MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Children & young adults

Talking with children and young adults about motor neurone disease (MND) isn’t easy.

Most people are uncomfortable talking about serious illness and death. As a parent, your first instinct may be to protect your children from illness, and it may seem right not to tell them, to spare them the sadness.

Unfortunately, there is no way to spare the sadness that MND brings. Children and young adults will need to deal with and work through what is happening.

Often, children realise something is wrong without being told, and without the facts they may be guided by their imagination and be worried or anxious about things that are not true. For example, children might think that they somehow caused the person they love to get sick, that they are going to hurt the person with MND by giving them a hug, or be worrying that they may catch MND.

Many experts who work with children and young adults believe that young people are better able to cope with situations if they know what is happening and feel comfortable asking questions.

Below you will find tips and information on where else to find support for talking with children and young people about MND.

Children and young people need:

  • information that is honest and appropriate to their age
  • to know they can ask questions
  • to share how they are feeling

There is nothing wrong with a child or young adult seeing you sad or you seeing them being upset and crying. It is important that children and young people know that it is normal for people to be upset and cry when bad things happen.

One way you can talk about crying with children is to explain that crying helps to get rid of feelings that build up inside us. It helps us to feel better. Some other ways to discuss MND with children and young adults are below.

Listen as much as possible
  • try and find a place to talk without distractions (e.g. a quiet room, a place without many screens or devices)
  • be active as a listener and listen carefully to what they say
  • explore what they think is happening as a good place to start the conversation
  • answer any questions they may ask, keep your reply simple in language they can understand
  • respond to questions in an open and honest way, being careful not to dismiss any of their questions as silly
How you can respond

You can change your use of words and language to help children understand. When talking about sensitive things with children, you may find it helps to use language they understand. Words that we use as adults may have a different meaning to a child.

When talking about MND with children, it can help to:

  • explain that muscles aren’t working properly, so that children understand why someone is changing and growing weaker
  • talk about things the child will already have noticed

For example, if your leg muscles are affected, explain how this will make it more difficult to walk. If your facial muscles have been affected, explain how it may be difficult to smile, but this does not mean you are angry. It can help if you are as clear as possible.

Call MND by its name rather than saying that a person is generally sick or unwell. Telling a child that their loved one “is not going to get better” can be hard, but they will want to understand what is happening to you and to feel included.

Be honest and supportive
  • answer any questions that a child asks you as truthfully as possible for their age and level of understanding. If you skirt around an issue it may confuse and cause anxiety for the child later on
  • if you don’t know an answer, it is OK say you don’t know
  • encourage children to come back to you if they think of anything else, or if they feel overwhelmed
  • provide information about what to expect, this can help children to be less frightened by the unknown. What will it be like at the MND clinic, or what the breathing machine will look like and how it helps are a couple of examples
  • think about special activities you can do together to make and share memories. Activities might include special outings, recording videos and photos, sharing stories or writing letters
  • explain what is happening as the disease progresses, so the child does not feel isolated
  • allow them to say and do the things they need to as part of their own grieving.

When appropriate, be active and check-in with children frequently to see if there is anything else they would like to talk about.

Be kind to yourself
  • remember it is normal to feel uncomfortable, so if you are struggling, talk with your MND association advisor or MND clinic for guidance regarding where you can get some support in your area
  • children may ask questions that seem to come out of the blue, and then abruptly shift their attention back to a something else, such as playing. It may appear like the child doesn’t understand how serious things are, but this is normal behaviour that allows them time to think through the information.
More information

Read more on CarerHelp's Relationships and children factsheet.

There are a number of options for support available to children and young adults when someone they love has MND. Support includes help, resources and information available through health professionals and MND organisations, as well as online information.

You may want to explore counselling and other support services for children and young people to help with difficult conversations. Encouraging young people to stay connected with their friends, hobbies and other interests in the outside world is important and helps them have a balanced life.

You can get help from others. Family members, teachers, friends and other people who are close to the child or children need to be told what is happening as soon as possible, so they can also offer support if needed. Teachers may be a great source of support, especially in the later stages. You might want to share MND information with teachers, too.

It’s important to constantly keep open lines of communication. The children need to know how they can help and what they need to do but also be given enough freedom to get away and have some fun. How you talk about MND will be different depending upon your own style and your children’s ages and personalities.

The MND Australia ‘Talking with Young People about MND’ information pack is designed for parents to assist them in communicating about MND with their children.  The pack includes age appropriate booklets as well as a booklet for teachers and friends:

  • Talking with young people about MND: A guide for parents
  • Talking about MND for 8 to 12 year olds
  • Talking about MND for teens
  • Talking with young people about MND for schools - is a useful resource to provide to your child’s teachers.
  • Talking about MND for young friends - Children and young adults will likely seek support from their friends and social groups. This booklet for young friends may be useful to help them to understand MND and how to support your child.

They will also likely seek support and information online to help them deal with sadness, worry and other difficult emotions. It is important to help them to seek that information to ensure it is from reputable sources and organisations.

Organisations and specialist services

MND Association MND advisors can provide advice about what is help and support is available to your children and young adults in your area or online.

Community palliative care services support the person with MND and their family. You may receive palliative care at any stage of your journey with MND, it’s about supporting you to live well while managing your MND. It’s not just about care during the last few days of your life. Being referred to a community palliative care service links you in with a range of health professionals including those that can offer guidance and support for the whole family including the children and young adults.

General Practitioners (GP) are a great source of specialist services in your area.
Kids Helpline is Australia’s only free confidential 24/7 online and phone counselling service for young people aged 5 to 25. Call 1800 55 1800 at any time for any reason. Qualified counsellors at Kids Helpline are available via WebChat, phone or email anytime and for any reason. They also provide support for parents and carers.

ReachOut is an online mental health organisation for young people and their parents. ReachOut provides practical support, tools and tips to help young people deal with everyday issues and tough times, and information for parents so they can support their teenagers, too.

The Australian Centre for Grief and Bereavement helps individuals and families who need help after the death of someone close to them. The Centre is based in Victoria and provides a range of bereavement support programs for both children and adults, including face to face, telephone or counselling and support groups. There may be a cost for those accessing support from the Centre outside Victoria. Call 1800 642 066

Hope Loves Company is a US based ALS/MND organisation focused on supporting children and young adults. They have a range of resources available online.

Some other useful resources

The MND Association of England, Wales and Northern Ireland has an excellent suite of MND information tailored for children and young people:

The ALS Association:

Families and ALS: A Guide for Talking with and Supporting Children and Youths by Dr. Melinda S. Kavanaugh PhD, from the University of Wisconsin. The guide has been created primarily for families living with ALS/MND, including parents, grandparents, siblings, and other family members. The goal of the guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS/MND. A key theme throughout this guide is communication—how to do it, maintain it, and include it in everyday life.