Here are the stories of three women whose lives have been affected by the disorder.
Sam’s 11-year-old son Stanley has FASD
I didn’t know of the damage I could cause my unborn baby. I drank to stop feeling, I drank because am an alcoholic. I didn’t think, I just drank. If I had stopped drinking without help and support I would have probably committed suicide.
Today I know that Alcoholism is a mental, physical and spiritual disease. One day at a time with the help and support I have around me, I haven’t had to drink for 10 years.
My little baby is a gorgeous 11-year-old boy who struggles with FASD and a world that doesn’t accept or understand his condition.
I can’t change the past, but I can make his future better, by helping to share our story and fighting to open doors for better services and education and acceptance of FASD as, a chronic worldwide epidemic that is 100% preventable.
I wish I had had the information and support given to me about FASD when I was pregnant unfortunately I didn’t.
But I wouldn’t change my child for the world because he is my son and I love him just the way he is.
For Stanley, he finds it difficult at school, particularly with Maths and English.
He really struggles to form and keep friendships and he finds it difficult to read peoples expressions and body language.
He has a strong sense of justice and feels the need to control everything and everyone in order to feel safe and less anxious. Stanley is very literal and will say what is on his mind and does not have the capacity to understand if is offensive or not.
He is highly anxious and has sensory issues to noise, touch and temperature – for example he would wear a T-shirt in winter and a jumper in summer.
When I ask Stanley how FASD affects him, he says he feels frustrated that he can’t do “stuff,” that “people don’t get him” and that he can’t seem to keep friends. He has a fab sense of humour and is good at making things out of scrap.
As Stanley is a good looking boy who looks completely “normal”, his behaviour and reactions to the outside world are “different and defensive” and people can see him as being rude or odd, which is sad and hard to deal with.
I get frustrated at Stanley too, which is not fair.
Marta’s adopted son James has FASD
Our lives immediately changed with the arrival of our second adopted child, James – we were ecstatic and really excited to have finally completed our family.
James was a gorgeous little boy, but by the age of 18 months it was already becoming sadly clear that he had developmental issues.
We experienced the shock of our lives when we were soon told by a consultant geneticist all the issues that James was suffering were due to his birth mother drinking alcohol while pregnant. The worst came when we found out that there was no cure.
Our day-to-day as a family can be very challenging as James struggles with communication and understanding the most simple tasks. He becomes very frustrated and his mood swings are difficult and sometimes aggressive.
James also suffers from hyperactivity and lack of concentration. Whilst he is an extremely loving and affectionate little boy, he will not watch television or play with toys in the same way any other child his age does and he also requires constant supervision.
Going out as a family of four is very difficult – we tend to plan every detail of the day and make sure that there are specific activities which James can participate in.
Sometimes, no matter how hard we prepare, it is not enough to avoid a meltdown as events spiral out of our control, resulting in anger and tears – and having a major impact on family life.
Living with FASD is chaotic and it can turn your family upside down.
Jade, 17, lives with FASD
Living with FASD is a bit like riding in a horse drawn wagon; there are no seatbelts and the road is pretty bumpy.
Life can be very tough for anyone with the condition or their families living with them.
Sometimes bits of the real me shine through the condition, like recently where I have been leading lady in the Panto – so much so that people (including professionals) find it hard to see that there is anything wrong with me.
This is not true, I have irreversible and lifelong brain damage.
I doubt that there is a non-FASD teenager anywhere that is as forgetful, hyper and awkward as I can be at times.
I’m accident prone, I’m fun, I’m inappropriate, I’m impulsive, I can be obsessive and have no trouble in trusting strangers – this sort of behaviour leaves me very vulnerable as my condition is so hidden.
Most of the time I go along quite happily with external support, excelling in English and detesting Maths with a passion.
Sometimes I just wish that FASD would leave me alone to drink shed-loads of black coffee in a dimly lit room and where I can get on with writing my novels.