10 Powerful Truths About FASD That Will Change Your Perspective.

Editors Note: The Honestly Speaking Parenting Podcast is taking a short break this week but will return next week with a brand new episode.

For the majority of the world, Fetal Alcohol Spectrum Disorder (FASD) is misunderstood and often judged. But, there are powerful truths that can change your life when you understand, and embrace them.

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Anger.

That’s the word that comes to mind when I think about FASD. Anger.

I’m angry that my child’s birth mother would make the selfish choice to drink during her pregnancy, angry that the claws of addiction dug deeper than the conviction of pre-natal care, angry at the numerous therapists, doctors, and authorities who’ve downplayed or disagreed with my child’s diagnosis over the years, angry at a world that judges before seeking the truth, and angry when I think about the missing pieces of my child’s life.

The child I chose with love.

Most of all, I’m angry that he will never have a normal childhood. A part of his brain is absent thanks to a stupid choice, a lack of self-control, and an unwillingness to guard his precious life before he took one peek at the world. I know this sounds harsh but this is the stuff I wrestle with often. Sometimes it eats at me, grinding away at my soul like a jackhammer grinding away at concrete. Other times, it’s sadness. A deep longing to go back in time, before his conception, and beg his birth mother to not make the choice she would eventually make.

Yes, we reel in pain over this disease. After all, that’s what it is. It’s brain damage, and the worst kind too, as far as we’re concerned. We live with the devastation of our child’s violent outbursts that have brought trauma on our family so deep that we’re not sure we’ll ever heal from it. We wrestle but, we’re hopeful. In the midst of our life, which often looks more like a pile of ashes than a life, we have a hope and a belief that our child, our son, will succeed. It began a while ago, when we embraced some powerful truths about FASD…

  1. It’s a permanent condition. FASD is permanent brain damage. It cannot be reversed nor cured. The part of the brain that is affected will never heal or be restored. When we finally stopped fighting against this reality, and stopped trying to fix our son’s physical condition, we discovered something revolutionary (more on that in a minute).
  2. It’s an uphill climb. Everyday of our child’s life will be an uphill climb, and it will be so for you if you have a child who suffers from this. You’ll fight with them, and against them. Heck, you’ll spend a ton of time fighting professionals who just don’t get this disorder. You will feel like you’re climbing the side of a mountain but never reach the summit. Honestly, it’s painful, and exhausting. Doesn’t feel very hopeful, right?
  3. No amount of alcohol is okay. There is no safe amount. One drop at any given moment during pregnancy can cause permanent damage. We are astounded that doctors still tell women today that they can have a glass of wine or a small drink every now and then while they’re pregnant. In our opinion these doctors should be barred from practicing medicine for eternity.
  4. It’s misunderstood. Recently, Kristin was watching YouTube videos on the NoFAS website when one woman stated, “FASD doesn’t get the attention it deserves because it’s not a ‘designer’ disorder like autism.” True! There is a vast misunderstanding surrounding FASD.
  5. It’s often judged. Even though it’s clear that we are adoptive parents (our oldest son is African-American), we have been judged. My wife, mostly, as a mother, has faced judgement even though she is not his biological mother. This stems from the misunderstanding we just talked about. It’s also inaccurate education on the realities of FASD. But….
  6. It’s not the end. Reading those first 5 truths feels depressing and dark. I know. I wrestle with them all the time. Every time I look at my children who are affected by FASD I feel a mixture of anger and sadness. But I’ve discovered there’s hope. This is not the end, even though it feels like it when you’re crawling through the trench. This is not a wrap on our child’s life. And, here’s why…
  7. It’s a fight. You and I are locked in hand-to-hand combat as parents. Yes, with our sons and daughters because, let’s be honest, the days of parenting a child suffering from FASD are dark and un-ending. But this fight is much bigger than anything we’ve seen. It’s not a fight against our children, it’s a fight for our children. It’s a fight for their heart because we love them. I love my son more than anything and that’s why I’m choosing to fight for him, even though I sustain deep wounds! I will not stop chasing down resources or finding outlets who get this disorder.
  8. It’s not a life sentence for you -or- your child. While this disorder is permanent, this is not a life sentence unless you let it become so. It’s your choice. The world is slowly starting to wake up to the reality of FASD and great resources are starting to take shape. NoFAS is one of those. This website is packed full of insightful and inspiring content, plus resources that can help navigate the trials of parenting a child with this disorder. One other resource that we are huge fans of is the documentary Moment To Moment.
  9. It can’t be cured but it can be flipped on it’s end. It’s all comes down to whether or not you choose to keep fighting for your child. The world may see my children as hopeless or damaged, but I see my child as a promising human being filled with talent, creativity and the ability to overcome this and succeed.
  10. The disorder can’t be changed, but the heart can be. We are committed to helping my son’s heart heal. In fact, it’s our daily prayer for him. We believe this is the answer for FASD. He will always wrestle with the side-effects of this disease. He will always deal with impulsivity and a thought-process that fails him, but, the healing of his heart is how he will beat the odds and overcome this. Nothing in this world can make us give up on him, or this truth.

