The weight you don’t see: Unpacking the invisible load of SEND parents
Have you ever stopped to think about the invisible load you carry each day? I’m talking about the mental, emotional, and logistical effort that is necessary to keep life ticking over, often unnoticed, rarely acknowledged. It’s the endless life admin, the quiet planning, the constant vigilance. Tasks that don’t earn praise, can’t easily be delegated, and only disappear once they’ve been permanently ticked off your list, or handed over to someone who is both willing and able to help.
We all carry invisible loads that are uniquely shaped by our circumstances, like rocks turned into pebbles by melting glaciers, only our loads get bigger not smaller. Whether we’re single or have a partner, a parent or childless, living alone or with others, even the small stuff helps shape it, like whether you’re the one who has to remember to buy and distribute toilet roll around the house ensuring no one ever has to go without or shout for a roll delivery in an emergency (not that I’m bitter).
Our loads feel most manageable when life runs smoothly. But when something goes wrong, like the car you rely on breaks down, or when someone you love gets sick, that weight multiplies.
I’m a mum to neurodivergent twins. One of them can’t attend school due to severe school-based anxiety. My invisible load? It’s hefty. And it grows every day, thanks to a SEND system that’s unfit for purpose. When I try to hand over responsibilities to the relevant professionals, things don’t get easier, they get messier. So, I hold on to things tighter, as more weight continues to be added to my figurative rucksack that’s already bursting with responsibilities.
The weight of it all can be hard to manage. But I’ve found strength in connection, with others who carry similar loads. That’s why I teamed up with a colleague to create a support group for parents and carers of neurodivergent children. It’s called Neuro PCG and we now have 80 members, roughly 3% of the total workforce. We meet monthly, alternating between peer support and expert-led sessions. We’ve explored topics like PDA, attention and focus, and assistive communication tech. We’ve even developed best practice guidance on how to support staff with neurodivergent children.
The people in our group get it. They can’t take the weight off my shoulders, but together we can stand taller.
Here’s a glimpse inside my hefty rucksack, at some of the stuff that’s nearest the top:
Finding a suitable school for my daughter after the local authority failed to do so, and it’s been anything but easy and still not over yet.
Fighting for her to get access to talking therapy, then helping her feel safe enough to even try it (another live issue).
Encouraging her to accept contact from the school once per half term, knowing it retraumatises her every time.
Anticipating sensory and emotional triggers before they happen and finding ways to help her regulate without reaching overwhelm.
Learning SEND law inside out because I’ve had to.
Filing formal complaints due to the lack of alternative education provision.
Tracking and attending so many medical appointments, chasing prescriptions, and hunting down medication.
Managing mountains of paperwork: assessments, access arrangements, support applications.
Tracking multiple deadlines across overlapping processes, just so I can chase when they’re inevitably missed.
Navigating well-meaning but misplaced advice from outsiders who think they know better.
Ensuring she eats, drinks, and stays safe every single day.
Then there’s the constant worry about her future that I have to keep deep inside, so she doesn’t pick up on it.
This is just some of the weight you don’t see. For many SEND parents, our loads are too heavy to manage already, and they just keep getting heavier. This stuff is relentless. But when you can share your experiences with others who get it, at least you don’t need to worry about not being believed.
If you’d like to learn more about how we set up our network, please contact me, I’d love to share more with you so you can do something similar in your organisation!
