It Must Be Mum – Part 1

About this story

 In just ten months Peter went from a boy who attended mainstream school unsupported, costing the taxpayer nothing in additional school resource, to being so broken by his school experiences he needed to be admitted to a psychiatric unit at just 9 years old.  As a result he is unlikely to ever return to mainstream education again and needs support costing in excess of £100k per year.

All he needed, was for his teachers to believe him.

This story was written some time ago and has been gathering dust ever since.  I have been encouraged by a number of folk to make it available to others and now I have taken the plunge.  

This is our story, told through the eyes of a Mum; A Mum who tried, with every bone in her body, to ensure that those involved in her son’s life understood his complexities, so that they could give him the small amount of essential support he needed.  A mum, whose support, in part, enabled her son to hide distress whilst at school, because as soon as he was home he could let it take whatever form it needed to.  A Mum who was willing to risk not being liked and tried so hard not to be unreasonable; to explain calmly and respectfully, over and over: “You’re just not getting it.  He is distressed by school.”

About Peter

Peter is now ten and a half.  He is a bright boy who is naturally cheerful, ambitious and socially motivated.  He’s a caring child who and enjoys spending time with young children and cooking.  He also loves to: listen to books and to and music; watch films; camp; play badminton; swim and cycle.

Peter has complex neurodevelopment difficulties which were first identified early in Year 1.  Asperger Syndrome was diagnosed in Year 2.  Until Year 5 he was very good at masking his difficulties and ‘blending in’ at school.  The cost to Peter of trying to cope in school has been vast, resulting in periods of extreme distress after school, consultant psychiatrist support and, in Year 4, him being medicated.  His difficulties have been straight forward to detect, identify and diagnose by specialist NHS professionals.

Peter’s school related struggles led to him developing significant mental health problems which a Tier 4 CAMHS consultant attributed to “a magnitude of difficulties including his significant learning challenges, his sensory issues and the difficulties relating to his peers and most likely bullying” and “He also appears to have trauma symptoms from his previous educational experiences.”

Peter attended two First Schools.  Senior staff at both remained convinced that Peter was ‘fine’ and ‘normal’.  They were so sure of this that, at the second of these schools, even his Occupational Therapy appointments were recorded as unauthorised absence.  The views of these staff were passed on to his Middle School, where, again, his medical team and mum were ignored and despite a growing list of diagnoses and recognised difficulties he received no additional support.

He knew he wasn’t believed and this was so damaging.

Peter managed 7 weeks in Year 5 at mainstream school, unsupported, before his sudden and rapid deterioration.

Subtle Differences – Chapter 1a

It all started on the 10th November.  I could hear him.  He was sitting on top of the cupboard saying “No” to the voices and telling them to “Go away”.  I finished off helping his younger sister, Lily, with her maths and then went to investigate.

Peter was nine years old, he had managed about seven weeks of middle school, but it was getting more and more tricky.  He had to kiss me twenty times at the school gates, was confused by the hurtful behaviour of some of the other children and had stopped visiting his friend out of school.  He was frustrated that his teachers didn’t understand how clever he was and desperately embarrassed by the whole ‘peer marking’ approach as he felt his writing was poor.  I later discovered that he was scared, really properly scared, of the other children at school.

The voices thing was nothing new, the psychiatrist had explained that it was extreme anxiety and, to be honest, in the scheme of things not too bad. After all, this time, he knew who I was, knew that he was a human and not a dog and was not hallucinating.  He wasn’t screaming in emotional pain, digging through the carpet with his finger nails, or in the midst of what I can only describe as a conscious version of a grand mal fit.   All things considered, this wasn’t too out of the ordinary and, as he wasn’t regressed to a pre-toddler state, he could swallow his melatonin tablets and would eventually go off to sleep.  I assumed that, as usually happened after one of these episodes, when he woke up he would be tired but relatively ok and we would all carry on as we always do.

But the next morning he didn’t wake up his usual self.

