A newly established program in the City of Casey has brought father figures of children with rare or undiagnosed conditions together for connection, support, and inclusive fun.
SWAN Cobbers program held its second event on Sunday 22 June, with around 20 attendees.
SWAN refers to Syndromes Without A Name (SWAN) Australia, an organisation that supports families who have a child with an undiagnosed or rare genetic condition.
According to Maya Pinn, the administrative officer of SWAN and the organiser of the SWAN Cobbers program, this new initiative does not just include dads. Instead, it grew out of the existing SWAN program to include all father figures who have kids with undiagnosed or rare gene conditions, like dads, stepdads, grandfathers, and other father figures.
One of the highlights of the day was a cookie-baking activity, using assistive technology, including iClick switches and adapted mixers, so children with mobility challenges could press a button and bake independently.
Ms Pinn said SWAN families often feel excluded from typical parenting spaces, so the new program aims to create a space for father figures to connect with others who truly ‘get it’.
“The dads get to speak to other dads, especially our leadership team, who have more experience, other than older kids. Or my dad, for example, has quite a complex grandchild, so he knows how to adapt different activities,” she said.
“But also talking about things like NDIS and funding and getting along with dads who know how hard it is to just be able to get out and do things with your kids.
“The dads can have a good chat about any problems that are going on or anything they want help with.
“Sometimes it’s just nice to get out of the house and see that someone else is in the same situation as you are. Life is hard, but you make the most of it.”
The event also fostered connections between children and siblings, allowing them to interact with others who share similar experiences.
Ms Pinn emphasised that about 35 per cent of swan children pass away before they turn five.
“Building that connection with the whole family, not just mom, including all father figures, especially during early childhood development, is so important that families build villages and they have connections to other people to feel less lonely,” she said.
The program is supported by the City of Casey’s Dads Matter program. The kick-off event was held in late March this year.
Moving forward, SWAN Cobbers plans to host four to six events a year.
