My son, who I will refer to throughout this article as Steven, has now turned 15. He was formally diagnosed with Fetal Alcohol Spectrum Disorder, (FASD) after a long and exhausting journey. We now have a diagnosis that we can move forward with and learn to understand. The diagnosis helps us and our immediate family, friends and school, support Steven with his likely lifelong care needs, as he matures into a caring and responsible member of society.
I have been a registered nurse for 20 years focusing on the care needs of Adult Nursing. However, FASD was not a topic covered in my nursing education and therefore I was unaware of the presenting symptoms – both physically and neurologically. I am now on a steep learning curve as my son grows and matures into a teenage boy. The challenge is the ‘spectrum’ component within the title of FASD – and the many, varied ways that FASD can present.
Going back to the beginning of our story, we thankfully had a normal pregnancy. Prior to realising she was pregnant there would have been only two or three occasions when my wife would have drunk alcohol. We both worked full-time in busy and demanding jobs and our habit on a Friday night was to enjoy a few wines or beers – but certainly not to excess. Upon realising she was pregnant my wife asked her GP, and also the midwives during our first scans at 12 weeks, if it was okay to drink alcohol and was advised that one or two drinks a week was safe and perfectly acceptable. (This was prior to the current medical guidelines which advise that there is no known safe amount of alcohol consumption during pregnancy.)
Steven was born a healthy happy baby boy weighing in at 4.08kg. However, from the beginning he suffered colic and he wasn’t a good sleeper. He also struggled to breast feed, but continued to thrive and met all of his key milestones.
My wife fell pregnant again, but didn’t drink at all during the second pregnancy as our lifestyle had changed and we now had a demanding 2-year-old in Steven!
Steven entered the local day-care and progressed through to primary school. He remained a happy little boy displaying no apparent physical or learning issues. He enjoyed being outdoors, running around and playing with cars and trucks and was certainly not one for sitting still. Comments were also made about him talking too much in class and not paying attention. However, a subsequent paediatric and OT assessment advised that nothing more was involved than him being a busy, energetic and typical young boy.
However, around Year 6, learning and behavioural Issues started to present. By this stage, my wife had been made aware of FASD through her work and she started to notice traits in our son’s development that indicated he might have FASD. FASD was then, a relatively ‘new’ (or under-recognised) disability – and the knowledge of the doctors and teachers was minimal. On presenting our concerns, the reaction of professionals was that we were overreacting, and Steven’s behaviour was dismissed as typical of a young and excitable boy moving though his developmental years. However, my wife had done more reading and research into FASD and the way it can present, and she pushed to have further assessments done, believing his behaviour was on the FASD spectrum.
Our son’s subsequent developmental milestones were now not being met and were showing concerning results. It was established in extensive testing that Steven has significant disability in the domains of; memory, language and auditory processing disorders – all indicators of being of FASD.
For me as a father looking at his strong, tall child with blue eyes and blond hair (a picture of health) my instinct then was that my child can’t possibly have a disability and that my wife was overreacting. I’d seen a child from a young age who was happy, relatively capable at school and who displayed no physical presentations that I deemed as a disability. My thoughts were supported in talking with our families who confirmed “he’s a boy and this is what they are like”, Indeed my family indicated that I was no different as a child! However, thankfully, my wife would not accept that Steven’s continued development issues were simply those typical of a developing child. His school reports continued to show concerns in his achieving the expected milestones and revealed his continued challenges with learning.
Eventually our son was assessed by a paediatric specialist and diagnosed as having FASD and also ADHD. He was subsequently medicated to support the condition with the premise that this medication would reduce his excitability and distraction and allow him to focus. As Steven has grown into a young man medication compliance presents some challenges for Steven, taking medication highlights that he has a disability – that he is still yet to fully understand or accept. However medication has proven to help his behaviour and we notice less negative school feedback when compliant.
At the age of 15, our son is an amazingly resilient young man. He is caring, compassionate, with a great sense of humour and has a great insight in solving problems.
He is also strongly opinionated, stubborn and a ‘know it all’, but I am sure no different to most boys of his age! He has a passion for engines and motorbikes and hopes to progress into an apprenticeship to become a heavy diesel mechanic.
However, we are learning as he develops that he needs to have just one task given at a time; too many is simply overwhelming – this is part of his processing disorder. Each task given is required to be ‘stepped out’ to be very specific and to include what the end product should look like. He also has short term memory retention, so for any tasks given to him, we need to continually follow up and remind him.
As his father I initially found this frustrating as I believed the need for reminding was simply him being lazy because the task given was regarded as boring and irrelevant. As part of my journey to understanding of FASD, the words that have registered the most in altering my thinking and perception were from my wife. In one of our many discussions about my ongoing frustration about Steven not doing a task she said: “Remember that when talking with him or detailing a task to be completed, that his intellectual development, and therefore his understanding, is at a level of a child four years younger than his actual age.” Of course, this is sometimes a challenge as he is now almost 6ft tall, physically strong and has all the features of a young man. However, his understanding of the world is that of an unfiltered 12-year-old.
As his father I am immensely proud of his continued resilience.
A resilience to get out of bed every day, put on his school uniform and catch a bus to school where he sits all day in classrooms and has little understanding of what is being taught. I believe he recognises that he is different as he sees his peers progress and move forward with understanding, whilst he remains stationary. It is therefore completely understandable that he would want to leave school and work in a field that is interesting to him and one that he understands.
I am immensely proud of my wife – his mother, who has lived and breathed every step of our son’s development journey from his first breath to now when he towers over her. High walls have had to be climbed to get to this stage and this has been achieved through my wife’s continued determination and advocacy for our son and her commitment to develop a depth of knowledge about FASD.
We have made extensive use of the many resources available via the NOFASD website and staff. This has enabled us to position our son into a stream where his future looks positive. NOFASD has enabled us both to be prepared to walk alongside Steven in facing the undoubted challenges that lie ahead. However, had we known about the risks that alcohol poses for a developing baby when we were trying to conceive, we would, of course, have abstained from alcohol for the period leading up to conception and throughout the entire pregnancy. We would have jointly abstained from drinking and enjoyed the gift of pregnancy together – that would be our choice given the dangers we now know.
There needs to be a continued drive to get information into the community about alcohol and the harm it causes during pregnancy.
We all have a part to play in this – including reducing a prevailing community attitude that babies affected by pre-natal alcohol exposure should remain hidden, the disability un-acknowledged or that birth mothers face shame and stigma about this disability.
Drinking alcohol even in the early stages of pregnancy (and before pregnancy recognition) can have a significant impact on brain development. Our son experiences relatively minimal impacts in his daily living at this stage – we have been lucky. Some impacts can result in the need for 24-hour care and lifelong commitment of loving support.
We have a beautiful son, and we will work with him with open communication and provide a continued safe place to express his feelings and support him with his developmental needs as he forges his own journey in life.