What a bizarre feeling: I have just walked away from both of my children, left them with another mother who is taking them home for some play with her kids. I have never done this before. I walked to the park this morning with 2 kids, and have just walked home from the park without them. Forgive me for labouring the point, but I can't quite grasp what I've done.
Every time I have a step forward like this, a return to the simple freedoms of life unencumbered by children, I am a bit kinder to myself. Who wouldn't be a basket case when the prospect of a few hours alone at home is such a bewildering, foreign experience?
So this is probably the high point of the day; not that it's been dreadful by any means, but P was up before 6 (never a good thing), and I took the time this morning to make pumpkin & sweet potato doughnuts from a recipe in Deceptively Delicious, as I happened across a very cheap doughnut maker on the weekend. To my delight, he ate one with enthusiasm, but stopped halfway through the second one, looking truly sick. I tried to press the point this time, because I am getting desperate. What happened? Why did you stop half-way through? Because, he said, he finished the sugar (on top) and then it didn't taste good. This often seems to happen with food; he starts with enthusiasm but something goes wrong, and I feel that his explanation is inadequate to say the least. I found Just Take a Bite very helpful in informing me about the complexity of the problem, as it makes clear that it could be sensory, motor (including not just the mouth but the posture of the whole body), taste, texture, oh who knows!
This incident also called to mind his early days at child care. After his diagnosis, it was felt to be important for him to be around other children as much as possible. These days, that seems to mean day care. I was not happy to deposit him so young, and was given a lot of leeway, I'm happy to say, in staying myself for quite a few months. But the staff were ever anxious to move things along, and were pushing for him to stay for lunch. I used to take him home at lunchtime, as the centre provided a hot meal -- fabulous for most kids, but one more problem for us. He was given plain noodles, and I watched from outside the room, as always with S strapped to my chest. Well, he ate the noodles with no problem, and they asked him if he'd like more. He responded positively. Looks like worried Mum was over-doing it! Then I watched him spoon noodles into his mouth and then open his mouth and let them drop down his front, again and again. Maybe he didn't know when he'd had enough? He might have been spooning them in, I think, because he was offered more, and thought that he had to have them. This is with hindsight; I doubt that he could identify a request, or an offer, from a direction, at that age.
So I've sent him off to play with an array of crackers and breakfast cereal. He's even going off white bread rolls. I find it extremely difficult to remain calm about P's diet.
Monday, September 27, 2010
Thursday, September 16, 2010
Micromanaging
So am I a micromanager? And if I am, is that really a bad thing?
When it came to choosing a school for P last year, we were not exactly thorough. We live minutes from the local school, have had other family members attend it, and P would be moving there with a lot of other familiar kids from kinder; basically, they would have to do something seriously wrong in our eyes for us to make the effort to go further afield. Q attended an early intervention information session where, by coincidence, a mother spoke glowingly of her son's induction at the same school. But we also knew a few stories that countered this report. The EI worker who had helped with the transition of the happy mother's child was good enough to come to my home & have a cup of tea with me. She was frank, experienced, realistic & reassuring. She was also involved in our son's transition. The school representatives presented themselves as educators who had seen everything & would handle whatever came their way.
I could say lots more about all of this, but the big shock for me has been, what if your child doesn't throw anything at them? What if you have sat in office after office, for several years, either witnessing first hand, or having explained to you, that yes, your child's difficulties are subtle, but there they are. And every so often, you would discover a biggie, and realise that he's already learning how to detour around things that vex him. But often, you wouldn't even know there is a problem without someone to guide you to it.
So Tony Attwood describes, in his Complete Guide to AS, 4 responses by the AS individual to their condition. The lucky ones, it would seem, learn to imitate others. P is one of these lucky ones. The problem is that he's so good at it that the school, by and large, does not take his condition seriously. I have been nudged, patted, grinned at, or looked at with incomprehension or irritation when I have brought up issues that I thought needed attention, or even when I have asked for meetings or services that the school system guidelines recommend. Alas, I wish I was tough. I am not; I am crushed by the merest hint of confrontation. I spent the first half of the year literally making myself sick as I adjusted my expectations to what was actually on offer at the school, and combed over the evidence to try to pinpoint the problem and strategize to overcome it. I keep coming back to P's high-functioning-ness. But I also wonder about the difference between what a mother sees, or intuits, about her own child, and the powers of perception of the other adults around him.
To my mind, I am fairly well attuned to my child, but even so, he perplexes both of his parents. We went to a psychologist about him last year because of his night wakings. He's never been a good sleeper, but at that stage, he was waking a few hours after he went to bed & crying. He seemed indifferent to efforts to comfort him, but he was not experiencing night terrors; he was definitely awake. The sobs seemed almost angry rather than afraid, and dragged on and on. We had him to the doctor, and he ended up on antibiotics once. But the problem continued, so I suspect that the possible ear infection was a red herring (the only bright note was that his halitosis went away for the duration of the medication, so we introduced probiotics to his diet ...). We could not tell whether our son was in pain, or afraid, or make any connection with him (although he did cry louder if we moved away; that was as much feedback as we got). We felt totally inept. Hence the psychologist, who had no insight into it either. I suspect it had something to do with the transition from one stage of sleep to another, but really, that's a fairly uninformed guess (I did read an informative book on sleep when P was very young by William Dement, the title of which escapes me. I thought he was retired, but now I see he has a website at Stanford! Wish I'd thought to check when we were going through all this).
The point is that even when you are attentive to your child's needs, you will not always know what is actually going on, especially with AS kids. I recently heard Carol Gray put her audience on notice that ASD kids might look like they are in neutral, but actually be in a "slow burn", so when they finally ignite, there will have been little warning about the stress that they were experiencing. So I take for granted that I need to be fairly active about monitoring his moods, double-checking, and looking somewhat laterally for clues about his inner state. I also take for granted that there is no guidebook to help me with this process, that sometimes I will miss things, and sometimes I will fret too much. I decided long ago that if I were to err, it would be on the side of generosity; I would rather pay too much attention than too little. The risk is obviously that I, well, micromanage my son's life. But I truly think that I am treading a pretty good balance. I am realising, though, how easily the rest of the world, not privy to my reasoning, will see me as a thoroughly modern helicopter parent. Well I probably am, and I'm certainly anxious enough to be vulnerable to the suggestion. But I'm toughening up and realising that I need to be proud of my attentiveness too; no-one else will give that to him, except of course his father, although even there, he works full-time, so it tends to be me who thinks through the implications of what I notice, and who looks for a course of action in response.
We are nearing the end of his first year at school. His language skills are too good to qualify for formal assistance, and the school disappointed me by being resistant to having professionals come to the classroom. It became clear to me early on that my suggestions would largely be regarded as interference, and the prevailing mode of thought seems to be that if he's not kicking up a fuss, he is fine. Meanwhile, I see the subtle ways in which he is not progressing in his work, or his social skills. I think it is reasonable to be proactive about these things, and have some support now from a report written by an education dept. representative. The question is how to get the school to co-operate with the things that I believe need to be incorporated into his curriculum.
When it came to choosing a school for P last year, we were not exactly thorough. We live minutes from the local school, have had other family members attend it, and P would be moving there with a lot of other familiar kids from kinder; basically, they would have to do something seriously wrong in our eyes for us to make the effort to go further afield. Q attended an early intervention information session where, by coincidence, a mother spoke glowingly of her son's induction at the same school. But we also knew a few stories that countered this report. The EI worker who had helped with the transition of the happy mother's child was good enough to come to my home & have a cup of tea with me. She was frank, experienced, realistic & reassuring. She was also involved in our son's transition. The school representatives presented themselves as educators who had seen everything & would handle whatever came their way.
I could say lots more about all of this, but the big shock for me has been, what if your child doesn't throw anything at them? What if you have sat in office after office, for several years, either witnessing first hand, or having explained to you, that yes, your child's difficulties are subtle, but there they are. And every so often, you would discover a biggie, and realise that he's already learning how to detour around things that vex him. But often, you wouldn't even know there is a problem without someone to guide you to it.
So Tony Attwood describes, in his Complete Guide to AS, 4 responses by the AS individual to their condition. The lucky ones, it would seem, learn to imitate others. P is one of these lucky ones. The problem is that he's so good at it that the school, by and large, does not take his condition seriously. I have been nudged, patted, grinned at, or looked at with incomprehension or irritation when I have brought up issues that I thought needed attention, or even when I have asked for meetings or services that the school system guidelines recommend. Alas, I wish I was tough. I am not; I am crushed by the merest hint of confrontation. I spent the first half of the year literally making myself sick as I adjusted my expectations to what was actually on offer at the school, and combed over the evidence to try to pinpoint the problem and strategize to overcome it. I keep coming back to P's high-functioning-ness. But I also wonder about the difference between what a mother sees, or intuits, about her own child, and the powers of perception of the other adults around him.
To my mind, I am fairly well attuned to my child, but even so, he perplexes both of his parents. We went to a psychologist about him last year because of his night wakings. He's never been a good sleeper, but at that stage, he was waking a few hours after he went to bed & crying. He seemed indifferent to efforts to comfort him, but he was not experiencing night terrors; he was definitely awake. The sobs seemed almost angry rather than afraid, and dragged on and on. We had him to the doctor, and he ended up on antibiotics once. But the problem continued, so I suspect that the possible ear infection was a red herring (the only bright note was that his halitosis went away for the duration of the medication, so we introduced probiotics to his diet ...). We could not tell whether our son was in pain, or afraid, or make any connection with him (although he did cry louder if we moved away; that was as much feedback as we got). We felt totally inept. Hence the psychologist, who had no insight into it either. I suspect it had something to do with the transition from one stage of sleep to another, but really, that's a fairly uninformed guess (I did read an informative book on sleep when P was very young by William Dement, the title of which escapes me. I thought he was retired, but now I see he has a website at Stanford! Wish I'd thought to check when we were going through all this).
The point is that even when you are attentive to your child's needs, you will not always know what is actually going on, especially with AS kids. I recently heard Carol Gray put her audience on notice that ASD kids might look like they are in neutral, but actually be in a "slow burn", so when they finally ignite, there will have been little warning about the stress that they were experiencing. So I take for granted that I need to be fairly active about monitoring his moods, double-checking, and looking somewhat laterally for clues about his inner state. I also take for granted that there is no guidebook to help me with this process, that sometimes I will miss things, and sometimes I will fret too much. I decided long ago that if I were to err, it would be on the side of generosity; I would rather pay too much attention than too little. The risk is obviously that I, well, micromanage my son's life. But I truly think that I am treading a pretty good balance. I am realising, though, how easily the rest of the world, not privy to my reasoning, will see me as a thoroughly modern helicopter parent. Well I probably am, and I'm certainly anxious enough to be vulnerable to the suggestion. But I'm toughening up and realising that I need to be proud of my attentiveness too; no-one else will give that to him, except of course his father, although even there, he works full-time, so it tends to be me who thinks through the implications of what I notice, and who looks for a course of action in response.
We are nearing the end of his first year at school. His language skills are too good to qualify for formal assistance, and the school disappointed me by being resistant to having professionals come to the classroom. It became clear to me early on that my suggestions would largely be regarded as interference, and the prevailing mode of thought seems to be that if he's not kicking up a fuss, he is fine. Meanwhile, I see the subtle ways in which he is not progressing in his work, or his social skills. I think it is reasonable to be proactive about these things, and have some support now from a report written by an education dept. representative. The question is how to get the school to co-operate with the things that I believe need to be incorporated into his curriculum.
Tuesday, September 14, 2010
Food!
Open morning in P's classroom. I often find these sorts of occasions to be the hardest, when I see him amongst his peers; usually, despite my enthusiasm for his progress and my faith that he is by and large managing well, some gulf that I hadn't expected becomes apparent. Well this morning, there were no sad surprises. Indeed, there were some new, positive things. He really seems to be enjoying the little story books that he makes, and is sharing them with us to a new degree, in that his explanations of what is happening on the page seem more coherent. Actually, the pages themselves seem more coherent too. They are all on his favourite themes: Ben 10, Hot Wheels, stuff like that. There are no narratives; he is modelling them on the fanzines we give him, with mazes, spot the difference, etc. And also on the I-Spy books. So they are coherent in that way, all discreet, contained choices, & I am delighted that his efforts are taking a shape that he can be proud of and share with others. My memo to self, though, was to try to encourage some more rudimentary storytelling at home. Although he clearly enjoys these sorts of texts, I have a feeling that stories present difficulties because of his confusion about time (amongst other reasons of course). So I don't think I would be foisting something on him that he doesn't want, but rather helping him to understand the difficult area of temporality, not to mention causality.
I am so aware of how dreadful I must sound when I put this into the public domain, but the hardest thing this morning was his breath, which was akin to gorgonzola. His diet is so utterly shocking, he has had almost permanent halitosis for nearly 4 years. I am hoping that other parents of ASD/AS kids have some understanding and maybe sympathy for me here! Every time I leaned in to hear his tiny voice through the chatter of about 20 parents, children and also younger siblings, I was hit with a foul blast, which, besides being physically hard to deal with, seems to hit an alarm in my brain every time I smell it, that announces that I am failing my son's health needs big time. So I missed parts of what he had to say, which was not so bad, as he was clearly tiring from all the effort. But it did make me irritable. Bad, bad mother ...
