Sunday, 9 December 2012

Sudden Realisation

I was chatting with my son in the car this morning about the tragic case of Jacintha Saldanha, the nurse who apparently took her own life after receiving a hoax call from an Australian radio show at the King Edward VII hospital regarding the condition of the Duchess of Cambridge.  In trying to explain to him how falling for a hoax like that could have been the final straw that tipped her over the edge, a sudden realisation came to me.  Curiously, I realised that my ex husband had, in a roundabout kind of way, done me a favour.  By being the man he is and, in my opinion, not capable of effectively parenting our children, he was in the end the reason why I could not take the step that Jacintha Saldanha did.  If I were not here there was no one that could care for my children, most especially my youngest son who has complex needs due to his autism and challenging behaviour.

Don't get me wrong, my ex is not a bad man and he loves our children just as much as I do, I have no doubt of that whatsoever.  However, loving children is not enough to meet their needs, no matter what the saccharin clich├ęs say.  To be a parent, particularly of a child with special needs, you have to do the unpopular things, the difficult things, the messy things and the uncomfortable things.  Yes, of course, taking the children out for fabulous walks on the beach, taking them to see their doting and much-loved grandmother, letting them stay up late and generally having a great holiday with them is fantastic for them and has its place in their lives, but discipline and teaching them how to become responsible adults has to be in there too and unfortunately it is at those things that their father is not so strong.

In all the years we were together and the difficult years when I was raising them alone before I met my new partner, I had always resented my ex for leaving me to be the sole parent while he got to be the good guy and the fun guy.  Now I can see that, frustrating as that was, and still is a lot of the time, it could be the single thing that saved my life.  Had he been a fantastic parent as well as a loving father, and had I felt secure that our children would be well cared for and appropriately parented by him, I might not have had that last thread to keep me tied to life.  I know I am far from a perfect mother and I'm sure there are many parents that would have been better for my children had circumstances been different, but for my children, of the two parents they have, I know they are better off with me.

Depression may rule my life a lot of the time but I try my best to ensure that my children are protected from the worst of it and, whilst I feel a failure a lot of the time, they are proof positive that I can do at least some things right enough of the time for them to be the wonderful people they are.

Thursday, 29 November 2012

Broken

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. 

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.

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!

Monday, 15 October 2012

Alone in a Crowd

Yesterday I took a walk into town, partly to take a photograph for my 365 day project; partly to get some exercise for my foot, which is causing me a lot of pain at the moment; and partly to get away from Star Wars on the television!  I took my book and planned to stop for lunch in town before walking home again.  From the time I left the house I felt as if I was being watched.  This is never a good thing; it seems to be a kind of anxiety-based paranoia that means I constantly feel that people are looking at me and judging me.  I feel desperately unattractive and that other people will be offended by my presence.  At times like this I would love to just be invisible.

I managed to get some nice photographs and even managed to ignore some funny looks as I took this one in town where it was quite busy.  I am trying to use my love of photography to overcome my paranoia and anxiety, with mixed success.  By the time I made it to Costa I was definitely ready to sit down!  I ordered and made my way to a table, being somewhat upset on the way by a man deciding he was going to sit at the table I was heading for and all but pushing me out of the way.  I struggled to concentrate on my book as I was feeling very anxious and conspicuous.  Eating in public is something I have a problem with, even on a good day, so eating when I was feeling so fragile was worse.  I felt guilty for eating and as if everyone was looking at me and thinking "no wonder she's so fat".

Some days I can relax in a busy environment, finding some anonymity in the crowd, but other days, like this one, I feel so devastatingly alone that it is as if there is a big neon sign above my head declaring my pathetic lack of company.  Every where I looked there were couples; families; groups of friends; but no one I knew.  There is a lot of truth in the saying that you can be loneliest in a crowd and that is exactly how I felt.

