Advice for new
parents

Most deaf babies are born to hearing families with no history of deafness – and it is a shock to them all.

Learning that your child is deaf can bring emotions of fear, loss, panic and huge sadness and parents sometimes receive conflicting information from different professionals when a baby’s deafness is first identified. From this point as a parent you will start learning about the many communication approaches available, about the modern hearing technology available (such as digital hearing aids and cochlear implants), and about services and educational programmes available.

It is a journey and the start of any new journey can be daunting, but don’t be put off – the sooner you start this journey the better it will be for you and your child. It will feel frightening at times! Don’t worry, this is normal.

A really good starting point is the National Deaf Children’s Society (NDCS) and the ‘Advice and support’ section of their website – in particular their ‘My baby has hearing loss’ booklet. The NDCS may also be able to put you in touch with parent support groups in your area.

As a parent of a deaf child you have to come to terms with a wide range of terminology, testing and technology relating to deafness that most people rarely encounter.

To get started, you can take a look at our ‘Facts about deafness’ page which explains about degrees of deafness, types of deafness and some of the impacts deafness has on communication.

For more detailed information, you can sign-up for free to our Let’s Listen and Talk service to access our special “Getting to grips with technology and terminology course’ which:

• explains how the different parts of the ear help us to hear sounds
• describes the various types of hearing test you might encounter
• shows you how to ‘read’ the audiograms produced by these tests
• provides advice on how to help your child get used to wearing hearing aids
• demonstrates how to maintain your child’s hearing technology

There is no single cause of deafness in children.

Some children are born with deafness and in other cases they become deaf at some point after their birth. In some cases, the cause of deafness can be easy to determine. Heredity, high fevers, illnesses such as meningitis, complications during pregnancy or childbirth are some possible causes. There may also be several other factors that contributed.

In many other cases, the cause is more difficult to determine and may never be discovered. Perhaps there is no apparent reason for deafness. In such cases, the cause is listed as “unknown”.

Your child’s degree of deafness (mild, moderate, severe or profound) may also be different in their left ear compared with their right ear, and the degree of deafness in each ear may change over time for a range of reasons.

If by “normal” you mean, “Will my child run and play, go to school, learn to read, have friends, drive a car, have a job or career, get married?” the answer is almost certainly, “Yes.”

If it means, “Will my child be exactly the same as a hearing child?” the answer is, “No.” There are differences between children with normal hearing and children who are deaf. The primary difference is in the way they will learn to communicate.

Having any degree of deafness (see our ‘Facts about deafness’ page for more information) can significantly affect a child’s ability to communicate.

However, with modern technology and appropriate intervention during their early years, most deaf children can – and do – learn to communicate clearly and effectively using spoken language.

Alongside developing their spoken language, many families will decide to help their child learn British Sign Language (BSL) to communicate more easily with their deaf peers.

There are lots of different methods of communication available to help your deaf child learn to communicate and for you to communicate with him/her. However, one unifying factor is that they all involve you, their parents.

No matter which method of communication you choose, you are the main educator for your child and may need to learn some new skills to support your child in learning to communicate and to enable you to communicate effectively with them. Deaf children who learn to communicate at an early age and who are included in family interactions have a good chance for success, both academically and socially.

Learn all you can about all methods – this will help you decide which one is best for your family. No one method is right for every child. To learn more about some of the different methods of communication we would again recommend starting with the National Deaf Children’s Society (NDCS) – and in particular their ‘Choosing a communication approach’ webpage.

Making a decision on which communication path to go down for your child is a very difficult thing. What you must remember is that they are too young to make this decision themselves and will be relying on you to make a choice for them.

Making an informed choice is the best possible way forward, so spend time and effort getting as informed as you can. The most important thing to do is to make a decision, rather than no decision at all. Deaf children need early language and communication intervention to set the foundations so they can learn to communicate effectively.

In making the choice for a method of communication, you must consider your child’s type and level of deafness and what suits your child and you as a family. Ask as many questions as you need to understand each of these factors. Talk with other parents and any professionals providing you with support, and compare the advantages and disadvantages of each possible approach for your child and your family.

It’s extremely important to make a choice, maintain interaction, and provide your child with clear and consistent language input. But remember, no decision is irreversible. You may feel some consolation from knowing that you can review decisions about communication methods and educational programmes as your child grows older, and add to them or adapt them. You can change your decisions as necessary, to provide your child with the best chance to reach their full potential.

Most children with a sensorineural hearing loss (see our ‘Facts about deafness’ page) are fitted with hearing aids right away – and babies can be fitted with them from a very early age.

Through ongoing and consistent testing your child’s audiologist will help you find the best hearing aids and the correct setting for your child’s loss.

Hearing aids do not “cure” deafness, but depending on the type and level of deafness, many children can learn to detect and discriminate the sounds of spoken language through hearing aids. This will help your child learn to communicate through speech and be aware of the sounds around him.

If hearing aids have been recommended for your child, it is important that your child builds up to wearing them on a full-time basis, as soon as possible, so they can hear and respond to everyday sounds and speech. For some children, however, a type of technology called a cochlear implant (see below) will be more suitable.

For some deaf children who do not receive enough benefit from hearing aids, a cochlear implant may be the most suitable way for them to access sounds.

Cochlear implants require surgery, which can take place from as early as around 10-12 months of age. You will need to work closely with your child’s audiologist to find out whether or not this procedure is appropriate for your child.

Decisions regarding your child’s educational placement, now and in the future, will depend upon many factors. Deaf children should be placed in school programmes depending upon the needs of the individual child.

You, the parents, will play an active role in making decisions regarding your child’s school programming and educational placement and the professionals working with you will give you support to do this:

• Some children who are deaf attend mainstream schools alongside their hearing peers. These children often require special support services – such as a Learning Support Assistant – so that they can benefit from their regular classroom settings .
• Some children who are deaf are placed in programmes with other deaf children because this is more appropriate for them, and which can be attached to a mainstream school in a ‘resource base’. Many deaf children spend some of their day in classes with other deaf children, and some of their day with their hearing peers.
• The third option is for your child to go to a specialist school for the deaf.

The most appropriate choice for your child will depend on their own unique circumstances.

From an early age, deaf children should receive educational support from their local government authority, alongside specialist audiological input (and any other relevant medical input) from local health providers.

If you have not already heard from them, contact your local health authority and local government authority and enquire about their programmes and services to help you and your child.

A deaf child might receive regular visits from a Teacher of the Deaf, ongoing appointments with an Audiologist, periodic assessments from an Educational Psychologist and input from a Speech and Language Therapist. The amount and range of the support you receive is likely to vary depending on where you live in the UK and the policies of your local education and health providers.

You might also be able to join parent-run or charity support groups in your local area – the National Deaf Children’s Society (NDCS) will be able to put you in touch with them.

If you and your child meet the eligibility requirements, you can apply for benefit payments to support the extra costs of looking after a young child who needs more looking after than a child of the same age who does not have a disability.

The main benefit is called Disability Living Allowance (DLA) which is paid by the government to eligible families at a range of rates depending on the level of the child’s needs and whether they have additional mobility needs alongside their care needs.

If your child gets the middle or highest care rate of DLA and you spend at least 35 hours a week caring for them, you might also qualify for Carer’s Allowance.

The National Deaf Children’s Society (NDCS) has further information on their ‘Money and benefits’ webpage and also have specialist benefits advisors as part of their Helpline (open daytime, Mon-Fri).