What it’s like being a mother of child with FASD.
Fetal Alcohol Spectrum Disorder (FASD) the leading non-genetic developmental disability in Australia, caused by drinking alcoholduring pregnancy.
In some cases the symptoms of FASD often go overlooked and undiagnosed – a recent study of almost 1,500 Australian women aged 18-44 years found that more than half (51 percent) of women surveyed were not aware that alcohol use could cause harm even in the first few weeks after conception – leaving those who have FASD unsupported in school environments and beyond.
“The effects of this condition are life long,” explains Professor Elizabeth Elliott, University of Sydney. “So even though it is often diagnosed in children, as those children grow up, if they have problems with understanding and expressing their feelings, if they’ve got poor impulse control, they often drop our of school, they often get in trouble with the legal system, and they often have poor self esteem. Many of them cannot live and work independantly, so it’s really important to understand that this is a life-long problem.”
To find out more, we spoke to three mothers who have experienced FASD, and hear their stories.
Ange
– Mother of a child with FASD
I was physically dependent upon alcohol when I fell pregnant after self-medicating on, amongst other trauma, the devastating news that without IVF, I could not conceive. That sad irony is not lost on me. When my son received his official diagnosis of FASD (he was first diagnosed with autism), it solidified what deep down, I already knew and that was very confronting. The guilt was crippling however it was also a moment of great relief as the early interventions and accommodations my son desperately needed became available to him. He had his correct diagnosis.
My child’s symptoms include difficulty with emotional regulation, extreme anxiety, speech issues, sensory issues and both academic and social challenges at school. Especially in mathematics and handwriting. These symptoms present as behaviours such as yelling, throwing things and shutting down. He has an NDIS plan which allows for him to attend speech therapy, occupational therapy and psychology. This has helped him immeasurably. His therapists also communicate with his school and they have been wonderful with implementing any and all accommodations suggested to ensure school is a positive place. Fidget and sensory items help with anxiety.
I have also learned and adapted to my son’s world rather than expecting him to fit our rigid world. He simply cannot do that. Rather than driving to team sports, we are driving to therapy appointments but we still make it a lot of fun.
My advice is for women wanting to conceive and given that around one third of pregnancies are unplanned, any women where potentially falling pregnant is a possibility. FASD is an irreversible lifelong brain based disability which is invisible from the outside in the vast majority of children and it’s 100% preventable. It can and does occur at low level alcohol consumption and when women have stopped drinking the second they found out they were pregnant. There is now no doubt that there is no safe limit of alcohol consumption at any time during pregnancy. Alcohol is a teratogen and crosses the placenta causing damage to the unborn baby’s brain and organ development. Prevention is key however I would be remiss not to address any women who may already have consumed alcohol during pregnancy and are worried about their child. The correct diagnosis is always the best diagnosis and women need not feel shame or blame in disclosing alcohol use during their pregnancy in order to get help for their children. Any women who are physically dependant on alcohol also need not feel shame in disclosing this as there is help and support available. My advice for health professionals, please show understanding and compassion. No mother intentionally sets out to harm her unborn child.
Sophie
– Mother of a child with FASD
Finding out my child had FASD happened in two stages for me. I had worked with teenagers and families impacted by FASD whilst managing programs for at risk families. I held a belief, like many people, that FASD only occurred when there were high levels of alcohol use in pregnancy. When I read information which outlined the harms of alcohol to a developing fetus even before a woman has missed a period, and how low-level drinking can cause FASD, this information shocked me. Our son exhibited many of the behavioural symptoms and challenges consistent with FASD however, I had never considered this and my alcohol consumption in pregnancy had never been questioned by the multitude of health and clinical professions we spoke with over the years. I did more research on the NOFASD Australia website and after more than a decade of searching for answers to help support our son and nearly 2 years of seeking a diagnosis for FASD, receiving the ultimate diagnosis was actually a relief. Having a diagnosis explained why our son who would present as mature with many strengths in some areas but could then present with such immaturity in other settings with such challenges and gaps in his learning. The diagnosis validated my reasons for extra vigilance and advocacy for my son in external environments when the perspective of others was that he was misbehaving or not being parented firmly enough. Having a FASD diagnosis enabled us to see our son differently, to parent differently, to admire our son for his resilience, tenacity, perseverance, and motivation to continue trying, despite the daily hurdles and challenges he faced.
Whilst we didn’t know until many years later that our son had FASD, we always had structure and routine in our household which are two key support strategies for children with FASD and this reduced many of the issues that can occur. Many children, adolescents, and adults with FASD can struggle with emotional regulation, even to what can seem like minor events, as behavioural symptoms, this can present as significant verbal or physical responses or outbursts. Allowing extra time at home when needing a response or before transitioning to a new task helps to reduce anxiety, frustration and allows for more thinking and processing time. An example in our house would be allowing extra time to get ready for school in the morning or giving gentle reminders about the time and how many minutes are left before electronic devices need to be switched off and surrendered before bed. The biggest difference a FASD diagnosis has made for us as a family has been shifting our focus from trying to empower our son to achieve tasks and goals for his chronological age and changing our expectations to correspond with his developmental, social, and emotional age. Realising that he needs extra scaffolding and support consistently to enable him to achieve tasks which we may already expect our younger neurotypical child to complete. When you look through a FASD-lens, it helps you to understand that your child’s responses aren’t always intentional, it can often be because they can’t do something, rather than they won’t do something. This creates a huge psychological shift from a place of frustration and annoyance to one of empathy, support and understanding.
