Children & young adults

It is okay for a child or young adult to see that you are sad. It is okay for them to be upset or to cry. Children and young people should know that it is normal for people to be upset and cry when bad things happen.

You could try explaining that crying helps 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 outlined 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)
• listen carefully to what they say
• to start the conversation, ask them what they think is happening
• answer any questions they ask, keep your reply simple in language they can understand
• respond to questions in an open and honest way
• be careful not to dismiss any of their questions as silly.

How you can respond

Words 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 harder to walk. If your face muscles are affected, explain how it may be hard to smile. Let them know that 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 just sick or unwell. Telling a child that their loved one “is not going to get better” can be hard. However, they will want to understand what is happening to you and to feel included.

Be honest and supportive

• answer any questions a child asks you as truthfully as possible for their age and 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
• give information about what to expect – this can help children feel less frightened by the unknown. Explain what will it be like at the MND clinic, or what a breathing machine looks like and how it helps, are a couple of examples
• think about special activities you can do together to make and share memories, like special outings, recording videos and photos, sharing stories or writing letters and making a memory box
• 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.

Check with children on a regular basis to see if there is anything else they would like to talk about.

Be kind to yourself

• it is normal to feel uncomfortable, so if you are struggling, talk with your MND Association advisor or MND clinic about where to get support
• a child may ask question out of the blue, then lose focus or get distracted and start playing - this is normal behaviour that allows them time to think through the information.

More information

Read more on CarerHelp's Relationships and children factsheet.

Resources and information for children and young adults are available through health professionals and MND organisations, as well as online.

You may want to explore counselling and other support services for children and young people. Counselling can help with difficult conversations. Encourage young people to stay connected with their friends, hobbies and other interests as this helps them have a balanced life.

Tell family members, teachers, and friends 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.

Keep open lines of communication. Children need to know how they can help and what they need to do but they also need 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.

Children will also likely seek support and information online to help them deal with sadness, worry and other difficult emotions. Give them guidance so that they find information from reputable sources and organisations.

Organisations and specialist services

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

MND National Youth Hub operated by MND NSW and provides information, support services and tools for young carers aged 5 to 24 years old. 

Community palliative care services offer guidance and support for the whole family including the children and young adults.

General Practitioners (GP) are a great source for referral to 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. Get in touch with qualified counsellors by calling 1800 55 1800, or online via WebChat. They also give support for parents and carers.

ReachOut gives practical support, tools and tips to help young people deal with everyday issues and tough times, and for parents to support their teenagers.

Grief Australia has support programs and resources for 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

The National Centre for Childhood Grief gives services and support for children and their families after the death of a parent or loved one. The centre is based in Sydney and there is a cost for some services. Call 1300 654 556.

Carers Australia Young Carers Network gives information, and directs young carers to pathways for support.

Hope Loves Company is a US based ALS/MND organisation focused on supporting children and young adults impacted by MND. 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:

• Young people 11 to 18 years
• MND Buddies designed for four to ten year olds

The ALS Association booklet, Families and ALS: A Guide for Talking with and Supporting Children and Youths is designed to help families answer questions from young people and offer support. Communication is a key theme—how to do it, maintain it, and include it in everyday life.