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For some time, and unknown to us, Spike had been hard at work, piecing together a jigsaw puzzle of anecdotal data and parental cautions. This unseen exercise of his neurons resulted in the following unfortunate news: we all die. So, contrary to our refrain that "life is not a video game", it turns out to be just that: specifically, Minecraft in hardcore mode (although, arguably, with fewer zombies). In the 6 months that followed this realisation Spike was, understandably, preoccupied by it.

I can’t remember how I came to know of death. Certainly, sooner than Spike but, otherwise, in a similar fashion. We are both fortunate not to have lost anyone close to us in the early years of childhood. A standard diet of movies, books, games, news reports and personal stories, nevertheless, eventually congealed into this blank wall that we all face (or door, if you are religiously-inclined). While the notion of death can only be a blow - and there is no right way to process this information - Spike has grappled with it quite dissimilarly to me. I suppressed thoughts of death, and only allowed myself little sideways glances at it, sensing that I should take my time to come to terms with it. I knew, instinctively, that plunging head-long into the abyss would be unhelpful to me. Instead, I lay in bed planning escape routes in the event of a domestic fire, and had wild dreams in which I had to stay hidden from unseen eyes, or else the world would end.

Spike, on the other hand, saw death everywhere. He re-visited mentions of death that he had read about in reports and stories (and sought out new ones) finally comprehending the gravity of the turn of events described. He over-generalised - imbuing many simple losses or ends that he would have previously shrugged off, with something like grief. He doodled gravestones and perseverated on his own death and that of his loved ones. It was distressing for him, and hard to watch. His obsession particularly disturbed those who did not know Spike well. They were alarmed that this intense focus on death was a sign of suicidal ideation. Those close to Spike were quite clear that it was not that at all - he was terrified of death, not wishing for it. This was existential angst.

We also knew that there was only so much we could do to help: ultimately, this new information had to be processed. While this was on-going, we told Spike we loved him and that he was safe. We offered reassurance, reminding him of his own and our good health and young age. We answered questions plainly and simply, and read helpful books. We modelled and shaped his language into more accurate and healthy statements. Eventually, in time, his obsession ebbed.


In these choppy waves, we have had a primary-coloured lifebelt: the Zones of Regulation. The "Zones" are a cognitive behaviour framework, designed to help, primarily, with self-regulation but also supporting emotional articulacy and understanding. Spike can confidently assign himself to one of the four coloured zones - red (angry/scared, moving through yellow and green, to blue (sad/sick/tired). We are still working on finessing his “toolbox” of strategies which enable him to stay in or move back to a more regulated state  - the coveted green zone. Spike can even recognise the zones of others: noting at a critical point in Lego Movie 2 that "UniKitty is in the RED ZONE!!". This nascent awareness of his emotional state has particularly helped us all discern those critical points where there is greater scope for stepping back from the brink, avoiding meltdowns. Processing the concept of death without the typical level of social and emotional understanding is a big ask and, while the Zones didn't calm the recent storm, entirely, it helped a great deal. The always note-perfect Matt Davies has also spoken positively about the Zones, if you needed more persuasion of their usefulness.

At the same time as his grapples with death, Spike has been weathering substantial changes in some of the systems he relies on for emotional balance - namely transport and his video game console. Nintendo are slowly killing off his beloved Wii, and Transport for London will insist on shuffling the buses around our great city with gay abandon. Chuck in the merest whiff of puberty hormones, a couple of bouts of gastroenteritis and discovering swearing ("Oh no! I've done a &*%$ing poo!"), and it is safe to say, he - and we - haven’t had the easiest time of it, recently. 

As well as the Zones, we have been hugely aided by the written word. I am in the midst of writing Spike a social story about change. For the uninitiated, a "social story" is a kind of individualised first-person short story that breaks down a challenging social situation into understandable steps. Irrelevant information is omitted and good strategies for managing the situation are clearly set out. The goal is to help the reader understand and cope with the situation described. They have been a really useful tool for Spike, who sets great store by the written word. He often memorises them and revisits them after the event. Recently, he has taken to repurposing old social stories for new challenges. Social stories have meant that, while not passing wholly without incident or comment, we have, of late, avoided street-side meltdowns and physical damage to devices. 

I can usually write a social story in short order, but I'm finding this one hard. Change. Wanted or unwanted. Small changes and big ones (a relative concept when entering the world of the neurodiverse). Changes that you can mitigate and those that you cannot. Permanent changes and impermanent ones. Between these lines is life. I think it might be less of a story and more of a book. 

Writing the story has also made me realise what superheroes we all are. STUFF HAPPENS. So much stuff! And we suck it up! We analyse and process, weigh up and squash down. We are, to a greater or lesser extent, flexible and resilient. Imagine not being that. Imagine feeling assailed in such a way that your primal fight or flight response is triggered multiple times a day by the mundane ebb and flow of life. Imagine being floored, in the moment, by a bus on diversion in the same way a death might impact you. That is not Spike’s every-day, but it is some days. So, this is a big one. And how we convey the reality of life and the tools we give Spike to handle the real world is important. It strikes me that there are some neurotypical adults who still have not learned the main thrust of this social story, so this is a great opportunity. If we can teach Spike this - how to surf the top of the waves, and not be tumbled into a maelstrom of white water - well, that would be...everything

These recent challenges have also made it apparent that we have moved into a new phase of parenting. Until quite recently, we, Spike’s parents, have been an omnipotent force in his life, able to fix everything, given a little time and creative thinking (and, sometimes, money). But, when Spike asks us to alter the infrastructure of the city we live in, so that it matches his ideal: beyond a strongly worded tweet, we are powerless. A wise friend and colleague said to me “You can’t fix everything for him. So you have to channel your energies into helping him live in the world as it is.” Balancing the need to ensure home and family are a place of refuge (for everybody), with the adage that learning demands a little discomfort, can be a tough balancing act. And what mother is not tempted to overturn the order of things (or the bus schedules) if it brings her son some peace of mind?  We are doing our very best, though.

I do recognise that these are all good problems to have. They are evidence of so much progress and learning and understanding. Spike is so much more aware, tuned in and interested in the world, these days and, consequently, he is more vested in it, with all the joys and woes that brings. He has his feet on the ladder, and we won't let go until he has reached the top.  And, clearly, we will keep holding on, even then - because that seems like a really bad moment to let go. Gah - analogies


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