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As I write this post, my oldest son, who has been in and out of residential facilities for the past 5 years, thanks in part to violent behavior, brought on by FASD, is moving to a new facility even farther from our home. Many would read those words and immediately place blame on us. Frankly, Kristin and I have wrestled with that already. We’ve laid awake many nights, over the past 5 years, asking God what we did wrong, begging Him for an answer. We’ve watched the way other children (and adults) have treated our son, judged him, and his disorder. We’ve stood helpless as our son caused a scene in public or flew into a rage and hurt one of our other children or us.

Yet, we won’t give up. As we grapple with the truths above, we find power through them. We find the will to fight. As the reality of his condition and the condition of hundreds of thousands of other children like him, sink in, we find ourselves invigorated and motivated. The hope that we have is the hope we choose to seize. We could give up and allow our son to remain a statistic, or we could keep getting up, even when we’re knocked down hard, and help our son become a success! We choose the latter.

Question: Are you raising a child with FASD? Share your story and your struggles with us. You can leave a comment by clicking here.

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  • Earline

    I missed the live version. Can u make this available?

  • Danie Botha

    A very detailed and honest posting.

    We don’t have children with FASD, although we have adopted children years ago, who are adults now. I do want to comment though on your last paragraph, Mike. You mention that the oldest son is now moved to a new facility farther away from home and how many would be quick to blame you and Kristin, the parents, for making such a harsh decision. I mean, how could you?

    How could you not?
    You have to protect yourself, Kristin, the other children in the first place, and, by implication the son that is removed. It is not easy. It might never become easy.

    The disease is permanent. Fortunately the heart can change-indeed.
    And then still, we need grace afresh every morning.
    To go on. To not give up.
    And start over the next morning.
    Believing again.

    Thanks for a special post, Mike!

    • Thanks for your kind words and your feedback on this post Danie. We really appreciate it.

  • Pingback: Why I Don't Really Want To Accept Your Help | Confessions of a Parent()

  • Stormywen

    Our youngest 6 children are adopted and all were alcohol exposed. 4 have been officially diagnosed with FASD. It is much easier to understand the behavior when you know that they have permanent brain damage…..and that is NOT something society generally knows. They see the awful behavior and they blame the parents. I don’t know how many times I have been blamed for not disciplining my children enough, being too lenient, ignoring behaviors, etc. One of them made an awful choice and went to jail 2 weeks after his 13th birthday. He had to live out of home after that and we are now in the process of transitioning him home again. I praise God that we can be together as a family again and I pray that our family remains stable (as stable as it ever was before, LOL).

    • Oh I am so sorry to hear that you are going through that. We’ve been accused of all kinds of untrue things over the past decade. You are doing a good job though. Never forget that. Even if the whole world brings false claims against you. Keep fighting the good fight.

