Receiving a diagnosis for your child with special needs

Receiving a diagnosis for your child with special needs

If you receive news that your child has special needs, it can be distressing. Remember, there are services available when you want or need help.

Key points to remember

  • receiving news that your child has special needs can be difficult and can lead you and your family to experience a range of emotions
  • the support of the people you love is one of the things which can help you through these times 
  • you will also need to take time out for yourself 
  • you may be eligible to have some relief care for a number of days each year - usually, this is money paid to an informal carer that you choose
  • if you feel extremely overwhelmed and this is getting in the way of your functioning, talk to your family doctor  - they may be able to link you with counselling through Primary Health Organisation funding

Having a child with special needs

Whenever you receive news that your child has special needs – whether it's during pregnancy, after birth, during the infant years or later – it can be distressing and can lead you and your family to experience a range of emotions. You may feel shock, anger, denial, fear, guilt, sadness, and helplessness.  This is normal. The future can be unknown and planning ahead is therefore very difficult.

Remember, there are services to help when you want or need help.

A parent's experience of receiving a diagnosis

In the video below, Mel talks about the first 24 hours after receiving the unexpected news that her newborn son Ryan was being tested for Down syndrome.

Early on, following the diagnosis, Mel and her husband put on a brave face and projected positivity because they knew others would take their cues from them.

Looking after yourself

The support of the people you love is one of the things which can help you through these times. While your child will understandably be your main focus, it is important that you make time for these relationships as well.

You will also need to take time out for yourself – to rest and relax and pursue your own interests. If family and friends offer to help, accept their offers. Try not to keep things bottled up – sharing your thoughts and feelings with someone you trust can help.

In the video below, Mel stresses that when you have a child with special needs, it is particularly important to stay strong, focus on the big picture and look after yourself and your relationship.

Respite care and carer support

You may be eligible to have some relief care for a number of days each year. Usually, this is money paid to an informal carer that you choose. This is called carer support.

In some cases, where there is severe disability, there may also be access to some respite provided for your child in a facility. This is called respite care and needs to be assessed by a NASC (Needs Assessment and Service Coordination) Service. Ask your social worker for assistance or call HealthPAC, the Ministry of Health's help line on 0800 281 222 (press 2).

If you can receive respite care and carer support, they can be important for you and your other children. They can give everyone a break, including your child with special needs.

You may find the needs assessment page on this website helpful, as well as coping when your child has a diagnosis of a chronic illness or disability.

This page last reviewed 06 November 2018.
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