Briefly, then, the food thing. I breastfed both boys for extended periods, and wasn't worried when P showed little interest in solids around the 6-month mark. The nurses started getting upset around 1 year, but not me. A few months later he was eating a daily meal of scrambled eggs and strawberry yoghurt. After a few months, this changed to something else. Fresh vegetables and fruit were never on the agenda, so we started making fresh juice, figuring it was better than nothing. Even after his diagnosis, I thought I was just patiently waiting out the picky toddler years, until I heard a dietician who specialises in ASD give a talk. There, I heard about the "white diet", that kids on the spectrum are capable of harming their own health rather than give into hunger, and the comments from parents at the ends of their tethers. That was a bad, bad night.
We made an appointment with this dietician, and have had a few more over the years. Patience is her main message, as forcing the issue will produce anxiety in the child, but keep offering him choices. At the last consultation, she told us that he needed desensitisation, because he was phobic about food; indeed he is. Following a suggestion from a book last year, I put some dried fruit in a clear container in his kinder lunch, but forgot to warn him it was there. Come lunchtime, I get a call to say he has vomited. He tells me it was the sight of the fruit. Fine, desensitise him. Get him to play with, but not expect him to eat, a variety of foods. She was to set up a small clinic, but it hasn't happened. And I haven't done anything at home. Because to supervise 2 children, keep calm when one is extremely reticent, & really needing 1-on-1 attention, is a recipe for conflict in this house. And then, there are only so many therapies you can manage at any 1 time. We recently started an intense specialist gym program, taking over from the years of OT, with some intermittent speech, and social skills sessions with his S. I have been to 2 all-day ASD workshops in recent months, & will attend another 2-day workshop next month. I try to produce various supportive visual documents for him at school, do a bit of reading ... there's only so much I can sanely fit in. So without professional help, I try to simply tolerate giving him almost nothing but bread, crackers, and plain pasta with bought tomato sauce. At least every morning he has a Pediasure and banana smoothie, but that can be touch and go. We do cook fruit and vegetables into muffins, but the amounts are tiny, and the reasons for rejecting the muffins myriad. I hide a seed mix in biscuits sometimes, but that is the extent of our success with concealing things; he is so sensitive to texture, almost nothing gets past him. And he hasn't touched juice for 2 years. In short, if it's not coated in sugar, we can't get anything "healthy" into him.
I keep trying to drop hints to OTs and other professionals that they would make a mint if the could find a financial backer and open up a food clinic locally for families like ours!
I am so aware of how dreadful I must sound when I put this into the public domain, but the hardest thing this morning was his breath, which was akin to gorgonzola. His diet is so utterly shocking, he has had almost permanent halitosis for nearly 4 years. I am hoping that other parents of ASD/AS kids have some understanding and maybe sympathy for me here! Every time I leaned in to hear his tiny voice through the chatter of about 20 parents, children and also younger siblings, I was hit with a foul blast, which, besides being physically hard to deal with, seems to hit an alarm in my brain every time I smell it, that announces that I am failing my son's health needs big time. So I missed parts of what he had to say, which was not so bad, as he was clearly tiring from all the effort. But it did make me irritable. Bad, bad mother ...
Briefly, then, the food thing. I breastfed both boys for extended periods, and wasn't worried when P showed little interest in solids around the 6-month mark. The nurses started getting upset around 1 year, but not me. A few months later he was eating a daily meal of scrambled eggs and strawberry yoghurt. After a few months, this changed to something else. Fresh vegetables and fruit were never on the agenda, so we started making fresh juice, figuring it was better than nothing. Even after his diagnosis, I thought I was just patiently waiting out the picky toddler years, until I heard a dietician who specialises in ASD give a talk. There, I heard about the "white diet", that kids on the spectrum are capable of harming their own health rather than give into hunger, and the comments from parents at the ends of their tethers. That was a bad, bad night.
We made an appointment with this dietician, and have had a few more over the years. Patience is her main message, as forcing the issue will produce anxiety in the child, but keep offering him choices. At the last consultation, she told us that he needed desensitisation, because he was phobic about food; indeed he is. Following a suggestion from a book last year, I put some dried fruit in a clear container in his kinder lunch, but forgot to warn him it was there. Come lunchtime, I get a call to say he has vomited. He tells me it was the sight of the fruit. Fine, desensitise him. Get him to play with, but not expect him to eat, a variety of foods. She was to set up a small clinic, but it hasn't happened. And I haven't done anything at home. Because to supervise 2 children, keep calm when one is extremely reticent, & really needing 1-on-1 attention, is a recipe for conflict in this house. And then, there are only so many therapies you can manage at any 1 time. We recently started an intense specialist gym program, taking over from the years of OT, with some intermittent speech, and social skills sessions with his S. I have been to 2 all-day ASD workshops in recent months, & will attend another 2-day workshop next month. I try to produce various supportive visual documents for him at school, do a bit of reading ... there's only so much I can sanely fit in. So without professional help, I try to simply tolerate giving him almost nothing but bread, crackers, and plain pasta with bought tomato sauce. At least every morning he has a Pediasure and banana smoothie, but that can be touch and go. We do cook fruit and vegetables into muffins, but the amounts are tiny, and the reasons for rejecting the muffins myriad. I hide a seed mix in biscuits sometimes, but that is the extent of our success with concealing things; he is so sensitive to texture, almost nothing gets past him. And he hasn't touched juice for 2 years. In short, if it's not coated in sugar, we can't get anything "healthy" into him.
I keep trying to drop hints to OTs and other professionals that they would make a mint if the could find a financial backer and open up a food clinic locally for families like ours!
Monday, September 13, 2010
Brotherly love?
So I see from the stats that a handful of people across the globe have alighted upon this blog; what I don't know of course is how long they lingered, what they thought, or whether any of them/you will come back, or have already. Hello out there! Any frazzled mothers amongst you?
We separated the boys on Saturday. When I get time alone with P, I get so excited! I feel like a kid going o
n a play date! He was coming down with a cold, so we kept it low-key, staying at home. But we chatted, played games together, drifted apart at times & came back in a lovely, natural rhythm. This is utterly exceptional. I must sound rather shrill, but the little guy manages to defeat every single interaction that I have with his older brother. If P tries to tell me something, S starts to talk over the top of him. I try to tell P something, S interjects with his own topic of interest. If P idly picks up an object, S snatches it out of his hand. He is so smitten with his big brother that he has to have whatever he has, or do whatever he is doing, at the same instant! And S does not respond to gentle attempts to redirect his behaviour, so these disruptions frequently end in tantrums, with P completely deprived of attention, & often nursing an injury to boot. It is so, so, draining, & particularly unfortunate given that P is so in need of help with communication, and with understanding social behaviour. He learns a lot from having a brother, it is true, and I'm sure someone might think that of course the little brother behaves like this, siblings of children with special needs have to fight for attention! But explaining his behaviour this way is just not overly convincing.
