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.
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.
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.
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:
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.
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:
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.
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 Australian Hearing 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 Australian Hearing, 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.
07-Nov-2015 2:09 PM (AEST)