Learning about FASD has been an adventure; and sharing our adventures with people for whom FASD is an uninvited and demanding guest has been a journey I would not trade. Of course what I would trade, and what many women around the world would no doubt trade, is being in this position in the first place.
Living with FASD is hell. No other word describes the trauma of parenting a child, teenager or adult with FASD, in fact even ‘hell’ doesn’t do the situation justice as times. While other disabilities ‘enjoy’ understanding, compassion and services, children and adults with FASD have no specific services to turn to for help. Each service has to be advocated for and educated. Not only that, but the surface behaviour of a young adult with FASD are delinquent and antisocial, behaviour that does not result in understanding but judgment both of the young adult and the parenting skills of the mother and father. Services often look at the IQ of the individual as being the factor that makes them eligible for these services. My son has a normal IQ but is still significantly disabled. Where are the supports for him and others like him?
There is also the tender side – when I know that my son is trying his hardest on days when everything goes wrong; when I know the great need he has for the friends he can never keep; when he craves acceptance and respect and in return receives contempt and rejection time and time again. When the pity and the grief are so strong they can hardly be born because this is happening to YOUR son – MY son, and it could have been avoided if only I had known.
He has begged me to ‘let him go’. I think he wants me to stop caring about him so he can kill himself. I told him ‘it will NEVER happen – so he had better get his act together’. I’m wailing inside when I say this but on the outside it sounds just fine – tough love. But how can you apply this concept to teenagers who don’t understand cause and effect; who cannot take responsibility for their actions or their lives?
My sons are both credits to themselves. They are fine, caring and compassionate individuals. Mick will always be able to prove that to others but for Seth, there are only a few people who know what he is really like. Those are the people who live with him and who know the struggles he contends with daily. To everyone else he can either appear confident and intelligent or angry and abusive. All he is doing is behaving in every way according to the symptoms and characteristics of his disability. His behaviour is a symptom, it’s not HIM and yet most people believe he is his behaviour.
It’s hard and I would never want anyone else in the world to go through it but in Australia they are. Most do not have the support I do and are doing it tough on their own, not knowing why their children are behaving in the way they do; and their children not understanding why they are always in trouble and disappointing their parents.
I will never stop fighting for people like Don, Seth, Mick and myself and if I can I will start a class action against the alcohol industry, which for many years have known about the affects of alcohol in pregnancy yet have chosen to ignore the fact. Warning labels are mandatory when wine and alcohol is exported to certain European countries but they refuse to label their product for the Australian market.