When Your Baby Is Born Deaf.... National Deaf Awareness Week 15th May - 21st May
This week marks UK National Deaf Awareness Week.
Did you know that 1 in 6 people in the UK are affected by deafness or partial hearing loss? My Charlie was one of those 6. Bet you didn't know that. My Charlie the little boy who goes to a regular school who sounds "normal" - which he is, now was deaf. We've come a long way...
With his first hearing aid
Charlie was diagnosed as being deaf at his newborn hearing screening test that was conducted in the hospital, in fact he was tested twice before we were allowed to be discharged. Charlie registered "below average" on the newborn screening test. Our little boy was clinically deaf. We were devastated. I was more so than Tom and that was unusual given I am the optimist in our relationship. My beautiful baby was deaf. I will be honest, all images flew threw my mind, some not so nice ones either. Would he be the kid that couldn't speak properly? Would he have that distinct "deaf" tone to his voice?
We were under the care of St. Hellier and Epsom audiology department and as the weeks following Charlie's birth followed barely a couple of weeks went by when we weren't trotting off to the hospital for more tests. I recall one test taking over two hours where he had to have his head covered in probes to distinguish just how deaf he really was. My mum had to hold him for me and I think her heart broke a little bit that day for him too.
Over the years he underwent numerous procedures, wore elastic band hearing aids (which FYI are totally shit in their design as you try keeping one of those on a toddler who is determined to rip it out - in the end I lost count of how many replacements we had from the audiology clinic!) four operations including three sets of grommets, removal from adenoids and tonsils and a discovery of a bifid uvula and a small hole in his upper palate. Charlie was a boy that just had issues in the ear nose and throat department. He was pumped with antibiotic after antibiotic as for the first two years of his life barely a month went by when we weren't on them for infection after infection, so much so that on one occasion he was admitted to the Royal Surrey for four days following a severe reaction to his body rejecting the antibiotic.
After his first operation
But I am happy to say that five years on my happy healthy boy has what is considered "normal levels of hearing". Four words we never thought we would hear following his original diagnosis. He attends a regular school and with the help of the schools special educational needs department he is helped weekly in his reading and speech. His reading and maths are where they should be for his age and yes we have to ensure that he is placed at the front of his class, that his teachers know of his hearing history occasionally he's been known to sit outside of birthday parties because "it's just too loud Mummy" - don't get me wrong that breaks my heart still when I think of it but he's come so far since birth that we must be eternally grateful for how he is today.
In promoting awareness for National Deaf Awareness Week I am pleased to share with you my friend Jennifer's story on her beautiful little Daisy and her family's journey through hearing loss..... "I have only properly articulated this in any depth to a few close friends and family members. But I often experience low ebbs and feelings of anxiety around both my children who are both deaf. My son is mildly deaf and my daughter is moderately. Now seems an apt time to speak out.
Let me introduce Daisy, my four and half year old, sparky, chirpy, endearing little girl. She amazes me every single day. She is perfect. She loves a tantrum from time to time, like any other child. She insists to wear shorts when it’s freezing outside. She continuously raids my make-up bag and experiments with my lipsticks and eye shadows in a rather questionable way. She is loving and caring. She is ‘normal’. Part of her ‘normal’ is being is moderately deaf and this is part of our family life.
In contrast to my six year old son, Harry whose hearing loss was identified at five years old. We were very lucky as Daisy’s hearing issues was flagged as part of the new born screening test carried out on babies at 10 days old. Prior to these tests, I had just assumed that all the checks would come back as ‘normal’ but when Daisy’s hearing was screened there was no response from her left ear. Looking back, it was at that single point in time, when I heard this result where our journey into hearing loss started. I remember it vividly, looking down at my brand new baby in my arms, tears falling from my eyes bouncing off her forehead. I was scared and anxious about the extent of her loss, whether it would progress and importantly what this would mean for her in reality as she travels through her life.
These feelings have never disappeared, sometimes I am just better at containing it but there have been distinct moments where my knees have buckled and I’m right back in ‘that’ place, concerned for her future and knowing I have such a vital role in making it right for her.
Over the course of Daisy’s few months of life she had several tests to establish the extent of her deafness. When she was eight weeks old Daisy was diagnosed with unilateral sensorineural mild hearing loss. We were told that this was permanent but as long as she didn’t get ‘glue ear’ in her good side, she would hear adequately to progress in a ‘normal’ way. I came away from the test feeling mainly relieved. I felt that if this was all we had to worry about then we’ll take it. Importantly, we knew the situation right from her start in life and had a basic level of understanding about what her world might be like. From that point, our mission was to be aware of her needs but to normalise this for her.
In her first year, we had numerous trips to the audiology department. At this point her audiologist detected glue ear in her ‘good’ ear which wasn’t the best news given her loss in the other side. I remember distinctly the day I was given a bone conducting hearing aid for her to wear. The aid was fitted within a red towelling headband. I left the consultation with those feelings again, concerned about how the world would view her. With our mission to normalise her deafness, my husband ordered three other red headbands for us to wear so she didn’t feel different at home (although she was probably too young ever notice) and so our son could see no difference, if he did at all at only two years old. But it was our way of being proactive and just doing something to help.
When Daisy was about 18 months, we noticed that she hadn’t attempted to say a sound. She was completely mute. She would watch our mouths move as we spoke to her but no sound came from her. I contacted a Makaton advisor who visited us at home and he taught the whole family to sign including Harry, who was only 3 at the time, he picked it up better than all of us put together as it is such a powerful (and beautiful) way of communicating. Daisy started to use basic signs for water, sleep, sausages (was always a favourite) almost immediately and gradually with modelling the spoken language in combination of the signs she began to speak. It was amazing.
