The sheer volume of crap in your Instagram feed means it’s rare when someone’s profile stops you in your tracks. I came across James Knott’s account when I was first setting up Dandy Dad, and it melted my frozen, cynical heart. @daddyknott was set up by James to give people have an insight to his family’s journey with their son Nelson, who was born profoundly deaf.
How was your son was first diagnosed with bilateral sensorineural hearing loss? And can you explain what that actually means?
Bilateral sensorineural hearing loss means that Nelson’s cochlea (the important part of the ear) isn’t working, therefore no sound is getting through to his brain.
We had the standard newborn screening test on Nelson’s ears when we were in hospital, but it came back as inconclusive. We then had a three week wait to see a specialist and in this time my wife Becky and I knew something wasn’t right. Nelson didn’t respond to noise at all, but we still thought that it might just be temporary and would probably fix itself.
A few weeks passed and we still weren’t receiving a response to any noise at home. We then had further in-depth tests, which sent signals straight to his cochlea, and they all came back as non-responsive. This was when we were told that Nelson had profound hearing loss.
What made you want to start an Instagram account?
Becky said that I should start a blog or Instagram page to spread awareness about deafness in children. I wasn’t sold on the idea until I was feeding Nelson at 2am and had a free hand. I set a profile picture, posted up the first photo I took of our son, added a few hashtags and a bit of information about Nelson’s deafness; I didn’t think much more about it. When I woke up, people had commented on the picture and I had quite a few followers.
Nelson’s first hearing aid
You said your wife had already started to learn BSL (British Sign Language) before Nelson was born. Was that just coincidence?
Total coincidence! Becky has been working her way through her BSL (British sign language) for about 4 years and has just past her level 3. We have no history in either our families of hearing loss and Nelson being deaf is really just tough luck. I’ve often heard people say babies choose their mothers and thought, “what a load of crap”. But now I truly believe it.
Becky knowing sign language gives us a massive head start, not just with signing but with deaf awareness in general. Becky holds weekly classes for both our families.
You have an older daughter, Prudence. How is she with her little brother? Does she just accept that he can’t hear or are there challenges there?
Prudence is two years old and is absolutely fantastic with Nelson. From the day we brought him home she’s loved looking after him. The first thing she wants in the morning is to see her BUB and is always checking to make sure he’s ok. I think she knows he can’t hear but I’m not 100%. Becky took Pru to a baby sign class when she was a bit younger, so she is picking up the language quickly and has about 80 signs in the locker; her favourites include cake and chocolate!
Nelson and his big sister Prudence
Do you think Nelson has challenged your own preconceptions or prejudices about disability?
Having Nelson has opened our eyes more to how others perceive disabilities, mainly deafness. We knew were in for some battles with people about their own prejudices and we’ve been shocked at times. It’s a scary thought that in this day and age people have such little knowledge – someone even asked me once “what sort of life will he have?”
Some deaf people don’t even look at themselves as disabled and they’re proud to be part of the deaf community. We have taken this journey with a very positive attitude and we’ve been complimented by audiologists, teachers of the deaf, friends and family. We have wobbles – we are only human. We do our homework, which stands us in good stead.
Can you tell is more about your connection with the charities NDCS and KDCS?
Since discovering Nelson was profoundly deaf I have had a vested interest in in both the NDCS (National Deaf Children’s Society) and the KDCS (Kent Deaf Children’s Society). Working for Gillingham football club I wanted to do something with the charities to raise some money, as due to my recent experiences it is now close to our hearts. So on the 28th January 2017 Gillingham play Shrewsbury Town and the KDCS are going to be at the ground doing a bucket collection. The players will warm up in KDCS T-shirts and we’ll have a double page spread in the match day programme. The charity has never done anything like this before and everyone is looking forward to it.
And finally, what’s the best piece of parenting advice you’ve ever been given?
Enjoy every moment you have with your kids. They grow up so fast and it’s easy to forget the magical moments!