this fold. I have no formal affiliation, a minimal track record for my age, I am not paid in any respect (and I believe this matters), and because of my family circumstances, little of this is about to change.
Well, the response to the paper that I just presented I think was positive, but it’s not entirely clear. It consisted of a lot of intensely communicated advice from senior people in my field whose work I respect very much; what I extrapolate is that their attention demonstrated a worthiness in my work of their consideration, but the many helpful suggestions also suggested that they felt I needed in some sense to pull my socks up. It might not be quite that bad; after all, one of these people asked me to send a copy of the paper to him, another then asked if I’d do the same ... and I have had a slightly unrelated coup, in that in the days before I left, I had a piece accepted for publication by a journal which I am proud to be included in. This article I have been working on in dribs & drabs during the years at home with babies, to the point where sometimes I felt that I cut a figure of total ludicrousness. For instance, when S attended occasional care the year before last, I was physically and emotionally exhausted. I knew that leaving him there would rouse his anxiety and cause me more stress than it was worth. The saintly woman who ran the show, after years of working with stressed bubs of working mothers in long day care, was totally sympathetic to my admission that what I really wanted was just to have some mental space where I was not subjected to his voracious need for attention, and that I would rather stay quietly in his sight while he got used to being around other people in a new place. And so I spent many a morning perched in a patch of sun on the side of the sandpit working on precisely this article. And now it has crossed that seemingly impermeable divide between my chaotic personal life to the public domain – at least, it’s on its way.
But amid the emotions of wondering what I want from this trip and my battle with the anxiety with the legitimacy of being here, I found myself in an aeroplane with a crying baby a few rows away. It took me back to trips with my own, of course. Later, I made eye contact with this child after she’d cheered up. She mirrored every face, hand and voice gesture I made. That was enough to bring on the tears. I still, still, still feel anguish about this. Even though S now more or less officially does not have an asd (much has happened in the last few months and I will provide an update), he, almsot as much as his brother, has not had such a relationship with me in many ways.
Thursday, March 10, 2011
teasing out understanding
Last December, I finally discovered a clinic that helps children with oral desensitisation. By a happy coincidence, we had just booked in to start sessions with a speech pathologist at the same place. Some discussion occurs, time goes by, funding options and qualifications cause a false start, but finally P was seen by an OT last week. I have barely been able to contain my excitement at the prospect of getting help with this. Looks like I'll have to hold it in a bit longer though. The session was disappointing in that the OT felt that he had "classic tactile defensiveness" and that we needed to start more generally rather than homing straight in on the food issues. Otherwise we wouldn't really overcome the levels of anxiety and avoidance that she feels are already present.
Well I said disappointing, but not unwelcome. This is why I try to keep him in contact with people who can help me see what might be missing for him, not just waiting for problems to manifest. So this is exactly the kind of information that I suspected that I would come across and needed to hear, it's just that the timing wasn't great, given how hard it is to live with a child who eats almost nothing, and a brother who therefore feels he can get away with a similar diet. It's pretty gut-wrenching, having your child's difficulties pointed out to you in detail. It has to happen, but there is always an emotional aftermath for me, every time I'm informed of a new detail in his profile of deficits.
In this mood, a few days later I watched another boy run enthusiastically up to P as he walked to class, place his hands on P's shoulders from behind and give him an affectionate shake. I didn't see P's complete reaction as he was a little behind me, but I think he basically shook the hands off, or at least shivered or physically withdrew somehow, perhaps briefly made eye contact and murmured something, then continued walking expressionlessly. The other boy looked surprised but took his hands away and fell in beside P.
I keep thinking about it. I think the other boy took the "rejection" well: he didn't get angry, or tease; he looked confused, but seemed to understand that his action was not eliciting the response he hoped for, and stopped; he didn't look as if he felt distressed, embarrassed at making a misjudgement, or anxious about the mis-match. On the whole he seemed to take it pretty well, although I can't know what he thinks of P as a result. Does he think that P still likes him? Does he think, "P doesn't like that kind of play, but we can do other things together?"
