Sensational Media Hurts Those With FASD

we-love-a-child-with-fasd-2By FASD_Mum and FASD_Dad

Warning: there are extremely offensive and disturbing quotes from the media in here about children and people with FASD, about birth parents, and about those who adopt complex kids.  We do not endorse any of them.

We were feeling good about the holidays.  Better than usual.  This is a hard time of year for many affected by FASD, and our family too has struggled through the seasonal merriment and mayhem over recent years.  During the 2-1/2 years since his diagnosis, we have taken great strides to better understand and support our 12-year old with Fetal Alcohol Syndrome and he also is better understanding himself.  Those moments that used to spiral out of control are becoming, for the most part, containable.  The tension that weighed us all down is lifting.  It’s still not easy, but with joy, love, informed support, (medication), and lots of sensory toys and play, we are getting there.

Yes, we were feeling ok.  And then an article from the Daily Mail popped up in our newsfeeds.  It slapped us in the face with its sensationalized headline and a picture of a child model screaming like a banshee.  “They open their homes to adopt – then find they’ve taken on youngsters who wreck their family. Why do we continue to BETRAY loving parents…”

An all-too-uncommon article about FASD in a major British newspaper is normally something those of us who push hard for greater attention to this issue celebrate.  But not all media is good media. This article lets down families living with FASD that need help.  It betrays children awaiting adoption by discouraging prospective parents.  It is destructive, contributing nothing positive to the national debate.

The article talks about how “[t]he children being adopted now are the offspring of our drunks, our derelicts, our damaged and our junkies.”  The result, it says “is an untold scandal, blighting the lives of thousands of well-meaning families.”  It invokes demonic imagery, talking about how educating these kids can be “the Devil’s own task.” It talks about how a child might be cuddled sweetly on the sofa and then without warning suddenly leap and “hurl herself” at her adoptive mum, hitting her, screaming “whore” and “bitch” and other “dark, dark words.”  The author warns “That might not happen tonight. Maybe not tomorrow, either. But it will happen again; it always does” as if there is nothing that can be done to help.  The article says nothing about the love and light our kids bring to our families, nothing about their talents and the contribution they make. No. In this piece, all our kids are demons who destroy.

The article does highlight the pressures some families face and it addresses the lack of support and funding for these families, but in doing so it repeatedly implies families who adopt kids with FASD are doomed. The clear implication is that people should not adopt, especially not the children of “those” people.

The article lit up the passions of social media.  At the time of posting this blog post, it has been shared more than 2,600 times (and counting), with more than 1,200 comments.

The sensationalism of the story was abhorrent enough.  But it is in the comment section where one can see the depth of prejudices we have to overcome if we are going to get society to deal with this hidden disability.

We are posting below some of the excerpts of those comments.  We can’t just dismiss them because we might not like the political leanings of a media source.  If these comments were written about any other segment of society we would be outraged.  We need to call them out.  We need to face them.  We need to debunk them.  These bigotries underlie the surface of polite discussion here in the UK on topics related to Fetal Alcohol Spectrum Disorders.  They fuel the stigma that stops our children, our young adults, adults with FASD, and their families from getting the support that they need.  We should never be so grateful for media attention that we allow this sort of article and these sorts of comments to go unchallenged.

Ready?  Here is what some of the dear British public thinks after reading this piece:

“Just put the little so and sos down.  Good for them, good for us. Cheap too.”

“Adopting an evil child is God’s way of punishing you for going against his wishes.”

“Trash begets trash that gets circulated around.”

“Some children are uncontrollable, and no amount of love and care will ever change them.”

“If a woman is a drug addict or an alcoholic, and generally a risk as a failed mother, she should be forced take medication to prevent her having kids.”

“It’s hard but morals, ethics and our way of dealing with the dregs of society needs to change. Why should happy, well balanced families be put at risk for being well meaning? These children have no future with a normal family.”

“I worked as a clinical psychologist for 20 years … I would never, never adopt a child nowadays. Not even a newborn. They are, essentially brain-damaged and cannot typically function in a normal family.”

“There’s no way I’d adopt, sorry… I don’t want to be beaten, stabbed or killed, thanks!!”

“Don’t do ‘everything possible’ to keep a premature baby of an alcoholic or drug-addicted mother alive, just to prove it can be done.”

