5 Lessons I’ve Learned From Parenting A Child With FASD.

Ten years ago our oldest son was diagnosed with Alcohol-Related-Nuerodevelopmental-Disorder (ARND), very similar to Fetal-Alcohol-Spectrum-Disorder (FASD), and our lives have been a rollercoaster ride ever since. Recently, however, we’ve begun learning new lessons about him, ourselves, and what we need to do differently.

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Defeating. That’s the word that comes to mind when I recount the past decade of parenting our son. He is on the fetal-alcohol spectrum. His brain suffered irreversible damage when he was in his birth mother’s womb. The result has been violence, aggression, impulsion, even run-ins with police, the older he becomes.

The other day we were driving home from visiting in-laws when my son asked my wife, “If you could go back in time and change something, what would you change?” She thought for a moment and then answered, “I’d go back to when you were an infant and parent you differently.”

I silently agreed. We’ve made so many mistakes over the past 12 years. Too many to recount. We’ve made many snap-judgements with him when we should have exercised more patience. We’ve overreacted, often out of fear for our other children, causing situations to escalate out-of-control. Yes, if we could go back in time, we would change so much. But we can’t. We can only continue to move forward and learn new lessons along the way.

And so, we have. In-spite of our many mistakes (which we still make often), we’re learning how to live and parent differently. It’s not easy in the least bit but here are some of those lessons.

  1. Patience. Steady as she goes. Waiting through the storm even when the storm is long and drawn out. Ask anyone who knows us well and they’ll tell you- patience is not our gift. We’ve had to learn to wait. Last October we hosted an awesome webinar with Dr. Ira Chasnoff from NTIUpstream on FASD. One fascinating thing we learned from him was that children who suffer from FASD are always simmering. They’re always ready to boil over at any point. That’s our son. The smallest thing sets him off. The key is patience (remember, not our gift). We have to keep our cool with him. It’s a lesson we’re learning to apply. It’s excruciating because our humanness and bull-headedness prods us to hastily shut things down, However, that’s a trigger. Patience really is a virtue….and I hate it sometimes!
  2. Time. Back in the summer, when I was in San Diego speaking at a conference, I watched in fascination as an aircraft carrier left port and headed for the Pacific. It was an event just to get this massive ship turned around and on course. It took 10 minutes alone for the tugboats to back it up. Then, turning it around amassed another 20 minutes. Lots of time and lots of space. That’s how you turn an aircraft carrier. The same is true for children with FASD. Remember, we’re not very good at patience, nor taking a lot of time. We want to go, go, go. But, in parenting our son with success, we’re learning that sometimes you have to give things a lot of time and a lot of space. We have to give him ample warning before it’s time for bed because his brain cannot re-gear at a moment’s notice. We have to give ourselves as much time as possible for a task because he’s not wired to move at a rapid pace. This is as much of a growth opportunity for us as it is for him.
  3. Compassion. I’ve learned to be compassionate. Just last night, as I drove home from a friends house, I thought about the trauma my son went through as an infant. I thought about the fear that has taken residence in his mind and won’t let him have a moment of peace. My heart softened. My heart broke, actually. I couldn’t imagine living in a prison like that. I am also not a master at compassion. Far from it, in fact. Earlier in the day I was so mad at him I could cuss. Actually I did cuss…a lot. I left the house, with him standing in it, not wanting to look at his face, or talk to him, for the rest of the day. But compassion for his past, his present, his future, and for…him, always brings me back.
  4. Silence. A few weeks before Christmas my son was throwing an all-out tantrum. The kind that caused us to move the rest of our kids in the upstairs part of our home while the storm raged. In past situations, we would contain and restrain him if need be. But, we decided to do things a little different this time. Instead of reacting we stayed quiet and sat across from one another at our dining room table, working on our computers, and texting things back and forth to one another. We didn’t acknowledge or pay attention to his rant, or the shoes and various household items crashing into the wall behind us. What happened 20 minutes later was amazing. He stopped…completely! Then, he took it upon himself to clean up his mess. After that, he willingly did household chores that we hadn’t asked him to do. Silence is golden. Silence and zero reaction (which we so badly wanted to do) neutralized the situation. We took his audience away, thus taking away his commitment.
  5. Goals. We have to give each day a goal and our son needs to know what that goal is. For instance, this past weekend we decided to get up on Saturday morning and drive to Cincinnati to visit my dad. We told our son the night before that we were going to do that. We explained it clearly- “We’re getting up in the morning, eating some breakfast, then getting in the car and driving 2 and half hours to Cincinnati where grandpa lives. We’re going to get there, spend 3 hours with him, hike on his property a little, then drive back home to Indiana. We’ll get to our house right before bedtime. We will eat dinner along the way.” It went off without a hitch, for the most part. It’s not always this smooth but the lesson we’re learning is that we must set a daily goal for him. We have to give him a target to aim towards. His brain cannot handle downtime, or non-structure. The result is disastrous.

To be honest with you, there are a thousand lessons we’re learning- about our son…about ourselves…about FASD…about the world around him. Too many to list here. Had to whittle it down to just 6. This is a growth process for me, as I’m so prone to overreact and jump to conclusions. Exercising patience and giving things a lot of time is unbelievably hard for me. That’s why this whole parenting gig is a journey, not a destination. I’m thankful for that!

Question: Are you learning similar lessons? Share your story with us. You can leave a comment by clicking here.

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  • Carol Kohlberg

    We have three boys living with the effects of FASD. Thank your for posting this article. The one thing I have always tried to do on those days when I just can’t take anymore is; Go back to there story. It is humbling, and I always discover more compassion than I had before.

