My name is Anne and I am the birth mother of two boys with Foetal Alcohol Effects. I am a recovering alcoholic with four years of sobriety.
In my own self-interest, I would have preferred not to know that my addiction had physically harmed my children. But regardless of how I felt, my boys deserved a diagnosis. It was the first step to obtaining the particular help that was vital for my youngest son who at that time was almost 17 years old. He was struggling with licit and illicit substance abuse, depression, anxiety, suicide attempts and ideation, employment problems and interpersonal crises.
My husband and I found his behaviours frustrating and bewildering given that even with my alcoholism, we were a loving, caring family. We did not know where to turn or how to integrate his more challenging behaviours into the kind and loving person we knew he was.
It was not until I was researching ADHD with which he was diagnosed at aged 13, that I discovered three words that completely stunned me - Foetal Alcohol Syndrome.
I went to a doctor who advised that I didn't really need to have a diagnosis, I went to another who, although in agreement with the diagnosis, provided me with options which did not match my son's abilities. I went to a third doctor who asked my why I was doing this to myself. I was willing to do anything to help my boys but didn't know where to start and couldn't find anyone to give me advice.
After weeks of recrimination and denial, I decided to face this problem head on. I spoke to my husband and together we told our boys.
When we could find no local assistance, I contacted Sue Miers from the National Organisation for Foetal Alcohol Syndrome and Related Disorders who gave me the support, encouragement and information I needed to make the best choices for my sons.
My 17-year-old is now in appropriate full time employment and has a Rehabilitation Consultant from CRS Australia who understands his condition and is prepared to read the material available in order to undertake the most apposite tests and assessments for him.
In hindsight, while the diagnosis was the most difficult thing I have had to face in my life, it was the start of a new life for my son. Even though he still has to confront the same problems he had before the diagnosis, he now has a reason for some of the things he finds so difficult in his life.
He says of that time, "I really didn't understand what it meant for me. I am the same person but have more of an idea why I do the things I do. My parents understand me better now."
I can recognise that dealing with a complex and emotive issue such as telling a mother that she has harmed her child can be very tough for a doctor. However I believe this is preferable to allowing a child to go through life with no explanation for his often self defeating idiosyncrasies; with no access to the assistance and understanding he needs; no reason for his suicidal fantasies, and with parents who misunderstand his resistance as defiance, and his lack of remorse as cruelty.
As with many regrettable diagnoses, the benefits must be measured in the long-term rather that the short-term. Most mothers will cope for the sake of their children and a diagnosis can mean a great difference to an affected child. My children were not diagnosed until they were 20 and 17. For my youngest son, while trying to cope with his feelings and behaviours through his teenage years, self medicated with marijuana and alcohol and became self-destructive. I believe that this predisposition will now be with him for the rest of his life.
If he had been diagnosed as a young boy, we may have been able to prevent some of these potentially life threatening secondary disabilities.
A diagnosis can provide the catalyst to appropriate care. No amount of assistance would benefit individuals with FASD unless moderated by knowledge of this condition. The behaviours and characteristics exhibited by people with the Foetal Alcohol Spectrum of Disorders are quite specific and rarely comprehended by people who do not have an understanding of FASD.
My eldest son who is now 21 says of the time that we told him of his condition, "I didn't understand at first. I felt bad but mainly for my mother because she blamed herself and she didn't know. It has made me more aware that I need to concentrate harder on what I am doing. If I saw a pregnant woman drinking I would tell her that what she is doing could be dangerous to her child."
Unless professionals of varied disciplines understand the reasons for the behavioural idiosyncrasies of a child, teenager or adult with FASD, we are going to let our community and society down. No matter how many difficulties a diagnosis may cause, there can be nothing but benefit for the child providing they receive the ongoing assistance and care they need to be the best they can be.
Anne from Down Under
20th May 2002
NOFASARD South Australia