Coping when your child has a diagnosis of a chronic illness or disability

Coping when your child has a diagnosis of a chronic illness or disability

When your child is diagnosed with a chronic illness or disability, coping is an ongoing process. Everybody copes in a different way. Seek support when you need it.

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 long lasting (chronic) illness or a disability, it is an enormously stressful time for parents and caregivers. Coping is an ongoing process and there is no right or wrong way to manage 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:

  • get social support
  • check internet forums, blogs and online support groups
  • ask about individual counseling or therapy
  • educate and advocate
  • ask about financial support
  • look after yourself

Social support

The support that you receive from families and friends is very important. Take what help is offered and do not be afraid to ask for help. Finding a person who listens well and can understand your family situation is really important. Connect with your partner or important person in your life. Even if this is for 10 minutes before you go to bed, these times all add up and can help to bring you some peace and normalcy back into your life.

Being able to tell your family and friends honestly about what is going on will make things easier, as you will not have to put on a front about how you are managing. Communication is a key part of developing an effective support network.

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 tells you that you are not alone. Parent to Parent is a nationwide network of families who have experienced a diagnosis for their child. See below for their contact details.

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

Chronic illnesses and disability can put a financial strain on families. Ask about financial assistance such as the Child Disability Allowance or Disability Allowance.

See the following page on this website for more details:

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.

Some strategies that work for parents include relaxing - have a bath, do deep breathing, take some time out, even if it just to read a magazine. Have a night off by calling in a babysitter or family member - this can help you to rejuvenate. Exercise is also a good way to manage stress, although it can be hard to find time to do exercise. It can be as simple as taking a walk around the block which will help your body to relax.

In some situations families may be able to access respite services through disability agencies. Your medical team will be able to advise you about this.

Where to go for more information and support

There are a number of places to get more information. Your medical team, including your family doctor, will be a great source of information. New Zealand websites may also have information that you may find helpful. These are listed below.

One parent's experience of raising a child with special needs

Mel talks about the challenges associated with raising Ryan.

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.

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.

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.

www.mayoclinic.com [Accessed 14/09/2015]
www.diabetes.org [Accessed 14/09/2015]
www.parent2parent.org.nz [Accessed 14/09/2015]

This page last reviewed 29 September 2015.
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