At any rate, Q rang late in the afternoon to say he was on the way home. I told P they were coming back in about 20 minutes. The passage of time is one of the most confusing, stressful aspects of P's life. We have tried making charts & timetables & we have various timers around. Timers he understands, and at last he has the concept of how many "sleeps" he must wait for some event; lately he has been asking me if "after" is "in front" or "behind", so he is starting to process these concepts in his own way, but I have not found much that helps (and anyone who has read this far who has any suggestions, please share them!). I thought it would be a good idea to "show" him 20 minutes on his timer so that he could get some sort of feel for what that unit of time felt like. I turned the timer around, knowing he was starting to count in multiples, & counted to 20 by 5s, as they are drawn on the timer. Dad came home a few minutes early, we looked at the clock. End of simple little shared learning activity.
That evening we decided that they could stay up a bit later as long as they played quietly in their bedroom. P jumped up, said "20 minutes" & set the timer, counting in multiples of 5. When it went off, he came & got us, & put himself in bed. This must sound so trivial; my heart just welled with happiness to see him implementing something that I'd shown him. It speaks such volumes to me about his love & respect for me, & I can't say how greatly I am honoured to receive these things from him. But the sadder source of my emotion is just how rare these transactions between us are; if S had been here in the afternoon, he would have interrupted, fought, tried as hard as he could to disrupt that connection. Indeed, when P suggested the timer that night, S almost compulsively cried out "no!", but seemed to lost interest, mercifully. I put the timer on a very high shelf even so. For what it's worth, within 5 minutes of S returning home that afternoon, I'd had to take him to the bathroom & restrain him after he started fighting with P, even with their father there facilitating their play. And the next morning began pretty much the same way, I can't even remember why. So that charging of the batteries that I got last week is wearing out now.
There seems never to have been an opportunity for me to weave between the 2 boys, giving one a bit of this, the other a bit of that, bringing them together for a bit of something else. S has from the beginning been so fixated on the big one that everything for him seems to be through the lens of "am I getting what he is getting?", rather than "do I want this?" I have a very strong memory of S at about 4 months old, in the baby carrier on my chest one rainy day. I had just managed, somehow, to dress P, a toddler with compromised motor skills, in a puddle suit and boots, with the said carrier filled with baby on while my back ached as usual. I put up the umbrella and out we went to find puddles. S was watching P intently. P found the first puddle, readied himself, and jumped, splash, both feet in. S, to my amazement, let out a heartfelt laugh. He was delighted. It was the first time I'd realised that already, he had figured out that this other little person was part of his life. Little did I know how complicated that intense love would be for us all to live with.
As I write, I am thinking that I need to increase the sessions with the OT, and perhaps talk to a psychologist. I did last year, & got some hints, mainly about anger management, & also about ensuring that I treated the boys equally. This is excruciating, as it means, apparently, even allowing the little one to copy P's dreadful eating habits (like many kids on the spectrum, P's diet is dreadful, no doubt the subject of a future post). I needed to trust, she said, that the neurotypical (NT) child will eventually grow bored with the limitations that the older one has set for himself & move on to try new things. I feel there is a lot more I could say about this, but it might be time for us to do a bit of painting, which I actually promised a couple of days ago, so it's very overdue!
We separated the boys on Saturday. When I get time alone with P, I get so excited! I feel like a kid going o
At any rate, Q rang late in the afternoon to say he was on the way home. I told P they were coming back in about 20 minutes. The passage of time is one of the most confusing, stressful aspects of P's life. We have tried making charts & timetables & we have various timers around. Timers he understands, and at last he has the concept of how many "sleeps" he must wait for some event; lately he has been asking me if "after" is "in front" or "behind", so he is starting to process these concepts in his own way, but I have not found much that helps (and anyone who has read this far who has any suggestions, please share them!). I thought it would be a good idea to "show" him 20 minutes on his timer so that he could get some sort of feel for what that unit of time felt like. I turned the timer around, knowing he was starting to count in multiples, & counted to 20 by 5s, as they are drawn on the timer. Dad came home a few minutes early, we looked at the clock. End of simple little shared learning activity.
That evening we decided that they could stay up a bit later as long as they played quietly in their bedroom. P jumped up, said "20 minutes" & set the timer, counting in multiples of 5. When it went off, he came & got us, & put himself in bed. This must sound so trivial; my heart just welled with happiness to see him implementing something that I'd shown him. It speaks such volumes to me about his love & respect for me, & I can't say how greatly I am honoured to receive these things from him. But the sadder source of my emotion is just how rare these transactions between us are; if S had been here in the afternoon, he would have interrupted, fought, tried as hard as he could to disrupt that connection. Indeed, when P suggested the timer that night, S almost compulsively cried out "no!", but seemed to lost interest, mercifully. I put the timer on a very high shelf even so. For what it's worth, within 5 minutes of S returning home that afternoon, I'd had to take him to the bathroom & restrain him after he started fighting with P, even with their father there facilitating their play. And the next morning began pretty much the same way, I can't even remember why. So that charging of the batteries that I got last week is wearing out now.
There seems never to have been an opportunity for me to weave between the 2 boys, giving one a bit of this, the other a bit of that, bringing them together for a bit of something else. S has from the beginning been so fixated on the big one that everything for him seems to be through the lens of "am I getting what he is getting?", rather than "do I want this?" I have a very strong memory of S at about 4 months old, in the baby carrier on my chest one rainy day. I had just managed, somehow, to dress P, a toddler with compromised motor skills, in a puddle suit and boots, with the said carrier filled with baby on while my back ached as usual. I put up the umbrella and out we went to find puddles. S was watching P intently. P found the first puddle, readied himself, and jumped, splash, both feet in. S, to my amazement, let out a heartfelt laugh. He was delighted. It was the first time I'd realised that already, he had figured out that this other little person was part of his life. Little did I know how complicated that intense love would be for us all to live with.
As I write, I am thinking that I need to increase the sessions with the OT, and perhaps talk to a psychologist. I did last year, & got some hints, mainly about anger management, & also about ensuring that I treated the boys equally. This is excruciating, as it means, apparently, even allowing the little one to copy P's dreadful eating habits (like many kids on the spectrum, P's diet is dreadful, no doubt the subject of a future post). I needed to trust, she said, that the neurotypical (NT) child will eventually grow bored with the limitations that the older one has set for himself & move on to try new things. I feel there is a lot more I could say about this, but it might be time for us to do a bit of painting, which I actually promised a couple of days ago, so it's very overdue!
