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My son has just been diagnosed as deaf

I found your blog via Google and wondered if you could help me. I am the parent of a child who has just been diagnosed as deaf. As you can imagine, I’m shocked and upset by the news – my little boy is only 10 months old. How do I know when he’s trying to tell me something?  Joshua

Deafauntie says:

When I receive questions like this, Joshua, it never fails to amaze me that with everything we have in the UK, that people still fall through the net. With  the nationwide newborn hearing screening programme it is surprising that your baby’s hearing was not picked up but then I don’t know the full story. The NDCS has a Parent Place where parents can discuss things with each other and that might be a good place for you to start.
There are many professionals out there who are committed to the lives and progress of deaf babies and children, but whom unfortunately often have very strong opinions about what should or needs to be done. Start with your GP and also where you had the diagnosis and ask who you should see next as services vary hugely around the country.
Do remember your little boy is first and foremost your little boy – and who needs all the love and support you can give – with his charm and quirks. Watch out for what he likes and wants to do and talk to him face to face clearly (but not too loudly) and use gestures such as pointing to start with (smiling of course).
You’ll also have to kick butt to get what you want for your deaf child.
Good luck.

Deafauntie

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6 responses to “My son has just been diagnosed as deaf

  1. All children of loving parents find their own ways of communicating from birth. Never fear that lack! Yes you are right to consider his future needs, and to get your child started on the right tracks to keep up with his peers and outside world. You have made a good start regardless by contacting this website, and so you can take steps forward. Good luck and hey your child is lucky to have a Mother like you! … Plenty of time at 10 months old. My deafness was not discovered fully until I was 4 years old but I have managed to catch up and still enjoy family life and the world at large.

  2. I’m 39, almost 40 and I was having a chat with my 67 year old mother last weekend about my diagnosis. I was 18 months old when I was diagnosed and my mother said that she, my father and grandmother had to “kick butt” just to get me diagnosed as profoundly deaf as they suspected I was due to being fobbed off by their GP before being able to doing anything else. They also received a lot of support as hearing people who had never come across deaf issues before I came along from NDCS back in the 70’s. A lot has changed since then but funnily much hasn’t changed all that much which is why I’ve mentioned our ages to stress this point.
    Still a “late” diagnosis at 10 months isn’t too bad and please try not to be shocked and upset. My parents were unintentionally so for a long time and I had trouble forgiving them for that. We’re fine now, thankfully. But don’t waste time wishing your son wasn’t deaf because you can’t change that. Nor can he.
    Your boy will experience challenges but will, with your help, find his way through life and will be as fulfilled as anyone else. He will be able to have as many choices as you did – far more than recent generations of deaf people. Don’t lose sight of that. And as Laraine (and my mother) have said, be prepared to kick butt to get what your boy needs. Best of luck and you can do it!

  3. I feel that 10 months isn’t a late diagnosis but things may have changed in this regard. The earlier you get a diagnosis, the better. The really important window for profound deafness and cochlear implants is up to the age of 7 – you didn’t give an indication of the level of deafness but you have time to sort things out. I wasn’t diagnosed as deaf until I was 5, and up until that age, my parents were told I had brain damage. Charming!! I grew up lipreading and got cochlear implants 2 years ago, I like to think I’m doing pretty well

  4. As other people have already said, turn to the NDCS and be prepared to kick butt.

    Channel your grief positively by practical action (but don’t turn into a Tiger Mom or a Helicopter Parent). My own parents grieved greatly as their much-wanted only child became deaf, but they put me first and tried to do everything they could to help. Indeed, it still happens – in a noisy situation the other day my father lipspoke for me without asking!

    Take your cue from your child. There is no “one size fits all” approach (the professionals sometimes seem to think there is, and that’s where you have to kick butt). Give him context – not just looking at him, but also using facial expression and gesture, and always let him know the subject of the conversation before you discuss it (topic-comment formation). As he grows up, help him develop his own coping strategies for comprehension – a very important life skill.

    Immerse him in language – English, sign, lipreading, the written word – and develop his interests, as you would any child. You will have to be his advocate with hearing professionals, especially where they do not take his needs and views into account.

    Neil’s already pointed out that modern technology – hearing technology, assistive devices, communications technology – are far better than they were when we were children. They’re not perfect by any means, but they will help your son fulfil his potential. His future’s as bright as any other child’s.

    Don’t teach him with the goal of getting him to “pass as hearing”, but to help him attain his potential and maximise what he has through all the different avenues available to him.

    Good luck to you both!

  5. Hi my beautiful 10 week old daughter was disgnosed as profoundly deaf at 7 weeks old. we have just started the process for hearing aid trials and then will move onto cochlear implants before she is 1. My question is about milestones like smiling and cooing…. will she still do these?
    Like i said she is now 10 weeks but has not responsivley smiled or cooed at all…she makes great eye contact but nothing else seems to register. we still talk to her and smile sometimes obsessively and nothing. is this normal behaviour for deaf children?

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