Seth - Whats normal anyway?

After such a traumatic birth we were always aware that there was a possibility that Seth would go on to develop problems.

The first sign that he was different to other babies was when he was a few months old.  He was a moody, irritable baby with stiff limbs at times.  At only a few months old he developed an odd habit of moving his hands almost involuntary.  He was doing this for hours at a time, the only way to describe this was if you imagine the movement involved in revving a motorbike.  If he was not ‘revving his invisible bike’ he was holding his hands in tight fists.  Seth was regularly being monitored by a doctor at the Liverpool Woman’s Hospital and at our next appointment we mentioned this strange behaviour and the doctor confirmed that this coupled with Seth’s muscle stiffness could be an early sign of Cerebral Palsy but it would be months if not years before we would be able to ascertain whether this would be the case.

We tried to enjoy Seth, especially when he was a baby but I was already struggling to cope with motherhood, depression and managing my own problems as a result of birth injuries I had sustained.  I became obsessed with Seth’s behaviour and whether he was ‘normal’ or not.  Any strange and quirky behaviour would just add to my worries.  He soon developed a tactile need to stroke and touch hair, fur any thing soft that he could hold pull, rub on his face but my hair was usually the thing he would hold pull and rub on his face the most.  After months it became so bad that if he was distressed, tired, annoyed, moody etc the only thing that would calm him was my hair, he constantly was attached to me via my hair which made for a lot of head soreness.  I was known to eat my tea at times with my head and neck tilted to its side whilst Seth held and rubbed my hair on his face.  He looked almost euphoric at times when he was doing this his eyes was roll in his head with ecstasy that the feeling was giving him.  It was this habit of pulling and playing with my hair that prompted me to cut my own hair off when I suffered from a breakdown.

Bed times were a nightmare and he would go to bed in his cot or bed again attached to me via my hair.  It would take hours on end to settle him whilst he stayed connected to my hair.  Sometimes I would end up falling asleep in bed with him too.  My husband worked long hours and we seen very little of each other as it was but at this point we were lucky if we got to sit down together and have a proper conversation.  Connor was also beginning to suffer now he was becoming emotional, frustrated and angry at Seth behaviour and if I tried to do anything with Connor at all Seth would lash out violently at Connor.

When Seth did sleep he needed very little and would often be awake a midnight and the early hours of the morning wanting to play. 

We tried everything and in the end we resorted to taking turns every other night staying down stairs all night with Seth whilst he played in the hope that he would wear himself out, which would often take until about 4am in the morning however, he would be awake and wanting to get up in the morning for breakfast at 5.30am.  To say we were exhausted was an understatement.

By aged 1 ½ Seth’s behaviour was at its most unmanageable.  I was by this point suffering from postnatal depression and struggling with him, but in hindsight I think at that time anyone may have been tested to their limits with his behaviour.  He was frequently very violent towards me and especially his brother Connor.  His behaviour was extremely volatile and he would change without warning for any reason at all within seconds.  He started to also develop ritual like behaviour and obsessive compulsive habits.   Everything had to be done in an exact way that Seth expected.  From how we got him washed and dressed to how he went to bed, to the routes we drove to work the shop’s etc.  If any detail was different to how he perceived it should be all hell would break loose.  He was obsessed with doors, gates cupboards etc being shut and even walking to the shops he would freak out if anyone had left their garden gates open.

He didn’t play with other children or toys like other children his age and had bundles of excess energy flitting from one thing to the next forgetting what he was doing each time he saw something new.  He needed constant 100% one on one attention which made trying to by run a household, spend time with my eldest son Connor and anything else that took my attention away from Seth impossible.  Sometimes I would be so overwhelmed by his behaviour particularly the violence I would sit and cry and cry thinking what I am doing wrong? Is it my fault?  Am I a terrible mother?

As the months passed his strange and different behaviour continued.  He didn’t hold eye contact and would not listen to anything you would say to him.  He could not cope with being hugged or kissed or any form of smothered affection unless on his own terms or if he had instigated the physical contact, which very rare.   The health visitor even suggested that he may need his ears tested.   We knew there was nothing wrong with his hearing though.  He was just stubborn and extremely defiant.  If Seth didn’t want to do something then he wouldn’t and that would be the end of it.  It wasn’t just the normal terrible two’s tantrums, they were explosive and would start for no reason without any sort of trigger it was at this time I also begun to stop going out in public with him, shopping was a big no as I could not manage strangers reactions to him.  I felt like such a bad mother and so judged I began to withdraw from everything and every one and cut myself off from long standing friends and completely isolated myself. 

