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The Child Within the Man: The Conclusion
By Julie Telfer
ISBN: 978-1-84747-826-9
Published: 2009
Pages: 129
Key Themes: autistic spectrum, autism, aspergers, carers, social services, challenges
Description
Christopher lives with the challenging mental health condition known as Kanner autism. This book is written with the hope of bringing insight into this lesser spoken of type of autism into the public sector and comes from a mother’s perspective. It follows on from the first and second books and concludes Christopher’s story as we attempt to secure his present and future support needs.
Since leaving school in July 2007 and due to failed transitional planning, Christopher remained at home and in our sole care. Following the successful assessment for Continuing Care the year previously Social services withdrew into the background but the home observation visits with the Multi Disciplinary Team – which comprised Occupational Therapist, Community Nurse and Clinical Psychologist – continued each week. There were many unresolved issues regarding our request for a day service placement, but the main issue centred around the sheer expense and as the cost of the development continued to escalate, so did our fears that it would eventually be refused.
Gwent Healthcare NHS Trust’s reluctance to approve requests and commission services meant that the gap in provision continued to grow wider. However, there was one positive outcome with regards to our fight to secure a day placement, as we learned that the Local Health Board and NHS Trust now planned to develop Intensive Support Packages within the Borough. This meant that for the clients who were currently being supported out of the area would be able to return as the service developed. It also meant that younger adults leaving school – who met the criteria for continuing care – would now have such packages developed around their individual needs and without having to leave the area to access them.
In February 2008 we learned that The Local Government Ombudsman had upheld our complaint against the Local Authority regarding inconsistent respite provision. We were advised that the issues of transitional failure and failing to provide a day placement in time for when schooling ended were now to be dealt with separately. We were further advised by the Ombudsman to submit additional complaints against The LHB and The NHS Trust for failing to meet Christopher’s needs and this we did.
Following these further complaints the Investigating Officer from the Ombudsman carried out interviews with selected members of The LHB and the NHS Trust and that same afternoon saw the Trust release all of the necessary monies which enabled the day care placement to progress. The service development created several posts, i.e. a band 6 community nurse, a band 5 co-ordinator, 5 band 4 support workers, an additional clinical psychologist and occupational therapist, etc; and within just a few weeks of the advertisements and interviews, all of the positions were filled. Transportation was also finally agreed and ordered, along with the necessary equipment/ furniture which meant that in July 2008 observation visits were able to be transfer from home, to the Day Centre.
Christopher’s day placement is just one of two Intensive Support Packages which have been created alongside of each other in the whole of Gwent. It is a new concept by Local Health Board’s across the country – and one that we had to fight to achieve – but, following a 2-year battle, we have succeeded.
On 20th December 2008 our complaints against The Local Authority, The Local Health Board and The NHS Trust were upheld. The impact of this decision for other families will be considerable – as will the impact upon Local Authorities, Local Health Boards and National Health Service Trusts all around the country.
About the Author
The Child Within the Man – Christopher’s Story Part III was written in the hope of raising awareness of Kanner autism and severe challenging behaviour. The book gives an insight into what it is like to live in a family when one of its members is so profoundly affected and concludes our son’s story with our fight to secure support services and future provision for him. It highlights the goals which can be achieved – against all odds – but above all, it takes the reader on a journey of love, hope and discovery.
Book Extract
It had been several weeks since the appointment with the geneticist had taken place but I still found myself trying to recall any behaviour from Christopher’s infancy which might have suggested that seizures had been present all of those years ago.
The frequent and prolonged night-time waking which I described as occurring as a baby, was felt to be similar to that which was wrongly attributed to night terrors in later years. But although the geneticist might have felt the descriptions of the two incidents had shared some similarities, they had in fact looked very different.
As a baby Christopher had always been quite restless during the night and would wake at regular intervals. Sometimes he would need feeding or pad-changing, but much of the time the reasons for the continued disturbances – whilst not always being apparent – were not particularly extraordinary either.
It was true that some very young babies slept much better than he had, but the majority of parents experienced disturbed nights over longer periods and by the time eight months had elapsed Christopher had begun to sleep through the night with little difficulties.
For the following ten months the restful nights continued and by this time, we had reached the conclusion that a routine had taken shape and anticipated that the night-time disturbances had all but diminished. However, following this significant reprieve night-time waking again resumed and the accompanying extensive periods of screaming were more unusual and alarming in nature.
The resulting tantrums would last for hours and although short naps were taken during the time Christopher remained in his cot, much of the night was spent trying to settle him again. But although the offers of comfort were in vain, during the time that Christopher was awake, he was aware of his surroundings and of our presence and this is where the episodes in later years differed markedly.
Christopher had been eleven years of age when seizures began and activity had initially always occurred from sleep. But although he awoke to have seizures he was not in any way aware of his environment or of what was happening around him.
We were not then living in the bungalow and to avoid the dangers of the stairs we all slept in the lounge each night on the resident sofas or on the double mattress which was brought down for the purpose. Being in such close proximity to each other meant that any sudden movement would create a disturbance and this is how we were first made aware of the problem.
It had been a shock to be awoken by Christopher sitting bolt upright one night and equally disturbing to see him looking so frightened when so little had ever appeared to bother him before. But within just a few seconds, the fear of the aura would subside and it would be replaced with the vacant gaze as the seizure took a hold.
The episodes typically lasted no more than thirty to forty seconds, at which point Christopher would slowly gain some level of awareness, sigh heavily and then lie down as quickly as he had originally sat up. He would always be exhausted following these bouts and would sleep deeply following them, sometimes making a strange guttural noise in the back of his throat and often chewing his tongue and drooling quite extensively.
The level of awareness had undoubtedly differed quite significantly between the frequent waking he had experienced as a baby and the fleeting ‘awakening’ and awareness episodes he later experienced prior to seizures. But I suddenly realised that whilst these particular episodes differed enormously, the incidents of staring – which I had described as occurring during seizures – was not so dissimilar to that which he had experienced as a baby.
These particular incidents didn’t occur during the night-time waking, but were sometimes noticed at different times of the day. In retrospect, the vacant and often unblinking gaze that we had always assumed to be episodes of ‘day-dreaming’, might possibly have been some type of brain activity.
Christopher’s seizures had been very brief and had not always been obvious when they were initially diagnosed. Staff at school had occasionally been unaware that ‘fits’ had occurred and it was not until Christopher arrived home on the school bus that the after-effects of the recovery stage had been apparent.
I also recall one occasion when we had been shopping with Christopher’s aunt when I suddenly became aware of an alteration in his breathing. As I peered around the wheelchair I realised that a seizure was in process, but my sister would not have known of its existence had I not warned her one was occurring.
There was no shaking or flaying of limbs and even during the occasions when Christopher was standing, he would not suddenly collapse to the floor, but would instead slowly sink to his knees.
It was true that as the years passed the seizures altered and became more noticeable, but could they alternatively have been less noticeable as a baby and have occurred nonetheless?
The masticating, or tongue-chewing was also emphasised during the recovering stage, but this type of behaviour had been present when Christopher was a toddler.
As we sat looking at old camcorder footage of our three sons playing together as children, it was to observe Christopher giggling and chewing his tongue as he ran after his elder brothers. Again, might this have been the result of some type of seizure activity, or was it simply the child-like habit we had assumed it to be – such as nail-biting, thumb sucking, etc;
Also if seizures had been occurring for so many years without our knowledge and therefore without any treatment, could such brain activity have been responsible for the subsequent brain damage he now had?
The uncertainty was both frustrating and upsetting, but the process of genetic testing had only just begun and it would be many months before we would have any answers – if indeed, any came at all.
In the meantime, life continued as usual and with Christopher showing no signs of interest in playing with anything new, it was disappointing to discover that the sand – in which he always had so much fun – was no longer found to be a form of enjoyment. His interest in his old favourite had slowly waned over the course of the year and raising the lid of the sand-pit mostly resulted in it being completely ignored.
The only attention it occasionally mustered was as a food source and although it was ‘play-sand’ and therefore safe for playing with, it was obviously not safe to be eaten. The choking and inevitable vomiting his doing so resulted in, led to our decision to dismantle the large pit we had made and to discard its contents.
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