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.
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 lucieherridge@hotmail.co.uk
