Stigma

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By @FASD_Mum

On 2 April World Autism Awareness Day was celebrated in ways big and small around the world.  It made me pleased to see the ‘mainstream’ rally behind this condition.  President Obama issued a proclamation that said in part, “Every person deserves the chance to reach for their highest hopes and fulfill their greatest potential…Today, and every day, let us reach for a future in which no person living on the autism spectrum is limited by anything but the size of their dreams ‑‑ one in which all people have the opportunity to live a life filled with a sense of identity, purpose, and self-determination.”   There were walks/runs/bake sales/educational ad campaigns. Mainstream schools wore blue for fellow students with autism.  In the UK a new tv series, The A Word, is featuring a family as it struggles to come to terms with the full impact of their son’s autism diagnosis.  It is fantastic that a wider group of people are learning about the condition, that kids are being included in schools and other opportunities.  It’s overdue to finally see those with autism recognized for their many talents and very encouraging to see emphasis put on the need for more research and deeper understanding of this still confusing condition.

But here is a thought:  FASD is believed to be as prevalent as autism spectrum disorders.  Now ask yourself, how many bake sales and walks/runs have you seen for Fetal Alcohol Spectrum Disorders?  How many kids with FASD do you know about in your child’s school?  I am willing to bet, none. Zero.  Zilch.  And yet, statistically, they are there.  In fact, many kids with FASD are misdiagnosed with autism, as our son was at first.

FASD is a spectrum of conditions that includes brain damage and a range of other physical disabilities, a condition that we know is underdiagnosed and widespread – a spectrum affecting as many as 2% of our children, and yet we as a society, as a community, ignore it?  Why?

Stigma.

This isn’t a condition with unknown origins. There is one cause for FASD.  And it hits us hard, right in the gut of our pub culture.

At some time a woman (who may or may not have known she was pregnant) drank alcohol (either because she wanted to or because she couldn’t stop herself) and that alcohol crossed the placenta and burned its way into her baby’s future.  With this condition the cause and effect are perfectly clear.  What is not understood is why sometimes the damage can occur with very small amounts and why in other instances even with a great deal of exposure the damage is not there.  People worry about the brain damage caused by the Zika virus, and accept suggested preventative steps, but no one wants to talk about alcohol and pregnancy – this 100% preventable major cause of brain damage.

As a result of not wanting to address the irrefutable, black and white, scientifically proven cause and effect, society ignores the need to help the innocent children, young adults, and adults with FASD.  To address the issue, we have to reexamine our own role in its root causes.  This is deeply uncomfortable for a society that prides itself on freedom of choice.

Every conversation in the UK about why more is not done to address FASD starts with, “We don’t have the statistics.” Every time parents seek help from professionals, from schools, from local governments, we are told, “We don’t know about FASD.”  “We don’t have services in place for FASD.”  “We weren’t trained in FASD.”  “We don’t have the funding.”

Well, why not?

Recently the US Centers for Disease Control took a leadership role and advised women of child bearing age to use birth control if they are having sex and drinking, and if they are not using birth control to avoid alcohol.  This common sense advice created an international media firestorm (fueled in part by their own ill-advised graphic designs).  FASD is only ever reported in the news when something like this flares up.  Suddenly any of us who try to support commonsense advice are accused of trying to patronize women, to take away their choices, to view them only in terms of their wombs.

Or the media responds when a really tragic case comes to the fore – an adult with FASD who is unable to read, a young adult with FASD who tries to murder his dad in a rage.  These tragic examples do exist, and are very sadly real.  But not everyone with FASD is affected that severely.

Most people have no idea that 2% of the population is potentially somewhere on the spectrum.  Most people don’t know that FASD can take many different forms, that quite often there is overlap with other conditions – that child you think has ADHD or autism may in fact have been affected by alcohol in utero.  Or maybe that kid who is always ‘trouble’ or that relative who is ‘irresponsible’ is walking through life with a hidden disability.  Without wider coverage of the range of the spectrum, people don’t see the problem at the less extreme ends.

The stigma and shame is hypocritical of a society that seeks to suppress the science and rejects the medical advice from the UK Chief Medical Officer, the US CDC and the American Academy of Pediatrics and other national and international expert bodies.  We can’t simultaneously refuse the advice and blame the women.  We can’t give half-assed ‘guidance’ and sneer at those women who admit to having had alcohol in pregnancy.  Those birth mothers who come forward are among the most determined and courageous women I know.  They stare down the stigma in their efforts to seek help for their kids.

The fact of the matter is, this issue crosses social boundaries.  Young professional women are among the growing population of binge-drinkers.  Whatever people think they know about women who have kids with FASD needs to be tossed out the window.  It can happen at that table where you, me or any of us are laughing, joking, flirting as it can in a darkened room where an abused woman is drinking to mask the pain.  It is never intentional.  But our societal ignorance is.

And let’s clear up something else.  It’s never the kids’ fault: not if they are born prematurely, not as they wrestle a little too hard at play group because their sensory perceptions are messed up, not as they push some kid over on the playground when they are overstimulated, not as they steal candy from the shop because they wanted to please a friend, not as they skip school to self medicate with drugs or alcohol, not as they get into a public altercation with a police officer as a young adult because they became so confused they lashed out, and certainly not when they confess to a crime they didn’t do because their brain filled in what they thought the interrogators wanted to hear.  FASD is a lifelong disability.  We need to talk openly and honestly about it.  Just because the kids grow up, doesn’t make their brains any less affected.  I am really tired of a society that cuddles kids with disabilities when they are toddlers but locks them in jail when they are in their 20s.

Yes.  Kids born with FASD grow up.  And if they do not receive proper intervention at a young age from parents and carers and schools and doctors and therapists and friends and family members who understand the underlying brain issues, they often grow up to have secondary issues that are devastating.  They often grow up to have addictions, trouble with the law, and lives filled with crisis.  Desperate lives, attempts at self-harm. Suicide.  Tragedy after tragedy can possibly be avoided with earlier intervention.  We are told there is no money, and yet no one says there’s not enough money when they slam the expensive prison door on a young adult who did not need to be there, a kid who was so medically misunderstood all his or her young life that he or she ended up in prison because we as a society couldn’t face the uncomfortable facts of FASD.

The good news is that across the UK, and around the world, there are pockets of parents and carers and educators and medical and other experts who are seeking to chip away at the stigma (please see the ‘resources’ section of this blog for some links).  There are courageous people like an inspiring birth mum we met who wiped away her tears, swallowed her pain, and told us about her daughter’s deeply tragic attempts at suicide and her subsequent successes at overcoming that dark period, marking 1-1/2 years of sobriety and pursuing positive life choices.  The mum had no idea that her daughter had been affected by her moderate drinking while pregnant until she learned more about FASD a few years ago. As a group we shared best practices, empathy, and hope.  Through this sharing of experiences, maybe some other kids may be able to avoid the worst of the valleys.  Through these sorts of informal support networks we amateurs are organically responding to a need that should really be addressed on day one of an FASD diagnosis by those experts who know how to support our families.

FASD – I will say it again in hopes the vast import of this statement sinks in – FASD is believed to be as prevalent as autism in our society.  By saying this, I don’t mean for a second that less should be done for those with autism, on the contrary, I believe more should be done for them.  And much, much, much more needs to be done for those with FASD.  Let’s toss out the stigma.  Let’s talk openly about it.  Let’s let our kids name their condition without shame so they can understand themselves and help explain their needs to the society around them.

It will take you, me, teachers, doctors, reporters, policemen, lawyers, judges, store clerks, bartenders, and most importantly of all the women staring into those wine glasses and pints and the men sitting with them, to get on board, to get informed.  We need to properly screen for FASD.  We need to lose the stigma, get the funding, and push our elected officials and the medical experts to provide the protocols and services needed to support the innocent and overlooked population of people who are on the fetal alcohol spectrum.  We all want our kids to have good lives.  A caring society does not ignore its most vulnerable.

My son did not do this to himself.   He is as innocent as a child who might have been run over by a drunk driver.  Don’t deny him his future.

There is a day some groups have designated as FASD Awareness Day – it’s 9 September – the 9th day of the 9th month, chosen to remind people to stay alcohol free for the 9 months of pregnancy.  And there are groups that promote positive awareness campaigns, like the Red Shoes Rock campaign.  But we need a wider platform for our cause.  And we need world leaders to issue proclamations for our community too.  Leaders speaking out on this issue can have great power to change lives, since FASD is one form of brain damage that is 100% preventable.  Our kids must be able to own their diagnosis, without stigma, so they can walk through this world with a sense of identity and purpose, to borrow President Obama’s words.

 

 

 

 

 

 

 

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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.

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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.