Friday, September 10, 2010
The present and the other early days
Otherwise, more of the same old ups & downs here. Maybe now is time for that return to the early days with S. I was 7 months pregnant with him when we received P's diagnosis. I was already worn down, almost worn out; it's pretty obvious how that would have added to the load. Except that, for some reason, I was never concerned that S would also be at risk; blissful ignorance really, since the risk does increase with every birth, and the severity of the autism often increases too. And thankfully I've not had to say I was wrong about that, although, as I've indicated, I've had many wobbly moments since, wondering if there was something about him that I was missing. And I should say that "thankfully" indicates not any dissatisfaction or other slight upon my oldest, beautiful boy; it is a reflection on my ability, or fairly, their parents' abilities, to collectively meet their needs. I do not know how I could have survived 2 children so close in age, with so little support for myself, and such high needs from them. Not that S turned out to be an easy baby, but the issues were different.
A slightly less easy birth, and a lot of anxiety from me about leaving P for the 1st time ever, & not knowing how his father would cope without me overseeing. Sounds egotistical, but I was with him day & night & he was a boy who fell apart at the drop of a hat. I was already behind the 8-ball before I left hospital. And feeding S was painful, but no-one seemed interested, assuming, I suppose, that since I'd fed one, I'd work it out. But I didn't, & within days was crying in misery at the sight of my hungry baby. Again! Different issues this time; S, it turned out, didn't have enough lower jaw to attach firmly. I'll skip the technicalities, but I was advised it was a matter of waiting for it to grow over the next 5-6 weeks. And indeed that pretty much sorted it out then, but the problem, bizarrely, came back a few months later -- maybe the topic of another post, maybe not.
Already tired, already in pain, already questioning my own adequacy. And in the midst of it all, that wonderful introduction to the world of special services for P, trekking to this or that office or clinic, sometimes with the assistance of the one saintly family member who ever offered me help, or sometimes paying for some assistance with the kids (I'd started doing this around the house when P was about 7 months old -- fantastic that we could afford it, but in my mindset, more proof of my inadequacy). So I'd be feeding or jiggling an irritable baby while my back burned & P bounced around a room somewhere or other stressed & desperate to escape, & me barely able to put out a hand or offer anything to calm him because my hands were well & truly full. So therapy seemed to consist of places & activities that deeply upset my very upsettable ASD child. And then we'd make it out & for hours afterwards we would all live with his disturbance.
I lost a lot of weight when I breastfed P, around 6-7 months in, but this time, in sheer exhaustion, I would down huge quantities of chocolate, generally in the early afternoon, just to try to keep myself moving. I've never been one for illicit drugs: I suppose someone else in my situation might have turned to something a bit more pharmacological! The days were absolutely relentless. I could barely get S to sleep, & he would wake up quickly if I put him down. P still needed a sleep, & as with all transitions, it would begin with a tantrum. And now carrying S constantly, he couldn't get as much of me as he wanted, which exacerbated everything. I bought a wrap so that I could carry S on my back, but only wore it for the 1st nap of the day, as I was never confident to put it on when I was alone; his father would help me into it before he left for work. Half an hour of sleep, and he was awake again. That was all the time I got, face to face, with my toddler.
So, nature or nurture? Plenty of incriminating evidence here, isn't there? Mother not coping, of course baby will pick this up! Ah, but of all the things I castigate myself for, I absolutely know that the baby brings its own business to the table. I guess you could say that with his temperament and the realities of his new-born world, it was not a recipe for harmony.
Thursday, September 9, 2010
The Kinder Conundrum
Yesterday late morning I began preparing us both for the inevitable battle about attending kinder that afternoon. When I say inevitable, it has only been 3 sessions, but his distress is palpable. (A brief aside: gee it would be nice if kinder staff would refrain from snide criticisms when a child doesn't settle in well, all but accusing the parent of setting him up for failure by doing this or that, or, mainly, by not leaving promptly! When my child is distressed I absolutely reserve the right to stay a bit longer for comfort, not to mention to observe what it happening in the room. Oh, that I learnt to be so forthright with the years of dreadful drop-offs & pick-ups I had with P!). For the hours after we got home, he got much attention, we bought strawberries out of season for the fruit tray, new books from the library ... and then it was time to go. He is amazingly articulate compared with his older brother, & clear as crystal, if a tiny, breaking voice from a face pressed into my shoulder can be any such thing, told me he didn't want to go first because of rejection by a particular boy of whom I know he is very fond, & then because nobody wants to play with him. I did my best to respect his feelings & to give him some positive thoughts & strategies, then to assure him that nothing fun would be happening at home, then to bribe him with smarties if he went. I ended up carrying him sobbing. He didn't fight, but he didn't want to go.
I spent time looking at his kinder book with him. Some other boys came over. He relaxed, but when he spoke to one of them, a rather quiet little boy, he talked at full volume about 2 inches from his face. The boy just turned around & went to another activity. Eventually I had to just hand him over sobbing. I spent the time at home distracted & sad. When I picked him up, he was a different child. Apparently one of the teachers engaged him in a conversation about Bakugans, & that put him back into familiar territory. He was joyful, light-hearted, friendly, adorable. He told anyone who would listen that he was going home for his special treat, even the little boy who had rejected him, & who just looked away; I have to say that he doesn't seem to have very well developed social skills himself. He said heartfelt farewells to everyone he passed. And when outside, tried to climb the fence as he'd seen this little boy do many times; he does this after every session.
Shame that I got up this morning to a huge tantrum, but my goodness, how much easier it is to take an out of control child into another room and help them quieten when you've had some positive experience not long before. I think what gets to me are the long, long stretches where nothing seems to get better, or the same old difficulties keep coming back, and I feel like I must simply be doing a very bad job! But seeing my little boy happy & relaxed really gave me a shot.
I spent time looking at his kinder book with him. Some other boys came over. He relaxed, but when he spoke to one of them, a rather quiet little boy, he talked at full volume about 2 inches from his face. The boy just turned around & went to another activity. Eventually I had to just hand him over sobbing. I spent the time at home distracted & sad. When I picked him up, he was a different child. Apparently one of the teachers engaged him in a conversation about Bakugans, & that put him back into familiar territory. He was joyful, light-hearted, friendly, adorable. He told anyone who would listen that he was going home for his special treat, even the little boy who had rejected him, & who just looked away; I have to say that he doesn't seem to have very well developed social skills himself. He said heartfelt farewells to everyone he passed. And when outside, tried to climb the fence as he'd seen this little boy do many times; he does this after every session.
Shame that I got up this morning to a huge tantrum, but my goodness, how much easier it is to take an out of control child into another room and help them quieten when you've had some positive experience not long before. I think what gets to me are the long, long stretches where nothing seems to get better, or the same old difficulties keep coming back, and I feel like I must simply be doing a very bad job! But seeing my little boy happy & relaxed really gave me a shot.
