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National Organisation for FASD Australia

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Welcome to the website of the National Organisation for Fetal Alcohol Spectrum Disorders (NOFASD) Australia.


“Our stories are not meant for everyone. Hearing them is a privilege, and we should always ask ourselves this before we share: “Who has earned the right to hear my story?” If we have one or two people in our lives who can sit with us and hold space for our shame stories, and love us for our strengths and struggles, we are incredibly lucky. If we have a friend, or small group of friends, or family who embraces our imperfections, and power, and fills us with a sense of belonging, we are incredibly lucky.”  – Brené Brown


If you are an adult with FASD, you are all too familiar with the shame and blame that tears people like us down.  We say and do the wrong thing and at the wrong time.  We make mistakes – lots of them.  The systems and the media – not to mention most people – see us negatively.  It is easy for others to judge what they do not know from personal experience or when they only have some – and often none –  of the information they need, especially when they are so removed from our situations – and that of our birth mothers.

Recently, I have been thinking a lot about the shaming of women who drank in pregnancy and gave birth to children who have FASD.  Much the same way as shaming and blaming affects those of us who have FASD ourselves.  It’s easy to do or think almost anything when you de-humanize a person.  One of the great tragedies is that the anger we feel is often not even our own – it is the anger we have been told or taught.

Sometimes, we are part of the problem that our birth mothers face because we are hurting; we are angry and so we blame them.

So, this blog is an open letter about my journey to healing and compassion for my birth mother; things, that as an adult,  I would have talked to my birth mother about if I had gotten to know her;  things other birth mothers I know taught me I could have the courage to discuss.

I only knew of my birth mother. I did not know her, the person.  And that is precisely the problem.

I was born on an early January night. The woman who gave birth to me had alcohol in her amniotic fluid and was drunk when she delivered me.  She had nine children before me, and they had all been taken from her at different stages. She was a chronic alcoholic (a disease that eventually claimed her life). This is all I knew of her for a very long time, because that is all the social work records stated.  I did not know the woman who gave birth to me, as I was apprehended at birth. I was not named by her, nor do I imagine I was able to be held by her, although I don’t know about the last bit about being held.   I was a very small baby, weighing less than three pounds at full term and I had many serious medical problems and spent months in the NICU before entering foster care and being adopted.

I do know she died when I was 10 from her alcoholism; something that I understand now is a terrible disease that can destroy your body and soul.   I never got to meet her. For the early part of my life she was just a curiosity. Who was this mystery woman who gave birth to me but was not my mother?  I don’t know what her favourite colour was, what her favourite song was; if she liked hockey or rooted for a certain team; if she liked spicy food, or ever enjoyed swimming.  What happened to her?  Why couldn’t she keep and raise her children?

I was far too young to understand trauma.

She was never a ‘nobody’ to me – but she was never in my mind as a fully recognized person; a human being, like you and I.

In my teens and early 20s as I grew, and the disability of FASD made life a lot more challenging than it ought to be, and I really understood what caused that disability, she became an empty vessel for me to blame, and shame and be angry at – which was easy because she was never a human being.  I judged her and dehumanized her and knew her only as a pattern of her addiction.   I did not understand, and judged her only through MY experiences, which were not hers.  After all, I was having a miserable time in life because she drank. I couldn’t achieve MY dreams because she drank. MY life was ruined because SHE ‘CHOSE’ to drink. It was all terribly selfish……and I never understood then that the selfishness I thought she ‘chose’ was also mine because I was not her and did not know who she was – as a person.  And I absolutely did not understand that alcoholism is NOT a ‘choice’ for anyone – ever.

Anger is a natural part of grief and of growing up when you have FASD. Knowing you are different can be very hard, learning there is a “cause” and it could have been “prevented” was all the reason I needed. I was justified in MY anger. How dare she?

But if you stay in that place, then you never stop being angry and you can never find peace and acceptance of yourself and you NEVER move on because you cannot.

