April 2021 – My Three Little Bears

Jasmine uses Cochlear Implants to hear. She’s one of the lucky ones as are we. It is not a given that you will benefit from the operation. You don’t hear with your ears, you hear with your brain. The ears simply have equipment to transmit sound from the outside inwards and it is the auditory nerve that carries the information to the brain. This is a simplistic overview.

Me, breaking down in tears: Jen, she’s deaf. She can’t hear a thing….

Jenny: what…it’s ok….shit….it’s ok….she’s beautiful…it’s going to be fine…

Me:….how….?

Your cochlea is the little snail’s shell like structure in the pictures you find in your biology books. It has thousands of tiny hairs and they also transmit sound down to the auditory nerve. When these bits are damaged you may benefit from a cochlear implant. We went for a Nuclus 7 made by Cochlear. Jasmine is now a bionic baby; she can pick up my calls from an iPhone, listen to the iPad via Bluetooth and be connected to all sorts of technology. She wont have to invest in a pair of wireless Dre Beats to listen to music from her iphone. Jasmine is a high-tech baby. We’ve got lucky. Ours work. Aged four and we can have a full on conversation with Jasmine. She also lip reads and we have learnt to sign to a confident level. We had to go through a full detailed assessment process in order to be considered for CIs. Lots of tests and talking. I dont remember much of it but I never felt that we were being assessed as parents; more that her hearing levels and propensity to benefit from the surgery were being assessed. It later turned out that we too were being assessed. I had to hold her down too (as well as all the many times I held Daya down). I asked her to turn her head to the side and I pressed it down into the table as I pressed her shoulders down flat; it was horrible. Whilst she kicked throughout the X-ray, my arms grew weaker. They checked the positioning of the implants. I was there for her surgery. The same weekend Daya went in to have her stem cells harvested. I didn’t know that I would be back two years later to meet with the same anaesthetist for Daya’s radiation. I was there when she was switched on. We rushed off to GOSH straight after to do Daya’s chemotherapy. We asked them if they could delay her by a few hours on that day. I remember Daya sitting silently in her Daddy’s lap. Slightly balding and watching everyone in the room quietly. She was depleted and still full of cancer. So four of us were there and our awesome speech and language lady Liz C. She’s been incredible. We love her. They gave us a lot of ‘stuff’ to take home.

Liz taught us about Ling sounds. Along with Mark, Rachel and Ying from the hospital and Deborah (our teacher of the deaf), we embarked on gently conditioning her to sound. She was frightened at first, then she would look up to the sky, she could hear a plane, then the birds, we would talk to her all the time about everything. She would point at things. We would listen. Then there was the video I posted some time ago; when I came home from the hospital and Jasmine walked up to me and said ‘Good night Mummy, I love you’. I cuddled her and cried. I shook my head in disbelief. It was amazing.

We also had support from Cherith at Cochlear and our ToD Deborah printed off material for us to use. I would take it to the hospital and read it when Daya was a sleep. I’d pick out some ideas and then message whoever was back at home with some listening games, this was usually Esther. One day, Esther sent me a list of words Jasmine was saying. I missed out on these early stages but I was stunned. Esther’s list kept growing. I would come home and listen out for words. I was so thankful.

I didn’t get to take Jasmine to specialist classes (namely Audio verbal Therapy) and in the early days this made me feel as though I wasn’t doing ‘everything I could’; I was living between hospitals. The work was done regardless. It was easy for us as we are used to speaking to our children; again it was time that we needed. As time passed, her brain began to decipher the world around her and she was learning to make distinctions between different sounds. This is still hard in crowded or noisy places. Jasmine’s ears are always on and give her a tsunami of sound. Everything comes into her brain in one go. As we walk down the street, when we are talking to someone, we learn to blur out the sound of traffic or cars and bird. This is particularly hard for CI wearers to do. It comes with time and technology such as radio aids help. It is also difficult to always know where a sound is coming from. A bit like an ambulance siren when you are stuck in traffic, sometimes you need to move your head around to ascertain the direction or location. It’s easier when you can see it. On that note, many deaf people are exceptionally visual. As well as lip reading, they can pick up on your body language, mood etc more than your average person who will be listening to your words. I hope to make Jasmine a proficient and self-employed Las Vegas Poker player. Move over Dan Bilzarian…