As time went on she received speech and language therapy who gave us invaluable strategies to support Daisy. Her Teacher of the Deaf (TOD) assessed her continuously and as Daisy grew, she responded to more sophisticated testing at audiology appointments. When Daisy was three years old, we went along to her routine consultation. There was good news, the glue had gone in her right hand side. I remember the relief but it was short lived. The hearing test that followed showed that she also had permeant hearing loss in her ‘good’ side too. Her audiologist confirmed that she had bilateral moderate sensorineural loss. She told me to imagine being in a swimming pool, under water and trying to hear. This is what Daisy’s world is like for her. She was measured and fitted with behind the ear hearing aids. Since using them her speech has come on tremendously and they have opened her world up. But now she is at school another set of variables strike us as a challenge as the ramifications of her hearing loss become apparent.
Daisy is entitled and it is appropriate for her to be educated in mainstream school. Daisy isn’t ‘deaf enough’ to go to a school for the deaf to access the support and education, but the resources in mainstream schools aren’t enough to acknowledge her individual needs so she doesn’t have to work quite so hard. So she is encapsulated in a hearing world when her reality is very different.
She started reception class in September. On the surface Daisy is doing really well at school. Her reading and writing is ‘age appropriate’ (the ‘norm’ she is benchmarked against at this stage), a label that is working against her already, as dig a little deeper, it’s not quite as simple as this. Now, two terms into school life, there some further issues have come to the fore.
Whilst the aid technology is extremely effective in some circumstances, they amplify all surrounding noise as well as the sounds she needs to hear. This is hard for her (or anyone) to manage. She has fatigue from concentrating in class all day long which is a constant challenge for her every day at school or indeed in any busy environment and she manages this amazingly. Her classroom teachers and teaching assistants are very willing to help support Daisy but they are limited and there are 29 other pupils in the class to rightly, support and develop at the same time.
The implications of being a deaf child in school also manifests in other forms. Anyone who knows Daisy will observe that she is an incredibly social girl, she forms strong bonds with particularly adults and older children. They can help her with the clues she is searching for and make things clearer for her but outside of these relationships it is difficult for her. As a result she has anxiety going into school. She particularly struggles with developing friendships with her peers and gravitates towards the older girls in the playground rather than feel she can play with the children her age. The stories Daisy has recounted to me range from not being included in games in the playground to being told she is hated by her peers. I take this with a pinch of salt to some extent as there is always context to consider and luckily at her age the majority of this, I think, washes over her head to some degree. But this won’t always be the case.
On hearing her playground experiences I had to act and re-state my concerns at school as any parent would. I needed to empower myself with the right information to guide the discussions to ensure Daisy is properly supported and has the ability to access the education she is entitled to. I lifted the phone and spoke to the National Deaf Children’s Society (NDCS), our case was referred to a Children and Family Support Officer (CFSO) who contacted me and advised me on several aspects to explore at home and importantly at school. The CFSO gave me a huge amount of information about Daisy’s rights which has enabled me to have meaningful discussions with the Special Needs Co-ordinator at school. I was also told about a charity that may help. One Friday morning recently I called them. I spoke to the founder of the charity, who had set up Chloe and Sophie’s Special Ear Fund (CSSEF), as a result of both of her children being deaf with an aim to support them in mainstream school. She understood and could relate everything I had experienced and offered her hand to help me. Throughout my conversation with her I realised I have spent so much time ‘normalising’ Daisy’s hearing loss in our family life that so much so I have overlooked the strategy I needed to pursue in conversations about her needs at school. I realised I have almost ‘downplayed’ her situation, when in fact this approach has led to things going unnoticed. Deafness is an invisible disability. The only way to close the gap between her hearing loss and hearing is to speak out and raise awareness around being deaf, what it’s like, and how it affects both social and emotional wellbeing as well as educational development.
I hear frequently from people, friends and even family members that hearing loss doesn’t have the same stigma as it used to. I agree to an extent but if it were true, then deaf awareness would be embedded into at mainstream school, as well as other complex needs that children deal with. The impact this is having on Daisy socially could be quite fundamental as she travels through school and becomes more self-aware. This is my biggest fear for her, but maybe this could change if more proactive and inclusive dialogues can be encouraged with everyone within the school environment.
For now, this piece is aimed at anyone that is experiencing anything similar to me, who is feeling isolated and not sure of the questions to ask and whom to aim them at. I was in that space for a long time. I realise now that whilst there is a willingness to help support Daisy in school from the teachers, they are inhibited by a lack of funding which means support is inconsistent. The wider issue stems from our government continuing to fundamentally restrict our public sector with such limited resources it is near on impossible for practitioners to be empowered do their job on the ground. This is making our future generation vulnerable. I heard last week that the county I live in will be cutting resources that support deaf children in mainstream schools again. As with many parents with children with additional needs, it becomes their personal fight to ensure the support is provided. This is my mission now. The difference for me reflecting on these past few months, is that I have somewhere to turn to help me be the voice for both my children, especially Daisy.
Thank you NDCS, CCSEF, our audiology department, our Makaton teacher, the kids TOD, their teachers in school, my friends, my family who all help in many ways to support Harry and Daisy. But, thanks importantly goes to my children who have opened my world up and taught me so much – the hearing world and the deaf world are both amazing places but they must meet more effectively to enhance each other and support the individuals within them. This starts in early childhood in school."
Thank you to Jennifer for sharing Daisy's story.
We must do all we can to break the stigma surrounding deafness. If you'd like to find out more information on deafness please visit https://www.actiononhearingloss.org.uk/get-involved.aspx