Once upon a time……

The above words would indicate a story is about to be told, but stories have endings and what I am about to describe is a constant ‘work in progress’………

My Son was misdiagnosed as being only (as if that’s not enough) Autistic from aged 3 years old. No consideration / investigation or acceptance was given to the systematic trauma and abuse he suffered until he was aged 6 years old which was when I gained full custody.  It was only when he was 16 years that he was officially diagnosed as having / still going through Reactive Attachment Disorder.  His current Diagnosis is RAD / Autistic.

When Sam was first diagnosed as being Autistic I knew nothing about Autism.  Being a parent it was, totally necessary, to learn as much as possible about it so I could provide the best possible environment for him.  My first step was to search for what was available within the Borough of Hillingdon..it was a short search…there was nothing regarding support for Autism..well that is not exactly true..there was a brand new group that had been formed called the Hillingdon Autistic Care and Support group.  I telephoned the number given and attended a lunchtime meeting. Apart from the organiser Anna Kennedy, I was the only one there….the group has grown enormously since those days but the weekly chore of putting seats out, making coffee and biscuits was always worthwhile when the effort was rewarded by the sight of new people attending desperately seeking help in discussing their problems (not all related to Autism!) and finding a much needed unique empathy one finds with parents of other Autistic children.

Being misdiagnosed (understandably in some cases) the dilemma I had, was in trying to identify what was my son doing for Autistic reasons as opposed to RAD reasons. This paradox still exists today. Was it possible the reasons could be 100% RAD..YES..Could the resons be 100% Autistic…NO.

This by definition must mean that any environment Sam is placed in and the ‘parameters’ subsequently placed on him, should be borne from proven consistencies he has exhibited. Dismissing his parent (little old me!) as ‘in denial of his son’s Autism’ (which I am NOT) as of no real source of input whatsoever, not only left me totally frustrated but ensured that I was forced to take a ‘back seat’ and watch a succession on schools use methods and systems not only proven not to work with Sam  but directly actually feeds his RAD and maintains with circuitous paradox.

During the last five years Hillingdon Council have ‘Thrown money at the problem’ having paid just under £1,000,000 on my son’s ‘education’. The net result being that he had to be taught when at home as the school, using wrong techniques, failed to teach him (as they concede) even one single word.

He left his last ‘School’ at the end of July 2011 and finding a suitable ‘placement’ was essential.  Hillingdon wanted him to attend (termly) a boarding school in Mid Wales..this would have destroyed Sam for a number of reasons…The cost, once again, would be phenomenal. This highlighted perfectly the council’s misunderstanding of Sam’s needs.  After 15 years I am tired of screaming “Why won’t people listen to me” I am sure that this sentiment resonates with many in similar positions and the sadness is. I am far from being alone with this thought.

 

Why are Authorities reticent to change their theories to fit the facts as opposed to changing facts to fit the theories?

During my ‘dark days’ and sadly there were many, I sought advice from many people, Anna Kennedy, did not escape my desire for answers..she provided me with information and direction to help with Sam and was always appreciated.

West London Community College in Church Road, Hayes was identified as a possible placement. It transpired to be ‘run’ by Anna Kennedy.

I was concerned that this placement would ‘fail’ if the school did not ‘understand’ Sam.  The college however is totally ‘student based’ and therefore they are prepared to ‘do what works’ for their students (within reason and safety of course).  After lengthy discussions, it was agreed that Sam should be placed there.  Prior to him starting I was invited to ‘have a chat’ with some members of the staff.  I arrived at 3:30pm to be shown into a room where ALL the staff were assembled to ‘listen to what I had to say’.  Those that know me know I can talk for England about Sam…trying to disseminate 15 years of knowledge in 60 minutes is impossible but I tried to keep it ‘on track’ and sensible. I was impressed not only that they listened intently but to the quality of questions I was asked. I was further impressed that they all ‘stayed on’ in their own time to ask so much about Sam..their thirst for knowledge about Sam has continued…They also observed video footage showing what is presently possible…..a standard to start by.

A small example, but of huge significance, being that they gave him something to colour in (they have seen he can do this neatly), Sam of course rushed it and the result was a pathetic attempt, they looked at it gave him the task again and asked him to do it again, again same result, the third time they clearly stated they wanted him to ‘do it properly’ (an expression copied from home)..hey presto..perfect job handed in by Sam…that is ALL it takes and that one incident has ‘broken the back’ of the problem..Sam now knows he ‘has’ to do his best work at college..other schools stopped on the second request concluding he could not complete the task and therefore had poor co-ordination, problems with fine motor skills, Etc. Etc.

We have so very far to travel but at least we are ALL pulling in the same direction….and THAT is all I have ever sought….now and only now Sam has a fair chance..Thanks Anna

They say it is always darkest before dawn..well it’s been a long hard night..bring on the daybreak.