As part of my #DeafKidsRock series I intereviewed a lovely “instagram friend” Hannah. We talked about her son Henry’s hearing loss and how it has affected their lives from when she found out, to now!
Henry is probably the cutest thing on instagram so go and check out her feed @elsonHQ
Thank you so much to Hannah for answering my questions so openly and honestly!!
How did you find out about Henry’s hearing loss?
My husband and I had our first son, Arthur in 2012, before Henry came along just before Christmas in 2014. We first found out Henry had hearing problems as a result of the newborn hearing screening. Henry had a severe loss at birth which we later found out to be progressive.
How did you feel?
It was a huge shock as we had no hearing loss in either side of the family. It took me a long time to come to terms with the news and the first few weeks it really felt like a grieving process. I would sit up for hours at night researching what we could do and worrying about what had caused it and if it was linked with further complications. It wasn’t until we found out it was a genetic cause and I was better educated on the deaf world and culture that I started to accept it. I look back now and I look at Henry and I wish I hadn’t worried so much because deaf children are amazing and Henry is the happiest most loving little boy.
Did you find it hard telling your friends and family?
I really struggled to begin with even saying the word deaf, we were really open about it right from the beginning and I’m so glad because the support we received was amazing. The more I spoke about it, especially with my friends the better I felt.
Finding out Harry was deaf changed our family dynamics but it brought us all a lot closer.
How has Henry being deaf affected yours?
We don’t have any family close by which at times with two young energetic boys can be very hard. When we first found out Henry was deaf I panicked and desperately wanted to be nearer to my family but I’m so glad now we didn’t rush into anything because some of the support we have for Henry close by is incredible.
Have you learnt any form of sign language or makaton and how has it helped you to communicate?
I am currently doing my Level 1 BSL and really enjoying it . I think it’s very important for Henry to feel part of both the deaf and hearing communities and I am determined to make him incredibly proud and confident of his deaf identity.
At what point did you decide to go down the route of deciding to get a cochlear implant?
We had concerns from the start that Henry was not getting enough clear access to sound from his hearing aids . We had to push to get a referral to the implant centre but I knew in my gut it was what he needed. Seeing the change in Henry just a few weeks after switch on it made it clear it was the right decision for him.
I found the thought of putting Harry through surgery unbearable. How did you cope with it and did the day go according to plan?
I was a complete wreck on the lead up to surgery, walking down the corridor to the theatre was the hardest thing I’ve ever had to do. Surgery couldn’t have gone better, from start to finish it was seamless and he was bilaterally implanted after just 3 1/2 hours. It was a shock to see Henry bandaged up in recovery but as soon as he smiled at me I knew it was going to be ok.
What was it like when Henry’s cochlear implants were activated?
We had been told not to expect anything by so many professionals and that the activation videos all over YouTube were not a typical switch on experience…. Henry responded straight away, he was never upset and has loved sound ever since. We feel so incredibly grateful that Henry has been able to benefit from this miraculous technology.
How is he getting on now?
Henry has been switched on for six months now and the change in him as been remarkable. By his reactions it is very obvious that he has fantastic access to sound and the rate of his learning is just amazing. He has started saying some words in the last two months. I think having a very chatty big brother around really helps.
Sometimes I worry about Harry going to school and fitting in with the other children. What are your biggest worries for Henry’s future?
I’m currently looking at schools for my elder son and Henry is on the forefront of my mind during the whole process. I do worry about Henry going to school but I think as long as you raise them proud and confident and make sure you choose a school you feel are sympathetic to his needs, I don’t see him having any issues that we can’t overcome.
What would be your best piece of advice to parents who have just found out their little one is deaf?
Join as many groups as you can and take the help and advice. The NDCS (National Deaf Children’s Society) are very helpful and provide great education. We have had incredible support from various local charities and also from the Elizabeth Foundation who do fantastic work.
Having a deaf child is not necessarily the path you thought you’d go down but I feel privileged to be a part of it. Deaf children really are incredible. I found a lovely poem called “Welcome to Holland” written by Emily Pearl Kingsley really comforting in the early days.
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?
Henry has brought so much to our family. He has opened our eyes and educated us. We have a totally different outlook on life since Henry arrived and I am so grateful to be a part of his very special journey. I can honestly say, hand on heart, I wouldn’t have him any other way.
If you or someone in your family is affected by hearing loss, please get in touch! I would love to feature you in this blog series