I’ve learned the hard way expect a backlash when I engage the public on the topic of consuming alcohol during pregnancy. Some of the most hurtful Facebook debates (I can’t call them conversations) on my personal wall have stemmed from my sharing articles about Fetal Alcohol Spectrum Disorders (FASD). A wiser woman would probably cease and desist, would simply say, “Hey, you wanna drink when pregnant? Go ahead.” But I can’t.
Why? Because I love a child affected by alcohol.
Imagine that your child lacked the ability to discern intent, to understand the word “gentle,” or to even remember your name from time to time. Now imagine that it was alcohol that stole all of this from him.
Academic arguments about safe alcohol consumption levels, anecdotal evidence regarding populations where alcohol use in pregnancy is normative, and “new studies” don’t mean much to Phineas. He lives with the effects of someone else’s choices, and you really can’t convey the weight of that in raw data or through analogies. The devastation of drinking in pregnancy is personal. As such, I’m convinced that the only way raise awareness is by being just as personal.
I could share with you what it’s like to parent Phineas, but my friend Renee does a smashing job in this raw post, and I can’t improve on it. Then there’s this excellent peek in the the realities of daily life with children who have been impacted by alcohol. If you know or love a family whose days are shaped by damage resulting from alcohol use in pregnancy, I beg you to take a moment and read those personal stories. Your perspective will change. Why? Because chances are good, everything you assume is wrong.
What do I mean?
He looks “normal” to me.
Once upon a time, the presentation of specific facial features were the primary diagnostic tool for FASD. As a matter of fact, plenty of children (like Phin) were denied access to early intervention services because an assumption was that without the “classic” look, there was no alcohol damage present.
Wrong.
Despite new studies which reveal that the features we associate with FASD occur only if consumption takes place in a specific window of fetal development, the news has been slow to trickle into the public sphere. This means not only do the people in the white coats treating our kids fail to see them as impacted, but our friends and family members also don’t see alcohol as being a part of who the child is. As it turns out, most babies of mothers who consume alcohol in pregnancy will not line up with the old physical stereotype. Which means that chances are excellent that a) the population impacted by drinking in pregnancy in much, much higher than we ever dreamed of— all over the world! and b) people looking at my son can’t see that he doesn’t fall into the realm of neurotypical.
He seems to get it.
One of the most devastating losses in the perception of people suffering with FASD is what the diagnostic materials describe as “little or no capacity for moral judgment or interpersonal empathy.” They also have a striking inability to comprehend cause and effect. Take a moment and let that sink in. People with FASD lack the ability to understand what their actions do to others, or whether they are about to violate some rule the rest of us know to be concrete. Further, they don’t really feel bad about it once a bad result comes into play.
In our house, this has necessitated the line-of-sight rule. The fact is, Phin’s not mean, or malicious. But without an older person narrating his moves, he’s often the one who steals toys, hits people, annoys siblings by repeating their every word, or otherwise being a not-too-welcome playmate. Phineas will take flying leaps off of furniture, forgetting that the rule always is no jumping on the couch. He will secret away someone else’s Duplo creation because he wants it. He will pull hair to get the book he has his eye on. When confronted, Phin will apologize, repeat the rule he has broken, and move on.
And in five minutes, he will repeat the process, if given the chance.
But … if all you see is the compliance when told to stop … if all you see is the apology … if all you see is walking away, for now, without a fit …
Well, it looks like the kid is learning something.
Much to our disappointment, he’s not. No heart change is taking place. Heck, he’s not even learning how to avoid punishment. Yes, he may have a moment of clarity. But it’s not the same as the learning curve the rest of the population experiences in learning to be what we call civilized human beings. People with FASD just don’t get it. Assuming that they do (or can) is frustrating for everyone — and potentially dangerous.
He can make healthy, safe choices if you just give him the chance.
