Key points to remember

• if your child is diagnosed with a chronic illness or disability, it is an enormously stressful time
• coping is an ongoing process
• everybody copes in a different way - there is no right or wrong way
• seek support when you need it

What is coping?

When your child is diagnosed with a chronic (long lasting) illness or a disability, this is an enormously stressful time for parents and caregivers. Coping is an ongoing process and there is no right or wrong way to mange this time of your life.

You will go through a range of emotional experiences, similar to that of the grief cycle - denial, anger, depression, fear. All of these are normal and natural when faced with a stressful situation. There will be days where you feel that the world is against you and you want to bury your head under the duvet. It is important to remember you will come through it, it may just take time.

There are a number of different strategies which people use to help themselves and their families through this difficult time. Working out what strategy works for you is part of the coping process, so you may have to try some until you find the one that works best for you.

The following are some strategies you may find helpful:

• social support
• internet forums, blogs and online support groups
• individual counseling or therapy
• educate and advocate
• financial support
• looking after yourself

Social support

Internet forums, blogs and online support groups

Internet forums like blogs or online support groups are also a good way of finding out what other people are experiencing and dealing with. Through this you can connect with others without face to face contact which many parents appreciate.

Individual counseling or therapy

Individual counseling or therapy can help you deal with the emotional experiences you are going through. Some hospital clinics will have access to psychological or counseling services so it is important that you ask your doctor about the support that’s available.

Educate and advocate

As a parent/caregiver you will always be your child’s number one advocate. It is important to become fully educated 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, find out what is available, and become fully informed about what supports your child is able to access.

The Internet is a great place to find out information, but it is important to remember that there is always more than one perspective on an issue, so make sure you are looking at reliable sources such as major hospitals or research centres.

Financial support

• Financial help when your child has a disability or chronic illness

Looking after yourself

You will have heard about the importance of putting on your oxygen mask before helping others when on a plane. The same rules apply when having to cope with a stressful time. You need to be in the best position possible so you can look after your child with a chronic illness or disability and other family members. Although this may sound selfish, it is about strengthening yourself so you can be strong for your child.

Where to go for more information and support

There are a number of places to get more information. Your medical team including your GP (general practitioner) will be a great source of information. Other NZ websites that may have information that you find helpful include:

• Starting the journey
• Getting a diagnosis
  - Diagnosis before birth
  - Diagnosis at birth or soon after
  - Diagnosis in the infant years
  - Teenage or adult-onset diagnosis
  - Undiagnosed conditions
• Finding information
• Connecting with others
• Getting help
• Other New Zealanders' stories

Acknowledgements