On giving up; on putting hope to bed: on sunlight and shadow

Tht title doesn’t sound enormously hopeful, but don’t misunderstand me. I am having to adjust and refocus because of life’s strains and must write this without giving too much detail in order not to impinge on privacy or agency.

I don’t know why I didn’t grasp it before, but in attempting to live more carefully in the moment, I had, nonetheless, not noticed the impact of my other behaviours and modes of thought or that my hopefulness and intense optimism were, in fact, harming me. It’s not that I am saying I am going to become more pessimistic, cynical or negative, just that I have kept hoping and trying to find the positive side of things for me, for us – and all that has done is make me more exhausted and, ironically, less able to roll with it and see what is right in front of me. I think what I need to do – what I must do – is to let go of expectations and I will try and flesh that out a bit now. Please proceeed cautiously with the following, because it is sad and possibly, for some readers, enraging – even triggering because it’s been the same for you.

Our family has been extensively let down by senior educational professionals, health professionals, and GPs over a long period. Yes, the past five years in particular, but for much longer than that. All that time, I have aimed to find solutions, be imaginative, LITERALLY project manage mixed groups of health and educational professionals. I’ve been told repeatedly that young people who struggle in school or who have patchy attendance struggle with the rest of life and will continue to do so. Simultaneously, I once ended up writing notes for lesson plans – by request but under the radar obviously – in order to differentiate for my dyslexic son. I have tried to talk about neurodivergence and autism and explain to academics at a university and on one occasion disability and inclusion, with the most concise information I had, that autism is not a mental health condition. I have written recommendations for WHY secondary staff ought to have at least the most basic training on understanding how autism might present. I have done the same on language and stance – how it can have a lasting effect on vulnerable young people. Ditto attendance policy, the legacy of which is disastrous for many children and young people. I have written to Primary Care Liasion and explained that ‘looking like‘ you’re not going to engage or failure to do eye contact cannot just be read as antagonism or setting up to fail, but might be attributable to other things. I’ve just kept going. Because of my background and because I am a terrier and because I just cannot bear it. You see, it is NOT just lack of funding in areas of our health and education provision; in mental health, disability and housing. No, it is also lack of will, hostility to families, and lack of willingness to examine, even for a moment, unconscious bias. Heads of Year have laughed at me behind their hand while education welfare told me, there with my newborn, that other parents managed things perfectly well. On a Sunday afternoon I received a long and startling email from a secondary Head to whom I had written a respectful letter about lack of SEN support and dissemination of profile information among teaching staff. I said I was worried and was there anything we can do? I was told everything was superb and other parents were clearly happy and perhaps the problem was me? I’ve been gaslit by all and sundry; last week, a member of Housing staff at a council told me that families needed to grasp that sometimes people just needed to sleep on the street, regardless of how vulnerable they were – what did people expect really? On and on and on. I’ve had my knowledge and parenting insulted again and again. Oh MUM is an EXPERT NOW IS SHE from highly paid professionals who have not read NICE guidelines. I cannot fight this any more. Because fighting it – and expecting for anything better, being hopeful for it – has achieved nothing. Not for me or for my family. Some of this I chose to do but most I felt I had no choice as a mum. At this stage, I feel that the best bet, at least for me, is to assume that it will just be shoddy and to stop scrapping and trying to improve things. If something or someone comes along who shows differently – of course it does happen – then THAT is and can be transcendently wonderful. I know full well writing this that at least some SEND parents, those who are chronically ill, who identify as disabled, those who are trying to be heard about their ME and CFS, will find me on familiar territory. I just don’t know what to say. What is more, I have not even been able to be an effective parent because, while I would throw myself under a speeding car for any of my kids, I am not a health professional and I don’t have a stake in the council or local authority provision. Furthermore, by battling, I now think I made it worse for my family, because it just exposed the paucity of resource even more. I don’t know now whether engagement is even possibly if good stuff does ever come up. Which brings me to the second point.Okay, so