Stepping Back

A Recovering Hypervigilant Parent of Neurodivergent Teens

(Note: Highly recommended in Audio format)

Many parents of neurodivergent children experience constant hypervigilance: Anticipating an endless stream of problems before they happen, solving crises, standing up to bullies and battling oppressive systems on their behalf. The constant cycle of the invisible fight becomes so routine that it becomes difficult to ever consider standing down, or even know what that looks like.

As the hands-on parenting years slowly draw to a close, you’re left trying to gradually hand over the reins, while feeling like a soldier who’s left the trenches but remains there emotionally. The metaphor isn’t accidental. Many parents of neurodivergent children come out of these years carrying genuine trauma.

You continue to function on a ‘war footing’, your nervous system trained to be that way over the years, until it becomes the default setting. And now you can’t remember how to be any different.

There came a point when I realised my hypervigilance, once necessary, had now become overbearing and was ultimately reducing my daughter’s own agency.

On my current trajectory, I could absolutely see myself becoming that mother. The one ringing my twenty-year-old daughter’s manager because he had the audacity to tell her off for being five minutes late for work.

Or worse.

I picture myself striding across Tesco staff car park, wrestling Riley from Fruit and Veg to the ground and attempting to strangle him with the ties from his blue nylon apron.

‘Help,’ he would gurgle.

‘Mess with my daughter again and I won’t be so lenient next time,’ I’d hiss into his pallid, spotty face.

(I would sound like Reggie Kray. Because that’s my default persona in any confrontation fantasy - see audio version for more).

A proportional response, surely? She couldn’t help the traffic. He has no idea what she’s been through. How dare he.

Fortunately for Riley, this scenario is unlikely to play out. I am disabled and can’t walk very well. The more probable outcome is that he would effortlessly outpace my most vigorous shuffle, before I fell over and had to ask him to help me back up again.

At best it would be an amusing diversion for the staff having a cigarette break on the loading dock.

I’m obviously not advocating attacking actual supermarket staff in car parks. My point is that your nervous system is left with the emotional residue from years of fighting.

You don’t just stop protecting your teens as they move towards adulthood. But your role becomes entirely different. Especially when you have oppositional-profile daughters, who value independence and agency above all else.

You’re now there to support from afar, to remain loving but give input when invited. Your role is that of someone who’s been forcibly retired then occasionally asked to come back as a consultant.

Only your nervous system hasn’t got the memo, and still thinks it’s CEO.

In the famous book, ‘Let Them’ Mel Robbins tells a story about needlessly interfering in her daughter’s choices around prom.

Oof. Did I relate to that. My daughter’s prom was recently, on the hottest day of a legendary heat wave. She was worrying about her hair. I was worrying about everything else.

‘Have you got a fan, should you put your hair up, is the venue air-conditionioned, have you drunk enough? I’ve not seen you drink for hours, take some electrolytes, make sure your phone is charged, let me know if you need picking up early, is the dress too warm? Don’t go outside for photos. Wear a hat.’

Wear a hat?! And ruin the hair. I’d clearly lost touch with reality.

My job in this scenario was to buy the dress, book the hair appointment and make a few drinks, as well as plenty of supportive noises. Nothing more.

‘Let Them’, I reminded myself as they all trooped off after prom to a remote campsite with no toilets, running water or tents. They were woefully ill-equipped.

One very game set of parents had volunteered to discreetly supervise from afar in case of a genuine emergency.

But what if it was hot, or cold? Did they have water bottles, warm tops for later, fold out chairs, adequate phone signals. Was there insect repellent? What if the camp fire got out of control and burnt the whole County to the ground?!

Predictably they did get cold, they got bitten, they were boiling hot and thirsty when the sun came up. They got no sleep.

They also had a great time. That’s what they’ll remember, not some mild discomfort.

I recall ‘camping’ in a field with my friends when we were around the same age. We all got severely stung from head to toe by nettles, it was pitch black and we had no torches, we were freezing cold and damp by 4am due to having no sleeping bags. We hydrated with Malibu and Coke.

The result? We had a fantastic time! I still recall the fun of it now, 35 years later. As a Gen X-er you can be sure my mother wasn’t there fussing with bottled water and insect repellent. It’s almost like by letting us make mistakes, we would learn to do it differently next time. And learn we did.

It was brought home to me recently in a meeting about my daughter transitioning into Sixth form, that all the years of working on assertiveness, self-advocacy and communication skills had paid off.

It’s now only two short years until my daughter will be out in the world caring for herself. Possibly at University some miles away. Yet, ever on the offensive against ableism, and with a history of anticipating problems and shooting them down before they can even fully form, I immediately launched unprompted into my speech about accommodations.

Until I noticed I was giving long winded justifications I’d not even been asked for.

I stopped myself mid sentence and apologised, letting my daughter talk instead.

In a few sentences, she explained her physical and mental health challenges, the adaptations she needs to succeed, and delivered it in a way that clearly landed. Her new Head of Sixth Form agreed to her suggestions and they discussed the details of how it would work. Job done.

Meanwhile, I managed to feign a relaxed demeanour, despite any formal meetings like this one automatically turning my internal pressure gauge to ‘high,’ I managed not to relieve it with an explosion of words.

Or to quote from the Equality Act.

Progress.

In future, I’ve resolved to focus only on issues which are systemic or of genuine consequence. Or those that might need an adult context or experience to figure out. The day-to-day issues of friends, teachers, school work and casual employment, everyday minor setbacks, can be mentally filed in the category of ‘advise when invited.’

Instead of taking control and directing by default, I will try to be curious, and ask questions along the line of, ‘What do you think could be some options for handling this?’

(Rather than, ‘you need to taser Riley if he talks to you like that again.’

Only joking. Kind of).

The handing over of the reins is very individual in both timing and the extent to which it can be achieved. But we will all face points where we need to trust our kids with decisions.

Sometimes things go wrong, like when my daughter Googled how to stop her insect bites itching at 2am and was instructed (by Tiktok), to press hot spoons onto them. Her interpretation of this advice was to put a metal spoon in boiling water, straight from the kettle, then press it onto her skin. Suffice to say she looked like a victim of medieval torture.

(We later decided this would have been a punishment called ‘a Spoon Scalding’ and be meted out to women who were too loud and had opinions. Like us).

Regardless of incidents with campsites and hot spoons, our work is no longer to helicopter, but to turn towards ourselves and figure out how to calm our nervous systems after years of fighting.

To process the invisible trauma of it all so we can be a calm and reasonable presence, who our children still want to consult.

Even when they no longer have to.

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Note: I wanted to write this article in part for parents still very much in the trenches with younger neurodivergent children, fighting battles that no one sees. It can feel relentless and even hopeless at times. You fear for the future constantly.

Please know that your love, listening and support will absolutely pay off, although it may not feel like it right now. Our kids may need more and different support, and for longer, but they are resilient, amazing little people who are often a lot more capable than our anxious parent brains will allow us to believe.

One day you may find yourself sitting quietly in a meeting while your child calmly explains exactly what they need. And you’ll realise your monumental efforts are starting to pay off.

Until then, hang in there. I see you, and you’re doing an amazing job.