FASD – Not All News is Good News: Speculation about the Florida Shooter is Divisive

Blog_NewsBy SB_FASD

Far from the media spotlight, in Facebook groups and living rooms around the world, people with Foetal Alcohol Spectrum Disorders and those who support them are debating a news report that speculated as to whether or not the Florida shooter might have undiagnosed FASD. A major news outlet used this raw moment to highlight the too-often overlooked effects of prenatal exposure to alcohol. Better understanding FASD is an important topic. Earlier this month a US study showed that more people have brain-based disabilities due to FASD than have autism. Days ago an Australian study showed that people with FASD are a disproportionate segment of the prison population.

But I have never subscribed to the idea that ‘all media is good media.’ Some articles play straight into the anti-disability prejudice and stigma that exists. Our colleagues in the autism community know this well and are feeling this backlash once again, since reports are also circulating that the shooter had an autism diagnosis. Linking any condition with violent acts in this way ignores society’s failures which are by far the more salient issue in such cases. It’s easier to identify the ‘other’ – someone not like us – as being ‘flawed’ and therefore prone to such heinous acts. Whatever condition this shooter may or may not have had is not the reason why he did what he did.

An adult with FASD summed up why it is harmful to link a condition so quickly to such an emotive news event: “I don’t want this to be the general public’s mental association to FASD. ‘Oh, you have FASD? Uh-wait; isn’t that what they said that school shooter in Florida had?’ YES because from now on NOT ONLY will I be seen as ‘stupid’ or ‘retarded’ now I get to be seen as having the potential to kill and EVERYTIME I get upset about ANYTHING I will be under heavy scrutiny because ‘They said this this and this about FASD.’  I don’t understand HOW this is REMOTELY a good thing! It makes me afraid to be open about it because I don’t want to frighten people; what people fear-they destroy.”

Myles Himmelreich wrote, “This is leading to a misunderstanding, judgement and incorrect information about FASD. I am a motivational speaker, FASD consultant and FASD trainer and as such I shake my head and say ‘we still have work ahead of us’ this shows a blanket statement and will continue to misguide people to believe individuals with FASD will automatically be violent, NOT TRUE. Oh and I’m also an individual with FASD and as such I say ‘please see me, know me, support me and join me in truly understand the struggles but also the success I face every day.’”

All around the world people with FASD live lives of courage and accomplish amazing things. There are many examples of FASD role models. Sadly, the media rarely takes the time to acknowledge the good work they and others like them are doing. Instead it wakes up when it can sensationalise a story. This comes at great cost.

The US National Organisation on Fetal Alcohol Syndrome issued a statement that said in part: “We see no good reason for FASD to be discussed at all in the context of this shooting. There is no evidence of any connection between FASD and violent behavior. In fact, individuals living with FASD are disproportionally likely to be victims of violent crime, not perpetrators.”

The Minnesota Organisation on Fetal Alcohol Syndrome also responded: “Many people with an FASD and their families find it upsetting, stigmatizing, and dehumanizing to read media stories linking FASD and violence. It’s worth noting that countries with similar, and even higher rates, of FASD do not have the same issues with mass shootings that we have in the United States. This strongly suggests FASD is not the issue.”
People with FASD can have more than 400 related conditions due to damage done to developing systems while in utero and secondary issues can kick in if their primary needs are unmet. It’s a complicated mix. While FASD does not equal violence, we also should not ignore the fact that some with FASD need help with channelling aggressive and impulsive behaviours that can sometimes become quite consuming.

Savanna Pietrantonio, an adult with FASD who co-chairs one of the longest-serving support groups in Canada and who helps run an international FASD online support group Flying With Broken Wings, thinks it’s important that we use this moment for developing a deeper understanding of FASD and the powerful impact that proper supports can have on someone’s life. She said, “We’ve been the less and the least and the left out for too long. It’s too bad not everyone and even most people don’t have the all the information from which to make this event into a meaningful conversation. We can overcome and cope with the trauma involved with having brain damage due to FASD when we have support. It makes all the difference with acceptance and unconditional love and someone who isn’t afraid of our brain or mistakes!”

She and others in Ontario are pushing Bill 191 to amend the Education Act to “promote awareness and understanding” of FASD and “best practices” to meet their needs to reinforce the tremendous responsibility schools have to provide awareness, understanding and support to meet these needs, rather than punishing, suspending or excluding troubled students. As Mark Courtepatte, co-chair of the Hamilton support group said, “For people with neurological disabilities, their actions are communication. Whatever his condition may be, the Florida shooter’s actions communicated that he was overwhelmed, his brain was not able to comprehend or deal with his environment of continuous non-support and not being understood. He ‘snapped.’” He noted that discussion about the culpability of Cruz’s school is missing from the media.

Raewyn Mutch, one of the researchers from the Australian study, is quoted as saying, “The longer you leave someone unrecognised with a neurocognitive impairment, the more frequently they experience negative repercussions from not having their impairment recognised…They experience more often punitive responses to their behaviours rather than reflective responses based on the fact that you understand they have a cognitive brain impairment.” In other words, it matters greatly that we recognise and address the needs of people with FASD.

FASD is as prevalent here in the UK as it is in other countries, if not more so due to having one of the highest rates of drinking alcohol during pregnancy. We have seen recent UK reports about many adoptive families experiencing child-on-parent violence. These stats may include undiagnosed cases of FASD. (In the aforementioned US study only 2 of the 222 cases of FASD found were previously diagnosed.)

The good news is research shows that using known strategies to support those with FASD can create brighter futures. This positive approach is the basis of the FASD UK Alliance which runs an online support group for more than 1,600 families. NOFAS-UK promotes FASD Wellbeing by working with those with FASD, families, policy makers and practitioners.

The bad news is there are parts of the UK where it is not possible to get a diagnosis for those on the FASD spectrum, where people are denied support by the NHS and schools despite the fact they have brain damage. If the person doesn’t have the dignity of a diagnosis, that all-important insight into the ‘why-s’ of their struggles, tools and strategies are not put in place: the support, the assessments, the Education and Health Care Plans they deserve, the benefits that are increasingly denied to those who need them most.

Here in the UK adults with FASD are seeking to create change. As Lee Harvey-Heath, Chair of the FASD Advisory Committee said on the launch of the committee last year, “It is vital that those affected by FASD have a voice. Individuals with FASD need to be heard in order to gain the support that they so desperately need and deserve.  My own undiagnosed FASD took me to a place that many neurotypical adults don’t come back from. That is what I want to prevent happening to anyone else affected by prenatal exposure to alcohol.”

How to prevent this from happening is the task for us all. It takes political will, prioritising a vulnerable and too-often overlooked segment of our society, and compassion not sensationalism. We must not stigmatise the very same people we are trying to help. We have to hear their voices too. We have to seek change together.

This is personal. I am American, though I have lived in the UK for nearly 12 years. I am mum to a teen with FASD. The reason why I would not move back to the USA has nothing to do with the fact that there are people there with FASD, just as I would not leave England because there are people here who have FASD. I would not move our family back to the USA because of the guns, the increasingly militarised and polarised society, the failing health system, the lack of safety nets for the vulnerable, the fact the sitting US president openly mocked disabled people. I most certainly do not fear people with FASD, nor should you. Fear – if you must – prejudice, stigma, and inaction. Those are the killers. Fear another generation bearing the weight of this hidden epidemic because our political leaders didn’t think we cared enough to make it a priority.

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Tears, Support and Bloody-Mindedness

Blog_TearsSupportBloodyMindedness

New! Audio recording

By SB_FASD

Yesterday was the second anniversary of the local FASD support group we set up after our son’s diagnosis of a Foetal Alcohol Spectrum Disorder.  We had several families new to the group join us.

We had nearly cancelled yesterday’s meeting. We have been stretched and pulled in too many directions lately, with the added pressures of our little one’s operation throwing an already strained house nearly over the edge.  We both left the house yesterday without our wallets, I didn’t have my phone – an indication of the mayhem that can be our lives.  And yet, two hours later we left the meeting uplifted, glad, invigorated.  Being with others who ‘get it’ does that to you.

One mum new to the group said it had taken her a long time to decide if she wanted to come to a support group because she has never done something like this before.  She reminded me of me … and the first meeting we attended in September 2015 – two months before we set up our own group.