Our son doesn’t like to be singled out or appear to others that he needs extra support, and we therefore have systems in our household to help everyone in the family to remember daily, weekly, and monthly tasks such as calendars, charts, and reminders. We often communicate with our son by text message when we need to give him gradual reminders, rather than giving more frequent verbal instructions, this is particularly helpful when we transition to bedtime.
If you are not using contraception and are sexually active, don’t drink alcohol. If you are planning to start trying for a baby, start reducing your alcohol intake at least a few months before. My husband and I are both educated professionals, we had been married for 4 years when we decided to start trying for a baby. I had been taking the contraceptive pill for many years and believed it would take many months and attempts to fall pregnant. We both had good nutrition, exercised regularly and I had started taking pregnancy supplements several months before. We knew it wasn’t safe to drink high volumes of alcohol in pregnancy and after conceiving on our first occasion of unprotected sex, I found out I was pregnant at 6 and a half weeks. I stopped drinking alcohol socially and I would consume 100 mls of wine (1 unit of alcohol) on a Friday night at home. However, what we didn’t know, was that a developing fetus is highly sensitive to alcohol exposure from the early stages of pregnancy, before a pregnancy is confirmed. I was 30 years old when I fell pregnant, a typical Friday night involved a meal and drinks with friends after a busy week at work. Our son was exposed to around 5 or 6 units, on approximately 3 occasions before my pregnancy was confirmed. I wasn’t alcohol dependent, or using other substances, I wasn’t dealing with trauma or the impacts of poverty, we conceived our beautiful boy, just as we had hoped we would. However, our son has a lifelong brain injury, caused by alcohol exposure in the womb, alcohol is a poison for a developing baby, I only wish someone had told me this before we started trying for a baby. When you start trying, stop drinking!
Cheryl Dedman
– Mother of a child with FASD and Chair of the NOFASD organisation
It was devastating but a relief at the same time when I found out my child had FASD. My first exposure to what FASD is, came from a program on SBS about seven years ago and the first five minutes was so overwhelming, I had to stop watching. A few days later, once I had time to digest some of the impacts that were discussed, I took a deep breath and watched the remainder of the program. So, when we eventually received a diagnosis for our son, it was actually a relief. At last, we had answers to the multitude of behaviours that were continually spiralling out of control, despite our continual use of recommended interventions.
I home educate our son, because the system would have disempowered his potential, not being designed for his needs and creative way of learning. This has enabled me to provide interventions throughout the entire day, as well as designing his curriculum around his strengths and interests. Regulation is key though and from the time he wakes to going to bed, our day is planned to provide regulatory activities to manage the triggers that affect his life. I’m always thinking on the fly, watching for problems and ready to intervene with an activity to regulate. This could be something that is calming or diversional (but not reward based), with the intention of circling back at a later time to talk about whatever the problem was and how we might be able to manage it in the future. It’s important to note that everything is about repetition because it can take a long time for the skills to be learned to manage problem behaviour and even then, the skill may only be learned partly or sometimes not at all.
As the “Every Moment Matters” campaign says, as soon as you start trying to conceive, is the moment to stop drinking alcohol. Further to that advice, if you can give up alcohol as soon as possible before you try to conceive, even up to 3 months before hand, you will give your body a great start for conception. I’d love for women to just enjoy this time in their lives of being alcohol free, knowing that they are preventing the harmful impacts that can result in FASD from alcohol to their developing baby.
What is Fetal Alcohol Spectrum Disorder (FASD)?
“Fetal Alcohol Spectrum Disorder is a brain unjury cause by prenatal exposure to alcohol, and it’s characterised by problems with learning, behaviour and development due to that brain injury. It may also be accompanies by birth defects, including an abnorma face, because alcohol across the placenta can not only damage the brain and nerve system, but it can cause birth defects, disrupt the development of a normal embryo and feotus,” explains Professor Elizabeth Elliott, University of Sydney.
How common is it?
“We don’t have very good data in the general population in Australia, but we think it could be up to 5% based on what we hear overseas. That may sound like a lot, 5 in 100 kids, but we know that over 60% of women in Australia drink alcohol in pregnancy, often before they realise they’re pregnant.”
What are the symptoms?
“Symptoms could include, slow development, problems with speech and language, problems with fine and gross motor skills, problems with IQ and learning, and it can cause problems with social skills and social communication. We also find kids with FASD have really poor impulse control, so they lose their temper very quickly, and have problems with attention and concentration – they’re often hyperactive. Some children even have symptoms consistent with Autism.
“In addition, if there are birth defects, there may be symptoms realted to that: they may grow poorly, and if really badly damaged they may have a small head due to poor growth of the brain.
Unfortunately poeple don’t think of this diagnosis often… so what we would see often is children at seven or eight who have behavioural problems , and when they start dropping behind academically.”
How can it be prevented?
“It’s important to understand why women drink, and more specifically, why they drink during pregnancy. And to understand that women drink for a range of reasons, whether they have current stress, domestic violence or problems at home, or in the case of some of our Aboriginal communities, they tell us that it’s the lasting effects of historic traumas.”
The other issue is just social pressures: we know that alcohol is readiy available and women are incresignly drinking alcohol often at binge levels.
If you or someone you know need support with FASD, you can reach out to the NOFASD helpline and website at 1800 860 613 www.nofasd.org.au.
BY NIKOLINA ILIC
Nikolina is the new web-obsessed Digital Editor at Men’s and Women’s Health, responsible for all things social media and .com. A lover of boxing, she has a mean punch inside and out of the ring. She was previously a Digital Editor at GQ and Vogue magazine.
Retrieved from the Prevention Conversation.
Original article from Women’s Health.
