So distressed that nothing anyone can say can make me feel better. When they try I push them away, making me seem angry, controlling and unreasonable. I hate myself but I can't stop it because I can't explain why everything is so bad. Can't seem to do anything right, get shouted at or corrected for everything I do. Sometimes real, sometimes in my head. Want to run away ....
So shut down I can't even pretend to feel better to make others feel better. I hurt inside so much and I don't know how to fix it. Trying not to cry, something else I'm failing at. Just want everything to stop.
Thursday 29 November 2012
Tuesday 20 November 2012
Depression and a Child with Autism
If I had a pound for every time I've read or heard that "only special parents are given special children" I'd be rich, and if anyone were ever crazy enough to say it to my face I don't think I'd be responsible for my actions. "Special" children are not given to "special" parents. I am not somehow miraculously transformed into a saintly earth mother just because my son has atypical autism. Having a child that screams obscenities at me and anyone else, lashes out at his siblings (and me on occasion) and throws a temper tantrum every time anyone says "no" to him or his game isn't going his way does not make me a better person. What it does make me is exhausted, depressed, worn down and defeated. It makes me feel like a dreadful parent and a worthless human being. It makes me short-tempered and some days I shout at my poor, miserable son who is making my life a misery along with his own.
Don't get me wrong I'm not blaming my son for his effect on my mental health. His condition is no more his fault than my depression is my fault; if anything, he is less to blame than me as he was born with a lifelong condition, whereas mine has developed gradually over time and I could perhaps have changed things had I understood what was happening earlier. I love my son dearly and it breaks my heart that he is so unhappy and there doesn't seem to be anything I can do to change that right now, no matter how hard I try. He sees every reprimand, no matter how tactfully or gently worded, as a personal attack and cannot understand why everyone is "always getting on at him". His particular form of autism is probably a condition called pathological demand avoidance syndrome, which has only been recognised and described relatively recently. As its name suggests, people with this condition find it very difficult to cope with demands made on them and suffer extreme anxiety when they are not in control of a situation.
My son is thirteen now, an age at which most boys find life a bit difficult to cope with. He will be having hormonal surges and at the same time he is trying to find out where he fits in the world and how far he can push against authority. Add to these normal changes the difficulties in social understanding and panic when confronted by everyday demands brought by PDA and it's no wonder he is unhappy. He cannot understand that his older brother and sister have more freedom, not just because they are older, but also because they do not have his lack of social understanding or lack of awareness of danger.
I would literally tear off my right arm if it meant my son would not find life so very hard. I would give my life for him to be happy and to be able to live life like other people do. Everyone has difficulties in their life; there is no such thing as an easy ride, whatever it may look like from the outside; but his difficulties mean that he doesn't even understand what it is he doesn't understand. He is confused when his behaviour is challenged, he cannot understand that if he hits someone it's not their fault, they didn't make him do it and he could choose to react differently to whatever it was that upset him.
Parenting a child like my son is like walking through a minefield. There is no map, no special sixth sense to work out where the mines are. All I can do is try my best, every minute of every day; all the while knowing that my best is not good enough, I cannot protect him, I cannot teach him how to behave more in line with social norms and I cannot stop him being confused, panicked and angry every time I try to stop him shouting at the top of his voice, throwing things or lashing out at those around him. Strategies to help children like my son include trying to avoid making direct demands and instead trying to use more indirect and negotiative approaches to try to manage their behaviour. This is all very well when trying to get him to put his shoes on or come and eat his tea but when I'm trying to get him to stop hitting someone or otherwise endangering himself or others there is not time for an indirect approach. In such situations all I can do is try to limit the fallout and then try to cope with his overloaded emotions.
My son's behaviour is not his fault and is a direct result of a condition he was born with and that he cannot control so I cannot react in the way I would were he a neuro-typical child. Getting angry with him or shouting at him only exacerbates his panic and anxiety and his behaviour will further deteriorate accordingly. I am no saint, nor am I a perfect mother so sometimes I do both get angry and shout, other times I manage to suppress my own feelings and deal with him calmly. Either way, I am left with emotions and feelings I am unable to process in a healthy way. I am either struggling with suppressed anger, sadness, shock and pain or I'm struggling with guilt, anger, sadness, shock and pain. No amount of understanding of his condition can make the shock and pain less every time he swears at me, hits me or calls me an idiot, a fool, a stupid woman with contempt dripping from his tone. Nothing can take away my pain at his mental pain when he is hitting himself in the head, saying he's stupid and wants to die.
Suppression of my feelings is a guaranteed trigger for my depression and after one of my son's outbursts it can take anything from an hour or so to several days for me to recover, although a feature of his condition means he can switch mood in an instant. I hate myself for being unable to make life better for him and for his brother and sister, who suffer greatly as a result of his behaviour, even though I know intellectually that it's not my fault. I hate myself for letting myself become depressed as a result of his behaviour when I know he can't help how he is. I hate his condition, which seems to be taking more and more of my loving, funny, smart boy away from me every day. I love my son and I wish I could help him instead of being so useless and worthless. My son may be a "special" child but I am just an ordinary mother trying my best, when my best can never be good enough.