And what did it mean to P? He clearly registered the approach as unpleasant and made that clear. Did he understand that there was an emotional component in that approach too? I don't think so. Would another child have made a reassuring face as the other boy let go and walked next to him? Did P add this encounter to any other impressions of this boy, or did it just slip out of his mind as a random event? Such treacherous missed opportunities; how many similar episodes before a child gives up on him? So many things to learn, and how can it all be achieved? And is it asking too much for that to be the goal?
A few weeks ago I dreamt I was watching P recount an anecdote. He was confident and happy, and as a result many emotions flitted across his face with absolute ease, in synchrony with the events that he was describing. In my dreams I got to see the carefree, communicative child that I hope will develop as much as is possible. That would not only be gratifying for me, but a watershed for him.
Well I said disappointing, but not unwelcome. This is why I try to keep him in contact with people who can help me see what might be missing for him, not just waiting for problems to manifest. So this is exactly the kind of information that I suspected that I would come across and needed to hear, it's just that the timing wasn't great, given how hard it is to live with a child who eats almost nothing, and a brother who therefore feels he can get away with a similar diet. It's pretty gut-wrenching, having your child's difficulties pointed out to you in detail. It has to happen, but there is always an emotional aftermath for me, every time I'm informed of a new detail in his profile of deficits.
In this mood, a few days later I watched another boy run enthusiastically up to P as he walked to class, place his hands on P's shoulders from behind and give him an affectionate shake. I didn't see P's complete reaction as he was a little behind me, but I think he basically shook the hands off, or at least shivered or physically withdrew somehow, perhaps briefly made eye contact and murmured something, then continued walking expressionlessly. The other boy looked surprised but took his hands away and fell in beside P.
I keep thinking about it. I think the other boy took the "rejection" well: he didn't get angry, or tease; he looked confused, but seemed to understand that his action was not eliciting the response he hoped for, and stopped; he didn't look as if he felt distressed, embarrassed at making a misjudgement, or anxious about the mis-match. On the whole he seemed to take it pretty well, although I can't know what he thinks of P as a result. Does he think that P still likes him? Does he think, "P doesn't like that kind of play, but we can do other things together?"
And what did it mean to P? He clearly registered the approach as unpleasant and made that clear. Did he understand that there was an emotional component in that approach too? I don't think so. Would another child have made a reassuring face as the other boy let go and walked next to him? Did P add this encounter to any other impressions of this boy, or did it just slip out of his mind as a random event? Such treacherous missed opportunities; how many similar episodes before a child gives up on him? So many things to learn, and how can it all be achieved? And is it asking too much for that to be the goal?
A few weeks ago I dreamt I was watching P recount an anecdote. He was confident and happy, and as a result many emotions flitted across his face with absolute ease, in synchrony with the events that he was describing. In my dreams I got to see the carefree, communicative child that I hope will develop as much as is possible. That would not only be gratifying for me, but a watershed for him.
Labels:
Aspergers Syndrome,
kids,
motherhood,
parenting,
sensory disorder
Tuesday, February 15, 2011
Two confessions
Here are a couple of things that must sound dreadful. My day started with me just flattened by the emotions stirred up during S's "mini-assessment" yesterday. I became more convinced that the psych's suspicions were right, that I had just been interpreting things with an inadequate framework for understanding AS. I was sobbing before I was out of bed. I felt incredibly bleak. I had to start adjusting to the new reality taking shape before me.
S didn't want to go to kinder as usual, and P was fighting going to school. I had nothing in the tank; I told them there would be a new toy if they went. Immediate change of attitude; S even went and got himself something for "show and tell" (no-one has discussed this with him, he must be copying his brother's routine from school last year). He apparently had a terrific day, played really well with a new boy, and when I arrived he was happily playing with a girl he knows quite well, even if he was telling her she was dead for not following some crucial instruction (so he was mimicking a computer game like P does). He told me he'd played with everybody. He seemed relaxed, happy. I should have been happy, and I was really, but here is the dreadful-sounding part; I almost would have found it easier if he'd been the unhappy, mal-adjusted child that I'd braced myself for. At school pick-up, I found myself with another lovely son. We had to bring home a friend of his whose father couldn't get there on time. All 3 boys were happy and well-behaved together.
