My name is Thea Calzoni. I am the parent and carer of Julian Fleckner. He is a happy young man of 32 with an intellectual disability who lives with his dad and me. He enjoys day programs, art, and dance, and getting out and about in the community.
Julian has an active life but he needs support with his personal care, accessing the community, and tempering his obsession with watching DVDs and YouTube videos.
He needs encouragement to transition from his computer to another activity because his understanding of time is not as finely tuned as it is for people who are more intellectually able.
What helps with transitioning him to new activities is giving him lots of advanced warning and some animated persuasion. Sometimes we’ll use pictures as memory jogs.
He has difficulty with communication; he doesn’t have many words and it’s difficult to know how many words he understands. For instance, he sometimes seems to agree with an idea that he later rejects.
Communication books are a good tool because I can write in them about things Julian has been doing and, from reading my notes, support workers can speak with Julian about his life.
Volunteering for Speakers Bank has given me the confidence to assert my identity as a Carer. I have recently published a memoir – Dancing with the Maternal Bond – about my life lived in tandem with Julian. The story has high stakes, conflict, and passion, from the moment he was born. I wrote it on weekends over seven years, not counting the six-month break when I was being successfully treated for Leukaemia – which is quite another story.
Readers are telling me that the memoir of my life as a Carer ‘rings true’ and they ‘can’t put it down. That makes me very happy.
The book is available from https://www.disabilitycarepeople.com/publications
For more information about Thea please contact Speakers Bank’s Program Coordinator on 03 9314 0988 or speakersbank@annecto.org.au
Watch Thea’s video: