Finding out your deaf child has additional needs

For some children it will be clear from birth, or within the first months, that there are special needs (for example, when a child has Down syndrome). For others, the deafness may be identified very early in life and then, as the child grows up, some aspects of their development may be slower than expected. For other children, difficulties and differences may be noticed by their parents or their General Practitioner (GP) as part of routine assessments. In some cases, extra needs may not be spotted until the child is a little older (for example, eyesight problems) or at school (for example, dyslexia or a specific language disorder). In some cases, illness (such as meningitis) or accidents may cause deafness and other difficulties.

• Pre-diagnosis
• After diagnosis
• Checking eyesight
• Finding services for your child and family
• Support and resources

Pre-diagnosis

Finding a diagnosis for your child can be difficult and stressful. Try and not be discouraged by the time that is needed or the lack of certainty about a diagnosis. The assessments involved in getting a diagnosis are just like a jigsaw puzzle where lots of pieces of information are joined together to see the full picture. When children are deaf and have additional needs, collecting all the pieces of the jigsaw can be even harder. Sometimes even sophisticated tests only tell us part of the answer. Assessing a child’s deafness can be hard if the child has several extra needs. The test equipment uses information collected from children at the stage of development that is usual for their age. So the results may be misleading for certain disabilities. A range of hearing tests may need to be carried out to get the full picture. Testing for hearing loss under anaesthetic may sometimes be helpful for families whose child cannot reliably perform behavioural hearing tests. It can be much harder for a professional to assess a child who is deaf and has other disabilities. For example, the deafness may make it hard to identify a language disorder and a delay in speaking or signing may be due to deafness, a general delay in development or physical disability. Assessments may be carried out by a number of professionals. Ideally, they should be part of a team which is responsible for assessing your child’s needs, identifying any areas of concern, and planning how these needs can best be met.

A range of professionals may be involved in the assessment of your child.

• Audiologist – the audiologist is responsible for assessing your child’s hearing, and fitting hearing aids and making sure they work well.
• Teacher of the Deaf – your child’s Teacher of Deaf can provide support and assess your child’s communication skills
• General Practitioner (GP) – this is the doctor who treats a variety of medical conditions for patients of all ages. Your GP can play an important role in coordinating the specialist medical services your child may need.
• Paediatrician – this is a doctor specialising in children’s health. They may discuss any necessary assessments and plan these with you
• ENT specialist – this is a doctor who specialises in assessing, diagnosing and treating problems of the ear, nose and throat. They have overall responsibility for the medical care of your child in these areas.
• Ophthalmologist – this is a doctor who specialises in assessing the eye, and in diagnosing and treating disorders of the eye.
• Geneticist – this is a doctor who specialises in investigating the genetic cause of a disability.
• Cardiologist – this is a doctor who specialises in diagnosing and treating heart problems.
• Nephrologist – a nephrologist is a doctor who specialises in diagnosing and treating kidney problems
• Speech Pathologist – the speech pathologist helps children with communication skills – developing speech or other communication systems. They can help with a wide range of difficulties and disabilities (for example, problems with swallowing).
• Social worker – a social worker can provide practical help and advice about counselling, transport and financial or housing difficulties.
• Family support worker – This is a lead person responsible for coordinating services and appointments. Family support workers are not available in every state.
• Occupational therapist – an occupational therapist works with children who have co-ordination problems or physical disabilities. They assess children, and plan and give advice on individual programs of care. They also refer children to other services.
• Physiotherapist – a physiotherapist assesses children, and gives advice on physical disabilities and possible treatments.
• A range of other professionals may also be involved.

Every child is different and will have different needs. Parents play an important role in any assessment. They understand many things about their child that can be useful for professionals to take account of. By working and learning together, your family, child and the professionals can find a positive way forward. Assessment on its own is meaningless unless it leads to action that improves the experience of your child.

You should be asked to give permission before your child is assessed. If at all possible, you should be present or close by when your child is assessed. Parents play an important role in any assessment. They understand many things about their child that can be useful for professionals to take into account. Your input during the assessment can be valuable.

The following examples from parents and the professional’s response show how parents’ comments have helped during an assessment.

Parent – “Sam always bangs his hands when he wants a drink or snack.”
Professional’s response – “Sam can communicate his needs so a simple picture systems could help him learn to make choices. A digital camera would be very useful to help make a picture diary of things that are important to Sam.”

Parent – “Helen screams when the phone rings. She gets really upset and bad tempered.”
Professional’s response – “Helen may be very sensitive to loud noises and needs this to be taken into account if she has hearing aids.”

