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The Child Within the Man
By Julie Telfer
ISBN: 978-1-84747-371-4
Published: 2007
Pages: 88
Key Themes: autistic spectrum, autism, aspergers, carers, social services, challenges
Description
Christopher’s Story II has been written after the success of the original paperback, published in the hope of raising awareness of (Kanner’s) autism and severe challenging behaviour. It continues the Telfer family’s story of love and determination to remain together as opposed to place their son in residential care.
Julie Telfer wrote of the first book “I would truly love others to look beyond the disability and see Christopher for who he really is. I hope this book goes some way towards making this a reality”.
In Book II it becomes clear that her remarkable work and writing has changed the views of many but that the road towards fair and unprejudiced services and opportunities for all is far from over.
Luckily it also becomes clear that she, her family, and her son, have the determination to continue walking this road.
Book Extract
INTRODUCTION
The autistic spectrum has held much fascination since Austrian-American psychiatrist and physician Leo Kanner presented his seminal paper back in 1943. A year later and unaware of his previous works, the Austrian paediatrician Hans Asperger’s own landmark paper, describing autistic symptoms was also completed.
Whilst the former studies concentrated on children at the lower end of the spectrum, the latter studies were completed on higher-functioning children. But together, the resulting papers form the basis of the modern study of autism and encompass many conditions such as Attention Deficit Hyperactivity Disorder, Fragile X syndrome, Asperger syndrome and of course, Kanner autism.
The spectrum itself is vast and whilst all affected individuals will have varying degrees of development and/or behaviour traits, which are characteristic of the condition, for individuals placed at the lowest end of the spectrum, the level of learning disabilities present will be more profound.
In recent years there has been much emphasis placed on the syndrome known as Asperger, with little reference being made to those affected by Kanner autism.
However, this book gives an insight into what it is actually like to live in family where one of its members is placed on the lowest end of the spectrum and continues our son’s story as he enters into adulthood.
If I could give you anything
I wonder what I’d choose
something you could always keep
and you could never lose
something not expensive
and not wondrous of name
it wouldn’t have a gift tag, but
would be yours, all the same
something much more precious
enriched from up above
that something you will always have
our unconditional love
CHAPTER ONE
We had had a hectic few months following the outcome of the Stage 3 Complaint hearing but were optimistic that the situation with social services would at last begin to improve in view of the Panels’ recommendations.
The respite sessions which had resumed just four weeks prior to the hearing, still continued in the local community hall, although we were hopeful that a different venue would soon be located. The hall had only been suggested as a temporary venue and it was true to say that it was not ideal. The first 10 – 15 minutes of each 2-hour session was taken up with our assisting the workers to place tables in front of every door, window and other areas of concern to prevent Christopher from absconding or injuring himself.
We had again been allocated support workers who were not allowed to change incontinence pads and the hall had no changing facilities in any event. This meant that we were either contacted early to collect Christopher, or he was left in soiled or wet pads. The service was still conditional on a ‘good behaviour’ basis, and with the continued provision of dates and not regular days it meant that some weeks we received a maximum of 2 respite sessions, some weeks we received 1 session and some weeks we received no respite at all. We realised that improvements would take time though and with Christopher fast approaching his eighteenth birthday, we hoped that this would be a turning point.
A few sessions had been cancelled due to his aggression but this was only to be expected. We had, however, been somewhat surprised to arrive at the hall on one particular day to discover that a session had to be cancelled because we were unable to access the building.
When the social worker had initially arranged for sessions to take place in the hall, he had asked that one of the support workers collect and later, return the key to the lady who retained it. Unfortunately, the lady was not always at home though and in this event, the planned session would then get cancelled. There were also occasions when the worker arrived to collect the key but would have to wait for a response and this led to sessions starting as much as twenty minutes later than scheduled.
I recall the time when we had arrived to find the support worker actually opening the door and had therefore assumed all was well. But when the inner door was pushed open we discovered that tables had been set out with food, for a party that was scheduled later that day. We tried to see the funny side of the situation as yet another session was cancelled, but the uncertainty and confusion it was causing Christopher, was apparent.
It was whilst we were discussing the issue of future provision with the support workers one day, that we learnt they might not continue to work with Christopher following his transition into adult services. With the relevant birthday now just a matter of weeks away, this news was completely unexpected and came as a huge blow.
I decided to write to the social worker who had been allocated to our family from the Adults with Disabilities Team. As the dates we had been provided with the previous September were fast running out, we would need additional ones in any case. It would be a good opportunity to ask if the present workers would continue to provide support to our family and if not, had replacements workers already been located, or was the department in the process of doing so?
Any replacements would need to get to know Christopher to build up their confidence and this would take time. There was also the issue of an alternative venue and transport to consider. We needed to know what progress, if any, had been made with this. There was so much that we were still unclear about but having placed the letter in an envelope, I popped it in the post and waited.
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