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 clichés 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.

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.

Happiness and Depression

This is a post I wrote as a Guest Post for the excellent Black Dog Tribe, the original post, and comments, can be viewed here.

Happiness may appear to be an odd choice of topic when talking about depression.  However, it is the happy times that can throw depressive feelings into the sharpest focus.  It’s ‘easy’ to be depressed on a grey day, when you’ve nowhere to go and no-one to see.  You can wallow in feeling low and distract yourself with your ‘white noise’ activity of choice, be that reading, watching television, dozing or, like me, surfing the net.  How much more difficult it is to be depressed on a lovely, sunny day when you are included in activity with family or friends.  Depression does not pick and choose the days to embrace you and, whilst that grey day may indeed invite depression in, it is just as likely to come knocking at a friend’s birthday party, at your parents’ anniversary dinner or even when you’re pushing your laughing child on a swing.

Never underestimate how difficult it is to feign happiness when your brain is a fog of despair and your heart is as heavy as lead.  Being amongst people who love you should feel safe and warm but it can feel lonely and stressful when your internal monologue endlessly reminds you that you are worthless and don’t fit in.  Smiling and making small talk can cause real emotional pain when every fibre of your being wants to run, run far away from these ‘normal’ people who must be able to see how fake you are, how false, how stupid.  Even those who think they understand and who treat you with care cannot see who you really are – or your own broken image of who you are.

Keeping up the facade of being happy when you are feeling dragged down by depression is not simply difficult, it is bone-crushingly exhausting and, in fact, depressing!  I have found it a good idea when surrounded by family or friends to try and take some ‘time out’ to rest from keeping up the appearance of ‘normality’.  Even if it’s just a few minutes in the bathroom to relax your facade or even shed a tear or two, it can help you cope for a while longer.

When others around you are happy they often feel the need to ‘cheer you up’ and this is particularly true of those closest to you who find your distress hardest to bear.  Explaining why their jokes, kindness and consideration don’t actually make you feel any better, no matter how much you appreciate them trying, gets embarrassing and exhausting so I often ‘pretend’ that yes, I feel better and thank them.  The dishonesty weighs heavily on my heart but I can’t see a better way out of the situation and so I’m back to painting on the facade once again and using all of my mental resources to maintain it.

A final, and perhaps the strangest, aspect of the dysfunctional relationship between happiness and my depression is the feelings I experience when I’m actually happy.  Even during my most severe depressive episodes I can have short periods of being happy or of enjoying myself and this brings on a complex mix of emotions.  I feel a fraud, for my depression can’t be all that bad after all; I feel afraid that if people see me smiling they will not believe I’m ill; I feel uneasy because the feelings of happiness do not sit easily amongst my more entrenched feelings of dislocation and hopelessness; and, above all, I feel sad because I remember a time when happiness was a norm for me and I yearn to have that uncomplicated relationship with happiness again, where I don’t feel the need to analyse or justify the feeling and can just let it happen.

Update 16th October 2012: I can recommend this blog post by The Depressed Moose on a similar topic

Online Support

I have suffered with depression for, I think, about 9 years.  I can’t pinpoint exactly when it started as you don’t just wake up one day with depression; it creeps up on you unawares.  What I can do is pinpoint the exact moment I realised I needed help.  One day I went into the local village shop after dropping the children off at school.  The lady serving that day was a friend and she greeted me, as she always did, with a warm smile and a welcoming hello.  Her easy cheer stopped me in my tracks and I was in tears before I had even made it out of the shop.  I cried all the way home and it was all of a sudden glaringly obvious to me that my reaction to someone else’s happy, relaxed nature was completely abnormal.  I was way more than unhappy; I was so desperately low that someone else being normally, every-day, happy threw my own feelings into such sharp relief that I could no longer ignore them.  I called the doctor as soon as I got home.

I was severely depressed by the time I sought help.  I had been sinking lower and lower each day for months and months and by the time I realised I was virtually catatonic.  My condition was made worse by the fact that I also had extremely low iron levels in my bloodstream, which rendered me physically exhausted in addition to the mental maelstrom I was experiencing.  Each day I got up and got the children fed, dressed and ready for school.  As soon as I’d taken them to school I’d go home and often either go back to bed or sleep on the sofa until it was time to collect them.  After the day I was woken by a phone call from the school fifteen minutes after I should have collected my youngest, I always made sure I set an alarm, even if it was 9.30 in the morning when I went to sleep.  I’d collect the children and then play ‘Mummy’ until after tea, when I’d crash again and my husband would take over for a while.  During this time I tried very hard to ensure the children were cared for.  I always kept the washing up to date and made sure there was food in the house, although going to the supermarket was, and still is sometimes, extremely traumatic for me.  I am conscious though that they did suffer during this, my darkest period as I was not able to interact with them as I should have and I regret that deeply.

The medication the GP prescribed me, antidepressants and iron supplements, gradually dragged me out of the worst of the dense fog but I reached a plateau in my recovery after about six months and I felt I needed more than just medication to help me.  I was fortunate that I was able to (not quite) afford the private psychologist that my GP referred me to.   He was great and really helped me to address some of the issues that were contributing to my illness.  Sadly, part of this process led to the end of my 18 year marriage, which was incredibly painful for all concerned.

I have never returned to that absolute depth of long-lasting, non-functioning depression but nor have I succeeded in achieving the recovery that my GP assured me was possible all those years ago.  I have had periods, some as long as several months, of being relatively symptom free but by and large my depression has stayed with me, colouring all aspects of my life.  I have good days and bad days and have pretty much resigned myself to living with depression for the rest of my life.  I am no longer in a position to be able to pay for therapy and, as therapy on the NHS is virtually non-existent, having online support has really helped me to cope with my condition on a day to day basis.  There is, of course, no joy in knowing that other people also suffer with an illness that drains the pleasure and energy out of them most days, but to know that others understand exactly what you mean when you describe how you are feeling can take some of the pressure off.  Having my feelings validated, affirmed and understood makes me feel more able to keep pushing for the help and support I know I need. 

My illness can often make interacting with people face to face extremely difficult, or even impossible, for me so access to support online has proven invaluable.  I read a lot of mental health blogs and follow many people on twitter that also have various mental illnesses and all of them have helped me at one time or another to feel more ‘normal’ and less isolated.  Online forums, organisations like Mind and SANE and projects like SANE’s Virtual Black Dog all comprise an online community for raising awareness, sharing experiences and providing support.  Certainly for me, support from people who have, or have had, similar experiences to mine means so much as I know it comes from a place of acceptance and understanding.  I am blessed to have a wonderful, close family who try very hard to understand and support me but, as I have written before, sharing too much with those closest to you is not only difficult, it can cause other, knock-on problems that affect your relationships and the dynamics within them.

Blogging is a good way of exploring my own feelings and experiences and to try and make sense of them.  Very often I have started to write a piece thinking it will go in one direction only to discover, as I write, that it veers off at a completely unexpected tangent.  This has occasionally resulted in me revealing perhaps more of my personal experience than I had originally intended, but it almost always helps me have a new insight into how events have impacted on my illness and emotions.  In a way, it’s like the more positive experiences I have had with therapy, in that the process itself can help me to see solutions for myself, rather than having them suggested for me.  I blog mostly for myself, exploring events in writing is a well-known way of coping with difficult situations and emotions, but also for others.  I have had so many positives from reading other people’s stories and from interacting with people online and I hope that reading my blog will make someone else feel that maybe, just maybe, they are not as alone as they thought.

The Elephant in the Room

I have lived with depression for so long now, even I don't know what is "normal" for me any more.  How much more difficult then must it be for those who love me to gauge my mood, to know whether this time the decisions I'm making are based on what I really want or if I'm just recklessly letting others direct my actions without realising it?  The elephant in the room is my illness and they don't want to mention it but are always watching me, judging my behaviour against a scale I can't see; to try and protect me, care for me, stop me spiralling downwards.  As a result I'm defensive, secretive and see slights where none were meant.  Sadly this means I avoid my family a lot of the time.  They live far away (or to be more accurate, I do) so I can't physically see them very often but I even avoid calling so that I don't hear the worry (am I ill? am I well? am I finding things too difficult to cope?) or the judgement (is my partner treating me well enough? have I made yet another bad choice? why don't I call more often, does it mean I'm ill or that I don't care for them enough?) in their voices that is either really there or is there only in my imagination.

I love my family and I know they love me and that their concern is because they love me, not because they are trying to pick fault in my life.  When they suggest things it's because they are trying to make my life easier or better, not because they think I'm doing everything wrong.  Knowing all this why can I not feel it?  Why do I retreat into a defensive, hurt shell and feel that I was right all along and I'm useless at everything - for why else would they need to criticise?  (I'm sure they're not really criticising, it's my own mindset that makes me feel that they are).

When they ask "And how are you?", I want to die.  I feel so guilty for making them worry about me, I feel so pathetic for not showing them that obviously I'm fine; just like everyone else; life? Hell yeah, I can do that! ... only I can't, not really, and they know that just as well as I do.  The elephant is always there, sometimes in the midst of us all making it impossible not to see, even if no-one actually mentions it, other times it wanders off into a corner of the room, not so visible but still there; always there.