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Coping with a deaf diagnosis
Last week my biggest anxiety was not fitting into a specific parental group, now I do - but it is not one which I ever envisaged I would be joining. My outwardly perfect 10-week-old baby boy has been diagnosed with a severe hearing problem. He will be fitted with hearing aids in the next few weeks and have to wear them for the rest of his life.
When the audiologist told me he was deaf, I sat in stunned disbelief. I'd gone to the appointment convinced the reason he hadn't passed the previous test was because he had a cold, not for one minute anticipating a diagnosis there and then. Emerging from the hospital trying to comprehend the enormity of what I had been told, I sat on the bus clutching my baby to my chest, tears dripping down my cheeks and read the leaflet ‘Your Baby Has a Hearing Loss' which gave the number of a charity to call for further information. On calling them I suddenly realised that I had been transformed from being the person who donates or raises money for charity to being a recipient.
My husband rushed home. Not, as I initially thought, to support me but because he was in profound shock too. As the days have gone by, unable to eat or sleep, I have tried to come to terms with it by talking to friends, professionals and people in similar situations but his grief is visible and hard to bear. The dreams he might have had for his first son have been shattered and as we pick up the pieces, I have been trying to reassure him.
We're so lucky that our 6-year-old has a deaf boy in her class. He is a gorgeous, popular, bright little boy who she invited to her birthday party. To have a role model for us all to look to is fantastic and I immediately sought out his mother who has helped to fill in the huge gaps about what life is like for the hearing impaired. The fact that the school has children with hearing problems reassures me that my son will be able to enter mainstream education and our wonderful child-minder - whom I first feared might not even be able to look after a baby officially labelled as handicapped - has reassured me that not only can she still look after him but that she has already looked into sign language classes and will learn it so that she can communicate with him even when he‘s not wearing his hearing aids.
My initial reaction was to stop going out, give up work, wrap him in cotton wool and devote my life to caring for my baby but I've begun to realise that for him to stand any chance of a normal life, I need to treat him as normally as possible. He's so lucky to have two big sisters who now see him as even more special and we're fortunate to have wonderful friends and family, all of whom have been immensely supportive. This week started with the tragic clichés but ends with the positive ones. It's at times like this you know who your friends are, there is always someone worse off than you and things can only get better. We'll all get through this.
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Comments (17)
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Report Thu Oct 13, 2011 - 7:31 pmHi. My son is 17 months and is moderately deaf in his right ear and severely in his left. It took them until he was 5 months to diagnose him because he kept waking up during the testing (who designs these tests anyways?!). He has had his hearing aids in from 6 months, with good and bad periods of keeping them in. I have really struggled to come to terms with it but we are just starting to turn a few corners. He is now keeping his aids in all the time and they make such a difference! It was so hard to tell when he was a baby and I hated them to much myeslf (you are so lucky to have a positive role model nearby for all of your sakes) that if he pulled them out I was in no rush to replace them. Now he is old enough that I can really see what a difference they make and if they do come out they are straight back in! You already sound a lot more positive than I was so soon after diagnosis so good on you. You can read more about our ups and downs on my blog but if you would like someone to talk to I would be more than happy. The one thing I recommend highly is to go on an NDCS newly diagnosed family weekend. You will cry for 48 hours solid but feel one million times better after it. Lots of love and positve thoughts. xxxReply -
2 replies, Last reply by Ali on Fri Oct 21, 2011 at 4:29 pm
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Report Mon Oct 10, 2011 - 7:36 pmHey there. I understand a little bit of what your are going through. I work with your husband & he might have mentioned the journey we have been on with our little girl Neave. It can take a while to get your head around things but keep talking to everybody - friends, family and professionals alike, I googled obsessively for positive and inspiring stories - there are lots of them about and it made me feel really positive about Neave's future. Knowledge about your little ones medical condition makes you feel stronger and much more able to cope with whatever obstacles you have to deal with. Definitely speaking to other parents who are in the same boat helps. I found it strange being the recipient of a charity and ended chucking myself into the middle of it and organising an event to raise money which made us feel pretty positive. Your little boy and my little girl are perfect and like you I treat her completely normally. It takes time to come to terms with a different reality to that which you expected but .different is not always bad and you like me will already appreciate just how wonderful your little boy is.Reply