I do not know what to think or feel. On top of this, Q has had to go to a work function tonight, and I always pace myself carefully on such evenings. The boys had a lot of computer time, a lot of leeway to play, were up a bit later so that they'd be just that much more tired when I tried to get them to bed. The next dreadful-sounding bit; sometimes I feel almost too nervous to do things with them. They are so unpredictable, I get confused, I get drained, I get frustrated, I get angry. I don't know what to expect, and sometimes I just hold back and try to make it to the end. On nights when it's just me like this, I wonder how single parents cope, I wonder if I make more sense to them, or if maybe I'm not as alone as I feel.
S didn't want to go to kinder as usual, and P was fighting going to school. I had nothing in the tank; I told them there would be a new toy if they went. Immediate change of attitude; S even went and got himself something for "show and tell" (no-one has discussed this with him, he must be copying his brother's routine from school last year). He apparently had a terrific day, played really well with a new boy, and when I arrived he was happily playing with a girl he knows quite well, even if he was telling her she was dead for not following some crucial instruction (so he was mimicking a computer game like P does). He told me he'd played with everybody. He seemed relaxed, happy. I should have been happy, and I was really, but here is the dreadful-sounding part; I almost would have found it easier if he'd been the unhappy, mal-adjusted child that I'd braced myself for. At school pick-up, I found myself with another lovely son. We had to bring home a friend of his whose father couldn't get there on time. All 3 boys were happy and well-behaved together.
I do not know what to think or feel. On top of this, Q has had to go to a work function tonight, and I always pace myself carefully on such evenings. The boys had a lot of computer time, a lot of leeway to play, were up a bit later so that they'd be just that much more tired when I tried to get them to bed. The next dreadful-sounding bit; sometimes I feel almost too nervous to do things with them. They are so unpredictable, I get confused, I get drained, I get frustrated, I get angry. I don't know what to expect, and sometimes I just hold back and try to make it to the end. On nights when it's just me like this, I wonder how single parents cope, I wonder if I make more sense to them, or if maybe I'm not as alone as I feel.
Labels:
children and friendship,
diagnosis,
emotion,
family,
kids,
motherhood,
parenting
Monday, February 14, 2011
Sentencing postponed
It felt like I was going to be sentenced; for guilt, for failing to understand what was in front of me. And a sentence for S too; a label, a life of problems that I thought he would not have to know as his brother does.
In that mood I drove to the psychologist's. S was at his worst. For the half hour of driving he repeated incessantly 2 "jokes", barely pausing for breath. I turned up the radio, I sang loudly, to stop myself from screaming at him. By the time I found a carpark we were late, and I was frazzled. S was at his worst, blocking the psych's every attempt to engage him, although she made modest progress. Pretty much everything she saw and everything I told her seemed to confirm the likelihood of AS, but the fact that he also seemed unrelaxed, combined with a conversation she'd had with the OT who feels he's probably not, meant that she couldn't be sure. And so she decided to do a full assessment in 2 weeks.
I had to do some shopping this afternoon and set out with the lowest of expectations of him, only to discover him to be enthusiastic, co-operative, and fun to be with. I feel like I am going around the twist.
In that mood I drove to the psychologist's. S was at his worst. For the half hour of driving he repeated incessantly 2 "jokes", barely pausing for breath. I turned up the radio, I sang loudly, to stop myself from screaming at him. By the time I found a carpark we were late, and I was frazzled. S was at his worst, blocking the psych's every attempt to engage him, although she made modest progress. Pretty much everything she saw and everything I told her seemed to confirm the likelihood of AS, but the fact that he also seemed unrelaxed, combined with a conversation she'd had with the OT who feels he's probably not, meant that she couldn't be sure. And so she decided to do a full assessment in 2 weeks.
I had to do some shopping this afternoon and set out with the lowest of expectations of him, only to discover him to be enthusiastic, co-operative, and fun to be with. I feel like I am going around the twist.
Thursday, November 11, 2010
"Stupid Pooheads!"
