Sharing with the AusDoCC family helps overcome isolation.

Kerry Faulkner joined the committee in 2015 to help out with publicity and here talks about first meeting WA’s AusDoCC contingent.

Every Tuesday night in winter, my daughter Ella, then aged about 12 pulled on her baggy green shorts and long socks and threw herself into Melville soccer club training, happy to be part of a team.

She never got a game on the weekends and when I asked about the end of season party, the coach said it was last week.

We’d been excluded. Again. My heart broke. Again.

People who have a child with a disability will relate to this story; our brave resilient kids trying desperately to join in and being rejected because of they are different.

It is why meeting the West Australian AusDoCC members for the Christmas party in 2014 was important to us. We were joining a club that seemed inclusive and happy to have us as members.

No one raised an eyebrow about quirky behavior, Ella’s or mine – we all knew what to expect of kids with Agenesis of the Corpus Callosum and accepted and loved them all.

It was fantastic too, to talk to other parents and grandparents about their experiences and how they manage the challenges of raising children with a Disorder of the Corpus Callosum and what they do to make the family happy and well adjusted.

I believe I can learn of lot from them and maybe offer something in return; goodness knows I’ve tried some pretty ‘out there’ therapies to treat difficult behaviour in our time and some have even worked. The cannabis resin however was not one of them.

Agenesis of the Corpus Callosum is a tricky one. It manifests in so many different ways – a child with near complete Agenesis can be high functioning and one with partial Agenesis can be very high needs. What a fickle organ the brain is and as much as I try and understand it, I don’t.

So apart from giving and receiving support and learning from other people experiences, I also hope to learn more about the brain and the research now being undertaken by the Queensland Brain Institute. The paperwork to be part of that research has made it to the top of my ‘to do pile’ and sits completed, ready to post. How about yours?