The feeling was crushingly oppressive, as if the world were closing in on me.  Walking home was difficult as the wish to be invisible was overwhelming.  In town where it was busy was bad enough but once I got closer to home and there were fewer people around it was even worse.  Being lonely in a crowd is horrible but it is preferable to the agonising feeling of walking past the only other person around.  When the road is quiet I feel the most threatened by the few people that are there and, even worse, the people that might be there that I can't see.  I know that my fears are irrational and I know that I am not in the least bit interesting enough for anyone to want to look at me but that doesn't change the feelings of panic and fear that assail me when I am out.  I wish I could just curl up in a corner somewhere and let the world pass me by.

Thursday, 11 October 2012

The Road to Depression

I was delighted to be asked to write a guest blog for Storying Sheffield, a project based at the University of Sheffield about accessible and universal ideas such as narrative, storytelling, history, and the environment.  The story I wrote about my depression can be found here.

Monday, 8 October 2012

Depression and Celebrity

Much has been said today about celebrities and their 'misery lit' autobiographies courtesy of India Knight's column in yesterday's Sunday Times.  I have not read Ms Knight's piece as it languishes behind The Times' prohibitive paywall; I even contemplated paying to read it but it would appear that this is not possible without taking out a year's subscription to the website.  I am almost certain that the last time I purchased a paper copy of The Times I did not have to commit to doing so every day for a year but there you go.

That being the case, I clearly cannot comment on the specifics of Ms Knight's article, although I will, in passing, comment on the unfortunate twitter storm that occurred as a result.  Whoever tweets on behalf of the mental health charity Mind clearly had a bad case of Monday morning-itis and did not really think through what they were tweeting when they appeared to call for followers to attack Ms Knight.  I am certain that the intention was merely to open up the debate but the choice of words was ill-advised at best.  Twitter's 140 character limit is notorious for leading to ambiguity and unfortunately Mind fell into that trap today, I'm sure that this will be a lesson well learnt.

To return to the subject in question, I do not find it at all surprising that many celebrities have suffered with mental illness.  After all, if 1 in 4 people have or have had a mental illness then it stands to reason that mental illness amongst celebrities would be in a similar proportion.  I get the point that these celebrities are writing their books, cleverly released just in time for the Christmas market, purely to make money.  I get the point that having a mental illness could be seen as being the 'in thing' at the moment.  I even get why some people may be getting bored with hearing about the 'struggles' of celebrities who have way more material success than the vast majority of us could ever dream of.

However, I cannot see how someone who has suffered a mental illness could write an honest autobiography and not mention it.  Surely it's a good thing that people who have suffered mental illness no longer feel the need to be dishonest and hide it?  I know that if I were to write a story of my life it would be impossible not to include the depression that has been such a huge presence for the last nine years.

Why should celebrities who have suffered mental ill health feel reluctant to mention it for fear of being accused of 'jumping on the bandwagon'?  Is it because they are perceived not to have any reason to be depressed?  If this is indeed the case then I despair of the stigma around mental ill health ever coming to an end.  Let's get one thing absolutely straight here: depression is an illness; it is not feeling low, having a bad day or even feeling sad for a while.  Depression can take over your life, the symptoms are far more than just feeling sad and no one, not even celebrities, need a reason to be ill.  Can you seriously imagine anyone complaining about celebrities mentioning in their autobiographies that they have survived cancer?  Why then should they feel compelled to remain silent about their depression or other mental illness?

I welcome the freedom with which celebrities talk of their mental illness, even if they then use their experience to make money by writing an autobiography.  If I thought anyone would read it, I would write a book about my own experience - I wouldn't say no to making a bit of money out of my own misery!  The point is, anyone saying they have or have had a mental illness should raise no more eyebrows than someone saying they have cancer, heart disease or diabetes.  Illness is illness, whether mental or physical should not matter.  So if you are one of those who have sighed when yet another celebrity has 'gone on' about their mental illness and maybe passed comment asking "what have they got to be depressed about", please, think again and end the stigma.