“The genetics always came out eventually.”

“The problem today is that parents are not allowed to discipline a child in a way that would achieve obedience so the child becomes uncontrollable.”

“Think twice before adopting these kids. Fostering is like a test drive. If you don’t like you can always return to sender.”

Let’s be clear.  Kids with Fetal Alcohol Syndrome are innocent.  They have brain injury and other physical disabilities that are the result of exposure to alcohol in the womb before they ever drew a breath.  THEY DID NOTHING WRONG.  They are here, among us.  There are many, too many, in need of a lasting, solid home.  Yes, they will grow up to be teens, young adults and adults. Getting them the right support and stability matters greatly to their lives – it can literally change the course of their lives.  It can save families and relationships if they can be reached while they are young.  It can save them when they face the struggle of leaving home and trying to live independently.  There are no guarantees, but it matters.

Britain likes to think it is a caring community.

So, step up.

Experts estimate (because proper studies haven’t been fully funded and conducted) that there are as many kids out there with FASD as there are with autism.  Provide the information about prevention in the schools, in the doctor’s surgeries.  Stop faffing about whether or not your grandmother said drinking a pint gave you iron and follow the latest advice from the UK’s chief medical officer (who presumably has more scientific background than those urging you to drink up):

“If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.” 

Stop thinking that it’s only those with addictions and living on the edge that have kids with FASD.  Accept the fact that those expensively dressed young educated, professional women who are increasingly binge drinking are a huge part of the problem too.  Provide help and assistance to at-risk young women and young mothers.  Fund the addiction counselling programs.  Provide proper healthcare.  Proactively fund and encourage early diagnosis of FASD and the related 400+ conditions that can co-occur.  Educate the social workers, schools and the other professionals to spot kids at risk for FASD earlier rather than later, once the secondary behaviors kick in (too often as a result of the lack of early support and understanding).  Get the parents, foster carers, special guardians, adoptive parents, midwives, teachers, doctors, educational psychologists, all those around the child who need it all the information they deserve.  Discuss and provide access to the therapies and medications that help some.  Put it all on the table, don’t sugar coat anything.  Face this epidemic as a caring society should.

We deserve a proper national conversation.  Together, we need to stare down those nasty hidden prejudices and dispel the stigma that is holding back the help we need once and for all.

Yes, absolutely, it’s important to highlight the struggles of children with FASD and their families, and the problems in the adoption system.  But we should never blame the children for their condition, portray them as demonic monsters beyond help whose only contribution to a family is to wreck it in the way this article chose to present them.  We should not trample the feelings and accomplishments of those young adults and adults with FASD whose lives are courageous and challenging.  If they are hurting or stumbling, as a society we need to lift them up and not knock them down – especially at times when their parents cannot fill that role for complicated reasons.  It takes a village.  We are that village.  We need to open doors of opportunity for this vulnerable population, not prepare more prison cells.   We should not scapegoat and shame birth-parents, but work cooperatively to help prevent further kids from being born with this brain injury.  We need to provide respite and compassion for those who are on the frontline caring for and nurturing those with this condition.

Life can be tough in our households.  Sometimes brutally difficult and even scary.  Certainly overwhelming and tiring.  We do need to tell that story so we can show that all families of kids with FASD need more support, that schools need resources, that the transition to adulthood is rocky and filled with dangers.  We need to show that support is needed and isn’t there. But in telling that story we must aim for positive change.  Because at the end of the day, beyond the frustrations, hurt and pain, that is what we all want, positive change.

We love a child with FASD, and he and others like him deserve our respect.  He is entitled to a chance at a life with dignity in a compassionate community to which he can contribute and from which he deserves support.

[Oh, and for what it’s worth we reported that comment about “putting them down” as inciting violence and hate.  Thankfully it seems to have been removed.]


Please see our resources section for more information and links.

Please also see the National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK) response to the Daily Mail article

See also: A serious point about lack of post-adoption support is lost in what is a deeply unpleasant, slanted piece by Caoilfhionn Gallagher, Doughty Street Chambers

Reaching Out After an FASD Diagnosis

We could no longer pretend everything was 'normal'We started to reach out about our son's FASD diagnosisAnd that changed everything.By FASD_Mum

We all want to be ‘normal’.  We want our kids to be loved.  When things go wrong, our instincts are to put on a smile, pretend ‘there’s nothing to see here,’ and to brush past staring strangers.  But sometimes that just doesn’t work anymore. This post is about our journey in reaching out to others about our son’s FASD diagnosis.