as a kid and young adult with a radically dysfunctional but unseen (somehow) background I had to teach myself some nifty techniques according to what I had. But I spent my young life being on high alert because of perceived threat. Some of you have read my books which tackle this and may have a little insight into it. I am not sure I have ever switched this off. The result is developmental damage which I have learned to manage, and chronic illness. I have had some good support – after a ten year search hand in hand with advocacy (see 1.) – and I am currently paying for trauma-centred counselling and EMDR because I have had ghastly flashbacks for decades and just learned to deal with it. It occurs to me that in doing less and being more accepting of how shoddy any number of things are and not expecting more, I can perhaps cultivate a state of rest in which I can identify patterns and manage them. My amygdala, you see, has been, as the therapist says, ‘exceptionally busy for a long time.’ Here, also, we get to an awkward truth. It is that, as a child and adolescent, I experienced such fear and such bewilderment that I almost cannot bear for my kids, or your kids, any kids, to feel pain – specifically in the context of their needs not being met or addressed because people would only look, not see. This needs time. I need time. Control. I have been trying to control things. We all have less control than we think. In writing and publishing that rested on the fact that people would answer emails and read my work. I now understand that the majority of the time, whether you are sending work out, or when your work is sent out by a literary agency, much of the time it just won’t get read because it falls off the desk. Everyone has too much to do. That impacts on me, but there is nothing I can do about it other than lower my expectations for what is possible for me in terms of profile or development because I am not going to be able to get my work seen. I’ve been pushing and pushing. Not any more. It hit me like a ton of bricks (books!) that it’s just making me unhappy. Prod here and prod here; I am working with fab people and meeting all my deadlines. I don’t get invited to festivals and bookshops don’t want to host an event with me. There are others who are more exciting, in demand or right for them and that is just the way it is. There’s nothing I can do about it. What I do is enough, I think. I’ve worked very hard.So I am talking about giving up and about being less hopeful. I am talking about lowering expectations or having no expectations at all. It has come from difficult things, but maybe there are fine things too. Small and perfect moments. I utterly relish time with students and mentees and, I would imagine, this is probably what I do best. The doctorate starting this December. Quiet focus. I am using my own work and thinking about others’ and apposite theories and neuroscientific texts I want to bring in. I will press on with it. I have no expectations for anything happening with it – like being offered academic work or my publishing stock and profile rising – but I want to do it anyway because it’s an engaging subject, I like writing and exploring and interrogating ideas. I think I might be creative and inventive. If pressed my best qualities are that I will do my best to be kind and reflect on what might be kind in any given context, and I am a very hard worker who can focus anywhere. I am not sure what else I would have to offer now, but these are enough.So yes. Don’t read this as a depressing post; understand it as a shift. I feel absolutely beaten down, I really do. I cannot foresee a time when anything would be different. But isn’t that rather the point? The carer, the poorly, the lost: I have been saying again and again that even then, if things won’t and can’t get better, there is still grace, there are moments of rushed beauty and always, always a story to unfurl. What is more, the past is a different country and you live somewhere else now and the future is up ahead – in a place where you can never be. All you have, we have, is this moment. I’m still figuring out a few things, as aren’t we all? Like, I want to find a way back to faith so it’s not just, you know, an occasional touch of my elbow, or something dark or radiant glimpsed from the corner of my eye: I want to be bathed in it, somehow. Do you know what the problem is with church? It’s not Jesus or whoever it is you pray to. It’s people. Broken and flawed like you; like me – with shabby egos, and desires, bad faith and backbiting because of their own hurts and perceived slights. Sometimes it feels like I’ve been running all my life. I want to stop. Calm, rest. No expectations.So let’s sit still together. I don’t know what I have to offer and might not say much. I am a shy person forcing myself to be something different and a bigger presence in the world. It affords little, as it turns out. But then you might like the book I slide across to you. And say we are sitting together and sunlight and shadow fall in quick succession across our faces and we feel it, in complicity. That would be enough. That would be good.