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Climbing the perpetual mountain of paperwork for my little girl with disabilities

helenbielby

Hermione Volume 1 🤩.


That's the title I gave to the first folder full of paperwork we've gathered since Hermione was born.


Appointment letters and reports; draft EHCPs; final EHCPs; disability living and carers allowance letters... It's a lot of poly pockets 😆🙈.


It's a lot of time too ⌚.


In between Hermione's gorgeous moments and the challenges, and, of course, the illnesses, there is much filing and organisation to be done.


Sounds like a boring post really doesn't it? 😂.


I think it's gradually dawned on me in the past couple of years, just how much work a parent carer needs to do in order to keep the engine oiled and the wheels turning.


It's taken me some time to adjust to the new role of not only mum, but carer too.

And caring encompasses such a lot of things. The physical and emotional care, and the care that encircles around the energy you need to keep on top of the system your child is in.


Appointments and meetings must be managed and planned for.


The logistics: where do we park? Will Hermione need the buggy or will she walk? Can both parents go?


Usually one of us needs to entertain Hermione whilst the other actually listens to the professional talking. Then there's the energy it takes to manage Hermione during the waiting time and then the actual appointment.


Then paperwork must be filed and sorted.

The evidence must be placed in a folder, ready to pluck out for any new application for help, whether that be financial or physical.


Keeping on top of the paperwork is keeping on top of the system.


I'm about to get to work on Hermione: Volume 2: coming to all good filing cabinets soon 😆.


And you do it for love. Utter bloody love for your amazing little human.




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