The issues that made that process of opening up so difficult began long before we had that acronym to hold onto.  We fought hard to adopt our son.  We had to wrestle with the complicated system.  We also had some of our closest family members and friends challenge us regarding the risks involved.  As older parents we were aware there were risks.  We had faced this head-on earlier.  Despite the odds, we did not do any of the advanced tests during my earlier successful pregnancy.  We were ready then to love any child who came our way.  We approached the adoption the same way.

And yet, I deleted some photos from my camera the very first day we met the friendly, determined and curious child who would complete our world.  We were entering the interim adoption period while we were waiting for things to be finalized and I simply could not handle re-opening those horrible discussions again about the risks and I knew those photos would raise eyebrows.  That night in the hotel we had one of the deepest conversations of our marriage.  I remember looking intently at those pictures, saying something is not right.  We had to face this, we didn’t turn away.  I remember a warmth in the room, a closeness.  The next day we asked some follow up questions in the baby home.  We were told, no, he doesn’t have Downs Syndrome.  We had wondered about this from the photos, although it wouldn’t have changed our decision.  (We now know we were looking at the full facial features of Fetal Alcohol Syndrome).  They asked if we wanted to see another baby.  We declined.  We both knew without a doubt we were not going to change this course.  This child who had so intently looked into our souls, he would walk his path with us.  We would hold his hands forever just as we once promised each other.  We would not be shopping for a baby.

The early post-adoption years were full of therapy after therapy after appointment after appointment.  We asked the hard questions, had rounds of genetic tests.  Nothing specific was pinpointed.  Not once did the possibility of Fetal Alcohol Syndrome pop up and we cannot understand why we ourselves didn’t think of it.  People understood he had sensory issues and various physical issues.  It all seemed natural for someone who had been in an institution for 16 months.

Life at home grew harder as our son began to grow.  We used to be very social.  We used to have lots of friends over for dinners.  We used to go out often with kids or without.  But as time went on, it became harder to think of a babysitter who ‘could handle’ looking after our youngest.  It became harder to think who wouldn’t mind it if something awkward happened while we were out somewhere.  It became harder to find energy to focus on ourselves as a couple.  It became harder even to talk about it with family.  Our parenting wasn’t working, something was wrong.  Bedtimes would go on for hours.  Time outs would become raging battles.  We were unable to get through even one store without some sort of holy hell breaking out.  But we couldn’t really talk about it, as we had assured everyone we understood the risks and we were prepared for whatever happened.  We would say we’d had a ‘hard day’ but somehow that was simply not translating into any kind of action from those around us.  Once when I complained someone said, “Well, why did you have kids then?” That one off-hand comment shut me up for another year or two.  Still our son was young enough that an hour at a playground screaming wildly around the walkways on his scooter at 100 miles an hour and some death-defying swinging was still a guaranteed release.

So then, The Diagnosis.  He was 10.  We had resisted the earlier autism diagnosis.  Autism had been discussed from those initial days, and he just didn’t quite fit the profile.  But this Fetal Alcohol Syndrome diagnosis was different somehow.

“Irreversible brain damage” is a phrase that can knock the air out of your body and make you wonder how you will find the strength to get the next breath. It can send all kinds of heavy doors slamming down on a future that you once dreamed for your child.  To know it could have been avoided can leave you gasping from the cruelty that exists in this universe.  At least, that is what it can feel like at first.  It is a hard, hard thing to hear.

All those test scores and numbers and percentiles pile up.  They seem so damning and so cold.  Even as they rattled them off after their imperfect testing sessions, even as we fought back knowing these figures did not capture our son’s abilities and strengths, even as we were being bombarded with some of the most horrible news we could have been given, we were already planning how to package this for the people in our world.  We wouldn’t tell them everything.  No need for them to know that part of it.  We would wait (a year, it turned out) for the full report, then maybe we could go into more details.  We did share some of it, carefully, with a very small circle (leaving out some key numbers, leaving out the worst of it).  Having a diagnosis did help especially with those family members who may have been thinking he would just ‘grow out of it’ or that he was just ‘being naughty.’  But none of us, not then, really understood yet what a diagnosis of FASD meant.