Wednesday, September 8, 2010
Competing needs
This morning's school drop-off was a dog's breakfast. We arrived early enough for a before-school play, which P desperately wants, and which consists of him imitating some toy or computer game but with no discernible structure or goal; however, no matter who is there or what he does, it almost always ends with him exclaiming, "but I didn't get to play anything!", & subsequent degrees of melt-down. He has had trouble with transitions forever, and this seems to be the latest manifestation. I try to figure out what the essential components of this play session are for him, but haven't cracked it yet. I know he has a good friend who plays these "games" with him at recess, but it seems to be parallel play at best. He also asks me to join in sometimes, so I try to take advantage of the situation by applying a few Floortime principles, and this is where my frustration really starts to overtake me. He starts to respond, but S does his level best to disrupt. He has of course been included in all negotiations about play but almost compulsively opposes every suggestion or action that is not his own. And for me, it's not just about a mediocre play session, but about a lost opportunity to open up P's horizons.
I have not delved as deeply as I would like into the literature on sibling rivalry. Suffice to say that it dominates much of our daily life. It's hard to disentangle the specifics of the sibling relationship from the other effects of S's temperament on family life. I have heard Tony Attwood say that in a household with an autistic individual, the whole group will march to the beat of the autism drum. In our house, that has not been true since S was born. His drum is by far the loudest.
But worse was to come. S knows when we are leaving to wait at the school gate for me with his scooter, but today I saw him in the distance going through by himself. I yelled, and a couple of mothers leapt into action. By the time I got there, one had his scooter, one was dragging him from a nature-strip back to the path. He was beside himself. He collapsed into my arms and heaved with emotion. As one of them said, all the yelling probably frightened him, but knowing him as I do, anybody taking hold of his scooter, giving him an order, stopping him from going about his business, combined with the suddenness, would have made him volcanic with rage. He at least accepted comfort from me, and clearly there was no place for a telling off after all that distress, but it seemed necessary to say something about what had happened. When he seemed to be calm, I reminded him, in a gentle voice, that he needed to wait for Mummy at the gate. "No!" he yelled. A few more attempts to make the point calmly, more defiance from him. My stress levels were somewhat elevated by this, & the previous stuff in the playground, & a little by the parade of mothers eyeing us sprawled motionless on the footpath surrounded by scooters & helmets (this time not as bad as many of the public parenting disasters I've had. Perhaps I'll elaborate some time). And so despite myself I did eventually snap "then you won't be allowed to ride your scooter to school any more!" Then I got hold of myself again. Sometimes the days feel like extended attempts at provocation. Too often in the past they got the better of me. The older the boys get, the less exhausting they are, & the less this is a problem. But still, the theme that I think will keep coming back through the posts makes its appearance here; I do try, try, try to model calmness to my children, but so often my efforts seem utterly inadequate. I often feel like there is just not enough of me to do this job properly.
I've asked the therapist we see about ODD, & she says that besides being too young for a diagnosis, she suspects that it's more about emotional regulation with S, feelings that are just too big to handle. That certainly makes a lot of sense to us: people are always saying "it's his age", but his parents remember a baby who howled with anger from very, very early in his life. Perhaps next time I'll go back to those early days with him.
I have not delved as deeply as I would like into the literature on sibling rivalry. Suffice to say that it dominates much of our daily life. It's hard to disentangle the specifics of the sibling relationship from the other effects of S's temperament on family life. I have heard Tony Attwood say that in a household with an autistic individual, the whole group will march to the beat of the autism drum. In our house, that has not been true since S was born. His drum is by far the loudest.
But worse was to come. S knows when we are leaving to wait at the school gate for me with his scooter, but today I saw him in the distance going through by himself. I yelled, and a couple of mothers leapt into action. By the time I got there, one had his scooter, one was dragging him from a nature-strip back to the path. He was beside himself. He collapsed into my arms and heaved with emotion. As one of them said, all the yelling probably frightened him, but knowing him as I do, anybody taking hold of his scooter, giving him an order, stopping him from going about his business, combined with the suddenness, would have made him volcanic with rage. He at least accepted comfort from me, and clearly there was no place for a telling off after all that distress, but it seemed necessary to say something about what had happened. When he seemed to be calm, I reminded him, in a gentle voice, that he needed to wait for Mummy at the gate. "No!" he yelled. A few more attempts to make the point calmly, more defiance from him. My stress levels were somewhat elevated by this, & the previous stuff in the playground, & a little by the parade of mothers eyeing us sprawled motionless on the footpath surrounded by scooters & helmets (this time not as bad as many of the public parenting disasters I've had. Perhaps I'll elaborate some time). And so despite myself I did eventually snap "then you won't be allowed to ride your scooter to school any more!" Then I got hold of myself again. Sometimes the days feel like extended attempts at provocation. Too often in the past they got the better of me. The older the boys get, the less exhausting they are, & the less this is a problem. But still, the theme that I think will keep coming back through the posts makes its appearance here; I do try, try, try to model calmness to my children, but so often my efforts seem utterly inadequate. I often feel like there is just not enough of me to do this job properly.
I've asked the therapist we see about ODD, & she says that besides being too young for a diagnosis, she suspects that it's more about emotional regulation with S, feelings that are just too big to handle. That certainly makes a lot of sense to us: people are always saying "it's his age", but his parents remember a baby who howled with anger from very, very early in his life. Perhaps next time I'll go back to those early days with him.
Tuesday, September 7, 2010
The early days
Since my post yesterday, S has had one lovely play session with a boy we haven't seen for a while, & one reasonable session with a couple of other kids. Also a meltdown that resolved without hitting (from him) & screaming (from me!). I therefore feel some relief, & a bit more confidence that the things we are doing to help him manage his strong emotions are actually working for the most part.
So maybe this is a good time to go back in the mists of time, all of 6 years, to the beginning; the birth of P. The mists of time is not entirely facetious; I don't think, apart perhaps from my own childhood, that I have ever lived each minute so intensely, so ... minutely, as I have with young children. It feels like a very, very long stretch.
After an uneventful pregnancy and a "textbook" labour, my new life as a mother began to unravel very quickly. I remember that my partner, Q, took 2 weeks off work when P was born, & that early in the 2nd week, as I thought about how I would manage with him gone, I started to experience a sinking feeling: things were not panning out as I had expected. I was an older mother, P was planned & very much wanted, & Q & I had been together a long time, felt we'd done a lot of things together & that we were "ready" for this new phase. I had listened carefully (I thought) to other mothers' tales of being pushed to the limits, and concluded that I simply had to be there 100% & I would be fine; no part-time employment, no worrying about housework, no stretching myself too thin in any way, & making time for myself to be replenished on the weekend; I had a dancing class timetable! We had a plan, & I thought that would do the trick.