As a person with FASD,  I think everyone with this disability goes through a grieving process around the two most misunderstood and over used words dealing with FASD – “cause” and “preventable” The third piece to our stigma trifecta would be “less than”.  Because of her, I was born “less than” in society’s eyes and it was all “caused” by drinking.  And if she had “just not” then all my troubles would have been “prevented” and I would have been “normal”.

This is a very easy answer to a very complicated problem. What I have come to really dislike are the easy answers to issues that are all too complicated.  They let those with the most resources off the hook and place all the responsibility on those who often have the very least.

It was one of the big international FASD research conferences in Vancouver, BC, Canada in which I had made a remark about my birth mom not having the good judgement or being too selfish to not drink that changed my life.

It wasn’t what people think. My mom had not said anything to me, she had not told me I was wrong to think this thing I thought; she did not tell me I was wrong to feel anger towards a person who, for all intents and purposes, was a complete stranger.  She let the comment slide. What she did do, and I will ALWAYS be very grateful to her, and awe struck, was what she said to me: “There is a session I think you should sit in on.”  I said sure. That afternoon I sat in an auditorium and listened to a panel of six women speak.  Six women who all had drank during pregnancy. Six  women who all had children affected by their drinking;  two who raised those children and four who lost their children to social services because they could not care for them.  They spoke about their own lives, before ever having children, they talked honestly about trauma; about secrets and abuse; they talked about violence; they talked about addiction; about self-hatred; they talked about growing up in good homes and bad homes; they talked about their experiences with life as they had to live it; they talked about EVERYTHING; THINGS I NEVER CONSIDERED.  They spoke about being pregnant and drinking and being unable to stop. Two of them talked about not knowing what alcohol could do.  They all spoke about knowing something was different about their children and the horror of finding out they were the cause. They spoke of the LOVE they had for their children. They talked about guilt and self-loathing and shame.  The fight with alcoholism; the stigma, the world they STILL navigate because they drank while pregnant.  Their enduring pain was overwhelming.

I will always remember the shock I felt when I realized that the anger that I had toward my birth mom had built a home and resided in me; that over the years that anger had built additions to that home but NONE  included anything that I heard from these brave women.

How is it that I never knew this?  Because I was never ready before to hear it, I think; to truly know it; to understand it.  Because I was too busy taking the easy way out and being angry.

But I learned that day.

These women, and the many other birth moms I have been privileged to know since, could have easily been my birth mom. They filled in the critically missing blanks and made my birth mom a much more complete human being.   Just as you the readers are, just as I am. People make mistakes, sometimes really huge ones. Sometimes when someone makes a mistake or a choice, or turns left instead of right, things are affected and go badly wrong.  Sometimes little, sometimes big, sometimes years down the road.   And sometimes, we hurt others without meaning to.  Understanding and support are what we all need if we are to get through it.   Because you cannot forgive what you do not understand.

My anger did not just instantly disappear or dissolve or fade away. With each woman’s story I have come to know, it was evicted, a little at a time over several months and years as I thought about and thought about what I heard.  Processing information takes time.   But anger and blame were no longer residents in the home of my mind and my heart and my soul.  Something else claimed the home. Forgiveness, understanding, and acceptance.   And the knowledge that if I could do this for my birth mother, then I could also do it for myself because I am also part of her.

I want to re-state something from the very first thing I ever wrote many years ago. “I have had FAS all my life.  I will have it forever; it will never go away.  Do not be mean or mad or blame me. Moms do not do this on purpose; please do not be mean or mad or blame them.  Alcoholism is a disease.”

This is something I only now truly understand.

To the woman who gave birth to me, whom I never knew and who died when I was 10, I want you to know that I am okay and you would be proud of me.  I may have had to change my dreams but I do have dreams that work for me and I have made some of them come true.

CJ Lutke, who is 36 years old, was diagnosed with FASD when she was a baby. CJ is a well-known speaker on FASD, having presented at, and participated in, many conferences, seminars, training sessions and other events for many years, sharing her experiences and what she has learned living with FASD. Read more of CJ’s blogs here

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