What can I share after this long journey, about living with F.A.S.D. (Fetal Alcohol Spectrum Disorder). There is a difference between being a mother and mothering. To commit, nurture and raise a child with compassion, understanding and love is the real, most important part of the titles ‘Mother and Father’! By the same token it is important not to over-protect these children. While we do need to prevent bad decisions, it’s important to let them make some for themselves.
Many families who have chosen to adopt a child with F.A.S.D. have made this commitment and should be supported by the community as a whole. While Child Protective Services have support groups and programs to assist in the rearing of these children, I believe it is important to also have programs in place for the children as well so they can understand at a limited ability what this diagnosis means. There should be as much disclosure as possible so that you are informed of any other abuse that your new child might have experienced and I know that for the most part this is happening now. Realize that this is going to affect your child as well and seek help for them to be able to talk it through and realize they are not responsible for the behaviour of their abusers. Remember the abuser puts responsibility on their victim and makes it their fault, ‘If you didn’t make me so mad’, ‘You need to learn’ and ‘Don’t tell anyone or else’. These are huge burdens placed on a child and they may feel responsible for remaining siblings or be living in fear of the abuser returning. There needs to be a sense of safety and even a code word that you rehearse in case of trouble so that the child knows if they are afraid, you will protect them. As an abused child I never knew this about my parents and wish someone had said ‘I will protect you’. It was always assumed that I understood that, but I never did. When a child has experienced sexual, physical or emotional abuse, the damage is the same emotionally. They will see others as potential threats until proven otherwise.
There are many experts in the field who can assist the parents with daily issues, however I know the children have many unanswered questions as well such as the biggest one of all ‘Why me?’ Unless the biological families are involved in the raising of the children, these questions remain largely unanswered. We are left to our own devices to imagine the answers and are usually way out in left field. I believe it would be useful to include a program for the children to discuss their biological beginnings and the effect, if any; it has or will have on each child. I personally know of one family who is struggling with this very question. The child’s biological father is in jail and the child is acting out violently at times. He asks regularly what his father did to be in jail but what he is really asking if he is ‘just like’ his father. Is this the reason he behaves as he does due to a genetic factor passed down from his parents? While as adults we know this suggestion is nonsense, the child is struggling to understand his own behavior and lack of control. Does the apple fall far from the tree? I am the last person to believe I have the scientific knowledge to win a ‘nature vs. nurture’ debate, however I will add my own two cents. I believe ‘nature’ is responsible for the damage while it’s up to ‘nurture’ to deal with the fallout. I believe behavior is learned by example as well as the responses to this behavior. If a child throws a temper tantrum over a toy in a store and the parent buys the toy to shut the kid up, the child has learned a new behavior through cause and effect..
‘Nature’ was the one who told him to throw the tantrum, ‘nurture’ was the one who showed him it whether it pays off in the end or not. Therefore the bottom line is; it is a choice we make whether or not to follow the behavior with a reward that determines whether or not it will be repeated.
When I threw tantrums, it was almost always out of frustration and a lack of understanding. I was simply not able to put the pieces together in my damaged brain and no matter how hard I tried, they would not fit. Instead of trying to come at the problem from a different angle, people would simply repeat what they were trying to teach would inevitably result in a meltdown. Now I approach things differently and if I don’t understand something, I simply come at it from a different angle after taking a small break to relieve my frustration. I am frequently asking my daughter or my partner to explain things to me and taking both their answers to work the final answer out. There are times when statements are made that I simply fail to understand and I come home and ask my partner what they meant by it. Most often, I have been paid a compliment and don’t even realize it until he explains it to me.
If anyone understands what it is like to grow up with a debilitating diagnosis, it’s Elizabeth Baker. Against all the odds Elizabeth has built the life she wanted despite being diagnosed with Fetal Alcohol Spectrum Disorder and Post Traumatic Stress Disorder. Elizabeth is an engaging, entertaining, and powerful speaker whose message about ‘Focusing on the Positive’ is clear, insightful and most of all, important for anyone diagnosed or living with a child with F.A.S.D. She clearly understands the desperation faced by many individuals with F.A.S.D. and addresses the nuances of behaviors associated with the diagnosis. Elizabeth is able to offer hope and clarity to those navigating the precarious life of a F.A.S.D. individual with compassion and humour.