I had the amazing opportunity to attend the 9th International FASD Conference in Seattle, Washington last week. One word that comes to mind is “WOW.” About 100 self advocates, ranging in age from teens to early seventies were in attendance. Chatting with others who like to talk as much as me, and can’t read directions, and have so much empathy, all of this was amazing for my soul.

I was asked to be filmed for a CDC documentary prior to the conference starting, and was asked about my diagnosis of Fetal Alcohol Syndrome. I was asked the age I was, who gave me my diagnosis, and how I felt after I received the diagnosis. I explained to the film maker that upon receipt of my diagnosis I went through the stages of grief. It was the first time I had said that out loud. I have thought about it some, but to go live and say it, that was a first. There are 5 or 7 stages of grief, depending what literature you read. I studied the 5 stages of Grief by Kubler Ross when I was in college. Publicly acknowledging I went through this cycle after my diagnosis was healing for me. People may ask how the Grief Cycle has anything to do with being diagnosed with an FASD. Well, I grieved for what could have been. Without brain damage, what could have been different? I love the life I have lived so far, and I have been mostly successful and happy.. Although, I would be lying if I told you there have been no hardships. Many of my hardships n life I attribute to having an FASD. My impulsivity has gotten me into trouble with money and relationships. My lack of understanding cause and effect has had me make some questionable choices in life, and had to deal with the not so great consequences afterward. I think my college career would have been much smoother. I will never know, but I still experienced grief for what may have, and probably would have been.

Shock and Denial is one stage: When my mom rattled off the symptoms of FASDs she had read on a pamphlet from the adoption agency I was adopted from, my eyes widened, and the tears formed. The symptoms were me! Holy shit! But in the same breath, I thought, “NO way. NO way have aI gone through life without knowing this. I am successful in life, I can’t have this!” Yes, I thought that, because I didn’t know much about FASD at the time,.

Pain and Guilt is another stage: Yep, I felt this one. Why? I felt pain and Guilt for the way my life may have been, had my life giving mom not drank during pregnancy.

Anger: This is a fun stage. I felt it in my bones, in my soul. I kept it inside though. I never let it out., at least in public. Alone, sometimes I would curse at her, angry tears would fall. Never in public though. HELL YES I was angry at my life giving mom drinking during her pregnancy. This anger was strong before I knew she was an alcoholic. Before I realized she had an addiction, most likely to numb the pain she went through in her life as an orphan and foster child. Even after I realized she had an addiction, I still had anger, because I didn’t know, and still dont’ know much about addiction. I know what can drive one to addiction, but not much about why it is so hard to stop and get out. I saw a woman at an FASD Conference in Minnesota years back, and she was a recovering addict. She said to hate the disease, not the person. That hit my heart full on, like a football player tackling an opponent. Hard and fierce. At that moment, my anger for my life giving mom subsided. There are days when I get frustrated with her though. When I have a rough day due to my dysregulation or my sensory issues or not understanding a cumbersome task at work, I get frustrated. Not at her so much anymore, but at the disease. Damn addiction.

Depression: Hmm…sometimes when I have had a crappy day because of my FASD (a day at work when I can’t get the hang of a new system, or how to write up a report), I will get sad, knowing these days will always be there. They will never stop. I can learn to do hard things, but it may take me longer than if my brain wasn’t wired differently. These realizations make me sad sometimes.

Bargaining: I try to think if I ever bargained with my life after receiving my diagnosis. I know I ruminated on details of FASD, trying to make sense of all that it is. I would wish, I still do on hard days, that I could go back and change the past. Change my life giving mother’s past. But then I most likelyy would not be here, so there’s that. I like being alive. I like my life.

Acceptance: I think over the past 10 years I have come to accept that my brain works differently, and that I have good supports in place to be successful. I have come to accept that there will be pitfalls, and there will be days I do things wrong, hurt people, have to say sorry, and accept consequences. What has helped me accept my diagnosis is that I have become a self advocates, and an advocate for those who are learning to have a voice. Advocacy gives power and light to a disorder that can be so dark and lonely.

Not only may us with an FASD go through the Grief Cycle, but caregivers may as well. It only makes sense that they would grieve about a life that may be different than what they envisioned. Please understand, the word GRIEF, like the words FETAL ALCOHOL SPECTRUM DISORDERS, is not a bad word. It is a spectrum of feelings, each one validated in its own way, each one unique. Having grief for a life that could have been is normal. Each of us misses something that is now gone, or that could have been. GRIEF helps us through the hard times, it is that bridge to being able to say, “This is going to be ok.”

These stages of grief have no order, they have no time limit. Some may be repeated multiple times, some may only creep up once in a while. Sometimes a stage will come out of nowhere. My advice is to sit with the Grief. Let it go through you, talk to someone about it if it helps. But most importantly, feel it. There is no shame in grief. Through grief, the soul heals just a little bit.