Talking with children and young adults about motor neurone disease (MND) isn’t easy. Often, they realise something is wrong without being told, and without the facts, they may be guided by their imagination and become worried or anxious about things that are not true.
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.
Children and young people need:
Information that is honest and appropriate to their age:
8 - 12 years old: Download this booklet
11 - 18 years old: Head to MND Association's website
There are a number of options for support available to children and young adults when someone they love has MND.
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.