The pain of childbirth was beyond my capacity to imagine, and yet in the early months it paled compared to the inexplicable agony in my shocked nipples, the needling misery of the blisters that followed as the pain clouded my ability to attend to P's attachment, & then the burning, throbbing ache of mastitis, again & again. Having always been prone to back pain, I discovered, despite years of yoga & diligent pilates practice during pregnancy, that carrying such a light bundle almost without break was quickly taking a toll on me too. I had expected times when he would lie on a bunny rug while I gazed down & we cooed lovingly at each other. And I would be able to leave him there for a minute or 2 while I nicked to the toilet or put the kettle on or threw together a sandwich, maybe even stretched a bit by his side. And then, as a lactation consultant suggested, I might feed him to sleep and gently snuggle down next to him & rest myself.
Six years on, I'm not ready to laugh yet at my own delusions.
And the sleep deprivation. I had thought that jet-lag was as tired as I would ever get. I was so monstrously tired. I ached, pretty much everywhere, I could barely perform my own bodily functions without the accompaniment of frantic screaming. When I did try to nap, I was without exception woken within minutes by an ear-piercing scream. And I would go to the new parent sessions with the maternal health nurse, or the private new mother sessions I attended with a midwife who was committed to natural parenting practices. At the former, I paced the back of the room while most babies slept in prams & bassinettes (that was when I could get there at all). At the latter, I bounced on an exercise ball, or got there early to nab the only beanbag so that my back could rest while P napped upright with his head on my shoulder, while the others lay their babies quietly on blankets & cushions on the floor, their mothers' hands free to do ... anything they needed to do!
I was quickly exhausted, like a marathon runner at the finish line, but I was expected every minute of every day to get up & run the whole race again ... I remember early in the midwife's group talking about hunger & breastfeeding. After the others had described their ravenousness, I offered, bemused, that I really didn't feel hungry at all.The midwife, usually keen to explore any statement offered, simply declared that I was so far from meeting my own needs that my body was suppressing its own sensations; from that, I understood that I was in survival mode.
On top of the physical depletion quickly came the debilitating doubt in my own abilities. I was failing to keep my baby calm & content. Well no, I was not failing. I was constantly working, working to calm him. But my efforts seemed so enormous; was I missing something? How were other people managing not to be so utterly spent? Obviously, there is an element here of me being harsh on myself, because logically I know that many new parents are plunged in over their heads. But somehow, it seemed that we sunk deeper, & for longer, than anyone we knew. I had been inclined before birth towards what I would loosely term principles of attachment parenting, so amongst my tactics for minimising stress, I had told myself that I wouldn't have battles about feeding, sleeping, forcing the baby into prams or other contraptions when I knew he'd probably be happier on my chest. I really couldn't have done more with my own body to comfort him. And it still didn't work.
I kept looking for help; classes, books, visits from consultants ... William & Martha Sears' Fussy Baby Book was a huge consolation. I instantly felt less incompetent. But I slowly but surely began to feel alienated from other mothers around me. Nobody seemed to be on the same page. Q & I both found ourselves staring at family scenarios when we went out, drawn despite ourselves to the contrast with our own new life. And it was hard not to find ourselves lacking.
Fast forward to P at 2. Routine checkup with the maternal nurse; she is concerned because she can't engage him at all. I tell her about how hard I find my life with him, his little obsessions, how hard I have to work to keep it all together. I know she is thinking autism, but at that stage in my life, autism was children rocking in a corner with no engagement with the world, and no emotional attachment to their caregivers, which was certainly not my boy. I deflected her concerns & left. A week later she rang & said she hadn't been able to forget about it, had consulted with colleagues, & had some names of pediatricians for me. Even if it wasn't autism, she said, I had indicated that I was struggling to meet his needs & I could do with advice anyway. That convinced me to make an appointment.
And of course, I have discovered well & truly that an autism spectrum disorder can mean a great many things. And with hindsight, it explained so much of those chaotic first 2 years.
So maybe this is a good time to go back in the mists of time, all of 6 years, to the beginning; the birth of P. The mists of time is not entirely facetious; I don't think, apart perhaps from my own childhood, that I have ever lived each minute so intensely, so ... minutely, as I have with young children. It feels like a very, very long stretch.
After an uneventful pregnancy and a "textbook" labour, my new life as a mother began to unravel very quickly. I remember that my partner, Q, took 2 weeks off work when P was born, & that early in the 2nd week, as I thought about how I would manage with him gone, I started to experience a sinking feeling: things were not panning out as I had expected. I was an older mother, P was planned & very much wanted, & Q & I had been together a long time, felt we'd done a lot of things together & that we were "ready" for this new phase. I had listened carefully (I thought) to other mothers' tales of being pushed to the limits, and concluded that I simply had to be there 100% & I would be fine; no part-time employment, no worrying about housework, no stretching myself too thin in any way, & making time for myself to be replenished on the weekend; I had a dancing class timetable! We had a plan, & I thought that would do the trick.
The pain of childbirth was beyond my capacity to imagine, and yet in the early months it paled compared to the inexplicable agony in my shocked nipples, the needling misery of the blisters that followed as the pain clouded my ability to attend to P's attachment, & then the burning, throbbing ache of mastitis, again & again. Having always been prone to back pain, I discovered, despite years of yoga & diligent pilates practice during pregnancy, that carrying such a light bundle almost without break was quickly taking a toll on me too. I had expected times when he would lie on a bunny rug while I gazed down & we cooed lovingly at each other. And I would be able to leave him there for a minute or 2 while I nicked to the toilet or put the kettle on or threw together a sandwich, maybe even stretched a bit by his side. And then, as a lactation consultant suggested, I might feed him to sleep and gently snuggle down next to him & rest myself.
Six years on, I'm not ready to laugh yet at my own delusions.
And the sleep deprivation. I had thought that jet-lag was as tired as I would ever get. I was so monstrously tired. I ached, pretty much everywhere, I could barely perform my own bodily functions without the accompaniment of frantic screaming. When I did try to nap, I was without exception woken within minutes by an ear-piercing scream. And I would go to the new parent sessions with the maternal health nurse, or the private new mother sessions I attended with a midwife who was committed to natural parenting practices. At the former, I paced the back of the room while most babies slept in prams & bassinettes (that was when I could get there at all). At the latter, I bounced on an exercise ball, or got there early to nab the only beanbag so that my back could rest while P napped upright with his head on my shoulder, while the others lay their babies quietly on blankets & cushions on the floor, their mothers' hands free to do ... anything they needed to do!
I was quickly exhausted, like a marathon runner at the finish line, but I was expected every minute of every day to get up & run the whole race again ... I remember early in the midwife's group talking about hunger & breastfeeding. After the others had described their ravenousness, I offered, bemused, that I really didn't feel hungry at all.The midwife, usually keen to explore any statement offered, simply declared that I was so far from meeting my own needs that my body was suppressing its own sensations; from that, I understood that I was in survival mode.
