What it’s like to live with Foetal Alcohol Spectrum Disorder

Most people know you shouldn’t drink while pregnant, but Olivia’s mum did, and she bears the scars of it.

Olivia has Foetal Alcohol Spectrum Disorder (FASD), a condition characterised by impulsive behaviour and learning difficulties.

It can be the result of a child’s birth mother drinking alcohol during pregnancy. FASD is a condition that’s often either undiagnosed, or misdiagnosed as ADHD.

I have three kids, the two youngest are not my birth children. My daughter *Olivia has been with me since she was six months old, and she was diagnosed three years ago with FASD.

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“We knew her mother drank while pregnant.” Picture: iStock

WE ALWAYS SUSPECTED IT

We knew her birth mum drank heavily throughout her pregnancy. She was also a victim of domestic violence and had multiple hospitalisations.

When Olivia came to us, she was a very floppy baby and she slept up to 20 hours a day. When she hit preschool, she became impulsive and at times she was out of control. She’ll lose it and when she does, she has a Tourette’s like response - she swears uncontrollably.

She plays with other kids in our street, and if something has upset or overwhelmed her, we’ll know. I’ll hear her screaming foul language at the top of her lungs. Sometimes when she’s overwhelmed, she’ll also start stripping off her clothes. The shoes come off first, then she starts peeling off all her clothes — which is easier to manage when she’s at home. I can usually convince her to keep her knickers on, but she’d happily run around butt naked.

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Children with FASD can struggle day-to-day. Picture: iStock

SHE HAS A LOT OF SUPPORT

At her school in Adelaide she gets a lot of support. I searched high and low to pick the right school for her and left the initial meeting thinking, “oh great, she’s in!” Then I drove away thinking, “oh my god, what if the kids at school can’t understand — what if they are mean to her?” But my fears were unfounded: she’s made some good friends at school and she is a happy-go-lucky kid most of the time.

When she does get overwhelmed in class, she’ll hide under her desk. One of her classmates will climb under there with her and rub her back to calm her.

She does have cognitive delays … she’s a few years behind with the school work she is doing. For Olivia, the main thing is to focus on important things like learning life skills. Her school and my family know about her FASD but we can’t tell other people. She’s in the Foster Care system and we’re bound by confidentiality. Other people don’t understand, and I can’t explain it to them. I just say she has ‘issues’ and don’t elaborate.

I haven’t explained to Olivia that she has FASD, she doesn’t have the cognitive ability to fully understand. Life will be challenging enough for her.

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Children struggle with change, children with FASD have an even harder time. Picture: iStock

CHANGE IS ALWAYS DIFFICULT FOR OLIVIA

I’ve only ever had a handful of days away from her. I had to go interstate to help a sick relative not long ago, and that was hard.

I sing to her every night at home when she goes to sleep and thankfully I could still do that, technology and Facetime is a wonderful thing. A few weeks before I went, we prepared her and we practised using the technology. She rang me probably 30 times from her bedroom, but I didn’t mind.

I love my girl; she has this amazing sense of style. Olivia loves to dress up and will wear tutus and big boots and occasionally raid my make-up and heels. She’ll definitely be a forerunner in fashion when she grows up. She’s got a big heart too and she always shares her things with others.

IT CAN HAPPEN TO ANY MUM

There’s an incorrect assumption that FASD only happens in Indigenous populations but it can happen to any mum.

My son *Connor, who is four, is in the process of probably being diagnosed with FASD too. His own birth mum didn’t find out she was pregnant until she was eight weeks gone and she’d drunk alcohol socially during that time.

When she discovered she was pregnant she didn’t touch a drop for the rest of her pregnancy. Connor has a global developmental delay and hyperactivity. His paediatrician says he also shows one of the facial markers for FASD. Sometimes there are facial ‘tells’ such as a flat ridge between the nose and upper lip, a thin upper lip, and a child’s eyes can look a little different.

If you’re at a child-bearing age and having unprotected sex, don’t drink: There is no safe amount. We also really need to get rid of the stigma associated with FASD. It makes it hard for women to come forward, to get early intervention and the help their child will need. Just like autism was once not talked about or understood, FASD is the same. We really need to open the door and start having conversations about it.

* Names have been changed.

For more information about foetal Alcohol Spectrum Disorder (FASD) go to www.nofasd.org.au

— Carrol Baker is a freelance writer for Kidspot

This article originally appeared on Kidspot.com.au and was reproduced with permission