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.