Key points about coping with your child's diagnosis
- when your child gets a diagnosis of chronic illness or disability, it can be a stressful time
- coping is an ongoing process
- everybody copes in a different way - there is no right or wrong way
- reach out for support when you need it
After a child's diagnosis
When your child gets a diagnosis of long-lasting (chronic) illness or disability, it can be a very stressful time. Coping is an ongoing process and there is no right or wrong way to manage this time of your life.
You may go through a range of emotions, similar to that of the grief cycle - denial, anger, depression, fear. All of these are normal and natural when facing a stressful situation. There is no right or wrong way to respond; it is important to remember you will come through it. It may just take time.
Strategies for coping with a child's diagnosis
Different strategies can help you and your whānau (family) cope during this time. Working out what strategy works for you is part of the coping process. You may need to try different things until you find what works best for you.
The following are some strategies you may find helpful:
- educate and advocate – learn as much as you can from reliable sources
- get social support from friends and whānau
- ask your health professional about support service, including counselling or therapy
- ask about financial support
- look after yourself
Learning about a child's condition
As a parent or caregiver you will always be your child's number one advocate. It is important to learn as much as you feel able to about what your child is going through. Develop relationships with all professionals involved in your child's life. This includes people outside your medical team, such as school staff. Ask questions and find out what supports are available for you
The web is a great place to find out information. But, it's important to remember that there is always more than one perspective. Make sure you look at reliable sources such as major hospitals or research centres.
Social support when coping with a child's diagnosis
The support that you receive from whānau and friends is very important. Take the help offered to you and don't be afraid to ask for support. Finding a person who listens well and understands your situation is really important. Connect with the important people in your life. Even if this is for 10 minutes a day. It all adds up and can help to bring you some peace and normalcy back into your life.
Telling your whānau and friends honestly what is going on makes things easier. You don’t have to pretend about how you are coping or know all the answers. Sharing openly helps build a strong support network for you and your child.
Local support groups are also really useful. This is an opportunity to meet and talk with someone who has been through a similar experience to yours. This reminds you that you are not alone.
Parent to Parent is a nationwide network of whānau who have experienced a diagnosis for their child. See below for their contact details.
Parent to Parent is a website that helps connect parents who have children with similar needs. They provide support and information to families and whānau of tamariki with disabilities.
Online and in-person support groups
Find your community. Create a social support network of people who understand and “get it”. Building a support network can help during stressful times. Online groups can be helpful, especially if it is hard to meet in person. Be careful with information you find on social media. Not everything is reliable, and people may be at different stages of their journey. If social media is making you feel more stressed, it is okay to take a break.
Individual counselling after a child's diagnosis
Counselling or therapy can help you deal with the emotions you are going through. Counselling or psychology services may be available through some clinics or health professionals. Ask your health professional about what support is available.
Financial support after a child's diagnosis
Chronic illnesses and disability can put a financial strain on whānau. Ask about financial assistance such as the Child Disability Allowance or Disability Allowance.
Financial Help When Your Child Has A Disability Or Chronic Condition
Looking after yourself following a child's diagnosis
Self-care is not selfish. You may have heard the advice to put on your own oxygen mask before helping your child on a plane. It's the same when having to cope with a stressful time. Your child with a chronic illness or disability needs you to stay well. This helps you care for them and your whānau. This is about strengthening yourself so you can be strong for your child. It's important that you find some ways and moments to look after your own needs. This includes your body, mind and spirit, and important relationships in your life.
Caring for a child with a chronic illness or disability can be demanding. It is normal to feel overwhelmed at times. Don’t beat yourself up. Do what you can to prepare—remember that you cannot be perfect and no-one expects you to be.
Some strategies that work for parents include:
- taking a few minutes to rest or have a quiet cup of tea
- deep breathing or relaxation
- having a bath
- going for a short walk or doing some gentle exercise
- listening to a podcast or doing something you enjoy
If you can, ask a whānau member or babysitter to help for a short time so you can have a break.
Some whānau may be able to access respite support through disability services. Talk to your health professional about what support is available.
Where to get more information and support
There are a number of places to get more information. Your healthcare team, including your family doctor, will be a great source of information. New Zealand websites may also have information that you may find helpful.
Rare Disorders New Zealand website has online information and resources as well as a comprehensive support group directory. They also have a parent & caregiver guide that is full of information to help if you are raising a child with a rare disorder in New Zealand.
Parent to Parent is a website that helps connect parents who have children with similar needs. They provide support and information to families and whānau of tamariki with disabilities.
Carers NZ acts as the national peak body providing information, advice, learning and support for New Zealand whānau and carers.
Skylight provides a national support service for New Zealand children and young people who are experiencing change, loss and grief - whatever its cause. Skylight also supports those caring for these children and young people - their families, whānau, friends, professionals and community volunteers.
Visit the Ministry of Education website for a range of information about learning support available depending on your child's needs.
One parent's experience of raising a child with special needs
Mel talks about her experience of raising a child with special needs.
Mel talks about the challenges associated with raising Ryan.
Source: KidsHealth
Mel says one of the hard things about having a child with special needs is that you become more conscious as a parent. More input is required to help your child meet developmental milestones. Mel says the best thing you can do for your child is to let them know they are loved and accepted.
Source: KidsHealth
Mel discusses how having Ryan has affected her relationship with her husband. She says when you're faced with challenges you dig deep. Mel and Richard's relationship has strengthened as a result.
Source: KidsHealth
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.
Source: KidsHealth
