In part 4 the extreme refusal by school staff to support Peter is explored, my incredible naivety is exposed as is the phenomenal arrogance of school staff. I think all parents of children with SEN will relate to this!
Earlier parts of the book can be found here.
Spinning Heads – Chapter 2b
Ever since Year 1, when Peter’s struggles became known to the Child and Adolescent Mental Health Services (CAMHS) and his difficulties started to be given a possible context (social communication difficulties and anxiety), resistance from school staff on this matter had been absolute and extreme.
Everything had been tried by them, including the insistent ‘He is NORMAL’ from the Head Teacher, meetings of up to 7 people to persuade me to see the error of it all and the rather patronising ‘he’s fine at school’ (reinforced by a sweet smile and the ‘primary teacher head tilt’). Over the years it appeared that the Specialist Autism Teacher had surfaced on occasion to ensure obstruction to any support in school. The Educational Psychologist had written to suggest ways the SENCO could avoid a dyslexia diagnosis, inexplicably tried to undermine his Asperger’s diagnosis and avoided meeting with his Clinical Psychologist.
I had been permanently baffled by school staff’s responses. I never asked school staff “Do you think he is normal?” – it would never have occurred to me to do so. Yet without them hearing the medical views first hand or in detail, I faced an uninvited barrage ‘normal’, ‘normal’, ‘normal’ from them. Peter had been referred by a school nurse to CAMHS for anxiety when he was 5 and in Reception. He had been screened by a CAMHS Social Worker who had felt the most appropriate professional to help him was a Clinical Psychologist and made us an appointment to see her. It was a Children’s Mental Health issue, and it was being dealt with by experienced Children’s Mental Health Team. It might sound naive, but why would teachers randomly decide that the Health team were wrong? To me it wasn’t a teaching problem. At the time of the initial referral he seemed to be doing well educationally.
As time went on Peter began to demonstrate difficulties within literacy. With hindsight I can see that these began to be more obvious at the end of Year 1. They began to impact on his anxiety significantly in Year 2. By this time he was frustrated that couldn’t write what was in his head, he couldn’t remember lists of instructions and was struggling to read and spell. It was clear from his assessments that, in a number of areas, he was falling behind. So, whilst his CAMHS team, Peter and I were already being ignored and his communication disorder difficulties weren’t being addressed, his new emerging difficulties in literacy and sensory processing were adding significantly to Peter’s frustrations and ever lowering self esteem. Support in these areas, too, was obstructed by both school and Local Authority staff.
It made no sense. Without help at school and with each term eroding his confidence that school staff would or could understand, Peter seemed to feel that his self-preservation necessitated ever increasing levels of masking. It was such a vicious circle. School staff wouldn’t believe he was anxious without seeing more significant signs but, the less they believed him, the more he concealed his difficulties. In the mornings, before school, it took up to three hours of routine to help him to manage his anxiety so that he could calmly go into school. After school he fell apart: “Derealisation, depersonalisation fitting a picture of dissociation” his CAMHS Psychiatrist wrote. His entire existence was centred on preparing for school, managing school and recovering from being at school. As each week of term progressed he would need more time, before and after school, to manage. Eventually there weren’t enough hours to recover between coming home one day and returning the next and he was completely exhausted. Then he would have a few days off school. School staff would mutter and record details of this ‘worrying case’ but never, ever, would they actually help.
I could go on but, the point is, that 6 months previously I had a son who was attending mainstream school, without an ounce of help or support within school. One night, he went into a crisis-sort-of-a-state and now he needed specialist residential schooling. It all seemed so confusing and there was no real explanation for the degree of change in Peter.
On the afternoon of that first CPA (hospital multi agency meeting) I contacted our Local Authority’s Special Education Needs (SEN) Manager[1]. I figured that she would appreciate knowing the T4 Hospital and School teams’ recommendations about future provision ASAP, as the Education, Health and Care Plan (EHC Plan[2]) draft was due out any day. I assumed that the fact that Peter needed a residential school placement meant that ‘stuff’ would have to be put in place and that knowing this information would help her.
