As a mother of young man with FASD my journey has been likened to that of a combat soldier ready for battle at any time. Life is unpredictable and the stress levels of living with a child, teenager, or adult with FASD is severe. Having been a Paediatric Nurse for over 30yrs I have encountered many stressful situations but they pale in comparison to the challenges I face as a parent of a child with FASD. I could write a book called “You are never going to believe this…” about the daily ups and downs I've encountered caring for my son over the last 18yrs.
Now at this point several people reading this article will be forming opinions of my character; she must have been an alcoholic mother; how irresponsible of her to drink when pregnant; well she has only got herself to blame.
People with FASD are often seen as “naughty” or “misbehaving.” They can look and act entirely normal, which leads to very little understanding, funding or support that would allow them to function and succeed in our community.
Because of these ill-informed opinions many families are scared to “come out of the closet” and obtain a diagnosis, get the support they desperately need or talk about their child’s disability for fear of being blamed and shamed. Too many people are quick to judge and think ill of the birth mothers. Very few birth mothers are alcoholics or irresponsible. Very few mothers do not go out to deliberately harm their unborn baby. Simply they are misinformed and not given the correct information around alcohol in pregnancy.
If 50% of pregnancies are not planned, how many women do not know they are pregnant during those vulnerable first 3 months. How many are consuming alcohol on a regular basis? We live in a pro-alcohol society, which I am not against so, please, we need to stop blaming and shaming families who have children affected with FASD.
With my own boy, we adopted him at 2yrs of age and noticed from around 3yrs the challenges with his behaviour, where we thought he might have ADHD. It was at age 6yrs we were told by a Paediatrician that he had the facial features of FASD (only present in 4% of the FASD affected individuals), but it wasn’t until he was 11yrs of age that we got the full assessment on how severely his brain was damaged.
Five things you need to know about Fetal Alcohol Spectrum Disorder:
Fetal Alcohol Spectrum Disorder is an umbrella term describing the range of effects pre-natal alcohol exposure can have on an individual. It is predominantly a “brain-based” disability that affects thousands of people in our community, which is often either misdiagnosed or worse, not diagnosed at all.
There is no cure for FASD. It cannot be fixed but with the right supports, lifelong these individuals can succeed and achieve. We are all part of the solution to raising awareness and preventing FASD in our community but also improving outcomes for affected people and their families.
Currently there is a NZ prevalence in International data where drinking patterns are similar. It estimates that between 5-9% of all live births are likely to be on the FASD spectrum.
FASD individuals are often seen as “naughty” or “misbehaving”. What further complicates this disability is that many of those with the condition look and act entirely normal. This leads to very little understanding, funding or support that would allow them to function and succeed in our community.
According to the Ministry of Health's Taking Action on Fetal Alcohol Spectrum Disorder (FASD) report in 2016, “FASD is likely to be New Zealand’s leading preventable cause of non-genetic intellectual disability.”
Lisa works with Beacon Aotearoa to raise awareness of FASD and Neuro Disability.
FASD awareness day is this Sunday 9 September and you can attend events around the country like this one.