The brutal truth about living with Foetal Alcohol Syndrome

Photo: Shutterstock
Photo: Shutterstock 

OPINION: Well, the last few days have been a bumpy ride, to say the least. It's been a ride that had me pondering a lot on one aspect that has a massive impact on my family's life: Foetal Alcohol Spectrum Disorder (FASD) and foetal alcohol syndrome (FAS).

FASD is an umbrella term describing the range of physical, cognitive, behavioural and neurodevelopmental disabilities that can result from alcohol exposure during pregnancy, the most sever of which is fetal alcohol syndrome.

We have two children who have been diagnosed with FASD and one with FAS. All these words explain a small amount of what FASD and FAS is, but they don't explain the impact they have or what they mean for us.

All three of my affected children are adopted, but they are full siblings so they have the same birth mother and father. I was aware she had drunk during the pregnancy with the oldest child, that was one reason why I gained custody of him. I thought she would be watched more closely with the subsequent pregnancies, but she quite obviously wasn't.

They were all diagnosed at different ages, and also have a number of other diagnosis that have trickled in over time. It has always been obvious from the get go that these children weren't "normal". 

I thought I'd get deep and personal to lay out what it actually means in real life and for our family. I'm doing this so you might be able to pass it on to someone who tells a pregnant lady, "it's only one drink, one can't hurt," and encourage them to wait those short nine months out of their life rather than risk it.

In our family, it looks like delayed development, like frustration and sadness at not being able to do the same as those the same age. Their brains and mouths don't connect quite right and there are words that want to be said, but can't, and they then get frustrated at being unable to communicate what is on the inside.

It's a struggle to learn, struggle to communicate and struggle to control emotions. It looks like outbursts of hurt, anger and just pure rage.

FASD and FAS aren't recognised as official disabilities by the Ministry of Health in New Zealand, but luckily for my kids (sarcasm), they're also blessed with a bunch of other diagnosis.

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We receive comments such as, "if you hadn't told me, I wouldn't have known there was anything wrong," and "but they look normal". These make you feel like people don't believe you and think you're making it up.

Their public personas are very, very different to the ones at home when their guards come down, which means very few people ever see just how bad it gets. People often think I'm exaggerating, but trust me, I'm not. I often don't tell people the worst because I know they're unlikely to believe me.

It's about being called expletives multiple times a day, and being bitten, punched and kicked when life doesn't go their way, or they're told no.

We watch as the house we worked hard to buy as a young, newly married couple, slowly gets more and more destroyed as their rages explode and cause damage to whoever or whatever is nearest. We're never able to have anything special or nice because nothing is off limits to their destruction of constant touching.

We also don't want to go out for fear of them having a meltdown, and our social circles are ever-narrowing. We've become paranoid about which friends will be the next one to displease them and get sworn at. We're in constant anxiety over never knowing if it will be a good day or a bad day.

There's also jealousy when friends' school-aged children are reading and writing with ease, and our 10-year-old struggles to read a book labelled as entry level.

It has resulted in our children struggling to make and keep friends, or simply be excluded. FASD and FAS looks like frustration as someone else's choices and the consequences they have had.

It's being told you should give up your child and that getting one of them out of the house permanently will be a magic fix all.

There are times when my husband comes home to yelling and grumpy attitudes, and is dumped on about the awful day that has just occurred. Other times we hide in the toilet with ice cream just to get a break, or take ages in the supermarket just to stay out of the house for that bit longer.

It's about loneliness, judgement, and constantly feeling like you're failing and the immense love you have for all of the kids just isn't enough.

It looks like us.

My advise to expectant mothers is just don't drink. If it says on the can/bottle/box that it's not safe for consumption while pregnant just don't risk it. It's not worth it.

So please, think about this before you or anyone you know who is pregnant picks up just one drink.

It is an everyday battle to survive.

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