As many of you know our son, Orson, was born with moderate-severe high frequency sensorineural hearing loss in both ears (his hearing loss was caused by a genetic mutation on the Connexin 26 gene).

Whilst we knew there were different forms of communication available for deaf children, we felt very strongly that we didn't have the right to take away any potential choices for Orson before he was able to make the choices himself. So, we took the decision to ensure Orson could learn how to listen and speak so that had the opportunities that other hearing child had.

Auditory Verbal UK is a charity that wants all deaf babies and children to have the opportunity to listen and speak like their hearing peers. The Auditory Verbal approach stimulates auditory brain development and enables deaf children with hearing aids and cochlear implants to make sense of the sound they hear in their devices. So children with hearing loss, are better able to develop listening and spoken language skills.

We took Orson to AVUK for Auditory verbal therapy from the age of 2 and by the time he graduated from the course at 4.5 years old, he was tracking a year ahead of his age on the Preschool Language Scales assessment. For a young boy who cannot hear the sound of a bike bell, birds singing and the doorbell ringing without his hearing aids it was an incredible achievement.

Whilst Auditory Verbal therapy is government-funded in Australasia and Denmark and is a mainstream approach in Canada and the United States for teaching children with permanent hearing loss to listen and speak, it is not in the UK. The average cost of Auditory Verbal Therapy is £6,825 a year. On average a child spends 2-3 years on the course.

Orson in now in Year 3 and has just moved to a new school. He’s settled in amazingly, making new friends and trying out new sports. The larger environment is definitely more challenging on his hearing and he’s super tired when he gets home but he is so determined.
Orson is very aware of his deaf identity and the impact his hearing loss has on him but he refuses to let it hold him back. He’s definitely a young boy that will never give up until he’s accomplished what he set out to achieve! He’s a constant whirlwind of energy and has the ability to ask you questions about the world that you struggle to answer! He’s an avid reader, could chat to you for hours about Minecraft and Terraria, loves swimming, running and playing football.

AVUK has been life-changing for our family and we are eternally gratefully. We know are very fortunate to have been able to fund the therapy but for many deaf children in the UK they miss out on this opportunity.

We would love you to join us and raise awareness for Auditory Verbal UK by joining in with Loud Shirt Day on 22nd October 2021. If you can wear your brightest colour clothing for us to make as much noise as possible.

We will be fundraising for 6 days - 20th-25th October. Here is a selection of the fun things we will be doing all based around the number £6,825 (the cost for one year’s worth of AV therapy):

Orson will running for 6.8 miles over 3-4 days, swimming 6 lengths of a 25 metre pool, writing a story that includes the number 6, 8, 2 and 5, reading 68 pages of a book every day and reading a bedtime story to his sister for 6 minutes every night.

Mei will be scootering for 6825 seconds (1hr 53 mins) over 6 days, doing 68 cartwheels and reading 6 pages of a book.

Martin will be painting for 6 hours a day (although I’m sure he’ll tell you it will be more like 68 hours!) I'm also sure we'll get him out on a family run too!

Avril will joining Orson and running 6.8 miles and walking 6825 steps every day.

Grandad will be running as many miles as his achilles will let him!

Avril Grimer