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1 reply, Last reply by Sleepless in Suburbia on Fri Oct 21, 2011 at 1:15 pm
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Report Sun Oct 9, 2011 - 12:24 pmOh gosh I am so so sorry to hear this. This has been a terrible blow for you and your husband and I am only glad to hear you are getting help from the people closest to you. If I can be of any help at all, please don't hesitate to ask. I also know some sign language and have lots of resourses, and although I know it isn't the same, I am totally deaf in one ear and although not to the same extent I am effected in noisy situations and if I can help you with any more insight just ask!Reply
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Report Fri Oct 7, 2011 - 1:14 pmHi Sleepless in Suburbia, I'm not quite sure where to start, so I'll plunge right in! It's great that you have another Mum who is "in the system" and can give you guidance for local support. There is professional support - Audiology (NHS) / Education / Social Services. Then there is voluntary support. Depending on where you live there may be a local Deaf Children's Society. Some of these local ones are affiliated to the National Deaf Children's Society (this may have been the charity you spoke with)- but they are very different and offer different support; information and knowledge. How recently has he been diagnosed and what professional support have you been offered? I have 2 key pieces of advice to share at this stage (1) write down notes/ conversations / questions. If it's written down, you don't have to try and remember, you can just refer to it when you need to. It's really useful to keep a notebook on you all the time. (2) Ask everyone for what help they can give you / your son / your family; and what their opinion is. Also ask them "What else should I know or do that will help my son?" Please know that everyone has an OPINION - there are very few facts: i.e. his hearing loss is a fact, but different people will have different opinions, e.g. some will say that he should only speak or only sign. The choices are yours to make. For now, give yourself, and your husband time come to terms with the news. I have loads more I can share, if you'd like to contact me when you are ready, hopefully I can help. naomi@coresense.co.uk I have an 8 year old who is moderately / severely hearing impaired with other mild needs due to extremely premature birth, and professionally I work with parents to help them communicate effectively with the professionals supporting their family.Reply
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2 replies, Last reply by Naomi on Fri Oct 7, 2011 at 4:47 pm
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Report Fri Oct 7, 2011 - 10:46 amSo sorry to hear that Fi. I know you'll work through it as a team - once you've got over the shock and planned some ways forward I'm sure everything will feel less worrying. Lovely tribute to the tiny role model - inspiring hope and confidence at 6 years old. Big hug, Jules xReply
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2 replies, Last reply by julesaction on Fri Oct 7, 2011 at 3:36 pm
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Report Fri Oct 7, 2011 - 2:53 pmHello. I am in Australia; not sure what country you are in. I would like to make a few comments that may be helpful. I am a teacher with a post graduate degree in Deafness Studies. Firstly, let me tell you how much help there is for your son out there. In Australia, and I know in the UK and USA there are fantastic early intervention programs which ideally begin when your child is a baby, so he can get as much language as possible through the best ways for him. Receptive language (listening) is so important for your son. That is why they want to fit him with hearing aids right away. Depending on what kind of hearing loss he has, the early intervention may include signing, as well as auditory training and speech therapy. Get in touch as soon as possible with an early intervention specialist. You and your family will learn how to communicate with him, so he won't miss out on all the language input he needs. If I can help in any way, please email me broni.doran@gmail.comReply
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Fri Oct 7, 2011 - 12:42 pm
I'm sorry to hear that news but you are already finding some wonderful support. As the mother of a disabled son myself, I can assure that support, knowledge and coming to terms with the diagnosis will see you through.Reply -
1 reply, Last reply by Sleepless in Suburbia on Fri Oct 7, 2011 at 2:17 pm
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Fri Oct 7, 2011 - 1:13 pm
I have a very good friend with a deaf six year old. He attends mainstream school with support and is a lovely, happy, friendly boy who is obsessed with cars. Being deaf needn't hold him back. Good luck.Reply -
1 reply, Last reply by Sleepless in Suburbia on Fri Oct 7, 2011 at 2:15 pm
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