Sensory overload and my experiences as a parent with a chronic illness and minor brain injury

Oh my god, my children overload me so much.

I’m writing this from my bedroom, where I have just taken myself after dinner, for something like a self-induced time-out.

Sitting in bed with a blanket, 2 cats and a laptop
I am eternally grateful for my cats

It’s Friday, the kids are over tired and silly, we’ve just got through most of dinner and I’m all out of spoons.

I’ve worked non-stop all day, assembling my special Christmas chewy jewellery subscription boxes, writing blog posts, restocking chews, updating inventory and editing my website. I finish my last orders for the day standing up at my desk, bouncing on the soles of my feet, jittery because I’m going to be at least 5 minutes late for the school run. At this point I was already overloaded.

christmas themed Chewy jewellery subscription box
Special edition Christmas themed chewy jewellery subscription box, this took up a LOT of my day

I pick up the kids, finish my last order in the stationary car while they chatter in the back and drop the orders in the postbox on our way home.

On arrival at home I then cook a Mexican feast for dinner, comprising of 5 separate dishes, interrupted at least 20 times to wipe a bum, settle an argument, take lego apart or find a missing toy. I finish just as my partner arrives home from work.

I’ve always found dinner a stressful time. I have used up most of my spoons for the day so patience is very low and I’m easily overloaded.

I’m trying to serve up dinner and eat it myself, amidst requests for a fork, not a spoon, no not THAT spoon, a different one, can I have a special drink? My son wants a straw for his drink, I get him one, sit back down, now my daughter wants one too. I’m up and down, up and down, eating my meal in 10 sittings or so. Every task I have to complete, every loud noise, every interruption shakes my soda bottle brain just a little bit, the pressure building up and up and the overload continuing to increase.

I try to catch up with my partner, update him on the parking ticket situation, party invites and other life admin, but we’re interrupted roughly ten billion times in 2 minutes until I give up.

The kids start stamping their feet on their chairs for fun, competing to see who can be the loudest. They inevitably command Alexa to play a somewhat inappropriate song at too high a volume. I bellow at everyone (including Alexa) to be quiet, PLEASE adding ‘I am going to lose my mind in a minute!’ I tell my partner I’m close to losing it.

2 children and 1 adult sitting at a table eating dinner together
A somewhat calmer Chinese New Year family meal. I have definitely inherited the chinese tendency to cook an excessive amount of food/dishes for the number of people eating

I head into the kitchen to sort pudding and close the door behind me as the kids start shout/screaming (for fun) from different rooms. I head back out and close each of the doors to those rooms in an attempt to muffle the noise.

By now I’m aware I’m close to meltdown. I am shaking a bit, trying to get on and finish the job so I can escape to the bedroom and come back down from this horrible place of overload.

I’m reheating custard I made the day before.

It’s weirdly thin and I try to rescue it. It’s not working and the soda bottle of my brain is shaken just that bit more by this.

My partner pops his head in the door and starts talking to me about the new ventilator he’s bought. A few words in I essentially flap my hands at him and screech ‘I can’t do this right now, I’m sorry!’ and close him out of the kitchen.

He ushers the children away, quiets them down.

I give up on the old custard and make new custard from scratch. The quiet soothes me a little and I think, I think I’m okay now.

Custard made, pudding served up, I sit down with my family to eat it.

I’m not okay.

I’m still hugely overloaded, stress levels super high and ultra sensitive to everything. Every question, loud noise, demand, touch is like someone stabbing my brain. Every bit of sensory input is physically painful. My youngest tells Alexa to play ‘Wednesday’ I bellow ‘ALEXA STOP!’ at the top of my voice and warn my youngest I cannot cope with the noise right now. She gets cross and starts to whinge and I can feel the pressure building and I am close to exploding. I finish eating and get up so quickly I nearly topple my chair.

‘I’m sorry, I need some time’ I mutter to my partner and rush into the bedroom. Door firmly shut, into bed. Breathe.