This one is tough, because it often makes moms and dads look like overbearing helicopter parents who want to micromanage everything in their child’s world — or worse, abusive, restrictive individuals denying kids the opportunity to spread their wings. But the truth is that part of the brain impacted the most by alcohol is the very section that applies discernment to in-progress situations. It’s that cause and effect thing again, but this time, colored as well by a severe inability to decode “want” and “need.” And please, don’t tell me that all children suffer from this. Of course they do. But if you stick around long enough in the life of a child who has been exposed to alcohol in utero, you’ll see a theme emerge.
Why does the 10 year-old have to hold his mom’s hand in the parking lot? Because he wants to jump in puddles … even the ones that are in the middle of traffic. If Dad lets go, it doesn’t matter how many cars are blocking the fun— that boy is following the siren call of the splash.
A constant, real-life example in our home revolves around food. Phineas can, and will, eat until he vomits. Well-meaning folks slipping extras onto his plate unwittingly contribute to his agony when, later, he sobs in pain in the bathroom as his body tries to work out his overindulgences from both ends. Christopher and I probably come across as ogres by enforcing a strict diet for our son, but the reality is that we’re gatekeepers of his health. Phin can’t do that job right now, and may not ever be able to do so.
He’ll be fine.
Probably the hardest assumption for me, as a mom, is the one that implies that a skill attained is simply practiced, then built upon. How often have I heard, “Oh, he’s fine! Look, he’s getting it now! He’s just a little slower to pick things up.” I know that people saying these things are well-meaning, and are trying to be genuinely encouraging. Sometimes, it even feels like it. But the truth is that a child with FASD picks up skills and loses them without rhyme or reason. Constant, daily drill can keep certain lessons learned in place. But there’s no guarantee. Recently, Phineas completely lost the ability to count past two. This, after a full year of counting to twenty with fair reliability. This, after just the day before, counting out forks for the dinner table, “One, two, three, four, five, six…” Suddenly, it was all gone, replaced with a concerned, befuddled look on my boy’s face, and a struggling, “One. One. Then … two? Four?”
Imagine that everything —every lesson you’ve ever taught your child, be it a physical, academic, or spiritual skill — can slip through that colander at any time. You tell me … is he fine?
For Phineas, for our whole family, FASD is a part of every moment of every day. No, it does not rob us of joy, nor does it define the love we have for our sweet, eager son. But it’s always there, creeping in the corners, needing to be weighed in every choice. Something that sounds like grand fun (“Let’s load everyone up and go to the park for the day!”) and even appear o.k. while in progress can (and usually does) lead to deep distress and meltdowns later on. That’s part of our lives, and we accept it. We accept it because we love Phineas, because we think he’s worth far more than the measure of any limitations, because he is dear and precious and we can’t imagine our world without him.
But it didn’t have to be this way. Phineas pays the price for a crime he didn’t commit.
And the assumptions? I won’t lie. They hurt.
This is life with FASD.
Oh Heather… I had no idea.
Thank you for clearly spelling it out.
Well written, as always. We recently started counseling for two of my four kids even though everyone tells me that they are “great kids.” And they are, but no one but me sees the day to day struggles that we have that I feel like we need some outside help. It’s been a great lesson in realizing that I can’t judge other parents for the actions of their kids or things they do that I don’t agree with, because I don’t have the whole picture. That parent is probably doing what they can to survive.
I’ve also had to get over my phobia of ‘labels.’ I’ve realized that sometimes that label is a source of hope! Like we have a starting point and we’re not just dealing with a nebulous set of symptoms.
Thank you for having the courage to post this. Our son was never diagnosed with FASD because he did not have the facial features, but he demonstrates many of the traits of these kids. And yes we have had much judgement/assumptions from well meaning people, namely family, that just do not understand nor try to understand the challenges of parenting when you never know what the child will do next. Now we are at the crossroads of what to do next with a drug effected , traumatized 17 year old that no longer wants us in his life and cannont understand how hurtful many of his actions and words are. And many/most people in our life do not understand. So thank you for putting into words what I do not have the abiblity to do. It helps me feel not quite so alone in the battle.
Jill, my heart breaks at your words. If love was enough, your son would have been “fixed” long ago. ((Hugs)) as you walk into a very scary, very hard future that none of us can ever be ready for. No judgement here. None at all, friend.