My name is Jade, I’m a twenty-three year old partial DCCer who considers herself a “Bogan by the ocean”, up here in sunny Central Queensland. Quite unlike Jesus, I was born kicking, screaming, and one month premature to two bewildered first-time parents in their late thirties. That first month, from what I have been told, was scary. I was in a humidi-crib for a month with drips and feeding tubes galore. By May, I was fit enough to leave the hospital. I hit all the usual milestones except crawling. I went from bum-scooting to swaggering like Mick Jagger, so I’m told.

Back in 1997 there were no ultrasound tests for DCC and as I showed limited symptoms in school, I was never scanned (until adulthood). As a kid, I was academically rather successful. Socially I struggled yet managed to find a group of friends who also got picked last for team sports and couldn’t tie up skipping ropes into neat little bundles. High school was a breeze. I was always nerdy and P.E. was optional so my only real hurdle was social skills (and the almighty cannonball that is puberty). Slowly but surely, through much trial and error and many, many hours in theatre classes analyzing and deconstructing why people do and say what they do, I developed a robust social life. I was voted “Best friend to everyone” at graduation. An accolade I consider to be the height of my career thus far…

But that might be because adulthood has been my biggest struggle. Not bike riding nor school bullies or algebra but independent living. I moved to Brisbane to study at university as soon as I could (desperate to leave my tiny town) and loved it. But my perfectionism and severely nervous disposition led to being hospitalized in 2015 with severe Anorexia Nervosa. Since then, I have been in and out of psychiatric wards with different anxiety-related mental illnesses and have been prescribed more gnarly drugs LEGALLY than I could have ever experimented with at a music festival.

One disorder I developed is called Conversion Disorder. It can present similarly to a Tourette’s attack; jerky, repetitive movements, grunts or speech, again and again and again. Sometimes this can even look like a seizure (neurologically however, it is very different to actual seizures). This prompted us to push my psychiatrist for an MRI to be certain that everything was alright, biologically, with my noggin. It was!

Kinda…

So, at the age of twenty-one I was diagnosed with partial DCC and have been learning to cope with it ever since. I now know WHY I get so anxious, even after so much therapy. I know what sensory processing issues I have like; bright lights, vibrant colours, certain textures like velvet and loud sounds. I now prioritize meditation or “low stimulus” time, as a cool down from or before a big event. But most importantly? My parents now have an answer as to why their seemingly normal only child went so ballistic when thrust into adulthood. It was NOTHING they did or could have prevented. I have the most loving and supportive parents in the world, and I cannot sing their praises enough. So, to the parents who are raising a kid with a DCC, please know there is some kind of hope. They will not be “normal”, so get rid of all your expectations now but never underestimate the work you’re putting into raising a child with higher needs. They appreciate and love you. Even if they can’t tell you themselves or are currently a sack of hormones and hatred.

I’m now living back in my hometown, single and with my Mum (who acts as my carer I suppose) and our recently adopted Staffy. I work part-time as a commercial cleaner and help pay the mortgage (partly a financial need but mostly to give me a sense of autonomy) and have enough friends to keep my weekends busy. So no, it is not what I pictured life would be like after graduation. It is not what my parents thought their fiercely independent child would be doing. But there is nothing wrong with a simple life lived well. Besides, why do your own laundry when Mum can do it for you?

All the best, Jade