The ninth day of the ninth month is FASD Awareness Day, chosen to remind us all of the importance of staying alcohol-free for the nine months of pregnancy. It’s a day when people stand up with and for those who have FASD – a lifelong brain-based condition that is caused by alcohol exposure in the womb. It’s a day we encourage the powers that be and the general public to address this public health crisis with the seriousness given to other neurodevelopmental disabilities like autism.
It’s a day when we marvel at all that our own son, now 15, has accomplished in his life, the great strides he has made in understanding himself and taking on board strategies that can help him. It’s a day we celebrate his strengths and are thankful that he has been surrounded by professionals, family and friends who have stood with him, with us, as we have come from a place of crisis to a more stable ‘now’. It’s maybe not unrelated that today he had a music mix released – all by his own doing – on Amazon and all the major music streaming platforms. If we are honest, we aren’t even sure how he did this – though we know he’s been working hard at it for weeks, showing us once again that he has vision and abilities that we have yet to fully understand. Magic!
Statistically, here in the UK 6% or more of the population may be affected by FASD but most are undiagnosed and misunderstood. They are in our classrooms, in our workplaces, in our communities, in our families – struggling. If unsupported, it’s likely that on top of the physical, sensory and cognitive challenges they face they are also grappling with secondary issues such as mental health problems, addictions, homelessness, sexual vulnerability and financial insecurity. If FASD is unaddressed and not properly supported, it can become a perfect storm that wreaks havoc, sometimes across generations.
But FASD Day is a day of hope. It’s a day when people with FASD stand with others for change. One initiative is the Red Shoes Rock awareness campaign that spans the globe, encouraging those with FASD to be bold in their self-advocacy, to stand up and be seen. It’s a day when people speak out to encourage more awareness of FASD and the risks of alcohol in pregnancy.
Here in the UK, change is coming in ways big and small. The government is finally responding – a new NICE Quality Standard on FASD will, by September 2020, lay out five areas for improving the quality of care regarding FASD; the Department of Health will be releasing a report soon addressing FASD and for the first time ever it has set aside nearly half a million pounds to fund voluntary and charitable organisations work on FASD. These are baby steps but important, the signs that like a huge ship at sea turning direction, the massive systemic change that is needed is underway. These breakthroughs are happening after decades of dedicated work by pioneers in the field keeping this issue at the forefront – dedicated experts, a handful of MPs, peers and stakeholders. And it’s been fuelled by the collective voices of this community increasingly joining together and insisting that policy makers hear our voices.
In too many of our homes, the changes, however positive, will still take time to translate to the peace and security we want for our loved ones. Our children – big and small – are still facing daunting challenges every day of their lives. It’s heartbreaking to know that they face a world every day that does not respect and honour their courage and effort, to know they do not have access to the tools to help them nor to professionals with appropriate knowledge. Worse are those instances when we hit a brick wall of professional indifference and stigma.
FASD Is often the missing piece of the puzzle when trying to figure out the ‘why’ of behaviours that are confusing and sometimes alarming. FASD can be the reason why a child might have trouble learning or calming, the reason why a young adult might keep melting down or striking out when frustrated or overwhelmed, the reason why a person we love doesn’t follow instructions, lacks impulse control or seems oppositional, the reason why our loved one struggles in school or can’t keep a job or self-harms.
FASD is called a hidden disability because we cannot see the very minute but very real organic brain damage that happened long before they drew their first breath. For someone with FASD, changes in the way their brain wiring developed means they cannot do some things others take for granted, at least not without appropriate and lifelong supports. Little people with FASD grow up into adults with FASD. They all deserve our empathy.
People with FASD have many strengths that can be built upon to create pathways toward success, but this can’t happen if they are constantly berated, punished and made to feel ‘less than’ for things beyond their control.
Someday here in the UK FASD Day will be widely acknowledged. But in the meantime, some of the biggest changes are under our own control. If you know someone who might have been exposed to alcohol in the womb and who is struggling, give them a break. Love them. Don’t blame them for actions that you find confusing. Learn about the ‘neurobehavioral’ model of support, educate yourself. Join local and online support networks.
Though it may be hard, as it remains a postcode lottery, help them seek diagnosis and support. Fight for an Education, Health and Care Plan. Fight for thorough assessments for speech and language (including receptive language), for occupational therapy/sensory integration, for cognitive challenges with executive functioning and adaptive planning, for the benefits and supported employment they deserve. Appeal, appeal, appeal. Make some noise. Contact the papers, radio stations, MPs, Clinical Commissioning Groups. Educate your family, friends schools, communities. Open up and let others know what you are going through. Raise awareness of the risks of alcohol in pregnancy. Be bold. Wear red shoes if that reminds you that we are all part of a much bigger picture.
“The road is made by walking it.” Together we are making changes – led by people with FASD who show us what they need and together with an amazing army of people from many walks of life and from many backgrounds and skills sets.
Change is coming.
Of course, for those who live it, every day is FASD Day.
But on this 9th day of the 9th month, as we are rocking in our red shoes to our son’s newly released track (!), we send you greetings and solidarity. From our house to yours – we share with you our hope for brighter tomorrows. With your help and working together, we will get there.