On International FASD Day, Sandra Butcher, Chief Executive of The National Organisation for FASD, tells us her story
“I was sitting on the floor with our toddler, stacking blocks and counting. ‘One plus one equals two!’ We had been at it for a while, but that ‘aha’ moment didn’t come. I remember looking up at my husband, who was watching. ‘Something’s not right, he’s not getting it.’
“That was years before our son finally received a diagnosis of Fetal Alcohol Spectrum Disorder. He eventually learned to do addition, but on his own time scale. Those were hard, confusing years. As parents we didn’t understand the sensory issues, why ‘time outs’ didn’t work, the meltdowns, how all this fit with his other health issues.
“Once we understood his brain wiring was affected by alcohol in the womb, we put in place the right supports. After a successful switch to a specialist secondary school, our now 16-year old son is ready to start an inclusive learning programme at college. He’s an awesome kid with music in his soul.
“Every person with FASD is different. All have strengths. Some do well in mainstream schools with support. All can lead positive lives. But understanding the underlying problems and ensuring appropriate support is key to avoiding things spiraling horribly.
“The ninth day of the ninth month – 9th September – is International FASD Day to draw attention to the importance of going alcohol-free for the nine months of pregnancy.
“A new song and video has been pre-released this week to raise the voices of those with FASD. Walk Along With Me was created from lyrics and ideas sent to us by more than 70 people with FASD. This is from the new Me and My FASD website (www.FASD.me) that will go live in October, part of a new project the National Organisation for FASD and the Seashell Trust are launching, funded by the Department of Health. This project focuses on Resources and Training to Support Children and Young People with FASD. In addition to resources, it includes new training for professionals.
“It’s time we heard the voices of those with FASD. ‘It’s like living life on a roller coaster without the harness,’ says Georgia. Andy says, ‘Day to day life can be a struggle and tasks can take longer to do.’ Claire explains, ‘One day I’ll be able to do something and the next day I won’t. It’s frustrating.’ Rachel says, ‘I find it difficult to learn but with help and support I will!’
“Too often they have to fight a system that doesn’t recognise their needs. Nyrene (who is in her forties fighting for a diagnosis) said, ‘FASD is an invisible disability and people don’t understand it.’
“People with FASD want others to see their strengths too. Bailie said, ‘Having FASD is not stopping me from doing the things I love like horse-riding and dance.’ Rossi, who has trained as a make-up artist says, ‘I can see what others can’t and think outside the box creatively.’
As Healthy Child reported, NICE is releasing a new Quality Standard on FASD in January 2021. Yet, people still cling to some old-school ideas. ‘My grandmother was prescribed Guinness by her doctor.’ ‘My mother drank. I turned out okay.’ ‘I’m past the first trimester.’ ‘I don’t want my colleagues to know I’m pregnant, it’s just one round.’
“It’s true that not everyone who drinks in pregnancy will have a child with FASD. And the more you drink the greater the risk. But as Dr Raja Mukherjee, who heads the National FASD Clinic says, ‘The science as it stands does not allow us to work out who is and is not at risk from alcohol in pregnancy. To avoid possible lifelong complications, the safest approach is just to avoid alcohol when pregnant.’
“Jan Griffin, a birth mum to a child with FASD, was advised by a doctor when pregnant to drink to ‘relax’. ‘No mother on the planet would purposefully harm their child. I never meant to hand my son a lifetime of labels. Oh, if I knew then what I know now!’
“National FASD is bringing the ‘no alcohol, no risk’ message to 15-25 year olds across the nation. Our new www.PreventFASD.info website features an award-winning film, RISK, that forces viewers to think differently about ‘just one round.’ We’re running a national competition #WhyRiskIt so young people can share their ideas for how to encourage change.
“Because in a world where we too often can’t control things, FASD is something we can do something about. We can create brighter futures.”
Sandra Butcher is Chief Executive of The National Organisation for FASD.