Neurofatigue

It’s not a term that I heard until recently, and only then did some things fall into place:

Dropping off my son at his dad’s when he was little and him crying, not wanting to leave me; being firm and leaving because he was entitled to a relationship with his father;

Coming home and collapsing into bed in floods of tears due to an exhaustion I had never experienced before and a sadness whose rawness took my breath away, made me want to be dead.

Trying for something when my son was younger called “respite” which, apparently, I deserved because my son’s often challenging behaviour was due to his autism, and I did apparently need to rest;

Finding a play scheme for Saturdays and being the Bad Guy for asking his father to pick him up from the play scheme rather than for me to bring him to his and his wife’s apartment at 11:am prompt on a Saturday morning.

His father not speaking to me for three weeks and being on holiday during this time so that he didn’t see his son for a month. But this being because of your anger and nothing to do with his unwillingness to compromise and your mental and emotional exhaustion, which it was taboo to mention.

Fighting for everything: schooling for my son when he was excluded from mainstream and nobody seemed to want to resolve the situation; for support for me and my son because I am mentally ill and he is autistic. And people and agencies simply never replying to my voice messages and emails;

Wondering if I really have done something Terribly Wrong, for which this is all a punishment by my son’s father, my father, the National Autistic Society and local authority support agencies.

Wondering if I will ever live through this, and hoping that I won’t. Then being struck with guilt and anxiety because I never want to abandon my son.

My hard shell, my ‘rallying cry’ about which my father and my son’s father and people not familiar with me disapproved; yet it remains the thing that stops me from taking the Final Exit. And I craved that for months and years, but kept my mouth shut because, by this time, people wanting to help me wanted me to treat them with some sort of deference and gratitude because I was somehow a schmuck.

Except for a couple of people; who saved my life without knowing it for one second.

Experiencing breakdowns and medical reviews and outpatient support and discharge by people when I didn’t make it to the appointment because of something I had never experienced before: a depressive episode.

Withdrawing further into my shell and gritting my teeth and blocking out the thoughts of suicide of self-harm of heroin overdose over and over and over until something put a little break in those thoughts: physical exercise. Burning out and breaking down and it taking several weeks for my referral to the person who put me on the right medication because the rude GP put the envelope behind the Reception desk and told no-one. For three weeks. Until the psychiatrist’s secretary contacted me to find out what had happened.

Then there is the SEND crisis in this country which, in 2018 when my son was excluded from mainstream school, was termed a “national scandal” by the Chairperson of Ofsted. That was another year in which a group of mothers of children with special educational needs marched to the High Court to demand reform on the Special Educational Needs system.

It is 2024, and a BBC article proclaims that the SEND system is “broken”. No shit, Sherlock. Financially unsustainable and in need of urgent reform, apparently.

Many families apparently had their mental health to begin with, but have lost it due to the exigencies, mismanagement, tribunals, off rolling and other unlawful activities; the dubious hegemony of investment-backed organisations charging Local Authorities £100,000 per child per year doesn’t help at the brink of bankruptcy.

Except that these marvellous companies are doing what British state education cannot do: act in flexible ways, offer education to children with special educational needs and make enormous profits.

Worthy web site rhetoric gives the impression that these are “leading providers” of special education; mention of “safe” and “capable environments” make it seem that every penny couldn’t be better spent.

Except when you scratch the surface. A Dickensian Bedlam operates beneath a public guise of Positive Behavioural Support; what you don’t see are the exclusions of children within the walls of the school; the isolation rooms in which children are kept separated from their peers and the other pupils told that they aren’t in school that day.

The bruises on the children due to over-zealous restraint, called “holding” and “guiding away to a safer place”. The lies to the Local Authority Designated Officer investigator; the inside-jobbers retraining as Ofsted inspectors, corporate ‘change managers’ and so forth. “Highly trained” staff who are barely out of nappies and who haven’t got a moral compass.

Now, in 2024, I take some time to reflect. I did something the other day that I haven’t done for years: I stuck my head above the parapet and said that I was struggling on the neighbourhood online community. I have asked for help on so many occasions and have been ignored by: GP, Social Services, the National Autistic Society, mental health assessment without the doctor having read my notes …

Brain injury shows you something about humanity: its squeamishness when anything to do with the brain isn’t ’standard issue’; people back away from you because you look too “well” to have needs or a disability. Ditto Autism. Ditto Dementia, up to a point.

And so, in the shadows of the isolation from the local parents of neurotypical kids who never asked after us once my son was excluded from the mainstream school we live behind in 2018; in the denial of help by Local Authority and other agencies; I lit my own torch using a mixture of Buddhism and Machismo. Mindfulness in weight training led to me making my own self-esteem.

I have gone through hell to get to where I am today. I have trained my body and my mind to achieve the capabilities to face what seemed at first to be demons, but what reveal themselves, over time, to be unhealed parts of me crying out in pain. A pain that I couldn’t face and hear because I had no self-esteem, no sense of capability until I had been training for a few years.

Nothing happens by mistake. Serendipity leads the flow of my life and, when I remember to put my faith in it, it leads me further on my Healing journey.