No safe level – critics miss the point

If you are pregnant or planning a pregnancy, the safest approach is not to drink alcohol at all, to keep risks to your baby to a minimum.

By @FASD_Mum

The UK Chief Medical Officer said today that “there is no ‘safe’ level of alcohol to drink while you are pregnant.”

This is part of the roll out of draft guidance that has been made available for public consultation through April 2016.  This statement brings the UK in line, finally, with most major advanced countries.  For example, in 2005 the US Surgeon General stated categorically that “A pregnant woman should not drink alcohol during pregnancy.”

Already the naysayers are chiming in, talking about a ‘nanny state’ and preparing to dismiss this guidance based on what they say is a lack of evidence.

I have some questions for these critics.  Would you allow your child to go careening downhill on a tricycle without a helmet?  After all, the chances the child might fall depends on many factors and even if he or she did fall, they might not actually suffer brain damage. Would you drive around town with your infant unstrapped into a car seat, since the chances of an accident are slim and whether or not this might result in irreversible brain injury depends on the speed, type of impact and other variables?  Would you put alcohol directly into your baby’s bottle?

Of course not.  We take precautions to protect our children.  No responsible parent wants to knowingly harm a child.

Our 11-year old son has Fetal Alcohol Syndrome.  His birth mother probably never imagined that the alcohol she swallowed would burn its mark onto the rest of the child’s life. True, there was a chance he might have been all right.  But he wasn’t okay.  Alcohol is a teratogen, “an agent or factor which causes malformation of an embryo.”  Specifically, it can cause damage to the developing central nervous system and other systems. Prenatal exposure to alcohol caused our son irreparable damage and set him on his path with severe challenges long before he first saw daylight.

As you peruse today’s news, you won’t be hearing any sort of detail about the lifelong effects of this brain damage.

You won’t hear people talking about the anguish parents feel, knowing that parts of their child’s brain were damaged forever before he took his first breath.

You won’t hear about the heartbreak of a child who faces debilitating confusion and frustration every day of her life, because her mis-wired brain leaves her unable to respond appropriately to the daily stresses and strains of life.

You won’t hear about the tears of parent and child when the pre-teen’s ‘fight and flight’ part of the brain wrestles control from the higher levels of functioning, leading to world class tantrums, confusion, sometimes aggression.

You won’t hear about a young adult locked up in prison for failing to understand the consequences of his or her actions due to brain injury inflicted by a pregnant woman who thought ‘just one more’ might not matter yet again.

You won’t hear about an adult who struggles day after day just to function in our complex society, some days unable even to gather himself or herself enough to try to talk with others, unable to manage bills, friendships, work.

You’ll hear mostly about a bunch of twenty-somethings who don’t want to face the ever-afters, but who just want to party.  You’ll hear that tragically some people cannot simply stop and sadly this is true (but you won’t hear, I will bet, suggestions for any increased support for those who need help breaking their addictions).  You’ll hear from interest groups who want the good times to keep rolling cash into their tills.

I am no saint, and this could happen to any woman who drinks, has sex, and doesn’t use reliable contraception.  The point is not to have a ‘blame & shame’ game.  The point is that  these guidelines do matter. Immensely. Women need to understand. The guidelines should not be dismissed.  They need to be amplified.  They need to be posted in pubs and on labels.  Kids need to be taught this in school. The message needs to be unambiguous.

If you would not let your child play with an electric socket, if you would not let your child climb high in a flimsy tree or tread out far into the waves at the beach, you should welcome the clarity of today’s announcement.  The UK’s chief medical officer has said you can avoid with 100% certainty one possible horrible outcome.  The same cannot be said even if your kid wears his helmet or is strapped into her car seat.

Why wouldn’t you take this precaution if you possibly could?  If you were to spend a day in our child’s shoes, we are sure you would agree having a ‘mocktail’ is but a small price to pay for securing the best chances for your tiny loved one’s lifetime.

It is a proud day for the UK government.  I would add that government has a concurrent responsibility now to put in place further support, advice and recommendations for addressing the needs of those with FASD.  There is a large segment of the population struggling with this disability minute by minute, and education for and outreach to medical professionals, educators, and other elements of society is also overdue.  Let’s not quibble over this guidance.  Let’s get onto addressing the needs of this innocent and hurting segment of society as an urgent and overdue matter.

Please send your thoughts and advice on the Chief Medical Officer’s guidance here, via the public consultation document.  Those affected by FASD must be heard on this and related matters.