Hyper-vigilance and Exhaustion as a SEND parent

In the middle of last year, I burnt myself out, which resulted in me developing shingles. I had exhausted myself into a very painful illness: emotionally, physically, mentally, spiritually and other -ally words my exhausted brain can not think of right now. Which you might imagine is a huge problem, given my profession.

And it has been. The first thing that goes when I am exhausted is my creativity, and eventually this all burns away until all that is left in the casserole dish that is my soul is a concentrated and gloopy black syrup, within which it is a huge effort for me to do absolutely anything at all. Write, read, crochet, stand up, load the dishwasher, go on the school run, answer emails, put the laundry on, read with my children – I have to fight through the syrup to do any of these basic day to day things, and I often get stuck. I’ve continued to do all those things of course, but not without me using energy to come up with creative new methods of unsticking myself from the syrup. I have to give myself a pep talk for 5 minutes before I can get myself to take a shower, but even giving myself these pep talks sometimes means I have to focus on being kind in the way I talk to myself mentally and overriding the easier urge I have to be mean and call myself a lazy bitch.

From the outside, I don’t think I give the impression that I struggle with anything at all: I am often told by people that they can’t believe how much I can pack into the day and I am often quite confused by this because I am a millennial, so unless I am being productive with every second I feel the weight of guilt about those missed seconds where I could have been hustling. “Have you considered making money from your crochet?”

And I do pack a lot into my life. Over the last 6 months I have made a conscious effort to not take as much on; look after myself, go to the gym, focus my energy only where necessary and do restorative restful activities. And I have made huge strides in these areas, mainly I feel less angry about things. I don’t need to use my precious energy to jump into an argument when goaded, I don’t need to care about every little thing on the news. I take notice of things that I enjoy and revitalise my energy. My attention, time and energy is my precious commodity. I don’t need to be all things to all people. I am really proud of how I’ve been working on all these things.

Why then, am I still exhausted? Why do I get so overwhelmed, so overstimulated everywhere I go? Why suddenly am I insanely sensitive to noises (especially repetitive ones) or find certain types of light exhausting like suddenly I have developed a sensory sensitivity? Am I just being dramatic and sensitive (which are two things I have been called my whole life) because I have recently done courses and research into sensory sensitivity and perhaps I’ve internalised this knowledge and taken in on board these as optional traits because that’s the kind of dramatic person I am.

Why can I not sleep all the way through the night anymore? Any tiny noise wakes me up from my very shallow sleep like it did when my boys were newborns; but they aren’t newborns anymore and have slept through the night for years at this point. My nervous system feels as it is on edge and under assault at all times. “Other people are coping much better with much more, Gemma,” my inner saboteur tells me. “You aren’t the first parent ever, you need to be dealing with this better, like everyone has done before you. Get over yourself.” (As you might have gathered, my inner saboteur is a complete bitch and I hear this inner monologue in my own voice. Take from that what you will.)

Why can’t I approach stress like Max Verstappen?

I was doomscrolling last week, which I know only exacerbates my general feeling of overwhelm but disassociating from reality is a tried and tested method for me at this point, I came across a video about the experience of being a SEND parent and it explained about how it means you are hyper-vigilant at all times.

To environment.
To mood.
To sleep levels.
To plans – have I planned too much or not enough?
How much support should I be offering so he can do a certain activity versus allowing him space to trail and error for himself?
It’s winter and dark at 3pm, so I need to make sure I have a safe way to get him home, but I also don’t want to make him scared of being out in the dark because we live in England and it’s so dark for so much of the year.
Has he recently had a growth spurt so his vision might be worse at the moment?
How long has it been since his last rest day?
Why is he info-dumping again?
Why is he not info-dumping at the moment and what have we been doing right – I must make a note.
Am I giving my youngest enough attention today?
Have I overcompensated with giving my youngest too much attention because I find being his mum much less overwhelming at times?
OH MY GOD, why is everything always lost or in doom piles all over the house – THEY’RE TRIP HAZARDS, GEMMA. He medically finds it hard to look for things, give him a break, but also, he needs to learn to use the tools he has to find things so he might possibly be independent some day.
Are we getting fewer birthday party invitations this year because we are awkward guests who sit in the foyer during the party or are people not having parties this year?
Should I be advocating for him more or have I freaked other parents out by advocating too much?
Are people fed up with me?
Why do I feel as though I have to advocate and teach everyone at all times? (“He doesn’t look autistic.” “Why doesn’t he look me in the eye, it’s quite rude.” Ah, yes, that’s why I feel I have to advocate all the time.)
Is he overdue a hospital appointment?
Why don’t I have enough energy to do the things I want with my business or focus more on my relationship because I fall asleep at 8pm.