For more information on Pathological Demand Avoidance Syndrome, please see the relevant National Autistic Society website pages.
Don't get me wrong I'm not blaming my son for his effect on my mental health. His condition is no more his fault than my depression is my fault; if anything, he is less to blame than me as he was born with a lifelong condition, whereas mine has developed gradually over time and I could perhaps have changed things had I understood what was happening earlier. I love my son dearly and it breaks my heart that he is so unhappy and there doesn't seem to be anything I can do to change that right now, no matter how hard I try. He sees every reprimand, no matter how tactfully or gently worded, as a personal attack and cannot understand why everyone is "always getting on at him". His particular form of autism is probably a condition called pathological demand avoidance syndrome, which has only been recognised and described relatively recently. As its name suggests, people with this condition find it very difficult to cope with demands made on them and suffer extreme anxiety when they are not in control of a situation.
My son is thirteen now, an age at which most boys find life a bit difficult to cope with. He will be having hormonal surges and at the same time he is trying to find out where he fits in the world and how far he can push against authority. Add to these normal changes the difficulties in social understanding and panic when confronted by everyday demands brought by PDA and it's no wonder he is unhappy. He cannot understand that his older brother and sister have more freedom, not just because they are older, but also because they do not have his lack of social understanding or lack of awareness of danger.
I would literally tear off my right arm if it meant my son would not find life so very hard. I would give my life for him to be happy and to be able to live life like other people do. Everyone has difficulties in their life; there is no such thing as an easy ride, whatever it may look like from the outside; but his difficulties mean that he doesn't even understand what it is he doesn't understand. He is confused when his behaviour is challenged, he cannot understand that if he hits someone it's not their fault, they didn't make him do it and he could choose to react differently to whatever it was that upset him.
Parenting a child like my son is like walking through a minefield. There is no map, no special sixth sense to work out where the mines are. All I can do is try my best, every minute of every day; all the while knowing that my best is not good enough, I cannot protect him, I cannot teach him how to behave more in line with social norms and I cannot stop him being confused, panicked and angry every time I try to stop him shouting at the top of his voice, throwing things or lashing out at those around him. Strategies to help children like my son include trying to avoid making direct demands and instead trying to use more indirect and negotiative approaches to try to manage their behaviour. This is all very well when trying to get him to put his shoes on or come and eat his tea but when I'm trying to get him to stop hitting someone or otherwise endangering himself or others there is not time for an indirect approach. In such situations all I can do is try to limit the fallout and then try to cope with his overloaded emotions.
My son's behaviour is not his fault and is a direct result of a condition he was born with and that he cannot control so I cannot react in the way I would were he a neuro-typical child. Getting angry with him or shouting at him only exacerbates his panic and anxiety and his behaviour will further deteriorate accordingly. I am no saint, nor am I a perfect mother so sometimes I do both get angry and shout, other times I manage to suppress my own feelings and deal with him calmly. Either way, I am left with emotions and feelings I am unable to process in a healthy way. I am either struggling with suppressed anger, sadness, shock and pain or I'm struggling with guilt, anger, sadness, shock and pain. No amount of understanding of his condition can make the shock and pain less every time he swears at me, hits me or calls me an idiot, a fool, a stupid woman with contempt dripping from his tone. Nothing can take away my pain at his mental pain when he is hitting himself in the head, saying he's stupid and wants to die.
Suppression of my feelings is a guaranteed trigger for my depression and after one of my son's outbursts it can take anything from an hour or so to several days for me to recover, although a feature of his condition means he can switch mood in an instant. I hate myself for being unable to make life better for him and for his brother and sister, who suffer greatly as a result of his behaviour, even though I know intellectually that it's not my fault. I hate myself for letting myself become depressed as a result of his behaviour when I know he can't help how he is. I hate his condition, which seems to be taking more and more of my loving, funny, smart boy away from me every day. I love my son and I wish I could help him instead of being so useless and worthless. My son may be a "special" child but I am just an ordinary mother trying my best, when my best can never be good enough.
For more information on Pathological Demand Avoidance Syndrome, please see the relevant National Autistic Society website pages.
Saturday 3 November 2012
Control
One thing I have learnt over the years that I have suffered with depression is that my illness is closely linked to how in control of my life I feel. The less in control I feel over what is happening in my life, the more depressed and anxious I become. This correlation has been proven time and again as my life has rollercoastered along. Making the decision to end my marriage was massive and the hardest thing I have ever had to do but it meant I had taken control of an aspect of my life that was making me more depressed by the day. The upswing I experienced as a result of making that decision and my ex-husband eventually moving out (an immensely traumatic time for all concerned though this was) led me to believe that my depression had gone forever. I had a period of several months when I felt in control of my life, happy and free of all symptoms of depression.
