In my first blog a year ago, I talked about the challenge of getting a FASD diagnosis for our son, despite many years of assessments looking for answers. We didn’t give up and eventually a diagnosis was given.
The diagnosis was initially a shock for me, but one that became a relief. A relief that we now knew the reasons for Steven’s behaviours and armed with the right information, we could look to the future with the right supports in place. I learnt to adjust my thinking and use different approaches when communicating with Steven and when responding to the behavioural symptoms he displayed.
Steven started Year 11 this year and the expectations of his behaviour, maturity and academic ability all increased. As the expectations grew and more load was added, the emails sent to us from his school about his ‘immature behaviour’, ‘lack of engagement’ and ‘distracting of others’ increased. Despite still getting up for school on time every day, it was becoming more and more obvious that his attitude towards school was declining and it was now time for my wife and I to put wheels in motion for the alternative education we knew would likely be a reality for him prior to Year 12.
The thought of Steven leaving school filled us with apprehension. Growing up, our parents placed a lot of emphasis on academic achievement staying at school and getting ‘good grades’. This was reinforced to each of us as a very important foundation for our future. However, we now recognised that an academic road was not going to be the best one for Steven if we were going to support his strengths.
After accepting that Steven was likely to leave school, I became even more proud of him. Proud of the level of resilience he has, his ability to sit in a classroom, continuously being told he wasn’t trying, didn’t listen, watching his peers academically progress and wondering why he wasn’t. I can’t imagine what that would be like – and in that thought I came to the realisation of how much more resilient he is than I am. Steven had a daily fight to navigate his world, often tired and frustrated, but always continuing to ‘show up’, as long as he could still pursue the things that he enjoyed outside of school.
At 16, he feels that he should be treated like an independent adult when it comes to decision making, and when the decisions are straight forward, he does make some good choices.However, if there are external influences such as peers, time pressures, multiple decisions required or the need for more complex thinking, his ability to make good choices is significantly impaired. In recent times, this has involved a visit from the police and many conversations at home to help him reinforce the concept of doing the right thing. Knowing the right thing to do and actually ‘doing’ the right thing involve different skills and skill sets. These demands can often be difficult for someone with FASD and Steven is no exception.
Our primary role is to provide him with the assurance of a loving and supportive net should he fall and a guiding support for his future finances, social and romantic relationships. Steven struggles with impulse control, particularly when it involves spending money on the things he enjoys in life – for him, his motorbike.
Over the last 12 months we have moved forward considerably in Steven’s journey. Steven now 16, has grown physically to be 183cm (6 ft) tall, slightly shorter than me, but standing much taller than his mother. He has broadened in his stature and his long hair continues to grow longer than I might like, but it’s part of his identity.
Steven has now left his weekend gardening job. His employer at the time seemed genuinely sad to see him go. In his final goodbye he praised Steven for his reliability, humour, attitude and commitment. We personally thanked Steven’s employer for the support and patience he had shown Steven. He didn’t know about his FASD diagnosis, but we’d told him that instructions needed to be given one at a time and that these may need to be repeated many times before Steven was able to carry out tasks without supervision. Because he had the tasks demonstrated to him several times, walking him through the task in small manageable steps, Steven was able to learn well with his employer.
It’s amazing what a difference it makes when accommodations are put in place. For example, for a task that requires for example 10 steps to complete, Steven would only be able to retain a maximum of around 3 of those steps at a time. If all 10 steps were given to him in one go it would overwhelm him and as a result, he may walk away from the task, do a part of it – or not attempt it at all. This would not be through a lack of ability to complete it, but because he would need to have the task scaffolded to focus on one or two parts at a time. I have learnt that asking Steven to do a task when either he or I are not in the right head space, only ends in frustration and arguments. However, it’s been critical for us to build layers of confidence and trust. It is also important to celebrate his achievements and build into him the need to communicate and be open to his feelings. It’s important to recognise that FASD-affected individuals are more prone to depression and sadly also suicidal thoughts and actions. Steven has anxiety, but manages this well and we are fortunate that he hasn’t experienced depression in his life to date. We do what we can to provide the necessary scaffolding, accommodations and understanding at home and with other people with whom he engages.