The professional carrying out the assessment should discuss the results with you. If you do not understand anything, then ask the professional to explain things to you again or in a different way. You should be sent a written report about the assessment and the results when the report is completed. Keep all these reports together so that you can find them easily if needed.

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After diagnosis

Some deaf children with additional needs have a condition that has been identified (for example, Down syndrome or cerebral palsy). Sometimes it is impossible to diagnose (identify) a particular condition and a more general term may be used, such as ‘developmental delay’, ‘learning difficulty’ or ‘intellectual disability’. In these cases, the child has been given a ‘label’. This means that a specific need or condition has been identified. It is important to remember that a label is a tool and should lead to something helpful for your child.

The label may do the following:

• provide access to services like respite care, physiotherapy, speech pathology, or funding for specialist equipment
• help families and service providers to adapt and be more aware of meeting a child’s needs and supporting their development
• provide access to medical services (for example, for diabetes, coeliac disease, short-sightedness)

It is very important that labels attached to children do not act as a barrier to them getting the necessary support. So a deaf child with Down syndrome has just as much right to a Teacher of the Deaf and good audiological care as any other deaf child. Your expectations should be high, and shared with your support services so that you can jointly work towards them.

If you are not happy with the diagnosis or ‘label’ your child has been given, do not be afraid to ask for a second opinion.

Once your child has been diagnosed with a specific need or condition, you should receive advice and information to help you understand your child’s needs. Learn as much as possible about your child’s condition, possible treatment and management options and the support services available for your child and family. Information is empowering and will give you a sense of confidence and help you to cope and make informed decisions.

Checking eyesight

Most of the information children use to learn about the world comes from what they see and hear around them. For a deaf child, what they see plays an important role in helping them to gain language skills and explore their world. This means that regularly checking your child’s eyesight is important.

Knowing about your child’s eyesight tells you the following:

• What skills are already developed or need to be developed (for example, following moving objects)
• What level of light the child works best in
• Whether shiny surfaces help or cause problems
• Whether a particular colour is helpful or unhelpful
• Whether the child needs glasses, contact lenses or protection from strong light
• Whether your child should be approached from a particular side
• Whether an eyesight problems will affect your child’s ability to lip-read, see signs, and learn to read and write
• What adaptations will be helpful (for example, does patterned wallpaper make it harder for your child to pick things out than a single block of colour would?)

If your child does have severe eyesight problems, they should be referred to a specialised teacher who will provide support and suggest any specialist equipment or adaptations you may need.

Finding services for your child and family

The provision of services for families of children with a disability is complicated. Some services are funded by the Australian Government and others by state governments. Many early intervention services for deaf children are provided by not-for-profit organisations that receive financial assistance from government to provide services to families.

The specific services which are available to you may depend on where you live or the eligibility criteria for a particular service. There may be a waiting list for the service you need. Services make decisions on the information you give them, so never understate your situation. Tell them how it really is.

Families with children with additional needs often find it helpful to have a regular paediatrician. Paediatricians specialise in child health and understand the nature and causes of disability in children and can offer advice about local services for your child. It is also a good idea to find a good General Practitioner (GP). Your GP can be a great support and coordinator for your child’s needs if you are seeing a number of specialists or services. Your GP can refer you to a paediatrician and other medical specialists.

When your child’s hearing loss is first identified you will be referred to Hearing Australia for further hearing tests. The audiologist will discuss the best way to manage your child’s hearing loss with you. You will also receive a copy of ‘Choices‘ from Hearing Australia, which includes a booklet with information about the various early intervention programs offered in your state.

The team at the early intervention service you choose should work together with you to identify and deliver the support and services that is important for your child and family. They will play an important role in helping you to support your child.

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Support and resources

Support

• Children and Young People with Disability Australia (CYDA) is the national peak body which represents children and young people (aged 0-25) with disability.
• Association for Children with a Disability is an information, support and advocacy organisation for children with a disability and their families, in Victoria.
• MyTime groups provide local support for parents and carers of young children under school age with a disability or chronic medical condition who are eligible to receive the Carer Allowance (Child).

Resources

• Helping You and Your Family | Association for Children with a Disability – resources
• There’s No Such Thing As A Silly Question | DDWA – a practical guide for families living with a child with chronic illness, disability, mental illness or a life-threatening condition.
• Children Who Are Deaf or Hard of Hearing with Additional Disabilities | Victorian Deaf Education Institute

Information supplied by the National Deaf Children’s Society. Reproduced with permission.