“A chainsaw is about to chase after me and cut me in half.”
This was nothing out of the ordinary G was walking along holding my hand in his usual grippy please-never-let-go way and I saw his head turn. Hypervigilant I turned what has he noticed? I ran through the options of what it was, what is heightening him now. He will never express the thing that is causing his anxiety, because he can’t, not won’t. He also masks, and well – until he doesn’t – then you do not want to be around, and it is a long slow loud process back to regulation.
I noticed there were about 5 potential sensory-threats, a plane above, a car reversing, the hustle and bustle of parents and kids screaming and running around; a totally typical walk to school a ‘normal’ environment for most people. “What can you hear?” I asked him nonchalantly, I have learned never to use a tone that definitely needs an answer or appear too interested, it was vague enough for him to refuse to answer and for me to monologue if needed and it was not drawing his attention to any of the immediate sound-threats too directly. “It’s like a chainsaw is about to chase after me and cut me in half” he roared loudly and angrily with all his effort, picking up the pace and gripping my hand tighter.
Brilliant. Thanks G. This is progress.
“things are improving because I am learning”
It may not seem like it to anyone else present at that moment, after all, he is shouting about an imaginary chain saw in public in a slightly crazed way at 8.30am. But typically he would have fled completely and started screaming, rocking and not provided any insights or explanation for this behaviour, it was guesswork. And whilst most people would probably view his behaviour as ‘naughty’ it made sense to me, he was scared, he felt under threat, and he had to respond. But things are improving, because I am learning. Not to be impatient or obvious about the origin of the perceived threat. I knew from his chain saw metaphor that it was this one super squeaky scooter on the way. It’s these soft insights that explain what professionals mean when they highlight parents as experts of their children. “You are right” I said validating his response. “It is a very loud and noisy scooter; I wish it wasn’t there” I said as the girl whizzed by on it. “I hate it” he said, but he didn’t rush off he held my hand and continued to walk by me. My internal dialogue jumping up and down with glee, I smashed SEN parenting this morning! Ha-ha, take the small wins. On reflection why has this stood out, what did I do differently?
Adjustments:
- Being hypervigilant of the slightest distress to G.
- Preempted the meltdown by intervening, acknowledging, and validating the sound “you are right that is very loud”.
- I gave him the words he did not have “It is a very loud and noisy scooter; I wish it wasn’t there.” He could only go to the description of the sound and how it made him feel; he cannot place feelings or understand his… yet.
What typically would have happened? I or another adult would not have noticed the head swivel and the tensing of the body, may have missed the cue and as the scooter whizzed by. He would have fled. He would become very animalistic – growly and snarly, like a bear or a snake – in defense mode. G speaks animal mainly to display threats that stem from his anxieties. It definitely would have put him in a bad mood for the start of school and well, we all know how those days go. We now try to get him to the school gates with as little as possible in his metaphorical cup, so that as it fills throughout the day it doesn’t overspill, read here meltdown, too soon over something small and avoidable.
This has been the biggest adjustment for us as a family. Our narrative is one of two professional parents, using the system for wrap-around care and after school clubs that can have and do it all. Now we must drop off and pick up on the school gates, our careers are taking a hit from where they should be. But maybe more on this shift in our life another time; currently I’m still coming to terms with the reasonable adjustments I now need because of someone else. I wish I didn’t have to have make.
“We must save all the worms, isn’t it their right?”
The other recent walk-to-school issues summarises the complexity of G’s needs. Is it autism, sensory or more mental health, the experts have their opinion. Ultimately it doesn’t smatter, it’s just his reality, but we are exploring OCD and mental health anxiety more and more at the moment. I am only just becoming aware of the nuances between what is his autism and what is mental health. For me they seem so connected. When any health practitioner asks me about his OCD I say things like, he has a very ordered bedroom and if one thing gets moved then the whole house is in freefall meltdown until the thing is found and returned to it’s rightful place and order is resumed. No, no no, they tut that’s not mental health (really?!) it is connected to his behaviours and autism. However, they agree his rituals are OCD and can be controlled with therapy and medicine, and therefore we need to help him unlearn them. At this moment we have many professionals engaging with him to try and undo these ritual thoughts, they are driven by fear and failure. But we still await a CAMHs referral and have been refused once (ironically refused because of an OCD trait which I had mistook at the time for autism hand in head moment – see how ‘on it’ you need to be to gain the right access!)
“I’m on the precipice of a parenting cliff, clinging to the side“
Anyway, at the moment, G will not walk on unless he has checked the sole of his shoes. So, every few steps he checks for worms. He is petrified of “murdering” a worm and when we see worms, we “must save them… we must save them mum, isn’t it their right?”.
I hadn’t thought about whether worms did or didn’t have rights before, but if G thought they did they do. So, I am the parent head down in the dirt scrambling around in the rain picking up unfortunate worms from the path and putting them in the grass, it is me that nearly gets run over by the scooters and other parents instead of the worm as I bend over with all G’s bags balancing a brolly precariously to save this little creature from decapitation. Other mums must seriously think I am nuts. I am now used to that. The things you do. I actually feel nuts more often than not, especially whenever I am near school. It gets easier presenting as “slightly wild with a crazed-eye and on the edge” this is how my sister and I joke about our situations as we know it is a look no one wants to know how you got. Well, I am on an edge; I’m on the precipice of a parenting cliff, clinging on, trying to keep G and our whole family on the top and not freefall to the bottom.
This process of walking to school can take a 10 min trip 45 mins, it’s painful, but you can’t rush or disrupt the process or… yes of course, meltdown. Another adjustment that I am learning slowly, as I am not the best at it, patience that is! Finally, on the 45 min walk to school mornings, it is the rainy cold days that are the hardest. Not for me, snug and warm in all the layers and waterproofs. But for G, bless his sensory needs, as I have said before in the ‘Blog 1: the trigger’ he can’t not won’t wear a coat. He is there sodden in the pouring rain, soaking wet and cold in his T-shirt with no comprehension of the situation, he is not thinking about it, he is only fixated on the worms and saving them. I feel awful, a total failure, as I look around at all the other kids in their waterproofs walking with purpose to school.
I do hope I see the ‘wonderful’ enlightened side of hyper-sensory joy other parents of neuro-divergent people share to on social media soon.
In the mean time as a family we are learning how to be better for G every day and are beginning to embrace exploring the sensory world with him more and more.