Despite the behavioural problems Seth was learning new words every day.  He was already very articulate and intelligent and needed new things to learn and new input.  He loved being read to and this became a massive thing in calming him.

I also bought him a doll.  My husband who is a 6 foot tall testosterone fuelled butcher was not impressed as you can imagine but I was at my wits end with the whole hair obsession I didn’t care.

Seth has always been big.  At birth he weighted 9lb 8oz and is much taller than any other children his age.  At age 3 he wears 4-5 clothes and is massive.  He is tall but generally just built solid.  Imagine the looks we got when we did go out with him in public and people looked at Seth holding a boy doll, constantly stroking the hair like doctor evil did with his fluffily white cat!   Because of the constant hair stroking to the doll very quickly the doll has become to resemble the doll from the horror film Chucky!  Seth calls the doll Baa.

At aged 1 ½ Seth’s doctor suggested to us that he though Seth may be on the Autistic Spectrum and we started to look into whether he was suffering from Autistic Spectrum Disorder.  Referral where made for him to see various specialist.  I felt at least a little relieved that there might actually be a medical condition causing his problems rather than me just being a terrible mum.  Seeing specialist especially on the NHS takes time months in fact and during the wait everything became too much and I suffered a massive breakdown at the end of July 2010.

Things are looking a lot more positive now,  We are still awaiting to see some specialist with regards to a diagnoses for ASD however as he has grown his behaviour has changed, some aspect have improved but I think also as a family we have learnt to defuse his behaviour.

He is now playing with toys and is displaying imaginative play.  He goes to nursery which has been an absolute godsend both developmentally for Seth but also offering rest bite for me and freeing some time for me to spend one to one with Connor.

There are still big challenges for us with Seth, he is suffering from Cerebral Palsy Diplegia in one of his legs this makes him very clumsy and his leg stiff he also tip toes frequently but this does not stop him racing around at full speed, tripping over and getting right back up and doing it again and again, he jumps and climbs and spins and is a ball of energy constantly needing very little rest but lots of attention.

His occpational therapist confirmed to us that in her opinion Seth is suffering from Sensory Processing Disorder (sensory seeking) this can often be mistaken for ASD and or ADHD.  Once we started looking into this disorder it was like reading about Seth.  All of the symthoms and discriptions of behaviour are just like Seth so we are now working with Seth to try and help him to grow and develop into the most he can be and hopefully ensure that he will go to a understanding and supportive mainstream school when he is 5 who will be able to understand this disorder and not just think he is a naughty and disruptive child.

Seth

Throughout my pregnancy with my son Seth, now 3 it was suspected by all medical professional that I was carrying a very large for dates baby.

At 38 week the decision was made to induce me as I was suffering from such pain and discomfort in my pelvis and hips that I could hardly walk.

The induction went as planned and I progressed into established labour quickly.  Seth was my second child so when things started to feel wrong I became very worried.  The staff whispered amongst each other and you could see from their faces that there was concern.  During my labour there was evidence on the CTG trace that my baby was in distress and eventually a decision was made to expedite delivery by ventouse delivery (basically a Dyson – and they suck and drag your baby out from you - it was absolutely barbaric).  When the head was delivered there was evidence that my baby was suffering from Shoulder Dystocia (http://en.wikipedia.org/wiki/Shoulder_dystocia) (an emergency situation when after the baby’s head is delivered the baby’s shoulder becomes stuck and cannot pass below the pubic symphysis.

After emergency procedures were implemented my baby was finally delivered at 5.55am floppy, grey and lifeless with an Apgar score of 0.  My husband held me tight shielding my vision from the team working on Seth in the corner of the room trying to resuscitate him.

Thankfully he was resuscitated and ventilated and taken to the neonatal unit but the staff were unable to tell us how much damage if any he had  sustained other than it was thought he had suffered Hypoxic-Ischemic Encephalopathy Grade 2 (HIE) and the next 48 hours would be critical.  A doctor in the unit was aware of a trial taking place locally called the ‘Toby Trial’ were new born babies who had suffered hypoxic injuries are placed in a induced state of hypothermia for 72 hours.  There has been some evidence that this state of hypothermia delays the damage and dying of any brain cells which would happen during periods of starvation of oxygen.  Seth met the criteria for the trial and we were told he would go to either Manchester or Liverpool.  Within an hour a team from the Woman’s Hospital arrived and he was transferred by ambulance to the Liverpool Woman’s Hospital.

