Hi you lovely bunch,
Welcome to a new series of blog posts here on Lucie and the Bump. I have realised that Harry’s hearing journey has gone a little quite on my personal blog as I seem to write so much about it over on Phonak’s site Hearing Like Me. So I am going to start posting more about Harry’s progress with his magic ears as well as sharing stories from friends who I have made along the way.
I’m kicking off this series with a little interview with my online friend James (Instagram DaddyKnott)
James started following our journey after his own son Nelson was diagnosed as deaf and he is such an inspiration to me with his positivity and his willingness to raise awareness for the deaf society amongst us. Him and his wife Becky have fully embraced learning British Sign Language and are at the very beginning of their journey to possibly get cochlear implants for little Nelson.
Hey James!! Tell me a bit about you and your family..
I’m James Knott, I am 32 years old and married to Becky. We met through a mutual friend 7 years ago and have not looked back! We got married in September 2013 and our daughter was born the following July. Prudence is now two and a half. Our son Nelson came along on the 9th June 2016. Becky also has two older children from a previous marriage so a very busy house indeed, there is never a dull moment!
How did you find out about Nelson's hearing loss?
We knew something wasn’t quite right the day he was born, the new born screening test came back as non-responsive twice and a further test with some tiny headphones also came back the same. From here we got referred for further testing with the West Kent hearing hospital. The test was when Nelson was only 3 weeks old with a lovely doctor called Frank, who would turn out to be a regular face over the upcoming weeks. At the appointment Frank did a good 2 hours of testing and at the end we came away knowing that Nelson’s hearing loss was permanent and quite severe in both ears. But we didn't find out that he was profoundly deaf until the end of July.
How did you feel?
I am not ashamed to say I had a little cry in the hospital, but luckily I have an amazing wife who quickly picked me up. Nelson is 100% healthy but his ears don’t work, it’s not the end of the world and we knew we would both embrace his hearing loss.
Did you find it hard telling your friends and family?
No, I wouldn’t say we found it hard telling anyone family or friends. Some took the news in different ways and had different emotions. It is a shock at the end of the day, but we both have fantastic families and a good group of friends. The support and reassurance has been brilliant. At the beginning before our diagnosis was confirmed, people would try and reassure us by telling us that Nelson has jumped to a dog bark or startled at the sound of the hoover, but we always knew deep down that he wasn't. I took the words of my wife "it's just ears, it could be so much worse" and we found ourselves saying this to a lot to people.
Finding out Harry was deaf changed our family dynamics but it brought us all a lot closer. How has Nelson being deaf affected yours?
I don’t know if it has changed the dynamics as such. We are a very close family anyway. It has prompted other members of the family and friends to learn British Sign Language.
Have you learnt any form of sign language or makaton and how has it helped you to communicate?
As a family we had a bit of a cheeky head start with knowledge in BSL, as Becky has been studying it for 4 years and has completed her level 3. This gave her a good insight into deaf culture, deaf awareness and of course sign language itself. Becky has been doing weekly classes with both of our families, so we can all communicate with Nelson. We have been told so much that it is never to young to sign with children. We have a weekly prop bag that has ten items in and we all try to sign them to him as much as possible. We have a family and friends Whatsapp group that we post videos and signs on, and at Christmas Becky and I learnt Merry Christmas by Shaking Stevens and posted that in the group! That one didn’t make it onto social media…
Does Nelson wear hearing aids? Do they work for him at all?
Nelson has two Phonak hearing aids that he has had since he was 11 weeks old. They have now been turned up the highest level. It is clear that he is not getting any sound from the aids, but we are encouraged to keep them in all the while he is awake for nerve stimulation and he gets a good 7 hours a day with them in.
Harry was constantly pulling his hearing aids out, chewing them and throwing them. Is Nelson good with his?
He is now getting very good at whipping them out with one finger and yes they go straight towards his mouth! It is a battle and we use toopay tape to keep them in place and this helps a lot. We also have a few headbands that hold the aids and these have been a godsend at times.
He hasn’t got to the throwing stage yet, we are looking forward to that.. haha!
At what point did you decide to go down the route of deciding to get a cochlear implant?
This is something that was spoke about at quite an early stage when we found out the severity of Nelson’s hearing loss. It’s something that we have spoken about as a family and I think at the end of the day it is a no brainer, but not a decision that was made easily if that makes sense?
What stage of your cochlear implant journey are you at?
We have had one appointment at St Thomas’s to meet our audiologist and speech and language therapist, we also had a group session that was very interesting, they spoke about the procedure its self and the different cochlear implant models available to us. Our next appointment is on the 13th February again at St Thomas’s. I have made a vlog of our trip to London if you are interested and you can find it on our very new You Tube channel Daddy Knott.
If Nelson is a suitable candidate and gets his cochlear implants, what are you most looking forward to telling him?
I think we are very lucky that with sign language, we can communicate well with him and haven’t really put too much thought in to what we would say to him. I guess I’m looking forward to small things like will he be able to hear the birds in the trees or the waves crashing on the beach.
Sometimes I worry about Harry going to school and fitting in with the other children. What are your biggest worries for Nelson's future?
School is a worry with our daughter Prudence and I’m sure it will be with Nelson when we cross that bridge. Luckily we have a good main stream school very close to us that have a fantastic unit for special needs, and has other deaf children attending that thrive. I hope that Nelson will want to tell stories about his special ears and makes lots of friends.
What would be your best piece of advice to parents who have just found out their little one is deaf?
My advice would be to embrace it, stick with it and try to enjoy it. They are still our babies at the end of the day. Learn BSL or other forms of sign language as it will help massively and also take all the help and advice that is offered. It is out there even if you have search for it.
Having a deaf child is no walk in the park but there are positives in every situation, so let's end on a positive note! What's the best thing that has come out of your journey with a deaf child?
This is true, but having a hearing child is no walk in the park.. ha!! However every single day we embrace the challenges that it gives us, stopping ear moulds into mouths, feedback from hearing aids, teaching family and friends a whole new language. But the most positive thing is the love that we show him and he shows us. He is who he is. We aren't religious people but someone up there gave him to us for a reason. And boy are we glad they did.
You can follow James and Becky’s story on Twitter (@daddyknott11), Instagram (Daddyknott) and their YouTube channel (Daddy Knott).
If you would like to share your story on Lucie and the Bump, feel free to contact me on any of my social media channels or email me at firstname.lastname@example.org