Unfortunately this didn't last and the lead up to my father's death saw my symptoms return. This control issue explains why I find my son's behaviour has such an impact on my mood. He has an autistic spectrum disorder, possibly pathological demand avoidance syndrome, which means his behaviour is extremely challenging. He does not understand the different ways people relate to others; for example he would speak to an adult the same way he would speak to a peer, including any and all swear words, terms of derision or contempt and lack of respect. If you are under any illusion about how difficult this is to live with, just imagine all of your ideas and norms about how a child should treat his mother have been completely disregarded and you're part way there. I have always thought of myself as a relaxed, laid-back kind of parent but every time he says "f___ you, bitch" it hurts just as much as the first time. His condition makes me feel that I have little or no control over our home life as his mood dictates the emotional temperature of the household, no matter what strategies I implement. Thus my depression is being constantly reinforced by this feeling of lack of control. Another parent of a child similar to mine summed it up perfectly, "walking on eggshells all the time is preferable to a punch in the face".
Whilst certainly preferable to a punch in the face, always tiptoeing around trying to avoid someone else's temper tantrums is not good for one's mental health. The harder I try not to upset him and to phrase my interactions with him in as gentle and non-provoking way as possible, sometimes just a simple comment can result in a meltdown - which in his case generally means at best a verbal assault or anything up to and including physical assault and destruction of property. This ongoing reinforcement of my depression is something that leaves professionals at a loss when it comes to supporting me. My experience has been that they can see that much of what I go through on a day-to-day basis is intolerable and that the therapies they can offer me won't change that. Advice tends to be to try and "distance" myself from his behaviour so that it doesn't feel so personal; something that I have so far been spectacularly incapable of doing.
My inability to parent my son effectively makes me feel a complete failure, despite the fact that my other two children are responsible teenagers that I am very proud of. I feel I have let my other two children down by not protecting them from their brother's behaviour, which I know causes them a lot of distress too.
Control is a major problem in my life at the moment. My fiance and his son are moving in with us as soon as their house sale completes. There has been hold up after hold up and with each passing day I can feel myself sliding further downhill. The lack of certainty is, quite literally, driving me mad. We cannot afford for them to move in until the house sale is complete and we haven't even got a date yet so my nerves are frayed to bits. Added to that we now have no transport as both of our cars reached the end of their economic lives within a few months of each other. We are trying to pick up a cheap car to tide us over until the house is sold but even that seems to be far more complicated than it should be and after a wasted day spent travelling around the county looking at cars that were potential money pits, I am just about ready to crack completely. The two youngest boys need driven to school on Monday morning so something needs to be sorted out by then!
Unfortunately this didn't last and the lead up to my father's death saw my symptoms return. This control issue explains why I find my son's behaviour has such an impact on my mood. He has an autistic spectrum disorder, possibly pathological demand avoidance syndrome, which means his behaviour is extremely challenging. He does not understand the different ways people relate to others; for example he would speak to an adult the same way he would speak to a peer, including any and all swear words, terms of derision or contempt and lack of respect. If you are under any illusion about how difficult this is to live with, just imagine all of your ideas and norms about how a child should treat his mother have been completely disregarded and you're part way there. I have always thought of myself as a relaxed, laid-back kind of parent but every time he says "f___ you, bitch" it hurts just as much as the first time. His condition makes me feel that I have little or no control over our home life as his mood dictates the emotional temperature of the household, no matter what strategies I implement. Thus my depression is being constantly reinforced by this feeling of lack of control. Another parent of a child similar to mine summed it up perfectly, "walking on eggshells all the time is preferable to a punch in the face".
Whilst certainly preferable to a punch in the face, always tiptoeing around trying to avoid someone else's temper tantrums is not good for one's mental health. The harder I try not to upset him and to phrase my interactions with him in as gentle and non-provoking way as possible, sometimes just a simple comment can result in a meltdown - which in his case generally means at best a verbal assault or anything up to and including physical assault and destruction of property. This ongoing reinforcement of my depression is something that leaves professionals at a loss when it comes to supporting me. My experience has been that they can see that much of what I go through on a day-to-day basis is intolerable and that the therapies they can offer me won't change that. Advice tends to be to try and "distance" myself from his behaviour so that it doesn't feel so personal; something that I have so far been spectacularly incapable of doing.
My inability to parent my son effectively makes me feel a complete failure, despite the fact that my other two children are responsible teenagers that I am very proud of. I feel I have let my other two children down by not protecting them from their brother's behaviour, which I know causes them a lot of distress too.
Control is a major problem in my life at the moment. My fiance and his son are moving in with us as soon as their house sale completes. There has been hold up after hold up and with each passing day I can feel myself sliding further downhill. The lack of certainty is, quite literally, driving me mad. We cannot afford for them to move in until the house sale is complete and we haven't even got a date yet so my nerves are frayed to bits. Added to that we now have no transport as both of our cars reached the end of their economic lives within a few months of each other. We are trying to pick up a cheap car to tide us over until the house is sold but even that seems to be far more complicated than it should be and after a wasted day spent travelling around the county looking at cars that were potential money pits, I am just about ready to crack completely. The two youngest boys need driven to school on Monday morning so something needs to be sorted out by then!
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