On top of the physical depletion quickly came the debilitating doubt in my own abilities. I was failing to keep my baby calm & content. Well no, I was not failing. I was constantly working, working to calm him. But my efforts seemed so enormous; was I missing something? How were other people managing not to be so utterly spent? Obviously, there is an element here of me being harsh on myself, because logically I know that many new parents are plunged in over their heads. But somehow, it seemed that we sunk deeper, & for longer, than anyone we knew. I had been inclined before birth towards what I would loosely term principles of attachment parenting, so amongst my tactics for minimising stress, I had told myself that I wouldn't have battles about feeding, sleeping, forcing the baby into prams or other contraptions when I knew he'd probably be happier on my chest. I really couldn't have done more with my own body to comfort him. And it still didn't work.
I kept looking for help; classes, books, visits from consultants ... William & Martha Sears' Fussy Baby Book was a huge consolation. I instantly felt less incompetent. But I slowly but surely began to feel alienated from other mothers around me. Nobody seemed to be on the same page. Q & I both found ourselves staring at family scenarios when we went out, drawn despite ourselves to the contrast with our own new life. And it was hard not to find ourselves lacking.
Fast forward to P at 2. Routine checkup with the maternal nurse; she is concerned because she can't engage him at all. I tell her about how hard I find my life with him, his little obsessions, how hard I have to work to keep it all together. I know she is thinking autism, but at that stage in my life, autism was children rocking in a corner with no engagement with the world, and no emotional attachment to their caregivers, which was certainly not my boy. I deflected her concerns & left. A week later she rang & said she hadn't been able to forget about it, had consulted with colleagues, & had some names of pediatricians for me. Even if it wasn't autism, she said, I had indicated that I was struggling to meet his needs & I could do with advice anyway. That convinced me to make an appointment.
And of course, I have discovered well & truly that an autism spectrum disorder can mean a great many things. And with hindsight, it explained so much of those chaotic first 2 years.
Monday, September 6, 2010
Introducing us, sort of
My first ever blog post; as far as I am concerned, a public diary. I feel slightly queasy thinking about the exposure. However, my need for clarity and some reassurance about the onerous, overwhelming experience of motherhood, coming from a dysfunctional family myself, with kids who are deviating from the norm, takes precedence over those qualms.
I think a short history of my time as a mother would be appropriate, but it might have to wait. The youngest of my 2 boys (we'll call him S) is a few months away from his 4th birthday. He's home sick from kinder this morning, so my time here is even more limited than usual. Sad to say, though, that his illness is timely, since last week I struggled to get him to his 2 short kinder sessions. I'm pretty sure I know why he didn't want to go; there have been numerous recent comments from him about this kid saying they didn't want to play with him, that one not liking him, another not wanting to go to his house ... When I come in at the end of the session, I often see him looking quite alone, muttering to himself in an angry monologue. This correlates with the child I know at home. I also know from his play with his older brother (we'll call him P) that actually, he won't really join in, share the play, risk not being in charge. I'm pretty sure he is dominating, and possibly frightening, other kids at kinder.
For several months he has been attending a clinic where an occupational therapist attends to his emotional regulation and his social skills. The sessions have been terrific. Much has improved, but things seem to have gone backwards recently. The therapist wants to come to kinder, which I think is great, and on telling the kinder staff, I discovered that they have had concerns about his behaviour for a few weeks too.
When I heard this, I shifted from concerned but proactive to being weighed down by a heavy, dark cloud of anxiety pressing down on me, and a tight, hard fist in my gut. Both very familiar from looking after my oldest child, who was diagnosed with autism just after his 2nd birthday (he is now 6). If I reeled off a list of S's characteristics, he'd be sounding a lot like another ASD case, but suffice to say for the moment that he clearly is not. If there is a name for his problems, it lies elsewhere, and I am certainly not looking for one (although the term "oppositional defiance disorder", at face value, makes a lot of sense to his parents). But I am sorry to confess that much of his angry, demanding behaviour has driven me to frustration and anger rather than sympathy. Let me qualify that by saying that I am his mother, I have not spent the years at war with him! But what I would regard as the commonplace techniques to soothe and redirect difficult behaviour have generally been ineffective, and my sense of competence, not to mention the satisfaction that I might feel from watching my children flourish, has been quite seriously eroded. And now, I feel like I might have more than a "high needs" son on my hands; I'm worried that the difficulties that we have experienced in one form or another since his birth might actually require something closer to the level of intervention and therapy that P has needed.
And on that note, I will take the plunge & commit this to the public eye!
I think a short history of my time as a mother would be appropriate, but it might have to wait. The youngest of my 2 boys (we'll call him S) is a few months away from his 4th birthday. He's home sick from kinder this morning, so my time here is even more limited than usual. Sad to say, though, that his illness is timely, since last week I struggled to get him to his 2 short kinder sessions. I'm pretty sure I know why he didn't want to go; there have been numerous recent comments from him about this kid saying they didn't want to play with him, that one not liking him, another not wanting to go to his house ... When I come in at the end of the session, I often see him looking quite alone, muttering to himself in an angry monologue. This correlates with the child I know at home. I also know from his play with his older brother (we'll call him P) that actually, he won't really join in, share the play, risk not being in charge. I'm pretty sure he is dominating, and possibly frightening, other kids at kinder.
For several months he has been attending a clinic where an occupational therapist attends to his emotional regulation and his social skills. The sessions have been terrific. Much has improved, but things seem to have gone backwards recently. The therapist wants to come to kinder, which I think is great, and on telling the kinder staff, I discovered that they have had concerns about his behaviour for a few weeks too.
When I heard this, I shifted from concerned but proactive to being weighed down by a heavy, dark cloud of anxiety pressing down on me, and a tight, hard fist in my gut. Both very familiar from looking after my oldest child, who was diagnosed with autism just after his 2nd birthday (he is now 6). If I reeled off a list of S's characteristics, he'd be sounding a lot like another ASD case, but suffice to say for the moment that he clearly is not. If there is a name for his problems, it lies elsewhere, and I am certainly not looking for one (although the term "oppositional defiance disorder", at face value, makes a lot of sense to his parents). But I am sorry to confess that much of his angry, demanding behaviour has driven me to frustration and anger rather than sympathy. Let me qualify that by saying that I am his mother, I have not spent the years at war with him! But what I would regard as the commonplace techniques to soothe and redirect difficult behaviour have generally been ineffective, and my sense of competence, not to mention the satisfaction that I might feel from watching my children flourish, has been quite seriously eroded. And now, I feel like I might have more than a "high needs" son on my hands; I'm worried that the difficulties that we have experienced in one form or another since his birth might actually require something closer to the level of intervention and therapy that P has needed.
And on that note, I will take the plunge & commit this to the public eye!
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