So, the hyper-vigilance made sense to me. I had thought, once upon a time, that I’d get used to all this, and naturally start operating on a different and higher level. And I do operate on a higher level most of the time, but it only takes the smallest thing to completely derail me. And I mean small, tiny things. Big things that happen in our life, I can approach them head on, easily and I don’t feel phased. But a small thing like answering an email or buying perfume for myself because I have run out feels like a mountainous task, that I ignore for months. And I only buy last minute, the morning before we are going to a wedding and am rushing about trying to sort the boys out for the babysitter, so I buy the wrong perfume. Taking it back adds another task to my list that I do not want, so I’ll just use the wrong perfume for the next few months. But I will keep thinking about the expensive mistake I’ve so flippantly made and how I will need to learn to be better for next time.

It’s been more manageable, of course over the last 6 months or so, since I started taking better care of myself and listening to my body and treating myself with kindness. But it’s not going to go away, I can’t “heal” from what has triggered this hyper-vigilance in me because well, I love him. He’s brilliant, awesome, smart and hilarious. It’s not like the regular parental stresses where if I don’t do the laundry for a few days, and it simply means we won’t have clean clothes. We can adapt to the consequences of that.

It feels more life and death than that, quite literally the other day, when I’d had some bad news that afternoon and on the school run that day, I was thinking about it and accidentally disappeared into my own thoughts when I suddenly saw my eldest heading straight out into the road. Luckily, Nick (my partner in all things, including hyper-vigilance) was there, perhaps why I let my thoughts felt safe enough wander slightly and grabbed him before disaster. It was one second of having a thought and regular reaction to something. Can I be on and vigilant all the time? No, not healthily. Not technically. But what’s the alternative?

If I give myself a moment for a breath on the school run on bin day, it’s likely he’ll crash into a bin … on his new bike that he’s just starting to get used to the new size and weight. If I give us a day of rest from getting used to the bike, walking to school is somehow much more challenging: excitable and erratic bouncing all over the pavement where I have to guide him to stay on the pavement, help him navigate around the other people on their morning commutes. If I give myself a pause on constantly chasing for new appointments, suddenly it’s been weeks and his glasses prescription is too weak and we set ourselves back. Am I doing too much for him, so he’ll not be properly independent and become one of those adult men who can’t do anything for themselves? I’ll give them the responsibility of putting their own clothes in the laundry basket … but stickers will be left on t-shirts, which block up the washing machine and flood our kitchen. What if I sleep too deeply and I don’t hear them get up in the night after a nightmare? Or he falls down the stairs? Or trips over a Hot Wheel left on the floor that I missed and didn’t tidy up? Do I repeat myself too much while trying to get a simple task like putting shoes on so eventually he’ll resent me for being such a boring and nagging old hag? Do I shout too much while trying to get them out the house on time and that’s all they’ll remember of me from their childhood?

A family friend mentioned to me that they had noticed when doing some work at a SEND school, that the mums in the car park were always cross, angry and often arguing with each other, and they were wondering about why that was. I knew immediately. Being a SEND parent means you feel like you always have to fight. For appointments. For acceptance. To educate family members and friends. For a space at the table. For everything. Even to get a diagnosis you are made to feel that by trying to access one for your child you are somehow defrauding society in some way. (“Everyone is a little bit autistic these days.”) And when you are fighting all the time, for everything, on so many levels in your life, you lose the sense of boundaries and end up fighting everyone. At all times.

I feel a lot more relaxed now that I’ve gotten that all off my chest. Thanks for reading.

In the relatable words of Jerry Smith: