The Secret Deafie is a series of anonymous columns written by different writers. Today a parent shares some of her feelings about bringing up her deaf daughter.
Ten years ago, my heart was broken. It was when I discovered that my only daughter was deaf. I don’t exactly remember how I felt at the time, apart from wanting to cry but having to be strong for other people. My heart suffered a wound that hasn’t healed yet.
I did cry once in front of her when she was small but that was years ago. She won’t remember. It was when I heard her ‘voice’ for the first time. It was as if the fist of life reached inside my ribcage and squeezed my heart dry. I broke down there and then. My parents came to console me and tell me everything would be ok.
And they were right, in a way. In another way, it’ll never be OK.
Things change when you become a parent of a deaf child. It’s hard not to worry about everything. It’s hard not to compare but I guess these are things that all parents feel. It’s just different when the child is deaf. A different world.
The world became unfair in ways I never imagined. There is nothing I can do about it, mostly, but just watch on as my child experiences a harder life than I had. Cochlear implants and radio aids can only do so much.
If I could swap my ears for hers then I would do it. If I could bear the pain of her isolation, I would. I would make the mistakes. I would struggle in class. I would read the damn subtitles. Please God. I wish someone could let me.
That’s the one thing that would make all this better, to trade places, but it cannot be done. As I watch on my heart will be broken for her a hundred more times. It is death by a thousand cuts. I’m not sure I will never fully recover from this. My friends can’t see it but i’m a different woman now.
Deafness has hurt me deeper than anything I could have imagined and it still does every day. I’m just being honest. Watching my daughter struggle hasn’t got any easier. I don’t show it though. I know that there could be a bright future but that’s a long way off. She’s only ten and there is so much uncertainty.
You see, all my sorrow is in secret. No one sees me cry. They can’t. I must be positive. I learned long ago that only other parents of deaf children really understand me now. They’re the only ones who don’t try and make it all better. Getting it out of my system is the best medicine. They know that too. They will just listen because they know that’s all that’s needed when it all gets a bit too much.
I do my best to give her all the opportunity and experience I can and things are going well, I’m told. She has the chance of being a proud and happy deaf adult. There are, after all, plenty of those. Maybe I’ll feel better then.
When my daughter was a toddler, I met an elderly lady who was also the parent of her own, now grown up, deaf child. She had dementia and couldn’t remember what year it was.
But she told me, in her wisdom, that no matter how bad I felt about it, no matter how torn up I got as I watched on, it is always harder on the deaf child. Always. Remember that. It’s not about you.
It was the best advice anyone has ever given me.
Some views on this from the Twittersphere:
@deafpower @charlie_swin @Limping_Chicken That's depressing. She finally said it's not about her. Shame she doesn't talk about achievements.
— Fiona Shoop (@FiShoop) October 29, 2013
https://twitter.com/PhoebsCaulfield/status/395135628666744832
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John David Walker
October 29, 2013
I remember these feelings I got from my mother. In reality, my deafness was no longer the problem but these feelings were. They got in the way of a healthy relationship between us. I had to keep saying, “I am ok”, to encourage my mother to do what is important – to be just a mum. A parent needs to be a beacon of hope, expectation and unconditional love, and these feelings won’t do anything to help a parent achieve that.
I am now in my 40s and mum is in her 60s – we have finally arrived at the ‘happy place’. I only wish we had it sooner.
Anna
October 29, 2013
Just want to acknowledge your reply. My son is now 10 and was diagnosed at birth as profoundly deaf. This was through newborn hearing screening. It was too much too soon and took me quite a while to fully bond with my son. I now know the timing was terrible and just being his mummy should’ve been all that mattered. I am proud beyond belief and everything about him is perfect x
Paul
October 29, 2013
As the father of a 1 year old deaf daughter who had her implant op two weeks ago I am looking forward to doing everything we all can do to do what we believe is best for our daughter. I am sure we are going to have good and bad days and like you we never show anything other than a positive and happy side to the outside world. I cry in the car on the way to work or when I am on my own. I don’t think that will ever change and I think that’s what makes us human. Nobody can tell you how to feel about your child and until they go through it they do not know what they are talking about.
Katie Hunt
October 29, 2013
Its hard to explain to someone how you feel about your child being deaf and sometimes I don’t really know myself. My youngest son has no hearing at all and is unable to have a CI. When I found that out I thought, that’s it, he will never have the same chances in life as other children with hearing. That was a year ago and since then I have come to realise how wrong and selfish I was. He is the way he was supposed to be and he is so happy and most importantly of all healthy. He is now beginning to sign which is the most amazing thing I have ever seen. Yes I do sometimes feel sad that he will have to fight that much harder for things but he will get them and I will support him every step of the way, he is a determined child and this will get him through. Whenever I’m having a down day I just look across at him and see how content he is and I think how much worse it could have been, deafness is not an illness and with it he will still lead a happy and fulfilled life. I am proud to be his mum.
LJ.
October 29, 2013
This is a really good post and has made me sit up and think a little… I’m a deaf child of hearing parents, in my mid fifties now while parents are in their mid eighties. Its posts like these that make me think of what my folks went through. Nothing much was ever said and I only got to know of their feelings through friends or other members of the family.
As an only child the worse was when my Mum & Dad gave me up to go to a deaf school when I was 11, I managed one Friday evening to telephone her while she was still at work in her shop with all her customers around and she just broke down amongst them, apparently the customers had to go home with half done hair doo’s also in tears as it touched them also, Mum was a self employed hairdresser.
The one big regret I have and that is blaming my Mum for not doing enough when really she had done all she could. Many years ago during a fit of deafie frustration I came out with something like ‘I’m deaf cos of your neglect’ or something like that.
My warning for you great hearing parents who no doubt love and do all you can for your kids, is… be ready for that day when in their frustrations, blame you! likely you’ll be devastated just as my Mum was back then. Be in expectant of something like this so that you are prepared. My Mum wasn’t and was crushed by my lack of thought.
amanda
October 29, 2013
I find it hard to read articles like this.
I am also the parent of a deaf child and I remember being given the diagnosis – being taken into a room, sat down and told in hushed tones that my child had a severe/ profound loss in both ears. As if I didn’t know, or hadn’t just sat through the test with my child asleep, no alteration whatever in his brain wave patterns as the hearing adults in the room winced at the tones being blasted out into the headphones. And I remember being treated as though I might break down or collapse at the “news”.
I have since heard from other parents this similar story – of heartbreak, devastation- and I do not in any way want to minimize or ignore your pain but this has never been my experience. My child has always been deaf – this is who he is. He has not lost anything or become diminished.
Yes there are times when for any child life is hard – yes these are more frequent than for a hearing child (or at least those hardships that relate to communication) but I also have a hearing child and my heart breaks for her when her friends are mean or when people willfully misunderstand or label her.
I guess I want people to understand that not all parents are the same – I am not devastated by my child’s deafness – yes there are things we can’t share – he is a part of a community which I as a hearing person do not belong to, but that should enrich both our lives. He has struggles which are not the same as those of his hearing sibling, and some which are the same.
He would not choose to be other than who he is and neither would I.
Natalya (@barakta)
October 29, 2013
I believe this article should be published as it is clearly a recognisable issue for parents of deaf and disabled children. I don’t believe in making even unpopular views taboo.
It is also interesting if somewhat saddening to see this secret parent’s point of view and perspective on deafness even if it is really far from anything I can understand as a deaf person (who does not have children).
I feel this article is a sad indictment on the medical model of disability and society’s attitudes towards difference as a form of imperfection which is to be seen as negative and bad.
If we had a truly social model society where support to learn different communication method was abundant and flexible; there were chances to share experiences and community and children and adults were all given what we need without having to fight I think it would be very different.
Yes deaf people have to work harder to communicate, but that gives us strengths and skills which are different and definitely useful in life. I think it’s a good thing that not everyone’s the same. An easy life isn’t always the best life for anyone, sometimes “challenges” dare I say it are the making of us.
I wouldn’t be who I am without being deaf. Yes it’s often a pain, but I wouldn’t be “hearing” for any money – too loud! I like my silence, sleeping through noisy nonsense, not worrying what’s going on in rooms that I’m not in and yes the deaf communities through who I’ve met some brilliant people!
To the OP, I think you’re very courageous in sharing your experiences but I do hope you are able to find yourself in a less grieving place sometime soon and realise that your child knows no different and that even if it is harder for us deafies that isn’t always a bad thing. I would look for deaf role models for your child, make sure she knows she’s not alone, that there are others like her of all ages and that she can do almost anything she wants to and the few things she can’t do aren’t open to everyone else either.
Natalya (@barakta)
October 29, 2013
Also I wonder if there needs to be more parent-to-parent peer support as I am sure my mum would do a better job of being as kind as needed to the OP than I can do while also being in a very different place now.
It does make me realise how valuable support via NDCS et al is, and how we must not let funding for that drop, if anything, we need more funding for parents of young deaf children with comprehensive and flexible parental support services which could include counselling and parental peer support as well as the whole role models thing as well as supporting parents to know doing their best is ok even if it’s not perfect.
Jennifer
October 29, 2013
The feelings you have are not exclusive to parents of deaf children. The apply to any parent of a child with dyslexia, food allergies, cancer, multiple sclerosis, etc. etc. We all want to take away our children’s struggles. Everone has something. Something that challenges them, but also something that makes them great. Happily the thing that challenges them usually unlocks the door to many people, places, and adventures that show you and them what living is all about. Peace, and keep reading the last line…..it’s not about you. And give other parents a chance……spending time with parents whose children have something other than deafness will give you some perspective and get you to the place where you can celebrate your child…..every part of your child.
nathan
October 29, 2013
I am a profoundly deaf adult in my late 20’s. (no cochlear implants, orally deaf)
My parents never expressed their worries or fears on me. Yes it has been a “hard” childhood, with speech therapy, socialising, etc – but then I didnt know any better. It was just a way of life for me because I was born with it, so I had a happy childhood.
One mistake my parents and family did was to speak to me very clearly all the time, enuciating every word spoken very clearly , even today as an adult. That made my lipreading skills very poor because in life not everyone spoke clearly like that! As a child, I was constantly praised that my speech was “amazing” – now I realise it wasn’t! Coming out of my teenage years and realising that – was hard to accept. Maybe if they spoken faster like everyone else as I was getting older, I’ll be forced to lipread better. But I’ll never know if that would have been effective or not.
Another mistake my parents made was having extremely high expectations. I did extremely well in school and graduated wtih first class honours degree – but getting a job was really really difficult! Employers just don’t like hiring deaf people like me with poor speech, especially in senior roles. Would I have had a easier time in the job field if I did an vocational course and became a plumber, electrican or builder? I don’t know. If my speech was much better, would I find getting a job easier? I don’t know.
But above all, I have a high level of self esteem, so none of the difficulties or problems get me really down. I am generally happy even in difficult times.
I am not advising you how to bring your daughter up with regards to speech or education – you need to work that out for yourself – but as a parent, the best thing you can do, is to make your child happy and well adjusted to face society. That doesn’t mean spoiling them with lots of presents to make them happy. That means enabling the child with confidence and high self esteem, and that alone will enable the child to face life with all its challenges very well.
I can reassure you, despite all the “difficulties” I had – I am a very happy adult 🙂
Good luck
Shaun Kennedy
October 29, 2013
Being a parent can be tough at times. I think it’s inevitable for parents to worry about their child’s future. At the same time though, you have to take pleasure in the joy your kids can bring you and do what you can to raise a well-rounded individual. This applies to all parents and children, deaf or not.
For a non-deaf parent though (like myself), deafness can take a while to understand. It can be such a shock when you first find out and you realise you don’t know anything about what it is to be a deaf person let alone raise one. My children are 3 and 1 and I get upset some times, not because I feel sorry for them but because I’m on my own personal journey as a parent that is completely new to me and sometimes I’m scared. I was scared before I found out they were deaf and I was scared after. I still love it though.
I can relate to the writer and I understand and feel her pain, I cry when I’m on my own too and it’s good for her to express how she feels. I can relate to all the comments on this page and all the responses on twitter too. I think all we can do is be supportive of each other, share our experiences and views and make the world a more deaf aware place.
Lana
October 29, 2013
The best gift you could give to your deaf child…is to be able to communicate with her fully. There is nothing wrong with your child. In 10 years you have seen her learning to walk, play, laugh and being naughty like any child.. In the next 10 years, she will be studying and be someone she wants to become. My parents are Deaf and I was married to someone with hearing parents who were like you, worrying and feel upset etc. After 20 years of marriage his mother finally said her son is doing okay with his life. I felt sorry for her because she wasted 50 years worrying about him.
Diane
October 29, 2013
It wasn’t until I was quite grown up that my mum told me how she felt about my deafness, how she cried on the bus on the way home after my diagnosis and had to be comforted by a stranger and how she thought I wouldn’t do well at school. However I’ve never known any difference, using technology to help me hear is quite normal to me. I’m just sad that my mum didn’t live long enough to see me graduate from university and prove her fears unfounded.
Amy
October 29, 2013
This article made me very sad – what does this Mum have to be so devastated about? I was never ‘devastated’ when I learnt of my daughter, Leila’s deafness? My 6 year old (profoundly deaf) daughter is THE best thing that ever happened in our lives. She may be deaf, but she is an amazing, funny, charismatic, clever and loving human being. She will go far in life – she will make sure of that and so will I.
I do not feel that there is ‘sorrow’ and ‘uncertainty’ because of her deafness; there are some hurdles, yes – but together we will jump over them. No one in this world is perfect – not the hearing, the deaf, the disabled, the able bodied, the rich, the poor – or anyone in-between. Life is hard for everyone and you get what you make of it.
When I wake up every morning and see my little girl, I do not see her ‘burden’….I see her wonder. I do not worry about what she can’t do and can’t become – I dream about what she will do and will become.
Raising a ‘disabled’ child has its challenges – but Leila is my shining star and I hope one day the author of this article will see that in her child too? If we as parents believe in our children – our children will believe in themselves – and that is the biggest battle to getting the rest of the world believing in them too.
The Secret Deafie
October 29, 2013
Hello – I’m the person who wrote today’s article. I just wanted to say thanks for all the comments on here and also on twitter and other places today. John Walker and Lana made really good points and I wanted to reassure that I don’t let it show or get in the way. My daughter has a full life and she’s successful but I tried to get across in this post how I feel underneath sometimes. I sent it to be considered on here after I wrote it when I was feeling like things were getting a little too much. Its the essence of the worst of it. But true nonetheless.
I want to pick up on Katie’s point too – it is a selfish sort of feeling and I do realise that. I put it to one side but what I’m trying to get across is that no matter what I tell myself or the certificates on the wall, the feelings are still there and not all that far from the surface, waiting for the right private moment.
Diane – that’s a wonderful and sad story at the same time. I’m sure your mum would have been proud of you. I am. This blog is trying to get across what I know exists in lots of parents but for the good of the kids is kept hidden, just like your mum did. She put you first.
This response will take forever so I will keep it brief from now on . Paul, LJ and Amanda – thanks for sharing. Amanda hats off to you for your outlook – it’s an inspiring way to be.. I love my daughter to the full to but have not been able to view the deafness as you do. I’m sure I could learn a thing or two from you.
Natalya – thank you for taking the time to comment. You are wise. Jennifer, Nathan and Shaun thanks too. Nathan – you sound like a fine chap. Congratulations on your success and I hope that job comes your way soon. You clearly merit it.
Again thanks to you for taking the time to share your views, feelings and experience. It means a lot to me and I have found this experience beneficial.
x
Anna
October 29, 2013
It has taken me 10 long years to finally stop crying. I now realise it was never about my son being Deaf, it was the fact he was diagnosed at birth and for the next 2 years that’s all anybody wanted to know about. I was meant to be a mummy not a walking book of knowledge. Best of luck to you and your honest heart felt account is appreciated xx
Lana
October 29, 2013
If you live in South, we would love to welcome your family for tea with us. We have an adorable Shih Tzu dog who would love to play with your daughter.
Frustrated Anonymous Person
October 29, 2013
Why are you all thinking its like a infectious disease? You all acting like the world will end.
So what if your child got hearing problems, your child is still healthy and can be bilingual.