How very naive of me. “That’s just one person’s opinion” she said.
How could she see it that way? It was the agreement of a multi agency team after a six week inpatient assessment in a specialist mental health unit. You can’t go any higher for advice than a T4 CAMHS team. And the school attached? Surely you would struggle to get more experienced opinion anywhere in the country.
I later realised that information on a child only counts if the person writing the information is employed by our Local Authority. Even if that person hasn’t actually assessed the child, accidentally allocates them the odd extra diagnosis or makes wild assumptions about the mother ‘coaching’ the child from 150 miles away. The systems are painful, no doubt for those that work within them, as much as for those of us who rely on using them.
The hospital report that followed the first six weeks of inpatient assessment and subsequent CPA meeting, confirmed his diagnoses as: Asperger’s Syndrome, Mixed Anxiety Disorder, Serious Social Disability and Mixed Disorder of Scholastic Skills. I presumed the latter referred to his dyslexia and other difficulties such as Visual Motor Integration.
Since his referral to CAMHS more than four and a half years earlier Peter had been under the care of 5 Psychiatrists and 2 Paediatricians, in addition to the other specialists in Neurodevelopmental Disorders. The findings and conclusions of all of them were consistent. He had been diagnosed with ASD[3] less than two years after his preliminary assessments had begun.
School staff still felt sure that the medical teams were all wrong. Really sure. ‘School think Peter is fine’ the records explain, weeks after Peter’s admission to hospital. Three years after his ASD diagnosis…….. Even now, no amount of common sense, expert opinion or evidence seemed to make any difference.
It is important to note that not a single one of the many health professionals we have worked with has, at any time, given the impression that they thought they could carry out any of the teachers’ roles. They have always been respectful in their approach and considerate of the (quite often bizarre) views expressed by teaching staff. Conversely, very many of the teaching staff have been quite sure that they know more about complex mental health and neurodevelopmental disorders than those actually trained and experienced in this area. In our experience they have invested heavily in these beliefs. I firmly believe that unconscious incompetence[4] has played a critical role in the unhelpful actions of teaching staff. Staff who, undoubtedly, did not enter the teaching profession with a desire to cause harm to children and their families but, in fact, due to a chronic and cultural lack of awareness, do just that.
I will never understand how we have reached the situation in which a teacher, with no significant training in Paediatric Mental Health or Neurodevelopmental Disorders, can wilfully ignore the recommendations of Psychiatrists, Paediatricians, Psychologists and Occupational Therapists; professionals who do have extensive post graduate training and experience in this field. Teaching staff can apparently do this if they don’t ‘see the difficulties in school’. So, if they don’t see things they are not trained to notice, they can disregard the recommendations made by experts in the field. Who sanctioned that piece of genius?
At the CPA I had been advised that Peter would be discharged ‘soon after the next CPA’. Six weeks. I had six weeks to find a school and organise some transition. He had no EHC Plan and had not even been assessed for one. I felt as though the SEN Manager was avoiding liaising with the hospital and school staff and yet her colleagues the Local Authority were not moving forward with their own assessments either. No Educational Psychologist had been allocated even.
I was far too inexperienced to realise that there was no hope of a smooth, timely transition to an appropriate setting. Click here for part 5.
[1] Within SEN Services we were supported by a Casework Officer (to coordinate the information and draft the EHC Plan) and a more senior SEN Manager.
[2] Also sometimes referred to as an EHCP
[3] ASD: Autism spectrum disorder Is a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism.
[4] You do not know what you do not know. You lack knowledge and skills in the area in question and are unaware of this lack: Your confidence therefore far exceeds your abilities. https://itmustbemum.wordpress.com/2017/01/28/when-professionals-are-incompetent-a-story-of-unconscious-incompetence/
It Must Be Mum 
3 thoughts on “It Must Be Mum – Part 4”