This special needs parenting life can sometimes feel lonely, but we can assure you that there are people out there who ‘get it’. Here’s a quick overview of just a few of the groups and gatherings (real world and online) to help you build bonds and support networks for you and your child.
SYNDROMES WITHOUT A NAME
SWAN provide information and support to families caring for a child with an undiagnosed or rare genetic condition. They have a closed Facebook group you can join after filling out a membership form on their website. They also hold awareness/family fun day gatherings, morning tea meet-ups and other social events in Victoria and Queensland.
swanaus.org.au | 0404 280 441
Jack’s Butterflies is another organisation offering support to families of children with a life-limiting rare disease. Recently launched in Queensland, they also extend their services to those families who have sadly lost their child who had a rare disease. Services will include ‘Jack’s Club’ support groups as well as Butterfly Club – youth programs for all children in the community – regardless of their association with rare disease.
As well as traditional support programs, the Benevolent Society has an active program of events in NSW, ACT, QLD & SA, including supported playgroups, family fun days, workshops and talks.
LUCKY MAMA is a new initiative and is about connecting and empowering mamas around Australia who are lucky to mother a child with a diagnosis, but aren’t defined by it. Currently Sydney based they run retreats and mama meet up nights out to help facilitate meaningful connections between special needs mums.
Carer support programs are available in each state via Carers Australia, please check out the relevant website for your state – their websites can be found here
PLAYGROUP AUSTRALIA – PLAYCONNECT & PLAY TOGETHER
PlayConnect Playgroups are designed for families of children aged 0-6 years who have unique needs associated with having an Autism Spectrum Disorder or autism- like characteristics in communication, behaviour or social skills. Play Together is a two-year project aimed at promoting inclusivity and connection for people with disability to community playgroups.
THE TREEHOUSE, GEELONG
A non-profit group run by families living with autism for families living with autism. With the support of the YMCA Geelong, The Treehouse was established in 2011 by parents wanting to acknowledge and act upon the need for a local ‘whole family’ friendship and support network.
They offer support groups, social groups for all age ranges (kids & adults), family fun days and much more.
MyTime groups are a place to socialise, to discuss, to get information, and to support and be supported by other carers. Play helpers keep members’ preschool- age children engaged with. MyTime facilitators make sure group discussion is open and inclusive, help members choose what they would like to discuss in their groups, and can also provide reliable resources and help organise speakers and activities. Find your local group at – www.mytime.net.au/groups
Find them on Facebook:
THE MIRACLE PROJECT – MIRACLE MAMAS
An online community formed and run by Natalie Roberts Mazzeo. Natalie has created a safe online space for special needs mothers away from the external noise to connect with others who are travelling along a very similar motherhood journey. The group overview states – Some days we just need an extra boost, a vent, a cry, a laugh and here is your support crew. www.facebook.com/groups/626701920863733/
These aren’t really social groups, but if you need support and answers from people who have walked the NDIS path before you then these two Facebook groups could help. Both groups are highly active with over thousands of members and questions being asked and answered.
Also on Facebook look for:
Special Needs Kids Australia – @specialneedskidsnsw
Cerebral Palsy Parents Australia – @Cpparentsaustralia/
T21 Mum Australia Network – @t21mum/
Autism Parents Australia – @autismparentsaustralia
Down Syndrome Victoria Parents – @Downsyndromevic
Fragile X Association of Australia Group – @fxaaust