…on disruption

Original art by Blu Art Xinjia.

Where have I been and why have I been neglecting my blog? I dropped a hint last July when this was so new it didn’t have a name. All this unkindness surrounding Prince Harry and Meghan Markle’s interview with Oprah Winfrey has touched a raw nerve.

In excuse for my silence, I’m coming out as a parent of a kid recently diagnosed with Tourette’s Syndrome. The past six months have been a steep learning curve with many disruptions to regular family and work life. We’re still refining a treatment plan and still have a long way to go, but at least we now know our destination and possible ways to get there.

If you happen to already know what it’s like to have mental health issues suddenly present in yourself or someone you love, I don’t need to detail the nature of the changes happening within our family unit; the contagious anxiety and worry, the loss of sleep, the ‘drop everything and run’ urgency of executing a rescue when crisis calls, the breaking through barriers to have uncomfortable conversations, or worse, devising a signal system so the one in crisis doesn’t have to speak in order to ask for help.

And if you are fortunate to NOT have first-hand experience of acute mental health issues, please release yourself from any sort of pop psychology or judgment. People in crisis aren’t seeking attention (usually far from it) and they usually don’t have the capacity ‘think positive’ or ask for what they need – so your compassionate presence of mind is key to reading their experience between the lines. You don’t have to ‘mind your own business’ or ‘wait to be asked’ and you certainly don’t have to get in anyone’s face. A kind and simple, ‘how can I help?’ is powerful, and a willingness to listen without trying to fix anything is more valuable than gold.

Seeking help for an acute mental health crisis is a protracted affair. Considering the urgency, mental health triage is little more than a system of waiting lists. Finding a suitable psychologist, psychiatrist, neurologist, takes months. If your finances are tight, it can take years. This isn’t how things should be. People should be able to self-refer to specialists. They should be able to interview care providers prior to parting with their money. And they should be able to access care more urgently than a cancellation list. We are fortunate that we have the means to pay for professional opinion outright, and seek the refunds later. We are fortunate that a background in maternity advocacy has shown us we can’t sit on our hands and expect to be the focus of someone’s attention just because our turn has come around. Sometimes you have to exploit the system, jam your foot in the door, put your name on multiple waiting lists simultaneously, and be prepared to ask for any assistance you need when you need it and not take ‘No’, ‘Sorry’, or ‘Tomorrow’ for an answer.

Finding the right care providers has been critical not just to our teen’s mental health but to ours as parents as well. I want to apologise to all my friends whose kids have special needs. I always wanted to be of service but I never truly understood your daily grind. There’s nothing I wouldn’t do for my kids to be whole and healthy and happy. NOTHING. But it’s a recipe for burnout and I’m learning the true meaning of self care.

For those who don’t know, the ‘syndrome’ part of Tourette’s is where the struggle lies. Like an iceberg, there is the visible presentation of physical and verbal tics which, while disruptive, aren’t the main challenge of Tourette’s. Beneath the surface lie the invisible conditions that actually form a family of disorders: OCD, ADHD, anxiety and depression. We’re still on the boat seeking support for our daughter but land is in sight.

Look out, a tsunami!