It’s been over three years now since our son was officially diagnosed with hearing loss and fitted with his first set of hearing aids. We went through a lot of denial in the early stages, wondering whether his hearing would improve over time, and really didn’t know what to expect, but in retrospect, there are some important things we wish we had understood early on about childhood deafness, and here they are…
1. Hearing Aids Don’t Restore Normal Hearing
The human ear is incredibly complex with up to 25,000 tiny hair cells. A hearing aid typically has up to 24 channels. You do the math! Sadly, the belief that hearing aids restore normal hearing can lead to accusations of selective hearing or laziness for children with hearing loss.
2. Sensorineural Means Permanent
Especially for deaf infants, it’s normal to hope that their ears may still be developing, but sensorineural hearing loss is permanent. The inner ear is fully formed at around 20 weeks gestation and babies are born with fully developed hearing. Whilst sensorineural hearing loss won’t improve, you’ll quickly appreciate your child’s deafness is not a flaw but a part of who they are and you’ll love them all the more for it!
3. Confidence Around Deafness is Key
In the early stages of diagnosis, you may feel that you’ll want to hide your children’s hearing device but as time goes on you’ll likely realise their confidence and pride in their deafness is more important than anything else. Your children’s hearing aids are brilliant so celebrate them – tube decorations, stickers, coils and retainers, here we come!
4. Hearing One Sound isn’t Hearing them All
Hearing loss fluctuates between different frequencies and sadly, reassurances of ‘He can hear’ can delay diagnoses and lead to hearing needs being overlooked. Yes, my child can hear you shout his name across the park, but that doesn’t mean he hear well enough to follow your instructions after.
5. Childhood and Adult Deafness are Not the Same
Adults have a whole life’s experience of sound, speech and what to expect which they can use to support their hearing. Children are learning from scratch and childhood deafness comes with a whole new range of mountains to be climbed. Whilst some adults may choose not to wear hearing aids even when they’re desperately needed, for children with hearing loss, aids are a definite necessity.
6. BSL is Awesome for Everyone!
Learning BSL takes a lot of work and there is often a worry for parents that it may discourage speech development, but this is not the case! BSL is important for children with hearing loss for noisy situations and it helps encourage confidence in communication, especially when there is a speech delay. British sign language is also great fun to learn, though Charades may be spoiled forever!
A word from the writer: How our Son’s Deafness Changed Our Lives
When Brandon was diagnosed and fitted with hearing aids in 2014, we got a standard issue NHS retainer to keep them safe. It was very basic and had a metal clip which sometimes rubbed and scratched. So, we decided to make him a new retainer that was both comfortable and in a theme he loved – Cars! Then we made another, then another and eventually when other parents asked where they came from, we opened up our own marketplace.
MyLittleEars is a website dedicate to our little boy. It aims to bring together parents of deaf children, where they can find out useful tips and information about hearing loss, as well as buy awesome handmade products for their children.
Prior to our son being diagnosed, we had worked within the transcription and subtitling sector for a number of years. Since his diagnosis, we now own and manage our own subtitling company, Capital Captions which offers closed captioning services for the deaf and hard of hearing. Through our personal experiences, seeing our son struggle with television programmes with loud music, over speaking and generally poor quality sound, we have become truly passionate captions. We want to see subtitling improve, not only for our little boy, but for deaf and hard of hearing viewers across the world.
Speakers: Prof Susan Scolie, Dr Josephine Marriage, Dr Jay Jindal
Click here for more details