At the Women’s Hospital Seth was ‘cooled’ for 72 hours then gradually warmed.  During this time we were unable to even touch him in case our touch raised his temperature.  It was four days after his birth that I was finally able to hold him for the first time.

Seth continued to be ventilated and his brain was monitored.  The doctors confirmed that his brain was not behaving normally nor was it behaving symptomatic of brain damage but the good news was he had not suffered from any fits and his organs were functioning well.  There was talk of the possibility of Cerebral Palsy, but no one would give us an idea about whether Seth would be ok we were told it would be years until we would be able to see if he had sustained any long lasting damage and how if he did it would manifest itself but he would be monitored and reviewed frequently over the next few years to follow his development.  We didn’t care though, he was our baby no matter what and he was alive. 

After 4 days Seth started breathing for himself and after 10 days he came home.

The day we went to collect him from hospital was a crisp frosty December and as we drove through Liverpool to the hospital there were thousands of Santa running the ‘Santa Dash’ it was like all my Christmases had come at once our baby would be home for Christmas.

The special care baby unit was amazing, they even had a page where they would post pictures of Seth and updates on how he was doing so we could see and our friends and family could follow his progress.

Seth is now 3, the past 3 years have been a challenge to say the least and he is displaying some behaviour problems and has stiffness in one of his leg.

He is so different to any other child, he is so stubborn to the point that his health visitor thought he was deaf and had his ears tested.  They were fine he just chooses not to listen to you.  He is very unique and can literally in minutes reduce me to tears with his difficult behaviour then have me roaring with laughter with his strange ways and outlook on life.

We as a family have had major ups and downs with Seth and his behaviour but could never be without him in our life

Breakdown

As my husband and I sat in the physiatrist office I felt like I was watching the scene from outside of my body.  I sat huddled in the chair hugging myself as the doctor and my husband Kenny discussed my behavior and past traumas.  Dr Raham, was suggesting to Kenny that I needed to stay in the hospital for 4-6 weeks to recover.  I sat in a state of shock. 4-6 weeks surly he had made a mistake, I’m not that ill.  I thought I would be having a weekend stay at the most.  Kenny thanked the doctor and it was arranged that I would go home for a few hours whilst they sorted out the paperwork and my insurance funding and I would be admitted later that evening.  It felt surreal.  As we drove home I felt in a state of shock 4-6 weeks I’m not that ill I protested to Kenny.  He just looked at me with such sadness that said yes you are.

The next few hours felt strange, Kenny spent a lot of time on his phone talking about me to various people as if I wasn’t there and making child care arrangement for our boys.

Shall we go for lunch Kenny suggested?  “I can’t believe that it takes a nervous breakdown for you to take me out for lunch” was my answer.  So we went for lunch, it was like an elephant was in the room with us.  An hour ago we were just told that I was suffering from post natal depression and had had a nervous breakdown and here we were sat eating lunch like any normal couple discussing what I needed to pack for my stay at The Priory. I felt like everyone in the room knew I was a nutter, like there was a massive neon sign with flashing lights above my head saying “CRAZY LADY”.

After lunch the surreal normal day continued.  We went to the supermarket and bought toiletries and tracksuit bottoms for me, came home and packed.  Kenny then went through my suitcase to check that there was nothing sharp hidden which I could harm myself with.  Part of me just couldn’t understand his behavior towards me “am I that bad really” I questioned?  “yes you are” he answered.  We walked our dog in pretty much silence whilst I tried to talk him out of taking me to the Priory.  “I’m fine” I pleaded, “I’m much better” I begged,  Kenny never once backed down, “No you are not fine, you have to go I am sorry.   I can’t cope with your behavior anymore, you are no longer my Jo, you need professional help“His words cut like a knife, how had this happened to me?

We returned home and I had a shower and *smoked a cigarette out of the window of the bathroom like a naughty teenager, I even put a towel at the bottom of the bathroom door as I knew Kenny would not approve.  I was so anxious and this was exactly the time when I would previously have self harmed but Kenny had hidden all sharp objects so the cigarette was another coping mechanism.

*Most depressives smoke

Dr Gregory A Ordway, a Professor of psychiarity at the University of Mississippi Medical Centre and collaborator Dr Violets Klimek, compare brain tissues samples from long term smokers with samples from non-smokers and conclude that chronic smoking produces ‘anti-depressant-like’ effects on the human brain.  This may contribute to the high incidence of smoking and difficulty to quit in those who are depressed.  Archives of General Psychiatry, September 2001.  In 2006 researchers at Duke University

Medical Centre gave nicotine or placebo patches to a group of non-smokers diagnosed with depression, then measured their symptoms using standardised questionnaire.  They found that those who wore the nicotine patch for at least 8 days experienced significant declines in depressive symptoms.

