It’s not worth the risk

 

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By @FASD_Mum

We strap kids into car seats when we drive a few miles across town and slap bike helmets on them when they are on a scooter on a flat road.  We sterilize bottles and don’t feed them whole grapes or peanuts.  We measure the space between slats on the crib and we cover electric sockets.  We gate the stairs and we bolt bookcases to walls.  We do everything we can to protect our children from harm, day after day, forever.

That instinct for survival, for the continuity of our hopes and dreams, that will to send our children into the tomorrows we will not see is a most powerful and primal – some say sacred – force.  We yearn to comfort, to nurture, to cherish these little beings who come into our lives.  We kiss them, hug them, soothe them, stand by them day after day.

So why, why after one of the world’s most prestigious medical bodies issues clear information about how to avoid one of the most devastating and completely preventable causes of brain damage to our kids, why does social media finally light up — in criticism instead of praise?

Here are the exact words from the US Centers for Disease Control:

Alcohol use during pregnancy can cause fetal alcohol spectrum disorders (FASDs), which are physical, behavioral, and intellectual disabilities that last a lifetime. More than 3 million US women are at risk of exposing their developing baby to alcohol because they are drinking, having sex, and not using birth control to prevent pregnancy. About half of all US pregnancies are unplanned and, even if planned, most women do not know they are pregnant until they are 4-6 weeks into the pregnancy. This means a woman might be drinking and exposing her developing baby to alcohol without knowing it. Alcohol screening and counseling helps people who are drinking too much to drink less. It is recommended that women who are pregnant or might be pregnant not drink alcohol at all. FASDs do not occur if a developing baby is not exposed to alcohol before birth.

Our 11-year old son has Fetal Alcohol Syndrome.  Before he took his first breath his brain had been fried by the alcohol that seared its impact on his brain, fused part of his spine, changed his developing bones. The neural connections that would allow him to comprehend time, mathematical concepts, cause and effect, and other so-called ‘executive functions’ were permanently scrambled.  Alcohol is a solvent, think of it pulsing through that developing embryo, that vulnerable fetus.  The bridges between different parts of his brain were compromised.  As a result he is forever a person who will run out into the snow and then – too late – remember he should have put on his gloves.  He is prone to epic meltdowns when his system is overloaded by input that his brain cannot process because long before he felt his first touch someone took that drink or ten or more.  His fight and flight instinct wrestles control of his reason in ways that leave him defensive, confused, incapable of calming until he has help or grows too tired.  The love and hope he has inside of him every day faces the onslaught of physical disabilities that all were caused inside the womb, that space where he was supposed to be safest of all.  Our son is one of the many, many thousands who walk through this world with brain damage caused by in utero exposure to alcohol.  This is not hype.  This is a cold, hard, kicks-you-in-the-gut, solid fact.

So, please.  To the author who responded to the CDC’s advice with the incendiary article, “Have a uterus? Then say goodbye to alcohol—forever!” and to the woman who wrote “CDC Says Women Shouldn’t Drink Unless They’re on Birth Control. Is It Drunk?!?”, dear friends, you and others like you need to spend a day in the life of a family affected by FASD before resorting to your condescending tones. Your righteousness smacks of ignorance.  Tell it to my son who struggles to have friends, who curls up and cries on the couch when he cannot understand why he loses his temper, or why he gets bullied, or why things are so hard for him every single day of his life.

You are imagining a long night out without a drink or two, a boring weekend, an awkward conversation explaining why you are not drinking?  Try having a long life of impossibly confusing social interactions and rejection after rejection.  Try knowing you walk through the world with statistics that overwhelmingly say you are at high risk for addiction and imprisonment.  Talk about long nights?  Try not being able to sleep without medication.

The experts are coalescing around a common position.  The American Academy of Pediatrics said in a recent report on Fetal Alcohol Spectrum Disorders,

“During pregnancy: no amount of alcohol intake should be considered safe; there is no safe trimester to drink alcohol; all forms of alcohol, such as beer, wine, and liquor, pose similar risk; and binge drinking poses dose-related risk to the developing fetus.”

Pardon me if I trust those with degrees dripping off their walls more than I do some blogger who seemingly cannot imagine a Friday night without keeping open her option to see where that pitcher of margaritas might lead, some indignant young woman who somehow resents the suggestion she should use birth control if such a situation is likely to happen.

The governmental agencies tasked with protecting our children, advising on medical care, informing our policy makers and the media are telling us to take care.  If you would put a helmet on your kid, why on earth would you not first protect his or her tiny brain when it matters most?

I am an American living in the UK.  I am proud of the CDC’s leadership on these issues.  The UK also has taken some steps forward recently.  The Chief Medical Officer has issued draft guidelines that say clearly for the first time:

“If you are pregnant or planning a pregnancy, the safest approach is not to drink alcohol at all.”

So where does all this leave us?  At this very moment my son is currently doing upside down flips on our couch, excitable, in danger of spiraling out soon since I am letting him play the video game while I type this. He is between medications, as we try to juggle the horrible choices between helping his concentration but affecting his moods, between building chemical bridges where his brain cannot, but maybe making him too sleepy to be the joyful being he is.  Decisions no parent wants to make.

It was time for parent-teacher consultations last night, his first in his new mainstream secondary school.  We dare to feel cautiously hopeful because a couple of teachers think it might be possible for him eventually to take the GCSEs, the fundamental tests in the UK for all 16 year-olds, akin to a basic US high school diploma.  My husband nearly cried when one teacher took the time to tell him how much she loved having our son in class – how engaged he tries to be, how he is pleasant, raises his hand, helps others – rather than dwelling on how very hard it is to get him to sit still during a lesson, how information he knows one day seems to be inaccessible to him the next, how he fidgets and perseverates, how he loses patience quickly and how difficult it is for him to explain concepts and links between different information.  This is a talented boy full of rhythm and song, exceling in gymnastics and dance.  A child I love dearly and completely in all that he is.

But make no mistake, if I could rewind time and sit next to the woman who put that drink to her lips, I would smack it away from her: once, ten times, one hundred times.  Because we just don’t know when the damage was done, though his facial features indicate some of the major harm was done before the ninth week of pregnancy.  Whether or not she had a drinking problem or was just a social drinker, at some point the fact is the alcohol she drank blasted its way into our son’s future.

It’s not a blame game.  It’s not a shame game.  It could’ve been me – I lived that life as a single, young, cosmopolitan woman who thought I knew what I was doing and who has also herself stared at a pregnancy test stick uncertain as to whether or not an impromptu (unprotected) evening would have consequences.  If I were sitting next to myself at those moments, knowing what I know now, I would slap the drink(s) away from me too. Or I would hope someone else would.  I was lucky.  That’s all.  Lucky.

It’s not a blame game.  It’s not a shame game.  Some of the most powerful advocates I know and respect in this FASD community are birth mothers who love their kids desperately and are seeking to do all they can do for them, and to help others avoid such pain.  Just because I am agreeing with and welcoming this new guidance doesn’t mean I think you are a bad person, or that I am trying to take away your rights – my rights.  I am thinking of my son, our kids, the future, the great trust we have, our instincts to protect and nourish our children.

So, let’s repeat it, let’s shout it out loudly, internationally (what is true in the US is as true any other place in the world):

“[W]omen are at risk of exposing their developing baby to alcohol because they are drinking, having sex, and not using birth control to prevent pregnancy.”

And, as the UK adds,

“If you are pregnant or planning a pregnancy, the safest approach is not to drink alcohol at all.”

That is clear, direct, informed, authoritative, and uncomfortable for those women who don’t like to accept the fact they have responsibility for their womb, with all the power and promise that entails.  If you would take offense at seeing a kid standing up in the front seat of a car without a seat belt, then have a mocktail, sister, until you can get yourself that birth control we both know you should be using.

——-

For more information, especially regarding the scientific facts regarding even low levels of alcohol, please read this excellent piece by Tara Haelle, Backlash Over CDC Paternalism Overshadows Real Risks Of Drinking In Pregnancy, Forbes, 5 February 2016.

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20 thoughts on “It’s not worth the risk

  1. My adopted daughter is now 16 & our lives are horrible. She has 7 major mental disabilities. She rages out & gets destructive, violent almost as if she’s possessed by demons. She’s had multiple hospitalizations & RTC placements. She has no ability to control her emotions, anger. Doesn’t understand how to act socially, has no friends & cannot read or write. She’s unable to understand cause & affect, body language & so many other things. Her daily life is Hell & mine is worse. As a single parent, I’m on Effexor for depression, Klonipin for anxiety & use medical marijuana to keep myself calm. I have no friends & no family that are willing to even watch her because of her behaviors. Totally isolated. …

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    1. The experiences of families struggling to raise children with #FASD must be heard, thank you for your comment. Too many become isolated and alone just when they need help the most. I wish you and your daughter well, I hope that you can find support via some of the FASD networks – either in person or via social media. No one should have to walk this path alone. I don’t know what country you are in, but if you fill out the contact form, NOFAS can put you in touch with someone nearby, they have affiliates around the world. All best wishes to you and your daughter. http://www.nofas.org/contact/

      Liked by 1 person

    2. You are not alone. I am also being treated for anxiety and depression. We have 4 children and 2 of them have been affected by alcohol. Find an FASD support group. It will change your life. To know you have people who undrstand and can manage the behaviours is immensely helpful. Also, they can give you new ideas and help build you up when you are at your lowest. If there are no groups in your area, start one. Contact you local community supports or children’s aid society to help. You can find people who understand.

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  2. So well written and thoughtfully put together! I was going to write something similar but you’ve done it perfectly. I’m sharing tonight on fasdfamilies.com with a link back. And every other social media forum I can think of! Hope that’s okay! Way to go!!

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  3. I love you!!! 🙂 Fantastic reply, I hope it will get the attention it deserves. As a parent of a 13-year-old daughter I fully understand everything you’ve said. We want to put an FAS Awareness page on her website, e3sf.org, and I was hoping I could link to you and use excerpts?

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    1. thank you – of course that is ok – what an amazing and inspiring young woman, I will also post a link to her webpage on our blog under the FASD Role Model page.

      Liked by 1 person

      1. Oh that’s so nice!! Thank you! I enjoy reading your website. It still amazes me how the stories of FAS kiddos and families are so similar. I’m like yes! That’s so us!

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  4. What a beautiful find! May I print 20 copies to share with my chemical dependency professional trainee class on pharmacology? Your words convey much more than a textbook ever could.
    Thank you.

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  5. In the US, students exhibit AD/HD and FASD. These kids are labeled trouble makers and bad kids. I see the frustration in their eyes. The connection that is not made and emptiness after the consequence is given. Americans need to realize FASD is real and doctors need to support diagnosis at birth.

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    1. That frustration in their eyes is so heartbreaking, but it is so important you ‘see’ it is there. Diagnosis can change lives…sometimes it’s not possible to diagnose until they are older, but the sooner the better for all. And even if they don’t have a ‘formal’ diagnosis, if FASD is suspected, the parenting strategies and various therapies can be used – many of them help lots of kinds of kids, not just those with FASD.

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