Receiving A Diagnosis For Your Child With Special Needs

Key points about receiving a diagnosis for your child with special needs

• receiving news that your child has special needs can be difficult - you and your family may 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 able to have some relief care
• if you feel extremely overwhelmed and this is getting in the way of your functioning, talk to your family doctor

What can I expect following the news my child has 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.

See a list of health and disability support organisations that can 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.

How can I look after myself when my child has special needs?

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.

What do I tell my other children about about their sibling's disability or illness?

Tell your other children at the time of their sibling's diagnosis. Tell them in simple language, that is at the right level for their age. Be open and honest - this helps your children to trust you. Answer questions as they come up. Your children may have a range of emotions and reactions when they learn more about their sibling's condition.

At the age of about 7 years, many siblings start asking questions about their brother or sister. This is an ideal time to answer questions in a matter of fact way. Keep siblings up to date if things change. They will also need more detailed information as they get older.

Why is it important to talk to my other children about their sibling's disability or illness?

It's improves their understanding

Talking to your child's siblings helps them understand why things are different for your child with a disability or illness. Your child gets more attention from you because they need more help, not because you love your child with additional needs more.

It helps sibling relationships

Talking openly helps improve the relationship between your child and their siblings. For example, if your child has difficulty playing, talking openly can help a sibling understand that this is because of the disability or condition, and not because their sibling doesn't like them.

It helps maintain trust

If parents don't tell siblings about the disability or condition, the effect on siblings is usually worse than telling them. They may hear things from others or read things on the internet which may not be correct. They may make up their own version of what is happening, which may be worse than the reality. When they find out that a parent has kept information from them, they may feel angry and not trust their parent to be truthful.

You might like to visit the 'Sibs' website - for brothers and sisters of disabled children and adults. 

Find out some more ideas about talking to your children about their sibling's condition

What if my child is diagnosed with a rare disorder?

Receiving a diagnosis of a rare disorder for your child can be a very distressing experience. It is normal to feel overwhelmed. There is a range of emotions you could experience, from confusion to anger to sadness. There is no right or wrong way to process this, everyone responds differently. 

It can be a challenging and unique experience caring for a child with a rare disorder. It is important to use the supports that are available to you and your whānau.

Take a look at the KidsHealth section on rare and genetic conditions for some helpful resources

Can I get respite care and carer support if my child has a disability?

You may be able 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. This is called respite care. You'll need to have an assessment by a NASC (Needs Assessment and Service Coordination) Service.

Find out more about needs assessment

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.

See suggestions for coping when your child has a diagnosis of a chronic illness or disability