My bedroom is full of novels, but most of them are left unfinished. I love to read, but I can never get past the first chapter. I first noticed this as a child. No matter how hard I tried, the plot always seemed to get muddled in my head. I couldn’t remember who was who, and found myself going back to the front to start again. At every family celebration, I always made a book – as did my brothers – but unlike them I never expected to finish it. I just opened it and did what I read. I realized that I was different – not just in that way, but in many small ways. There was my clumsiness. Say it, I fell for it. I was always the kid covered in bruises from hitting a coffee table or falling down the stairs. My foster parents, Maryelen and Billy, even had a name for it – The Paula Syndrome. Little did we know that I was actually affected by a little-known condition called Fetal Alcohol Spectrum Disorder (FASD), caused by my mother’s drinking during her pregnancy with me. I was taken into foster care at 18 months old because my birth mother was unable to care for me and my earliest memories are happy ones. I grew up calling Maryelen and Billy “Mom” and “Dad” and it was the best thing that ever happened to me. But mom says she remembers me missing my milestones from the first and she felt something was wrong. My coordination was so bad I couldn’t even catch a ball and I broke my wrist twice at age five after falling over my feet. Then there was my behavior around other kids – I had a really hard time making friends. All the other kids seemed much more confident and self-assured. I was easily overwhelmed, even by positive things. On Christmas mornings, I struggled to open my presents because there were too many to take in at once. Along with me and Taylor, Mom became an FASD specialist (Image: Paula McPhail) Around that time, when I was eight, my parents took in another foster child – a four-month-old baby named Taylor. Taylor had to be weaned off his mother’s breast milk, which had drug and alcohol in it, and his medical notes questioned FASD. It wasn’t until he was three and going through the adoption process that he was officially diagnosed and our family adopted him. As I got to know my new brother, I noticed so many similarities between us. We were both anxious about the same things and we both faced the same difficulties with the way our minds worked. Sometimes all it took to calm us down was a good hug. We had a rug in the living room called a “cuddle rug” and after school we would all pile on it. Mom and Dad flipped over 50 kids and had six kids of their own – three biological and three like me and Taylor – so there was always someone who wanted a hug. When I got to high school, the differences between me and my peers became more and more apparent. I struggled with the nuances of conversation and often “caught” jokes 10 minutes after they were told, causing me to laugh out loud when everyone else had moved on. My favorite subject was home economics, but during a cake-making session, I found it impossible to coordinate my movements to roll the mixture into a ball. The next day I didn’t want to go to school because I knew the other girls would make fantastic 3D cakes and I wouldn’t make it. By the time I was 14, I was starting to fight with mom because I was always coming home 20 minutes late. He didn’t understand that I had trouble telling the time. When I was 17, I asked mum and dad to officially adopt me (Image: Paula McPhail) When I told her I thought I had the same thing as Taylor – which was about five years after his diagnosis – she was incredibly supportive and agreed to push for me to get tested for FASD. I didn’t know much about my birth, but I did know that she had been drinking alcohol during her pregnancy because it had gotten me into rehab. My parents had asked clinicians to screen for FASD before, but it wasn’t until I started pushing and asking for it myself that the diagnostic process began. The test lasted two years and everything was checked – I had blood tests and psychological tests. they tested my memory, coordination and more. I was 16 when I was finally diagnosed with FASD and it made me feel so much better. For years, I thought I must be a bit stupid, but then I realized it wasn’t my fault – it’s just how my brain works. There are nine parts of a developing fetus’s brain that can be affected by alcohol intake during pregnancy, and six parts of my brain were damaged. Suddenly the “Paula Syndrome” made perfect sense to me. I don’t blame my birth mother because I know she had her own problems. I was just happy to have a diagnosis to help me understand myself. When I was 17, I asked my mom and dad to officially adopt me. They always made me feel loved and wanted, but to me that piece of paper felt very important. I wanted it to be official and of course they were excited – they always wanted to adopt me. Along with me and Taylor, Mom became an expert in dealing with FASD. After my diagnosis, we came up with strategies to help me cope with certain aspects of life and we still use them today. For example, mom sets reminders on my phone to prompt me to do things like brush my teeth or be ready to come home at a certain time. Part of my role is to support children and young people with FASD (Image: Paula McPhail) In 2019 Mum and I set up our own charity called Oshays to raise awareness of FASD and support families dealing with it. We named it Oshay after an octopus character Taylor, now 14, created for a school project. Oshay the octopus was invited to Donny the dolphin’s party, but he was worried that his tentacles would get stuck on the slide, so his friends lent him eight socks so he could enjoy the fun too. It’s about the beauty of being different. Part of my role is to advocate for children and young people with FASD. A surprising number of children in hospital in the UK are believed to have FASD – although many are undiagnosed or misdiagnosed. It also affects birth families because there really is no safe amount of alcohol to consume during a pregnancy. Some families live with FASD because the pregnancy was a surprise. If a woman does not realize she is pregnant in the early months and drinks even moderate amounts of alcohol, she could unwittingly affect her baby.
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There is no responsibility and no shame – we just want to reach out and help people. September is FASD Awareness Month, but so many people haven’t even heard of it. When I meet new people and explain that I’m affected by Fetal Alcohol Spectrum Disorder, they say “oh right” and I know they have no idea what I’m talking about. I’m still as clumsy as ever, and I’ll probably never get to the end of a novel, but now I’m not just surviving with FASD—I’m thriving. As she told Jade Beecroft with the help of her mum Paula For more information on the Oshays’ work, visit their website here. Do you have a story you’d like to share? Get in touch by emailing [email protected] Share your views in the comments below. MORE: From bubbly alternatives to gin, the best low- or no-alcohol drinks of 2022 MORE : When I cut my alcoholic mom out of my life, I had no other family MORE: I was told to take aspirin during my pregnancy to prevent a serious condition – but the pharmacy refused to serve me