Seth then and now

Im Fine*

* Fucked Up Insecure and Neurotic

I did not see it coming, it just hit me with such ferocity that I was completely unable to function.  Yes I had suffered from depression throughout my adult life but this time I could not shake it off.  It was as if my body was diseased, it began to affect everything and slowly the depression took over me I was unable to fight it anymore.  For the first time in my life I gave up my fight and let the depression wash over me.

I was so ashamed of what I felt, I saw it as a failing so I hid my depression, I was a master at hiding my true feelings.  If anyone asked how I was, I would answer ‘fine’ but inside I felt absolute despair.  My life felt hopeless and I felt so helpless and so absolutely alone.  I longed for someone to hold my hand and make everything better but as my depression grew in severity I grew more and more withdrawn.

It was the end of July / early August 2010.  We had had a particularly difficult few months.  My son Seth’s behavior was at its up most worst and I was still finding it difficult to be with him.  I was not sleeping Kenny and I were taking turns to stay up all night will him, I was juggling family life, working part time and trying to shake off post natal depression my life had become too much.

I had stopped living and was merely operating on automatic pilot.  I was able to maintain general day to day routines but I was absolutely exhausted mentally and physically.  If anyone questioned my mood or how I was feeling I would tell them ‘I’m fine’.  I felt that people did not really want to know the truth, it was blatantly obvious that I was anything but Fine but when you tell someone you are fine they don’t usually question you any further. 

I am a very proud and private person and the thought of anyone discovering the truth was devastating.  So instead I swallowed down my emotions and got on with it.  But all the while I would fantasies about killing myself.  I did not want to die, not really but my life felt such absolute and utter despair.  I felt so isolated and alone and in so much pain that I just did not want to continue living.

It was at this time that I began self harming (which in hindsight was a desperate cry for help). 

What started as a potential suicide attempt became a painful addiction.  I knew my depression was spiraling out of control but felt that no one could help me or even cared about me.  I had tried contacting my doctors on a number of occasions but everyday I was told there were no appointments available and to ring again the next day, I telephoned my health visitor who was unable to see my for a week and left a message for my NHS counselor who told me that I was not entitled to anymore sessions and she would put me down for a depression group once a place became available.

With the belief that ending my life would be better that continuing living with the pain I found myself in our family bathroom with a kitchen knife against my wrist.  As I looked at myself in the mirror I didn’t recognise the woman looking back, she was pale with massive black bags under her eyes.  Her once sparkling blue eyes were empty.  All hope, excitement, lust for life had disappeared.

I took a deep breath and started to cut my wrist.  I couldn’t believe it, the knife was blunt - how ironic my husband is a butcher but we had no sharp knifes

Thank You

Just wanted to say a MASSIVE THANK YOU to any readers of this blog and all the new mums who have LIKED and are following the Mums help mums network Facebook Page.

This is all still an idea and I'm not really sure where I can go with it or how much interest there is or will continue to be.

I am so overwhelmed already by the interest and personal comments and messages that have been sent to me on the Page.

Thank you again and please keep sharing

Jo x

My reason behind the idea of a blog

My childhood and parts of my life have been so traumatic that until recently I did not realise that I have been suffering from depression for most of my life.

That the events In my childhood and adult life have subsequently shaped my whole life including the decisions I have made and the paths I have taken.

I am currently in recovery from a breakdown during which time I read various books on depression, some were self help books, memoirs of other random peoples experiences of depression. Some books helped others just made me feel even more depressed. I was looking for something up lifting, inspiration that would give me hope.

When I could not find this I decided that I would start to write my own personal experiences down in a way to rid myself finally of my demons.

I felt that I was more experienced on this subject than most and hoped I could turn my negative experiences into something hopeful and positive for the reader.

I wanted to show that yes bad things do happen but hopefully my writing could bring some humour into the situations I had experienced and give others hope that they can get better and through depression into recovery.

This blog is going to be linked and run in conjunction with the Mums help mums network Facebook Page.

Some blogs will be extracts of my writing, diary extracts from my time in hospital. Other blogs will be in relation to the mums help mums network page, topics which people are talking about and topics which have and are affecting me, my family and my children.