Why should this insult hurled at yours truly delight me so? P has been trying ever so hard for a few months now to get angry, as opposed to losing control. When things are really not going his way, he puts on quite a pantomime of pouting lips, crossed arms, hitting or even throwing things. Trouble is, he looks incredibly cute because he's really not very good at it; all the more reason to play my part, put on a stern, disapproving look, and let him go for it. And after my hand-wringing about the lack of connection I sometimes feel, these outbursts are characterised by his worried little eyes frequently meeting mine to see whether he's gone too far! I gave him a great deal of rope indeed; my instinct is that he needs to be able to do this if he is to have control of his emotional life.
Having brought to an end his pre-bed play session with S, his response was one of these performances. That in itself represented progress; generally, a play session cut short (as he felt this one to be) results in a melt-down; he is usually crushed by not having done everything he intended to do, no so much because of running out of time, but because of being distracted, and I think that that sense of disorganisation really upsets him. So yes, this was actually a good step forward for him. His brother's resistance was, unusually, weaker (just too tired I think), and so I focused on getting him to bed and warned the shouting gesticulating P to get into his or leave the room. He disappeared for a while, then stood in the doorway trying, I think, to look defiant with those searching, uncertain eyes. I told him to go where I couldn't see him (S and I were having a lovely cuddle), but instead he came in, uttered the aforementioned insult in an uncertain voice, and climbed into his bed. When S dropped off, I gave him a kiss and told him I loved him.
I had watched him "play" after school earlier with a boy he speaks about a lot, from a different class. I thought he'd made a mistake, that this kid did not in fact like him, as P trailed around behind the boy, who ran around making gun noises and looking at no-one in particular. To my amazement, on the way out, this boy asked his mother if P could come over for a play, and repeated the request to me. I don't know this child, but based on what I saw, as well as from what I've seen of P's other playmates, there seems to be a group a young boys with rudimentary social and play skills who are reinforcing each other's weaknesses rather than gaining skills from their more able peers. I don't mean to be completely negative about their play, but it does seem that the kids who are less able to connect spend time with other kids also lacking the ability; that might suit some, but others might flourish, I suspect, with some guidance. It may seem a long bow to draw, but showing me that he knows how to be angry, well, it is part of skilling up, of becoming more discerning about his lot, of being able to act on his emotions rather than being swamped by them -- isn't it?
Having brought to an end his pre-bed play session with S, his response was one of these performances. That in itself represented progress; generally, a play session cut short (as he felt this one to be) results in a melt-down; he is usually crushed by not having done everything he intended to do, no so much because of running out of time, but because of being distracted, and I think that that sense of disorganisation really upsets him. So yes, this was actually a good step forward for him. His brother's resistance was, unusually, weaker (just too tired I think), and so I focused on getting him to bed and warned the shouting gesticulating P to get into his or leave the room. He disappeared for a while, then stood in the doorway trying, I think, to look defiant with those searching, uncertain eyes. I told him to go where I couldn't see him (S and I were having a lovely cuddle), but instead he came in, uttered the aforementioned insult in an uncertain voice, and climbed into his bed. When S dropped off, I gave him a kiss and told him I loved him.
I had watched him "play" after school earlier with a boy he speaks about a lot, from a different class. I thought he'd made a mistake, that this kid did not in fact like him, as P trailed around behind the boy, who ran around making gun noises and looking at no-one in particular. To my amazement, on the way out, this boy asked his mother if P could come over for a play, and repeated the request to me. I don't know this child, but based on what I saw, as well as from what I've seen of P's other playmates, there seems to be a group a young boys with rudimentary social and play skills who are reinforcing each other's weaknesses rather than gaining skills from their more able peers. I don't mean to be completely negative about their play, but it does seem that the kids who are less able to connect spend time with other kids also lacking the ability; that might suit some, but others might flourish, I suspect, with some guidance. It may seem a long bow to draw, but showing me that he knows how to be angry, well, it is part of skilling up, of becoming more discerning about his lot, of being able to act on his emotions rather than being swamped by them -- isn't it?
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