The process of beginning to understand how our son’s brain works took time.  Figuring out how to explain that to others around us was daunting.

We were stunned and we grieved. We swallowed the mind-boggling implication of the statement we were told as we received the diagnosis that in the UK, “There is no protocol for post-diagnostic support” for a person with FASD.  Having just been told our son had brain damage, we were simultaneously told there is nothing being offered to help us move forward with that news.  We stared at the reports and then put them away.  I think I slid into a mild depression, which isn’t an easy thing to do when there is a special needs child in our home needing constant attention.

Meanwhile, we took to the internet.  We googled. And googled.  We found some of the national groups via our google searches. (That too was confusing as there are several networks even in a place as small as the UK, all with similar names, similar purposes.)  Despite having been advised by UK professionals not to look at international information that might not apply here, we devoured it all.  Science crosses borders.  The information became overwhelming.  I started an online “Pocket” folder to keep track of the websites – with tags so I could search more easily for different information (FASD brain, FASD education, FASD prevention, etc).

We started with the school which had zero experience with a child with an FASD diagnosis. It became obvious we needed to get them information quickly. We prepared a whole binder full of some of the best practices.  (Some of the articles are here.)  While there is a balance in not overloading the very busy educators, no one in this school at least was going to have the excuse that they didn’t know where to find information.  We started to talk with the teachers about FASD nearly every day at drop-off and pick-up specifically about some of the tactics we were learning.  We worked cooperatively. We made some decisions when our son was in Year 6, facing national tests that the schools had been aiming toward since those students walked through the door.  He did not take the SATs.  We had a long relationship with the secondary school, since our kids both attended every holiday workshop they offered. We met early on in the spring with the SENCO at the secondary school he would be attending the following fall, again, armed with a fully loaded binder of information.  We planned his transition carefully.

But even still, we were floundering at home.  Everything was hard.  Our days were chaos.  We were concerned about the impact of this atmosphere on us all, including especially how it might be impacting our older son.

My husband and I had a serious talk about how we could no longer pretend everything was ‘normal.’

This was a key moment. I am sure I was pushing him a bit out of his comfort zone, but we agreed to widen the number of people who knew about our son’s diagnosis.  I needed this.  I was becoming too overwhelmed.  We were overwhelmed.

We started a secret Facebook Group.  People have a lot of negative to say about social media, but it’s a tool that can be useful.  For us, this was a key turning point.  This was the moment our lives began to feel a bit less lonely and really, it’s a simple thing to do for anyone who is on Facebook already.  Facebook has a feature that lets you add selected people to a ‘secret’ group – this is different than the closed groups of the various FASD networks.  For our secret group we chose who we wanted to start sharing information with.  We chose a mix of family, friends, a few colleagues, people we know who have children with special needs, and others.  This was our first message to the group. We had an overwhelmingly positive response.

“Dear friends: They say ‘it takes a village’ and this is our virtual village. We are inviting you to join this closed ‘secret’ group because you have shown over the years your love for our son and our our family. We have recently learned from the UK’s leading expert, that he has fetal alcohol syndrome, the effects of which have been compounded by early neglect… He has neurological damage that has resulted in difficulties in his ability to perform executive functions (i.e. – more abstract thinking). This condition, they say, is severe and lifelong. He functions very well with support. He is mainstreamed in public school and is performing well, though at a lower level than his age group…He has amazing strengths – he is an exceptional gymnast, he is great at music/dancing/singing (we have been told he may have perfect pitch), and he excels at other individual sports, esp. swimming. He is a generally positive and loving child. He has ADHD, without the inattentive side of it. He does not have autism due to his social reciprocity abilities, but he does have some restrictive repetitive behaviors. Our purpose in setting up this group is to allow us to discuss things a little more freely, using FB to our benefit, without having the full group of FB friends and colleagues see this discussion, as we want also to respect his privacy and dignity. (As a ‘secret’ group, only members can see the group, its members or its postings.) We have been struggling as a family for a long time now. We know we need help. Part of that is widening the number of people we share this journey with. We are not trying to exclude anyone from this discussion, but we don’t want the numbers to get too big, or we will be replicating FB itself… So we welcome your thoughts, insights and fellowship along this path.”