There are people out there who will be utterly disgusted at my decision to implant my child with cochlear implants. They are usually profoundly deaf themselves. A few points to consider, I am not ashamed of my child nor have I shyed away from throwing myself into the Deaf world. It has been heart breaking and utterly overwhelming at times such as the time I went to my first NDCS event when the whole room of newly diagnosed parents were in tears. We met two deaf people; an Olympic athlete and a daughter of one of the parents. There was both fear and hope in that room. It was the first time we had heard a deaf person talk. I remember thinking ‘it’s not clear’, how can they hear and how do they learn to talk if they can’t hear. Then there was the time I went to the ‘special day’ at London Zoo. I was in tears and overwhelmed. I couldn’t keep up with anyone’s signing. I watched people signing to their children. Children who were much older. I didn’t stop to think that they had had a lot longer to learn and become proficient. Looking back, I felt vulnerable and overwhelmed. I also felt like an incompetent parent. Fundamentally, out of my depth. I cried when no one could see me. I told Deborah it was too much and that the day wasn’t fun. I look forward to that day again and for Jasmine to see other people signing. I’m a strategist and an active learner. I threw myself deeper into everything I needed to know. And now, rather than treading water….I’m floating on a lilo…sometimes its sunny and sometimes you’re waiting for the next wave…

But there are people out there who would be openly disgusted at my choice to put my child through major head surgery. They would accuse me of not ‘accepting her as she is’. I did debate both sides of the story very much. It wasn’t an easy decision. But wait…let me tell you this, or ‘hear’ me out…once upon a time….I sat in traffic on my way to GOSH. I took my glasses off to clean them and I put them back on, took them off again and realised that I can’t really drive without my glasses. It’s not safe. If I have the privilege of being able to see with glasses then I should give my daughter the opportunity to hear sound however little it may be. It may actually work out far better than anyone could imagine. I need glasses. She needs CIs. That’s all there is to it. I could have robbed her of the opportunity to hear sounds, music and converse with her sisters or I could have been trying to better her life. So I did the operation and I don’t regret it one bit. It wasn’t easy. We had to put her on a special diet for many months, she had to have major head surgery which may not have worked and was irreversible. There will be further operations. It’s not easy putting to children under General anaesthetic.

I’m good at dusting myself off and carrying on….

Back to hearing, lets now talk about the Ling sounds…I could give you a detailed explanation of Ling sounds or I could introduce you to these books from the author Tanya Saunders. Now, she’s a badass Mum. She’s written and created two books for deaf children, one for the early years and one for older primary school aged children. I know that if this book had been out a few years ago, we would have used it day and night. Ling Ling bird is a colourful bird who wears CIs. She takes you on a colourful, visual journey through sound. These books incorporate Ling sounds, they incorporate a lot of sounds to attune your children’s hearing and they allow for interaction and repetition as well. These books are visually colourful and do actually rhyme! Ling Ling bird is proud of her CIs and deafness. It is important to note that whilst CI wearers may be able to hear, and whilst some may have full access to sound, they are deaf. Without their CIs they cannot hear. CIs are an aid to hearing and not a reparative treatment for hearing. After major head surgery, they require daily care, daily speech and language therapy etc. However, the wearer remains deaf. They have to learn to hear using technology. This can be incredibly tiring. It requires a lot of focus. In the bath, whilst swimming, at night time, first thing in the morning….they are deaf. CIs need to charge over night. This is when signing really becomes important. You cannot sign in the dark. So it is harder to communicate with a deaf child at night, you have to turn the lights on, wake up fully and then watch hours of paw patrol downstairs in the hope that they will eventually fall asleep. All the while, they will talk loudly thinking you can’t hear them..because they can’t hear themselves. You will beg them to talk quietly as everyone else is sleeping. Then there are the days when, they refuse to put them on in the morning because they like the peace and quiet and …inevitably the control as the can transmit-only and not listen to any requests to get dressed, brush your teeth, eat breakfast…..lawless little bandits!

Back to Tanya, for anyone with a deaf child, do get this book. If you have a CI child, they will love this. Ling Ling bird is a positive role model who speaks of friendship, identity and acceptance; all of which are difficult concepts to convey to a young audience. Tanya does this well. Ling Ling bird explains the journey from deafness to CIs and difficulties hearing with CIs. This book is a friendly and empowering reminder of the importance of owning your unique identity and your truth – no matter what. The book covers a range of concepts in a child friendly manner.

Like it’s owner, Ling Ling bird is a proper badass role model.