FASD awareness

Reading some of the comments on different sites can at times make me sad or even angry. I guess mostly sad as so many people still truly don’t get what Fetal Alcohol Spectrum Disorders (FASD) entail. I think there are most likely many reasons for this. I would imagine that for the great majority they just have never knowingly dealt with someone who was walking in the shoes of FASD. I say knowingly as well I think most people probably statistically do know someone who has been prenatally affected by drugs or alcohol. Heck there are people out there who have most likely been affected who themselves may not realize it. So I don’t feel any anger at people who just don’t know. They need to have someone help them to learn about what FASD is and how it affects the people walking those shoes. The second group are the ones I have to daily ask myself to stop judging. They don’t want to believe that alcohol does affect a fetus and therefore a person. Those are the people I pray for guidance for a lot. I don’t want to be judgmental and do theoretically believe it is not my place to ever stand in judgment but when I read some of the comments left by this population of people I truly struggle not to let my red headed momma out.
I wish that those people could for even one day live the life that a person who is dealing with FASD must live. I think they would come out with a whole new respect.
I remember who I was before I knew about FASD. I remember my complete ignorance. I had read the book The Broken Cord by Michael Dorris. I had read this mainly as it was written based on children adopted from Pine RIdge Reservation which is in South Dakota which is where I am from. So it was honestly more about that curiosity than the subject matter of FASD. At that time I was a college student who thought the book was cool but pretty far fetched in my mind. I had no clue at all that years later I would remember some of the stories as I was living them in my own home. I was truly a babe in the woods as far as FASD was concerned.
When we decided we would explore adoption I put that we were in no way interested in adopting someone with FASD or even prenatal exposure. I remembered enough of the book to have a healthy fear of this disorder and felt that I in no way was prepared to parent an individual dealing with those types of issues. Wow…well God in his infinite wisdom laughed a lot as he placed the first 3 children in our home through foster care. None of them had a diagnosis at that point so well we figured we were good. As they grew and their issues came to light a diagnosis followed. I remember laying in bed with my husband the doctors words still echoing in my head “at least you haven’t adopted them yet you can always back out.” What the heck was he a moron? We had loved and held these children in our hearts and our arms for over 2 years there was no way in heck that we could ever back out. We dove head first into learning everything we could. We wanted to find the “fix” for our kids.
I laugh now remembering how somehow I was going to be the first person ever to cure my child of the effects of their prenatal exposure. How completely ignorant could I be. However that journey led me to learn so much and to meet so many incredible people along the way that I would not change it in any way. I needed to grieve for my children. I needed to learn what they needed from me (and that knowledge did not come from a text but from my kids and also from adults who were living with FASD.) By walking through those steps I realized that the one thing my kids needed was ACCEPTANCE. I accept them for whoever they are. I know that the world will not always see what I do and that is okay. I will always be the one to say that they are amazing and strong.
I hope that as September 9 approaches we can educate more people about FASD and also about the amazing abilities found in adults and children who may have a label but are far more than that. JoDee Kulp has asked us to walk miles in red shoes to show awareness and support for this important group of people. Over the next days and weeks I want to share some wisdom that has been shared with me over these many years. Hope that it helps even one person!


About fasmom

The adoptive mom to 12 wonderful children who are affected by Fetal Alcohol Spectrum Disorder and other issues including Reactive Attachment Disorder, bipolar, schizophrenia, CP, epilepsy and oh the list goes on...The thing is these children have taught me things about myself I never knew and would not have missed out on learning. Married to an amazing man and enjoying life on a sheep ranch.
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2 Responses to FASD awareness

  1. Hi there. I have two adopted children and we recently discovered that our 2nd daughter has FASD. I feel so lost and am hoping to glean from you. We have traveled a rough road with her and we feel pretty unprepared for what lies ahead. I’ll read more on your blog and will hopefully be able to ask you questions to gain your perspective.

    Can you tell me a little bit about your background? What is your belief system? I am a born-again Christian.

  2. Hello-

    Thank you for your wonderful blog! It is so nice to see people raising awareness for FASD. I am a graduate student working on finding an efficacious treatment for children born with FASD with a special interest in neuroinflammation. The goal of my research is not to make it safe for women to drink during pregnancy. Rather, I hope to find a way to control inflammation in these individuals after birth and minimize the cognitive consequences of this inflammation. Ideally, this concept would also apply to children born to women with active autoimmune diseases (a topic close to my heart as a sufferer of an autoimmune disease) or infections.

    I was wondering if you might be willing to share a link to my crowdsource funding site for FASD research on your blog. The more people who are aware of the research that is going on, the more hope there is for people and families affected by FASD!

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