Frustrated Anonymous Person
October 30, 2013
And please do learn sign language for the sake for your child so they can express themselves. Please see this video:
sammmymack
October 30, 2013
I read this article yesterday and decided not to comment as my thoughts were already echoed by some of the people who responded. However it has affected me to the extend that I couldn’t sleep and feel the need to comment too. I feel desperately sorry for this little girl, not because she is Deaf but because her mother is so sad about it. We all have hopes and dreams for our children which get shattered and adjusted along the way. That’s part of parenting. We all have anxieties and fears for our children, that’s the deal when you give birth and it never goes away. ( how will they pay off their loans, get on the property ladder, deal with heartbreak ).
Pinning all these natural parental feeling exclusively on her deafness is not going to do her or you any favours whatsoever. LIFE is an uncertain, unpredictable adventure, it’s tough and unfair for all sorts of people in all sorts of ways but with unexpected pleasures and rewards. I would like to emphasise the word LIFE because your child is a healthy, living, breathing human being whose life path may not be the one you imagined for her ( whose is?).
I hope you are on the way to acceptance and that expressing your feeling is helping.
Wendy
October 31, 2013
As a mother of three deaf sons I can very much understand that initial reaction to hear the news your child is deaf. You have so many fears and anxiety over what this means for your child. This article is from a very brave woman who is only being honest about her feelings and fears. She is obviously having a very hard time coming to terms with her child’s deafness and needs lots of encouragement and support herself. I really do hope there is someone in her life to show her it wont always be as difficult and tell her don’t worry you can do this. I had an amazing woman right from the start of my son’s diagnosis who made me feel I could do and take on anything. That support meant everything to me. Believe me there is lots of time it does feel like “death by a thousand cuts”. I can recalled lots of examples of this feeling especially regarding the education system. This was a constant battle day in day out for years and broke my heart. Now my boys are in a wonderful school for the deaf and are flourishing. For my own sanity I dealt with problems and issues moved on to the next one (believe me the next one came rather quickly) trying hard not to dwell after each hurdle. Easier said than done believe I know. With that said I have three amazing sons who are exactly how they were meant to be. I feel blessed I get to be apart of their world. They are three wee happy, confident people always smiling and are full of fun, always up for any new experience and enjoys every part of their life. I am proud to be their mother every day. They have honestly made me the person I was supposed to be.
Paul
October 31, 2013
I have read through each reply and find there is a lot of anger in some people. As a father of a deaf child I take each challenge one at a time and I have the support of many around me. Each person is different that’s what makes life interesting. Don’t judge this person by your own experiences you don’t know the background. As with my child each day is a huge learning curve some good some bad but we move slowly forward and do what we believe is right until she can make her own life choices.
Shirley
October 31, 2013
My my! Plenty of differing viewpoints here. I am the hearing parent of a deaf adult and sometimes when I read articles like this it irks me that others feel the need to jump on the ‘hearing parents should be proud of their deaf child’ bandwagon. Of course we are!!!!!! I applaud the writer – all she is doing is being honest. As someone said we are only human and we all react differently to situations. I can understand how she feels. I have never been negative about my child’s deafness but yes I have cried as she has too about how being deaf ‘sucks’ sometimes. She’s entitled too. I’m not going to tell her she can’t because other people will view that as being negative. She lives a very fulfilling happy life. Why can’t we just respect how people feel and leave it at that. Thanks
John David Walker
November 1, 2013
As a deaf child of hearing parents, I have a burning question I need to ask and I hope you will allow me to be equally honest. It is a difficult question and it is likely to create some friction. I take the point that people are different and they respond to ‘difference’ in the many ways. I remember my own mother describing how she thought the child she had once had died and a new ‘disabled’ child appeared instead – she had to grieve for the child she thought she had (I wasn’t identified deaf until the age of 3).
I have had conversations with my parents about the decisions they have made. I respect they had to make those decisions as parents, but I don’t agree with those decisions. In fact, I have spent most of my young adulthood repairing what they had failed to address. Let me just say at this point that they were not completely hopeless – they did a lot of great things that make me incredibly proud of my parents. But how they perceived my disability affected the decisions they made.