    • Carol, love reading your words. Yes, we often find that we have more love and compassion in us than we gave ourselves credit for… 🙂

  • Cari Carpenter

    We could have written 80% of this with our experience raising our 10 year old FASD child. We did not know about the FASD until long after his adoption and I see that now as a blessing. I would not want to admit that I may not have signed up for the job with full knowledge. I love him more than anything in the world but his behaviors are so difficult to like sometimes. But then he turns around and does the most selfless and caring act, which shows us his true soul and his love for others. Where in Indiana are you? We are in West Lafayette.

    • Hey Cari, wow…thanks so much for sharing! You sound just like us. Our son can flip a lid but then can turn around and be caring and loving. We’re in that trench with you. So cool that you are a fellow Hoosier. We are just an hour and 15 south of you in Westfield.

  • Savanna Pietrantonio

    It is very misleading and dangerous to judge a behavior by labeling it a tantrum. The brain of an FASD person is on hyperexcitability and is always in fight or flight survival mode. The meltdown is a symptom of the brain damage, a communication that something was not right with your child’s environment and that he was in sensory overload.
    He needed you to help him regulate his emotions. He needed an avenue to get the stress hormones out of his body and he needed you to guide him.
    A meltdown is a very scary, confusing place to be where one feels no control and that you want to crawl out of your skin. Perhaps you missed an opportunity to create a trust bond with your child as he was going through this brain storm.
    There was new research presented at the 2015 FACE Network that FASD meltdowns may in fact be similar in the brain to epileptic seizures. The brain is receiving overstimulation of electrical impulses which why during this time we have little to no control.
    It is true that after a meltdown we have huge remorse and continuing fear of abandonment and low self worth and we are looking to our caregivers to help us through this, not sit back and watch us suffer.

    • Savanna, thanks for your comment. However, I must say, I’m a little confused at what exactly your point is. I’m not judging his behavior by labeling it a tantrum…it was a tantrum. There’s no judgement in that. By definition, a tantrum is what he throws when he’s not happy. Our son, whom you do not know, escalates when he has an audience (i.e.- his brothers and sisters, or my wife and I, watching or paying attention to what he’s doing.) Yes, we did take his audience away intentionally for 2 reasons: it fuels his behavior, and it could lead to one of our other children being harmed.

      • angie

        Hi Mick
        I have done the 123 Magic course, from which I have learned exactly the same as you. Show no emotion and carry on whatever you were doing until the child calms down. This stops the situation esculating. (the 123 magic book is available to buy on amazon). Some great strategies in there to help you cope.
        I have tried everything and this is the only thing that has worked for both me and the children. No two children are the same so do whatever works for you. Plus there is nothing wrong with labelling an emotion, the child needs a name for the emotion to enable them to recognise it themselves.
        Keep up the good work.

    • Fejjie

      Surely the point though is that when the meltdown/tantrum call it what you will, occurs, then there is no reasoning, no reassuring? As with an epileptic fit the person has little of no idea what they are doing. Our oldest daughters is incapable of being calmed, or creating a trust bond, whilst in the midst of the storm.

  • I’ve been reading a few of your articles today… my children don’t have FAS that we know of. BUT they probably would be considered RAD and are DD and some have said OD. We are nearing the 6 year mark where they came to live with us and they are nearly 12. The tantrum you described is what I live almost daily. It comes in waves but the last couple weeks has been rough. How do I survive this? I feel like I’m losing my grip. The isolation is unbearable.

    • Angela, I know how difficult that is. We’re writing and speaking from the trench, not as a family who has made it out of one. :-). You are not alone. Keep going. I know it’s difficult and defeating. Sometimes the clouds cover the sun for a long time (but the sun is still there, just hard to see). Hang in there.

    • Elaine Fox Basler

      There is a book called Try Differently rather than Harder by Diane Malbin, definitely worth a read. Hang in there!!! Lots of love, patience humour, understanding, redirection & de-escalating. Its tough but they are worth it!!

  • David Mahon

    Interesting and relative piece—

    I think we are beginning to live in the fear of exhaustion—fearful that precise wording will result in a tantrum—fearful that we wont see far enough into the future to know a tantrum/issue is coming—-fearful that we are judged by strangers for issues beyond anyone’s controls—fearful that friendships will never develop for our son—and fearful of the future that lies ahead for our little man—and overall, and at the heart of everything, everyday, is the fear that the mistakes lie with us.

    And yet I hopefully expect our son to change–but he doesn’t and the patience to just get through seemingly simple tasks like brushing teeth, putting on PJs , wearing mittens, not stealing, not lying (confabulating), taking care of important items are becoming a siphon on emotions, patience and compassion.

    He doesn’t seem to understand this turmoil–and for him everyday is a new and perfect day where the past is forgotten and the future is limitless. I want that Utopian daily vision but the real world brings that crashing down so quickly and the cycle returns about the fear of exhaustion.

    • David, I totally understand what you guys are going through. Our son wakes up after an awful meltdown the night before, acts like everything is fine, and is shocked when we enforce a consequence for bad behavior. Hang in there. We’re in this trench with you.

  • Christine Geddes

    Just wondering what testing your son had to go through to know for sure there was FASD? We have a foster daughter who is now 23 and I would like to have her tested. Sadly she sits in prison right now, but when she gets out I have a plan to try and get her on the right track if I can or at least encourage her that way.

  • Beverley Hodkinson

    I love this,this is nearly identical to my journey and how I feel,especially the compassion part! Its like you read my thoughts! Thank you its nice to know I am not alone!