Peter was still regressed and regressed in a new sort of way that I couldn’t describe.  But, then again, Peter’s distress and its forms were various and changed often; change we could manage.  I couldn’t send him to school though.  No way.  He was exhausted and in a very odd state.  He couldn’t even dress himself.  I contacted his Clinical Psychologist who advised that I could contact the on-call Consultant Psychiatrist if I felt necessary.

This was odd too.  Peter had been under the care of our local CAMHS[1] services for a number of years.  His Clinical Psychologist and I were both used to strange manifestations of distress in Peter, it was hard to describe at this point what was different, yet never before had she said to contact the Psychiatrist.  So I did.  We saw her that day, I think, and she also gave her time in frequent phone calls and almost weekly visits from then on.  He was given diazepam.  This was a tricky decision but it had been given to Peter before with no adverse effects and the alternatives were far more heavy duty.

It worked!  Thank goodness. I called his Middle School and spoke to the Acting Head Teacher.   She said not to send him back too soon; only when he was ready.  Blimey, that was new! What? No threats of The Education Investigation Service[2]?  No calls to Children’s Services[3]?  No nasty meetings?  I was liking this new school.  I thought that they were starting to understand maybe.  And he had been there for less than two months.

So, that day, a Thursday, I chatted to the very fragile Peter about going back to school on Monday.  But only if he was ready and his Head Teacher had said that that was fine.

Later that day, when we were in the car, there was a bus in front of us which had some of Peter’s peers from school on the back seat.  By some cruel co-incidence they chose to treat us to some sexually-aggressive sign language through the back window.  For a child with autism this sort of behaviour is especially confusing and upsetting.  Any prospect of Peter maintaining his improvement and returning to school was lost.

Back in his regressed state Peter continued to deteriorate.  Before this time, no matter how poorly he was, he would always pull it together and get by as a reasonably typical boy in front of others, no matter what the personal cost.  Now the desire, energy and ability to do this was gone, all worn out and that was very worrying.  But also, in some-ways maybe that would make my role easier?

If others could see what we saw, then maybe the hostile behaviour from some senior school staff would stop and maybe they would listen to Peter’s Psychiatrist, Occupational Therapist and Clinical Psychologist.  And maybe he would get the relatively straight forward support that these professionals had described.  And then my, insightful, socially motivated and caring boy could manage more easily at school.  Then he would be able to achieve what his neurotypical[4] peers had the privilege of taking for granted.  Maybe.

Peter’s ability to hide his anxiety and communication difficulties, to ‘blend in’ (look, to all intents and purposes, neurotypical) was gone.  Then there were the physical gestures.  These were new and reminded me of a young man I had once nursed in a brain injury unit.  Peter was waving goodbye to people on the phone, he lost his inhibitions, he cried, sobbed in fact, like a tired toddler and just couldn’t work out what to do with his body – one day he was in a car park, saw the barrier lowering, but was hit on the head by it: he simply couldn’t figure out how to move out of its way.

Overall, the main thing that concerned me was that sleep didn’t fix it.  He didn’t wake up exhausted but sort of OK; he woke up in the same odd state.

His little sister thought he was dying.

A few weeks passed and the medication we once considered to be ‘heavy duty’ was started in small doses;  Risperidone, which is used to treat schizophrenia and symptoms of bipolar disorder.  The doses of his sleep and anti-anxiety medication were increased.  Then an additional drug was also prescribed, to be used when nothing else would work and his anxiety was spiralling uncontrollably.  He took this gladly on the occasions he needed it in the day.

Nothing was working. 

Thank you for reading part 1 of this story.  I hope that you will follow this page and continue on this journey with us.  It is a tale that describes both the good and the terrible in the system in a way that makes its failings undeniable.  Click here for part 2.

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[1] Child and Adolescent Mental Health Services.
[2] The Education Investigation Service (EIS) is the Local Authority’s statutory service for the enforcement of school attendance and other education related legal interventions.
[3] Known to many as Social Services.
[4] Neurotypical: an abbreviation of neurologically typical, tends to be used as a label for those who are not on the autism spectrum.
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