What is deafblindness?

Deafblindness is when children have problems with both seeing and hearing. It’s sometimes called ‘dual sensory’ loss.

Congenital deafblindness is when the problems are there from when children are born. Acquired deafblindness is when the problems appear at some point during childhood.

Deafblind children usually have one of the following experiences:

• They have both hearing and vision loss from birth or early childhood.
• They are blind from birth or early childhood and lose hearing later on.
• They are deaf from birth or early childhood and lose sight later on.

Most children who are deafblind have a little bit of hearing or vision. They can use the sight or hearing they have, along with their other senses, to learn how to communicate with others.

Deafblindness is a lifelong condition.

Children who are deafblind will need help to communicate and make friends with other people. Otherwise, there’s a risk they might grow up feeling isolated.

Causes of deafblindness

Some of the causes of deafblindness in children include:

• genetic conditions like Usher syndrome and CHARGE syndrome
• viral infection during pregnancy, including infections like rubella and encephalitis
• cerebral palsy
• fetal alcohol spectrum disorder
• premature birth
• illness, trauma or injuries.

Early signs and symptoms of deafblindness

Children who are deafblind might have eyes and ears that look the same as everybody else’s. Often, it will be something about a child’s behaviour or the way they use their eyes that makes you think there could be a problem with their hearing or vision.

Most babies start to focus on faces and things by 4-5 weeks of age. They turn their heads to hear where a sound is coming from by 4 months.

But babies who are deafblind might not:

• turn their heads to hear where a sound is coming from
• make much eye contact with you or other people
• react to loud noises, voices or sounds, or they might take extra time to react
• make sounds
• reach out and move towards things
• move their arms and legs much, grasp objects, sit, pull themselves up to stand and walk by the time you expect
• like being touched by people or things.

These babies might also:

• sleep a lot
• cry only a little bit
• rock backwards and forwards
• bang their head
• poke their eyes.

If you’re worried about how your baby or child is behaving or developing, you can talk about this with your GP or child and family health nurse.

Diagnosis of deafblindness

The earlier deafblindness is diagnosed, the better.

All babies are offered hearing screening just after they’re born.

If you’re worried about your child’s vision or hearing as they get older, first see your GP. Your GP will refer you to an audiologist and/or ophthalmologist. These specialists will look at your child’s ears and eyes, ask you questions about how your child acts, and do tests. At the end of this, the specialists should be able to say what the problem is.

How deafblindness affects development

A child with hearing and vision loss has difficulty or delays in understanding what’s going on around them. This means that deafblindness can affect other areas of your child’s development:

• Communicating – for example, your child might not see someone waving and smiling at them or be able to make eye contact.
• Talking – for example, your child might not point to objects, so the people nearby won’t name these objects.
• Telling the difference between day and night – this might make it hard for your child to settle into a regular sleeping routine.
• Sitting, crawling and walking – for example, your child might not want to move towards objects, because they can’t see or hear them.
• Learning to read and write – your child might be delayed in learning the motor and listening skills they need for reading and writing.
• Playing – for example, your child might be afraid to touch certain textures or explore areas they can’t see.

You can encourage your child to explore their environment using whatever sight and hearing they have – and all of their other senses. This will help spark your child’s curiosity about the world around them.

Early intervention for children with deafblindness

Early intervention is the best way to support your child’s development. Early intervention includes therapies, education and other supports that will help your child reach their full potential.

Early intervention should also include helping you learn how to spend time with your child in ways that support their development. Children learn the most from the people who care for them and with whom they spend most of their time, so everyday play and communication with you can help your child a lot.

For example, early intervention will help you to understand your child’s communication style. This might include gestures and signs, personalised actions, drawings, body language and some speech.

Early intervention can also help your child learn how to make sense of sounds and touch, be around other people, make friends and feel confident to explore their surroundings.

You and your child will probably work with many health and other professionals as part of your child’s early intervention. These professionals might include paediatricians, speech pathologists, special education teachers, orientation and mobility instructors and counsellors.

It’s good to see yourself as working in partnership with your child’s professionals. When you combine your deep knowledge of your child with the professionals’ expertise, you’re more likely to get the best outcomes for your child.

Financial support for children with deafblindness

If your child has a confirmed diagnosis of deafblindness, your child can get support under the National Disability Insurance Scheme (NDIS). The NDIS helps you get services and support in your community, and gives you funding for things like early intervention therapies or one-off items like hearing aids.

Looking after yourself and your family

Although it’s easy to get caught up in looking after your child, it’s important to look after your own wellbeing too. If you take care of yourself, you’ll be better able to care for your child.

Talking with other parents can be a great way to get support. You can connect with other parents in similar situations by joining a face-to-face or an online support group.

If you have other children, they might have a range of feelings about having a sibling with disability. They need to feel that they’re just as important to you as your child with disability – that you care about them and what they’re going through. It’s important to talk with your other children, spend time with them, and find the right sibling support for them.