Steven has been successful in obtaining an apprenticeship as a boilermaker. I am immensely proud of him as he works long days, requiring him to be up early, which he manages himself. He also volunteers himself for additional overtime when the opportunity arises. He has successfully passed his 3-month probation. He comes home smelling of diesel, covered in oil with a smile and open to telling us all about his day, often ending in a very inappropriate unfiltered joke from the workshop!
His employer wasn’t aware of his FASD diagnosis, until he had been with the organisation for 6 weeks. They knew of his ADHD and his auditory processing difficulties, something that my wife and I thought was important for the safety of Steven and the wider workforce in a workshop environment. We wanted Steven to be judged on his abilities before we shared more information with the employer. Due to the lack of understanding about FASD, we had real concerns that if the employer knew of his diagnosis before Steven started, assumptions would be made and he may not have been accepted for who he is – a hardworking, reliable and determined young man who needs more support in some areas than others.
We subsequently decided to advise his employer of his FASD diagnosis to allow them to put the provisions in place to accommodate his learning requirements and to ensure that if he wasn’t making the progress they expected from a new employee after 6 weeks, that they understood why this was the case and that he may take longer to fully understand. We continue to instil in Steven the need to clarify and ask questions if unsure, as this is a life skill that he will need to develop through his life. Steven is now 5 months into the apprenticeship and I will provide a further update on his progress in my next blog.
Certain challenges remain, however. The stories and jokes he tells often revolve around sex, gender, race and religion. He is often oblivious to the content being inappropriate and sometimes crude, but then it appears the ‘neuro-typical adults’ he is working with give no heed to this either! We do our best at home to reiterate the appropriate language, understanding and historical context around some of the stories he tells. Steven is a rigid thinker and once he has ‘proof’ of a situation, it is hard for him to accept an alternative perspective, we use the ‘stories’ he hears at work as learning opportunities and to help to open his mind in a fairly light-hearted manner.
Steven remains self-focused when driven to achieve a goal, which at this time revolves around his trail motorbike. Steven remains demanding of our time with little consideration to others and the resulting impacts He doesn’t have a well-developed sense of empathy and therefore to understand what other people may be experiencing, or needing, at times, can be challenging. Although this is improving, Steven remains highly impulsive in his purchases. We are actively working with Steven to budget his wage and he was given an ultimatum when he started working that he either had to save $100 per week or he had to pay us to cover his food and bills, Steven opted for savings. Budgeting is something that will continue to be a challenge for Steven for many years to come as there is always ‘another bike part, another shiny bike’…etc. etc. He is highly motivated by money, and this is a concern for us. We focus on giving him the right messages, support and enough freedom to spend some of his money – but this is a fine balance.
Steven continues to mature into a loving, funny and life-loving young man who surprises us daily. His observations and perceptions of his life experiences are at times beyond his years. I am often stopped in my tracks and reflect at some of his views, as he comes from a perspective that I would not have considered.
As mentioned, the challenges remain. However, having commenced his apprenticeship there have been some significant and positive changes. He appears happier now that he is out of the school environment, he loves being around adults and treated like an adult, he is learning new skills in his working environment and learning to negotiate the differences of the personalities – good and bad – around him and also seeing behaviours in others that he knows he either does, or does not, want to form part of his own character.
The next 12 months will take us in to the territory of learning to drive a car on the road and potentially passing a driving test. Frankly, this is a thought that fills us with huge concern, not because we doubt his ability to drive, but because we are concerned about his impulse control and his ability to predict other people’s behaviour.
Until next time, take care, look after each other and remember there is much hope and support in the FASD community.