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Getting organised

Published Date: 27 Jan 2022

Our little boy, Lucas, was diagnosed with severe-to-profound sensorineural hearing loss earlier this year at the age of eight weeks, and we were suddenly thrown into a world that we weren’t expecting. A world that necessitated numerous audiology appointments, paediatric referrals, Teacher of the Deaf visits, and also lots of information gathering.

As a first-time mum, two months post-partum, I was just about managing to get myself dressed and on time for a midday coffee with friends. So the prospect of driving 45 minutes away to arrive on time for regular early-morning appointments felt really daunting. I also felt like I was constantly juggling appointments for Lucas’s hearing loss, breastfeeding clinics, health visitor appointments, and baby vaccinations, along with baby and toddler meet-ups to keep myself sane as a new and knackered mum. I needed to create a system to stop my brain from exploding.

I was always the sort of kid who got excited at the prospect of new stationery at the start of a school term or a new diary at the beginning of the year, and that hasn’t really changed now I’m an adult, so I thought I’d harness this and turn something challenging into something enjoyable. I bought four things that have proven to keep me sane over the past few months:

  • A little slimline diary where I capture all appointments. I keep it in my change bag, and it comes with me everywhere.
  • A pen with four different colours so I can write down Lucas’s hearing appointments, general health appointments, baby and toddler appointments and my appointments all in different colours.
  • A bigger notebook that is for everything relating to Lucas’s hearing. I’ve split this into three sections - a rudimentary diary at the front where I pencil in all of his appointments, a bigger section in the middle where we jot down all of our observations of Lucas and his listening journey, and a section at the end which contains all the information I’m learning from the National Deaf Children’s Society’s articles, webinars and parent courses. This stays out in the kitchen with a pen next to it for us all to write down observations as they happen.
  • A small lever arch file with dividers where I keep all the documentation relating to Lucas’s hearing: appointment letters, test results, audiograms, development charts, and Teacher of the Deaf reports. It’s already half full and he’s only five months old.

This is just the way we do it, but the main thing is finding a way that works for you and your family, that isn’t a chore to keep up with, and that helps you to feel a bit more in control rather than feeling like you’re clinging onto a runaway train. If nothing else, it’s a good excuse to treat yourself to something nice from Paperchase and get a bit creative!

Tess

Tess and her husband Drew are parents to Lucas (10 months) who was diagnosed with severe-to-profound sensorineural hearing loss at eight weeks old. They are just starting the assessment process for cochlear implants. They live with Lucas’s half-sister, Mairead (13), their Labrador and cat.