Red shoes and conversing about FASD

Photo: Nikki South.

It was a heartbreaking noise.

This tiny bundle, not even a week old, screaming a frantic, high-pitched wail of pain and panic. And there was nothing any of us could do.

Fast-forward 13 years and the screaming has thankfully subsided, but life will always be a bit harder for my teenage brother because he will live his entire life – from birth to death – with Fetal Alcohol Spectrum Disorder.

I’d love for you to meet him, but life is hard enough being 13 and at high school. He is just learning that he does things differently from his classmates, and mentioning him by name could make things unnecessarily difficult for the kid.

Let’s just say he is full of character, cheeky, and if I’m honest, sometimes difficult to get along with.

But I love him unconditionally and can’t imagine life without him.

Simply put, FASD is a diagnostic term for a disorder developed in the womb as a result of prenatal alcohol exposure. People living with FASD can experience complex physical, behavioural, learning and intellectual difficulties that will last their lifetime.

And as with people, the effects of FASD are diverse and depend on when and how much alcohol was consumed during the brain’s development.

This isn’t to say that people living with FASD can’t live full, happy lives.

And this month, Red Shoes Rock month, is all about starting a conversation around FASD and raising awareness. I dug out my old red Converse shoes and have embarked on letting them do the talking throughout September.

But because red shoes aren’t exactly uncommon, I’ve also had a friend make up a pin that says:

‘Ask me about my red shoes!’  to try and start up a conversation.

Health promotion advisor and FASD project coordinator for Alcohol Healthwatch Christine Rogan says one of the most important things for people to understand about FASD is that it is a form of brain damage, and is not something that people are able to grow out of. People see the behaviour, but the behaviour is only a symptom. It’s a hidden disability, and it isn’t just a passing phase.

“It’s about brain, not blame.”

We knew about my brother’s problems, and wanted him even before he was born.

It was originally set up as a temporary fostering situation for an unborn child that would struggle with life, but the moment Mum laid eyes on him she knew this wasn’t just for a week, or a month – this would be forever.

His birth mother fought with her own demons – from mental health disorders left unaided to drugs and alcohol – so when my parents heard this unborn baby would need a home and love, they couldn’t turn it down.

So we drove home with him at just a week old, and the wail and scream continued for weeks.

Why? Because what his birth mother had become addicted to, he had in utero also.

Watching a tiny, innocent infant withdraw from a drug and alcohol addiction is wretched.

I remember watching Mum and Dad bundling him tight, trying to comfort this screaming child, born into a world of addiction and confusion.

The safest way to avoid this and FASD as a whole is to forego alcohol for the whole duration of the pregnancy.

FASD is a preventable condition and it’s important that as a society we change the way we view alcohol in order to try and combat FASD.

“Early brain damage is more likely to be permanent and alcohol is the heavy hitter when it comes to changes in brain structure and function,” says Christine.

“We have an intoxicant-heavy society.

“We accept binge drinking as normal and where that occurs in the general population – not to mention those that have a vulnerability – we will always have FASD.

“That’s the reality.”

But for some people, that’s not easy. For people struggling with addiction or vulnerability themselves, the idea of giving up alcohol for nine months could sound impossible, but Christine says it’s up to society as a whole to help combat this condition.

“We have a liberal attitude to alcohol. “I always say FASD doesn’t just start in the womb, it starts in society.”

Christine says there could be as many as 3000 children born each year with FASD in New Zealand, but exact numbers are hard to come by due to misdiagnosis and lack of research.

My brother’s situation was slightly different – in addition to coming off the alcohol, his system was also suffering withdrawals from hard drugs such as methamphetamine. But that doesn’t change the fact that FASD is something he will have to do his best to adapt to, and it’s something society can help with.

“I think one of the most frustrating thing about this disability is not the disability itself but everybody else’s interpretation of it, and people struggle to know what to do or say,” says Christine.

For me, it’s only a month of wearing scuffed and scruffy red Chuck Taylors.

For my brother and thousands of other Kiwis, it’s a lifetime of learning how to live a happy life with FASD.

FASD Awareness Day is on September 9.

For more information visit: www.fasd-can.org.nz or: www.fasd.actionpoint.org.nz

For official prevention information visit: www.alcohol.org.nz/alcohol-its-effects/alcohol-pregnancy