This is unfortunately a fairly frequent occurrence. It’s worse at the end of the week or after a particularly busy few days, when we’re all tired and fractious. Today, I did not lose it and I am grateful for that and proud for taking myself away to calm down before my soda bottle brain exploded all over everyone.

Over the years I’ve got better at communicating my needs and have started to talk to my children more about how my broken brain works, how it got like that (I’ll save that for another blog post) and what I need from them to stay calm.

My 6 year old is turning into such a kind and considerate boy. He understands if I ask him not to talk to me in (for example) those minutes leaving the house, getting everyone strapped in and backing out the drive. We have a code word I can say to the kids, which essentially means ‘I am right at the very end of my ability to cope, I am going to lose it in a minute, please be very very good and don’t talk to me or ask anything of me right now’. He’s brilliant at giving me what I need in those moments.

I have a bracelet I got from Stickman Communications (highly highly recommend this amazing small business), which is orange on one side and red on the other. I forget to use it and my son often reminds me! I wear this mostly on bad fatigue days, where it stays on orange most of the day and I flip it to red if I deteriorate and/or I’m becoming overloaded.

It serves as a fantastic visual reminder for the kids of my internal state and I always announce to them that I am wearing it and point out if I flip it to red and what that means.

I’ve adapted the way I do things to try and reduce my stress. For any situation where I know I get stressed easily, I plan as much as possible and get things ready in advance, so I have fewer demands on me in the moment.

On school days I try to make sure bags are ‘packed’, water bottles filled and everything is by the front door ready to go. When we’re going on holiday I start the packing several days in advance so I’m not overwhelmed by my to-do list. I use lists I follow closely so I know I’m not forgetting anything.

For dinner, I try to have everything ready on the table (drinks, cutlery, plates etc) so everything is taken care of and I have fewer interruptions/requests. I’ve started to get the kids involved so I have less to do, getting them to lay the table, put drinks out (get their own straws!), then bring dirty plates to the kitchen, scrape them and put them in the dishwasher.

When I’m going somewhere new, I check route times, possible parking places, nearby restaurants I can eat at if I will need to eat out.

I plan ‘rest days’ before and after big events and try to make sure I have nothing or very little going on.

Like so many others I did buy ear plugs, I have Loop ones, but I don’t find them super comfortable AND when I am becoming overwhelmed, I never remember to actually use them! Note to self, try to use these more….

It frustrates me still that I am still not great at recognising overload until it has almost turned into meltdown. I’m not great at prioritising my needs over others. I have always tended to put others first and since becoming a parent, I have pushed my needs even more to the back of the queue.

As the kids are getting older, more independent and gradually more cognizant of the needs of others, I am starting to talk more about my needs and asking the kids to recognise these sometimes and help me.

I feel a lot of guilt about the children growing up with a parent with chronic illness and issues like sensory overload. It feels (for example) terribly selfish and slightly ridiculous to ask them to be quiet in the car because I’m struggling with the noise. Or when I am so deeply fatigued I am curled up in bed in the dark and they’re having to occupy themselves because I’m incapable of interacting with them in that moment.

The kids often join me in bed when I’ve retreated there to rest. If I’m capable, we’ll often curl up and read together

I sincerely hope there is a positive side to this though. That my children will have been taught from a young age to be kind and considerate and to think of the needs and experiences of other people. To understand invisible illness and what it can look like to live with it.

That adults are imperfect and make mistakes, but it is not their fault. And to apologise when you screw up.

I am very good at apologising to the children. Sadly, this is because I mess up a lot. I shout, I snap, I’m impatient and grumpy. But I also always apologise and debrief. I make sure they know it isn’t their fault and why it happened and that I am sorry and I love them.

And I really hope that’s enough.

A good family day out together. Except for the sodding parking ticket I got.
Cats relaxing on a bed.
Overloaded
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