We also started to squeeze in one small social activity.  We started to attend coffee mornings on Friday mornings with a group of parents from the school. We began to help initiate these as well.  The purpose is not solely about FASD, but it allows us time to chat informally.  Some family members began to come.  Our network grew a little stronger.  This group includes the men who came to school with red-painted nails when they heard our son was being teased for having red nails on a school dress-up day.  Heroes, one and all.

We started to blog. We decided we had been having so much trouble finding all the resources that we might as well make that research available to others.  We also decided we needed a way as a family to further develop our own thoughts and to process the experiences.  The very first entry, “Meltdowns,” was explaining how we finally understood our son’s brain works differently:

“Spectacular meltdowns occur almost daily – things sailing across the room, accompanied by increasingly spicy vocabulary, gestures, and appalling rudeness. Deep distress and frustration boils out and over us all. But now we know none of this is heartfelt or intentional on his part. His brain just can’t stop it at this moment. The important thing is not to hold a grudge, because our child has a remarkable and admirable capacity to move on from such moments, to spring back with a great big hug and an ‘I’m sorry.’”

We started to attend support groups. This was another pivotal moment which we wrote about in a post about “Support and Resilience”.  Suddenly, even our worst case scenarios were not so scary.  We met people who have been through those worst cases and told us there is always hope.

We continued to arm both of our children and our family with information about FASD. We have gently been giving our younger son more words to understand himself.  We have given his older brother more detailed information.  We don’t belabor any of this, but we are educating our family unit with the information we all need.  Our older son has a space on the blog where he can write when he wants to.  An auntie has joined as a guest blogger as well, addressing issues of how to engage extended family in these discussions.  Some of her posts have become the most widely shared, proving so many of us need help in engaging extended family.

We started a local support group. We talked openly with the pediatrician, and viewed her as an ally. She too felt the need for much greater education and resources in our area. She encouraged us to start a local support group.  She attended our first meeting and shares our information with relevant families.  The group started small, with only three people.  A few months later we now have approximately 20 people and we are all learning from each other.  The network is growing as more people are aware we are here.  We are becoming tied in with regional services for potential adopters, other groups with special needs kids.  Our posters are now hanging in local hospitals and doctors’ offices.  We are working collaboratively where possible.

We have become tied into national and international networks, including adults with FASD. This is the most significant change for us.  To have access to adult role models with FASD, people who have been there and who can tell us what our child is not yet able to explain….wow.  That’s mind-altering, horizon expanding power  and insight for we parents of younger kids.

This weekend we ran an educational table about FASD at a school fete at our sons’ old primary school, along with a game to get kids to come over.  We made a simple display focused on the theme that different brains work different ways, and it’s okay to be different.  We handed out flyers, announced our next support group date.

People tiptoed around it all a bit. It’s a heavy topic for a festive environment.  But we know it’s important to start slowly and build step by step.  It felt good to have our little one there, proudly helping.  It was wonderful when both our sons were helping the little kids with the games.  It felt a little bit like we’d come full circle as a family.  We entered that school so many years ago, with one child that none of us really understood.  And here we were, strong.  Confident.  Committed.  If even one person filed away the messages, and if someone one day reaches out for help or avoids a drink while pregnant, then it will have been well worth a hectic day in the damp and cool British summer.

Our family is still on a journey.  There are others who are so far ahead of where we are in our understanding, others so much better able to help or give advice.  We don’t claim to have the answers.  We are barely able to handle the still increasing challenges in our own home.

I am not trying to imply this path is easy.  In fact, it has been unbelievably hard lately.

But, even then, even when it feels like the weight of the world has landed just right smack on top of your weary and battered shoulders, even then it’s possible to look outward a little.

Finding the courage to open up to ourselves, our family, friends, colleagues and community about these struggles has in fact helped us immensely.

We are getting back more from this process than we give.  We can see past the walls we felt slamming down during those early post-diagnosis days.

There is Norwegian saying, “the path is made by walking it.”  We don’t know exactly where this all is heading, but one thing is certain.  Moving forward is so much better than standing still.

With a little one who is constantly changing, who flies and flips with great zeal into every day, whose life is a rollercoaster of emotion and impulse and love, we simply can’t be static.  For him, we have to be brave enough to tell the world who he is, where we are at, and what we need to make it through the moments, through the days, through the stages.  And to reach out to others to find out what we don’t know.

If it ‘takes a village’ to raise one kid, then it is also our job to contribute to the community.  In the process it’s the basis of a good life, the kind of life our parents taught us to live.   The kind of life we are teaching our sons to live.  Beyond the fear.

If you haven’t done so yet, go on.  Take just one step.  It feels good.

———————–

Just read this also related piece about the added challenges of reaching out from the perspective of a birth mum – The Look of Horror When I Tell You My Child Has FASD.  The stigma of this diagnosis must be overcome.  We have to break through these walls to help our kids, and to protect those yet to come.


P.S.  This is being posted on Father’s Day.  My sons and I are oh so very lucky to have such a great man in our lives.  I can think of no better way to celebrate Father’s Day than to reaffirm the joys of this (somewhat daunting) journey with a man we all love dearly.  He didn’t get a card, life’s a bit nuts, so here’s to you @FASD_Dad!

 

I Hear the Pain of the FASD Community

 

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By @FASD_Mum

Social media brings us together.  It provides bridges, facilitates communication, gives us a way to defy time zones and social conventions.  For the FASD community, it lets us find others who have insight and experience with the many ways different lives are affected when a fetus is exposed to alcohol before its first breath.  Social media lets us speak.  It helps us to learn more.  In general, it is a useful tool for us all.

But this holiday, social media has been inadequate in the face of the pain some among us feel.

The young woman with Fetal Alcohol Syndrome who is struggling to overcome her own addictions but cannot find help.  She keeps getting turned away from A&E departments and says she is not sure she can bear it anymore.  I hear her pain.

The frazzled mother whose overwrought child with multiple diagnoses who cannot sit still long enough to enjoy the pleasures of the day and so turns destructive because he lacks the ability to explain himself.  I hear her pain.  She’s too tired, too beleaguered to feel anything other than ready to “give him back.” (I hear his pain too.)

The mum who feels like “the worst mother ever” because her youngest with FASD had a massive meltdown and her older son without FASD didn’t get to have a “normal” Christmas.  I hear her pain.  I hear both of those boys’ pain.

The mother who has to console her child after the grandmother yet again berates the child and the parent for allowing “bad behavior,” ignoring all the prep talks explaining the condition.  I hear her pain.

The young person with FASD whose stepmother refuses to let her dad come to see her on Christmas and whose brothers try to protect her from the stepmom’s rejection.  I hear her pain.

The adult with FASD who despite being a renowned advocate still faces rejection from his own family and friends.  I hear his pain even as he helps others.

The parents discussing at what point the earlier self-harm turns toward something more dangerous needing intervention.  I hear their pain.

The parents and carers who use social media to vent, and vent hard, about how impossible their lives have become and who seem short on compassion as they blame their kids.  I hear their pain.  (And maybe I hear their children’s pain loudest of all, those misunderstood kids who don’t yet have voices in our forums.)

The birth mum with FASD trying to break the cycle, but who is denied time with her own child more than a few visits each year. I really hear her pain. It stabs through me.

The adults who struggled their whole lives and only received their diagnoses after some big crisis, a run-in with crime, jail time, a career or relationship that crashed and burned, who try to pick up and move forward.  I hear their pain. There are many of these stories throughout the FASD social media.

Yes, Facebook and Twitter bridge us but they don’t bind us.  We are a community, but we are not by each other’s sides.  Most of us have never met. Being on FASD social media this Christmas was like following news from war zones.  I felt like a voyeur watching the bombs fall, hearing the “live updates,” imagining the realities on the ground, concerned but unable to change the events transpiring on screen. Houses exploding in chaos, kids screaming, parents crying in corners, young adults taking flight in the streets.  I found myself posting a suicide hotline on one page on Christmas Eve, empty and inadequate, wondering if some day my son might be reaching out to strangers like that.  Fearing the worst.  Feeling too small to help.  (I do know some of the professionals on the list were reaching out behind scenes, but it was heartbreaking nevertheless. And scary.)

The reality is that our growing FASD community IS in pain.  Help is needed urgently and desperately.  Lives are at stake.  Futures are in jeopardy.  Right now.  The statistics show that somewhere between 3-5% of the population has some sort of brain injury due to exposure to alcohol in the womb.  These are our friends, our family, our neighbors – those kids in our schools who seem unable to focus, those who are easily led into trouble, lost.  Those family members who always were “difficult,” who were forgetful and never on time.  The teens with bad tempers who drank a lot or joked too much.  They are among us, undiagnosed and struggling, feeling bad every day of their lives for some damage done to them before they even opened their eyes onto this world that lets them down again and again.  And again.  They are the ones who have diagnoses who try to do better but who lack support, advice, guidance, anchors.  They are the children struggling with FASD, whose overwhelmed parents want to help but don’t know how, don’t have the tools, have run out of strength and have nowhere to turn while their kids escalate further in such tense environments.

I hear the pain.  It runs throughout this community.  It can drown you, make you want to turn away.

But then I hear my own son’s pain, up there in his room, smashing beloved CDs against a door. I hear my own son’s pain as he just simply cannot hold it together for one more minute.  I hear my own son’s pain as he hates school, parties, playgrounds, swimming pools, cafés, car rides, scooter rides, dog walks, baths, drum lessons, concerts and any other experience that he looks forward to but which cannot meet whatever expectations he has in his head, at least until the next time when he desperately wants to go again. His pain is still raw, not nuanced as it will come to be as his emotions grow further and as his sense of himself becomes clearer.  These days I hear his pain in very graphic language that, yes, is hard to brush off despite the professionals telling me it is always best to ignore such behavior.  I hear his pain.  (I hear my pain whisper too, but I suppress it quickly.)

I fear some social media posts I have seen lately are counterproductive.  Hyping the number of kids being adopted with FASD.  News reports seemingly skewing data to make it seem like all kids with FASD have doomed outcomes despite parental input and early intervention.  This combines with stories of many who have adopted kids with FASD who seemingly were totally unprepared for the difficult terrain.  I worry that good-willed people are in danger of discouraging adoption of kids with FASD, vulnerable and innocent kids who are so in need of stable, accepting and informed families.

The stories that need to be told are dramatic enough to focus our attention.  There are people amongst us who have portions of their brains injured, destroyed or maybe even missing due to alcohol that coursed through their veins before they were ever able to cry out their pain. The damage done throughout their tiny, still forming bodies when alcohol burned its path into their developing systems, causing internal damage, structural problems.  These graphic details are not polite conversation, but they are the root of the FASD community’s pain and the suffering of our children, young adults and adults who live on this spectrum.  The distressing and disturbing behaviors and executive functioning difficulties are symptoms of hidden and serious physical disabilities.

No, it has not been a happy holiday for many hundreds, maybe thousands of people in the UK whose lives are affected by an FASD.  But this can change.  What is really needed is an open and straightforward approach to addressing these issues.  The UK has experts who can lead on these issues – they need resources, support and bigger megaphones. The new UK All-Party Parliamentary Group on FASD is beginning to form some thoughts on effective ways forward (this will be the subject of an upcoming blog post).  There are increasing numbers of educators and health care professionals coming into contact with FASD for the first time, which means that the next time they will know a little bit more and do a little bit better.  Our community is becoming more organized, even if it is still strangely disjointed domestically and out of step internationally.  Most importantly, there are powerful voices rising – those adults with FASD whose courageous leadership offers greatest hope.  People who are becoming savvy in using social media as a vehicle for change.

And up in my own child’s room, do you know what I hear?  The crashing has stopped, he has found his calm, in his own way.  Lights off, he’s in total darkness except for one glowing and soft “mood pillow.”  He has put on music and is rocking, having found his center.  He is learning how to navigate his world, because we are learning.  We are doing what we can to learn with professional help and advice from the FASD social media community.  Together we are finding ways to empower him to understand himself and his needs.  I hear his pain, still quietly internalized, but I hear his hope.  I hear his song.  I hear his tomorrow.  That is all there too.  In our lives and in the FASD social media.

I hear about the small moments of joy, of triumph.  I hear the cheers when big moments happen and people overcome.  I hear the love and I hear the determination.  It’s all there in social media.  I try to respond positively to every bit of fresh air.  My optimism needs that oxygen.  I welcome the successes, every small step of the way, every time a child rises, every time a parent finds a way forward. Every smile.  But that doesn’t mean I do not hear the rest.  And this post, this post is for those affected by FASD who are struggling.  I am sorry FASD is so cruel and society is deaf to the needs of this community.  I am sorry for such pain.  I hear you.