Later identification of deafness

We’re here for you whenever you need us – whether your child has just been identified as deaf or their hearing loss is acquired, progressive or late onset. In the UK, half of deaf children are born deaf and the other half develop deafness during childhood.

Find information on this page about emotional support, what happens next, communication options, what to do if you’re having problems and much more.
 

Emotional support for parents and families

A mum and dad cuddle their baby boy in the park.

For some families, when they are told their child is deaf or losing their hearing, it can come as a great shock. Some parents may be upset by the news, others may be relieved that their suspicions have finally been confirmed. There is no right or wrong way to feel and it’s important to take the time to adjust, to look after yourself and consider how you are feeling. There is support out there for both you, as a parent, and for your deaf child.

“When we were first given the diagnosis we felt relief, but I also felt guilty that we’d let our son down for all those years. We could have been angry about the late diagnosis but there’s no point looking backwards, and ever since, audiology has been brilliant.”  Parent of a deaf child

“They [audiologist] are saying that your child is deaf but it doesn't mean that they aren't 'whole'.”  Deaf young person

  • Join a Local Group in your area to meet and share experiences with other families with a deaf child. If you’re unable to attend a Local Group, you can still join and receive local information and updates.
  • Something on your mind? Start a conversation on Parent Place, our forum for parents of deaf children, or Facebook and see if other families have gone through the same thing.

“The key is to get as much information as you can. Take every offer of support. Join up to Facebook groups and post questions to get advice from other families.”  Parent of a deaf child

A girl learns how to use a camera.

“When he was diagnosed, questions went through my mind like ‘how’s he going to get a job?’ But now I’m better informed about deafness I know he can lead a normal life and there’s no limit to what he can achieve.”  Parent of a deaf child

“I remember being told there was no chance that I would talk but I paid no attention to other people putting limits on me. When I was just three years old I did ballet, aged four I was cochlear implanted and I did many shows and Royal Academy of Dance exams.”  Deaf young person

  • Telling family and friends can be very hard and only you know when and how is best to tell other people. One parent told us:

“I talked to [my family] about his hearing loss and how to communicate with him, for example, I told them to go over to him and communicate face-to-face. I think education is the key – but don’t overwhelm them with the small details. Tell them what your child needs from them.”  Parent of a deaf child

  • Has your child become deaf as a result of illness? Watch our video with Dan, 16, who lost his hearing last year when he contracted meningitis. He shares his experience and how it changed his life.
Dan, who has been through meningitis, holds a football.

He told us: “being deaf is nothing to be scared or ashamed of. Some people wear glasses to help them see, and some people need an implant or hearing aid to help them hear. There’s no reason why deaf children can’t succeed at anything they want to if they have the right support.”

If, like Dan, your child has already developed language before becoming deaf, you will need to think about the best way to help your child to continue to develop language, and how the family will need to adapt to make sure your child continues to feel included and able to communicate.

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Emotional support for your child

The ways that your child will cope with their deafness will vary greatly. The issues for a younger child will be very different from those of a teenager. An older child or teenager may take a long time to accept their deafness, whereas when the child is younger they will probably take it all in their stride.

If you have a good understanding of your child’s deafness, it will help you when you’re explaining it to them (if they are old enough). Your child might be feeling frightened, angry, confused or depressed, so it’s important that you give them time to understand how their deafness will affect their life, and to talk about how they’re feeling. They may need some additional emotional support to come to terms with their hearing loss – speak to your GP about any concerns you have about your child’s well-being, and they (or any other professional working with your child) may be able to get them a referral to the Deaf Child and Adolescent Mental Health (CAMH) Service for specialist support, if needed.

You may find that your child’s behaviour has changed. Their attention span may be shorter, or they may have temper tantrums or become more clingy. This may be as a result of any deafness and frustration caused by difficulties communicating, or for others, be related to having been through a serious illness.

Other children in the family may also become unsettled if your child is getting a lot of the family’s time and attention so ensure you explore with them what they are feeling too.

 Two brothers swing from a climbing frame in a playground

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What happens next?

A boy gets his ears checked at the audiology clinic.

After your child is identified as deaf, they will be regularly seen at their local audiology clinic. Have a look at our section on Your child's audiology service for information on:

  • what audiology clinics do
  • professionals you’ll meet and their roles
  • appointments
  • hearing aids: provision, earmoulds, batteries and technology
  • transferring to adult audiology services.