  • Toby

    Mike and Kristin-
    I follow your journey. My wife and I have three boys of our own 8,6 and 4 (very rowdy :)) and our baby girl Livia, who is waiting for us in Heaven who would be 2 this summer. We are in the beginning of the process to take in foster kids and eventually, Lord Willing, adoption. I grew up with a great family, and I have one older biological sister, an older adoptive sister and an adoptive brother we got when he and I were 12. (he is 6 months younger than me) He was diagnosed FAS before we adopted him…but obviously I was 12 and did not know what that all meant. I am now 43. In high school, my brother got into a lot of trouble, spent months and years away at boys homes and detention centers for behavioral issues. I actually did not talk to him for about 20 years after graduation! I was dead set against adoption for the pain I felt he put my parents through all those years ago. About 5 years ago, we reconnected. I had become a Christian about 5 years prior to that (10 yrs ago) and I felt the Lord nudging me to try to reconcile. We are pretty close now…talk most every week even though he lives a couple hours away. He has a 5 year old son, who he has full custody of (mom an addict). My whole point being this…don’t give up (I know you haven’t)! I DID! I gave up on my brother. He went down some very dark paths over the 20 years we didn’t speak, with drugs addictions, prison etc… But, now that we have a relationship again, I count it a joy to speak into his life and the life of his young son.
    He still struggles every day with things we consider easy, like budgeting and making good decisions for his son. But, now he knows that his “FOREVER” family is there for him, no matter what!
    Keep pressing ahead…fight the good fight of Faith. Blessings, Toby

    • Hey Toby, so glad that we are connected here. Sounds like you are in the the same fight that we are in. We understand completely. It warms our heart to hear you say that he knows you are his forever family. Wow! Keep up the great work!

  • Ryan or Janelle M.

    May I please quote your #7 on my own blog? I’m starting to write about my own experience and you nailed a very deep experience in the head. The moment I saw my son, I didn’t fall in love… I lit up in anger. In a moment I became a warrior-mother. Love came later, but I had a LOT of fears to overcome first. It’s at openlybeautiful.com.

    • Hey Ryan and Janelle, absolutely. Feel free to. Only requirement is that you reference confessionsofanadoptiveparent.com. 🙂

  • Christina

    Finding your blog has been a lifesaver for me. I hate that any other family goes through the same pain we do….but it somehow helps me to read your posts and know that we aren’t alone. Not even an hour ago I was yelling at God, “Why do you hate me?? Why is my family being punished for adopting a child?!” Needless to say….it was a really bad FAS morning. Heck….it’s been a bad few years… Then I got on here and read this. Thank you for your transparency and writing from your hearts….thank you so much.

    • Hey Christina, we are so glad you found us and that we could get connected! You are not alone. We are in the same trench. Hang in there. There is hope. So glad our words could encourage you. 🙂

  • Ayiti Nirvana

    How I feel most days as a momma of trauma kids

    I am not a reflection of your insecurities.
    So swallow your venomous opinions of my life.
    I’ve devoured demons greater than you.
    I’ve slept with the spirits of regret, befriended pain and made heartache my lover.
    So, come, creep into my soul and see if you can survive the night.

    • Wow, thanks for sharing this in such a beautiful and poetic way. You nailed it.

      • Ayiti Nirvana

        Thank you Mike. Mine are not FASD but between the two, I deal with RAD, ODD, PTSD, ADD, ADHD and a suspected personality disorder. So, yes, after developing a very thick skin, it takes a lot to ruffle my feathers anymore.

        • Yep, we have the thick skin too. That’s what it takes to make it in this life. 🙂 🙂

  • Willa

    Reading all of these posts helps me to not feel so “alone” in this “battleground” known as FASD. My sweet bittie was born FAS, Cocaine and Meth addicted. She lives with DMDD/ODD, ADHD and, most recently discussed, more than likely a bipolar/schizophrenia component. People have been so upset with me over her “attitude”. I have been chastised for her birth issues, even though she was adopted from foster. Your post rang true on so many levels for me personally. Thank you to all for sharing and thereby helping to see that I am not alone.

  • Valerie Lipow

    I agree with most of the sentiment in this passionately written blog post.

    Most — but not the part about anger towards birth mothers. My son’s birth mother drank during her pregnancy without any awareness of its effect on her baby; she was dealing with her own heroin-based demons. And those mothers who drank during pregnancy I’ve met would exchange anything they have to undo the damage they caused their children.

    Most — but not the part about autism being a “designer disorder.” Although society has changed its attitude about autism through increased awareness, it is nothing that anyone who has lived with it would call “sexy” or “cool”, or would have designed. I have two family members on the autism spectrum. They struggle; their families struggled and continue to struggle.

    I and parents like me are working toward increasing FASD’s awareness in society until it has the acceptance of autism and other developmental disorders such as Down syndrome, and until people with FASD receive the support and services afforded people with those developmental conditions; and until no children are born with FASD.