Support > Family Carers Information Toolkit
Supporting children and younger members of the family
Children will want to know what's going on. They can be very perceptive, so answer their questions honestly and seek out information to support your conversations.
Every member of the family will respond to the diagnosis of MND differently.
Some people like to know lots of information, others prefer a little bit at a time. There is no right or wrong way, but having some resources handy for when questions arise can be useful, or at least knowing where you can get them can help.
Child friendly resources are available online or in printed booklets.
Me, My Family and MND is designed for children aged 5 - 11. You can view the booklet online and request a copy by emailing nationalyouthhub@mndnsw.org.au.
MND NSW host the national Youth Hub for Young carers which includes online catch ups for young carers and podcasts to listen to.
Little Dreamers support young people aged 4 to 25 who provide care for a family member affected by disability, chronic or mental illness, addiction or frail age. They have a number of programs and services of support and are definitely worth connecting with.
Carers Australia administers the Young carer Network and Young Carer Bursary Program on behalf of the Commonwealth Government to support young carers with education or vocational training.
LUKi & the Lights
LUKi is a joyful robot living his best life when he starts to notice signs that parts of his body are malfunctioning. After a visit to the doctor, LUKi is diagnosed with ALS/MND. Amidst his heart-wrenching challenge, he courageously confronts ALS/MND on his own terms with the support of his friends.
National Youth Hub for Young Carers
A young carer is a person between 5 and 24 years of age who is connected to a person living with motor neurone disease (MND). This may be a friend or family member.
Young carers play a big part in the journey of someone diagnosed with MND, and they need a robust support network. The MND National Youth Hub provides information, useful links and resources for young carers ages 5 to 24 years old to add to their carer toolkits
For further information please contact info@mnd.org.au or call our info line service on (03) 9830 2122.
Experiences
Steve's experience
My kids were aware, they knew I'd been having medical appointments, but I didn't know what to tell them. Finding a resource that could help them understand was so helpful - Steve
Anna's experience
Anna's grandchildren spend lots of time at her house, she has the booklets on hand for when they ask questions or see that something different is happening for her. They have the choice regarding how much they want to ask and know.
