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What is deafblindness?

Deafblindness means that your child has problems with both seeing and hearing. It's sometimes called 'dual sensory' loss.

Congenital deafblindness is when the problems are there from when your child is 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.

A child doesn't have to be completely deaf and/or blind to be considered deafblind. In fact, 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
  • early premature birth
  • illness, trauma and 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 your child's behaviour or the way he uses his eyes that makes you think there could be a problem with his 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 four 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 when you speak to them
  • make sounds
  • reach out and move towards things
  • move their arms and legs much, grasp objects, sit, pull themselves up to standing 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 or 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. You can also talk about any of your concerns with your 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. These tests can pick up many hearing impairments.

If you're worried about your child's vision or hearing as she gets 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 exactly what the problem is.

Effects of deafblindness

A child with hearing and vision loss has difficulty or delays in understanding what's going on around him. 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 her or be able to make eye contact.
  • Talking - for example, your child might not point to objects, so the people around him 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 she can't see or hear them.
  • Learning to read and write - your child might be delayed in learning the motor and listening skills he needs for reading and writing.
  • Playing - for example, your child might be afraid to touch certain textures or explore areas she can't see.
  • Responding quickly to situations - your child might not be able to learn through seeing, so he might not know how to respond to a situation or experience and will take his time in responding.

You can encourage your child to explore her environment using whatever sight and hearing she has - and all of her other senses. This will help spark your child's curiosity about the world around her.

Early intervention services for children with deafblindness

Early intervention services can connect you with health and education professionals who can assess your child's abilities.

These professionals can help you learn how to spend time with your child in ways that support his 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 can help your child a lot.

These professionals will also 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, make friends and be around other people, and feel confident to explore her surroundings.

The team of professionals involved in supporting you and your child might include paediatricians, speech pathologists, special education teachers and orientation and mobility instructors.

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're physically and mentally well, 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, these siblings of children with disability need to feel that they're just as important to you - that you care about them and what they're going through. It's important to talk with them, spend time with them, and find the right support for them too.