Earlier parts of the book can be found here.
Chapter 3 An accidental Expert?
I had just wanted to be Peter’s mum, that’s all. I wanted to drop him at school, help him with reading and homework and live a family life the rest of the time. I had a ‘big’ job. I was a clinician by background and was responsible for ensuring the implementation of public policy across a population of nearly 2 million people. A considerable part of the role was the interpretation and translation of both clinical and policy information.
With regards to Peter I was reliant on the experts in education to work with experts in neurodevelopmental science so they could understand the nature of difficulties he was experiencing.
I wanted the educationalists to liaise with the health experts and then apply what they learnt about Peter’s attributes and difficulties to the school and classroom setting. I imagined that this was what teachers did for children that sat outside of the ‘ordinary’. This would have enabled Peter to feel safe at school and confident in his teachers so that he could build a trusting relationship with them. Then he would have been less anxious about school and he would have been able to share any worries he had during the day with adults there. That way, the extreme states Peter was experiencing in the evening should have been much reduced, he wouldn’t need anxiety medication, he may have managed some homework and so on.
The experts in neurodevelopmental difficulties gave endless hours in letters, phone calls and meetings. Their valuable time was offered and given over and over. I was grateful and endlessly hopeful that “Now school will understand and help.”
Going back three years it was clear that we needed school to help. At times Peter, then 7, was so disordered after school that he thought I was a burglar, was truly terrified and tried to flee the house – when Lily, then 4, was asleep in bed. What on earth was I supposed to do? I was the only adult in the house, exhausted, often hadn’t eaten and had work to do once the children were asleep. Events like this happened night after night for months. It was clear that the effect of coping at school each day was having an awful effect on Peter. I could do little to help him when he was in one of these states. All I could do was try to prevent them.
With support from CAMHS I was able to think about strategies and adjustments for the evenings, but really, I needed to work with the school so that he was less distressed by what was happening there. I wanted him to be able to develop a bond with people at school so that he could let them know when he was struggling. ‘Holding it together at school’ was having a terribly detrimental effect. We needed to reach a point whereby Peter could feel sufficiently safe to leave stressful situations when at school or, even better, where the adults could predict and manage what might be difficult for him in advance.
I couldn’t fix the evenings without addressing what was going on in the day. I felt that I had no option but to try and reduce the difficulties of the school day occurring in the first place. It was the only thing that would help.
Since leaving school staff to work it out wasn’t working, I reluctantly set about using the skills I had developed in the workplace. I worked to understand and communicate clinical information, apply it to the current context (in this case Peter’s presentation) and then summarise things for the school.
What I didn’t account for was that there was no way, ever, key school staff would accept that Peter had any difficulties. Not even his admission to hospital would convince them, it seems. I didn’t realise then that they would never commit to understanding and helping. I didn’t know the extent to which they were insisting that the many experts in neurodevelopmental psychology, psychiatry and sensory motor processing were all wrong.
They didn’t tell me that this was what they were thinking. They just didn’t help.
I didn’t realise it then, but by working to better understand and to communicate Peter’s difficulties, I was simply supplying them with opportunities for additional derogatory labels that they could attach to me. More accusations to add to the ever growing (and at the time, secret) list.
I didn’t want to become an expert, but what choice did I have?
Click here for part 6.