My parents found solutions with doctors, audiologists, teachers, and other parents. Alternatively, I found my solutions in confident Deaf adults who were fluent in English and BSL and could move freely between the Deaf and hearing communities. My parents were too scared to meet them – whereas for me, they were a lifesaver. These Deaf adults gave me something my parents could never provide, the knowledge on how to survive as a Deaf person in a hearing, phonocentric world.
Here comes the question: if my parents had such negative connotations towards my deafness and their own situation – are they best placed to make decisions on my behalf as a child?
If my parents were brave enough to have met some of the people I came across and saw everything they have achieved, it is my belief they would have made different decisions. Their sadness and fear influenced the decisions they made and I am still living the consequences of them. I love my parents dearly, but if I want to be who I really am, I will find acceptance and celebration in the Deaf community (with hearing friends), and not in my own family.
hearing mother of a profoundly deaf son
November 5, 2013
When I first read this article I assumed it had been constructed purely to stir up debate – it almost made me laugh when I imagined the controversy it would stir up.
Coming back to it again and reading the reply from the ‘secret deafie’ my blood runs cold – this is a bona fide article?
Boy am I depressed. Don’t think I’ll be returning to the Limping Chicken for a while.
Editor
November 5, 2013
Hi, just to say it is 100% real. On this site we’ve always published views from both sides of the fence, so to speak. Personally I didn’t find this article easy to read, but I felt it was honest, that there are more people out there who feel this way, and we should publish it so that people are exposed to these views and can respond to them. Looking at the comments, which are really balanced, and I think are quite helpful, I think it was the right call. Charlie (Editor)
ralabal
May 26, 2014
I am very late to this discussion. I am a father of a 18 months deaf child who now has a CI. One thing that was not adressed is that I find the fact that my daughter is deaf incredibly enriching. It is not just that all people have challgenges in life etc. It is the fact that being a father of a deaf child makes me think a lot about what communication means, exploring and playing with various kinds of communication and thinking probably ten times as hard about what it means to communicate than if she were not deaf. The deaf world (including our deaf sign language teacher) has opened up a new world for me, which I dont want to miss now. Rather than being sad, I myself am thankful for being able to explore now sign language together with my daughter, something I would have never done, if she were not deaf. I want to accompany my daughter to the places where John David Walker went without his parents, and I realize that the hospital people do not really encourage this. This is the one thing that I really miss, some infrastructure that would make contacts between hearing parents and the deaf community easier. Now they put you in touch with other hearing parents of deaf people, but I think we need contacts to deaf people who speak BSL and can teach all of us BSL and show us what an amazing and enriching form of communication sign language is.
khryssmith
March 11, 2015
Reading this is a real eye opener… My daughter is only moderately deaf – but we had “felt” for some time that something just wasnt quite “right” – so when we were diagnosed at 31/2 – we actually felt immense relief – along with a healthy dose of guilt and sadness. Relief – that it was ONLY deaf – there were plenty of real options to help!.. guilt – that we hadn’t pushed hard enough to get hearing tests earlier.. moderate deafness can be really tricky to pick up. And yes – that sadness that the author of the article describes. It did and does still make me sad that my child was nearly 4 before she realised that “planes are loud!”. But overwhelmingly – we felt truly positive about the confirmation. Having a deaf child had never entered into our thoughts – and if we are to continue in the very honest vein – its not something I would ever have wanted for her. But its a part of her. And I can’s separate Her deafness from herself. It is an intrinsic part of what makes her.. her! I also used “we” when I referred to her diagnosis – as Her deafness is now a huge part of our whole family and community. It isn’t all about her – but nor is it all about us… its about everybody – and how we all learn to accept differences and work with them. Together.
Am I happy my daughter is deaf – NO. Would I change the deafness.. YES. Would I change my child and our life. NEVER.
As it turns out – being deaf is far from our childs only challenge. Being deaf is most likely to be one of the easier ones she will have to face. She will however have never known any different – and its only us as her parents that may ever spend a little “self indulgent” moment “grieving” for the might have beens,,,
But as a friend with CP said to me last night… Its (CP) a part of me.. it is me.. I wouldn’t be me without the CP. So yes its a pain in the arse.. but its MY pain in the arse.. and I am happy!
Faii
March 29, 2016
Omg, this article with this beautiful nuturing mother is exactly my existence the last 10 years and many more to come I feel.