You can also read about what standards your child's audiology clinic should be working to and what to do if you’re unhappy with the service your child is receiving.

Please note that what is available for your child, from audiology services to education support may vary depending on which country in the UK you live in.
 

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How your child can meet other deaf young people

A group of teenagers smile and chat together in a group outside.

They can:


Find out about our Information for deaf young people.
 

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Your rights

A mum supports her son doing his homework.

The law says that disabled people cannot be treated unfairly or be discriminated against because of their disability (the Equality Act, and the Disability Discrimination Act for Northern Ireland). Your child has a number of rights which both you, and your deaf child, should be aware of, such as access to health, education and work, including apprenticeships and higher education. The law also says that schools, colleges, universities and employers must make ‘reasonable adjustments’. This means that they must try to ensure they do as much as possible to remove barriers for your child.

Visit our Education section for information relevant to the age of your child, information about your child's rights in education and also for guidance about the additional support and services that are available to children with special educational needs (SEN) including Education, Health and Care (EHC) plans and Local Offers.

You may also be entitled to support from the local authority social care services.

“Over the years I’ve had to learn that those who shout the loudest get heard first. You have to make yourself heard so that your child gets the right support. Trust your gut, shout if you need help, and push if you don’t believe somebody is giving you the right advice or information.”  Parent of a deaf child

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Financial support

There are a number of welfare benefits and other sources of support available for a family with a deaf child, or for a deaf young person. For information on Disability Living Allowance (DLA), Personal Independence Payment (PIP) and other sources of funding, visit the Financial support section.

“I use DLA for things like a tutor to aid my son’s learning and swimming lessons to build his confidence.”  Parent of a deaf child 

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How technology can help

A family laugh as they huddle around an ipad.

Technology and equipment can help deaf children and young people at home, school or college and when they’re out and about, from listening to music to waking them up in the morning. It can also help them to be more independent. Visit the Technology and products section for more information, including how to get free equipment for your child and borrowing products through our Technology Test Drive loan service.

The technology your child is offered may vary depending on where you live. It’s important to know what’s available to support your child to ensure they are getting the best support they can.
 

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Encouraging deaf young people to be independent

Girl makes a cup of tea

As your child gets older (or if they are already approaching their teens), it’s important that they start to take more responsibility for themselves. Encourage them to:

  • talk confidently about their deafness
  • look after their hearing aids or cochlear implants (watch this video for hearing aid care)
  • take responsibility for their health (they could have a look at our My life, My health resources)
  • ask for the support they need whether at school, college, university, on an apprenticeship, work or work experience
  • try out different technology to find out what suits them.

Some deaf young people find this difficult. This is normal. Encourage them to practise with family or friends. Or see if they can get in touch with deaf adults who can talk to them about their own experiences, for example, how they’ve got a job, how they’ve explained about their deafness to others and so on.

“I feel our audiologist does address my daughter directly and involves her in making decisions.”  Parent of a deaf child

“Diagnosed as deaf at two-and-a-half, Lucy was painfully shy. She’s grown from there into a confident 17-year-old, taking driving lessons and choosing universities. I am so very proud of her.”  Grandmother of a deaf child 

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Communication approaches and tips

A family sits on the floor and plays a game using sign

Developing good communication is vital to all children and their families. Every family, and deaf young person, has different communication needs and what works for one will not necessarily work for another. For this reason it can be helpful to gather as much information as possible before making any decisions about communication methods.

“I needed to know that it wasn’t my fault and what my options were. When I got the information I started to focus on the important things like communication and not on who to blame.”  Parent of a deaf child

Visit the Communication section for more information, including tips that you might like to share with friends and family. 

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What to do if you’re having problems

A mum uses the phone.

Call us for information and support for deaf children and families. We can talk you through a range of issues including audiology, benefits, education, technology, health, social care, discrimination and communication.

Call us: 0808 800 8880
Email us: helpline@ndcs.org.uk
Live Chat: www.ndcs.org.uk/livechat

Our Freephone Helpline opening hours are from Monday to Thursday between 9.30am–9.30pm and on Friday between 9.30am–5pm.

Where needed we can provide specialist support including home visits from our UK wide team of Children and Families Support Officers. This is a free service to support children and families. 

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