I wrote then, “It is not easy to come forward and to say you or your family need help, that you can’t do it alone, that you need support.  I have always failed those trust tests where you are supposed to fall back and let others catch you. I didn’t know what to expect. I didn’t want to hear more bad news… And yes, as I had dreaded, it was … a room that held some of my worst nightmares – those things you fear for your child when you lay awake, trying to suppress the panic. The vulnerability of our kids laid bare.  Prison. Sexual violence. Isolation. Ostracism. Self harm. Rejection. And yet, there it was–the mind-blowing and inspiring resilience of people whose loved ones have suffered through those worst things of all. They were saying, ‘We’re still here, we’re still fighting, and look! Our kids are not only progressing, they are doing well.’  You can come through even great darkness to the other side.  I never thought to face down those fears.”

I felt the power of the journey again yesterday as in our imperfect way, our group was bridging those who are in crisis, those whose children are recently diagnosed, and those who have been in crisis but whose lives have entered a calmer period.  The polite go-round where everyone gave the most basic of facts about their families, followed by the raw versions as we delved deeper into discussion.  Fears. Tears. Frustration. Anger. People who try so hard to do right by their little ones, but who can’t find the support, can’t find the professionals willing to help. The dismay at the lack of understanding of FASD and what this precious time being wasted means to our young ones and their families.  It makes you so sick to hear story after story, to know these realities are multiplied by the thousands across the country.  To know that there is proof of what can help but the professionals (not all) in their arrogance (some), in their lack of training (most), in their over-stretched and under-resourced structures in which they work (all), refuse to go that extra step.  To know that even in places like our local area where there are professionals who want to do more and who have the training to do more, even then The System sometimes takes away their ability to act for short-sighted or ill-informed reasons.  That System fails us – and leaves a lonely mum at wit’s end crying silently-strong, but at a loss for how to move forward when every single door gets slammed in her face, and as she sees her lovely child start to crack under the weight of the pressures being put upon him. It is quite simply heartbreaking.  And so unfair.

Families across the UK say they wish they had a support.  I wish they did too.  This situation is outrageous, cruel and dehumanizing.  The System certainly steps up fast enough when a young person goes off the rails.   They find the resources to toss them in a high-cost prison, but refuse to provide funds to diagnose and help support those with brain damage/brain injury at the formative time in their lives.  They cut services, benefits and then come down hard when someone can’t pay rent.  The System waits until good people are at breaking point or until after something is broken irretrievably before thinking the situation is bad enough to trigger the services and support that are critical.

No one, NO ONE will EVER be able to justify that to me.

It simply must change.  Our kids shouldn’t have to break before The System sees them.

That said, don’t wait.  If you don’t have support, you can build it. You don’t need to be an expert. You don’t need to have the answers.  You don’t need to be an experienced organizer. You just need a room, some people, and a belief that sharing this journey with others will help you all – a belief that ‘together we are stronger’.  Here’s how we did it.*

Be patient with yourself.  it can take time to wrap your head around it all.  We went into a kind of depression after our son received his diagnosis in spring 2014.  We didn’t really grasp the full impact of it. We received a huge 60-page report the following spring 2015. We first started by educating ourselves, and then a tight-knit group of family, friends, our son’s school.  It was not until Autumn 2015 that we attended our first support group meeting organized by NOFAS-UK and a couple months later set up our local group.

Who knew then just how much this would change our lives?

At our meeting yesterday people said they were holding back, trying to be ‘polite.’

I humbly suggest, let’s stop being polite.  Let’s stay positive.  Let’s tell it like it is.  Let’s make some noise.  Call a local radio station, call a local paper.

Let’s make life uneasy for every bureaucrat who takes the file of a person with FASD and puts it on the ‘not for action until this one breaks too’ pile.

Let’s let love and bloody-mindedness drive us toward the future we know is possible, the future our loved ones deserve.  The brighter future we insist upon because we have hope.

Yes, some days are hard.  Very hard indeed.  Yes, we can provide peer-to-peer support for each other.  Yes, we can raise awareness.  Yes, we can spread the information and strategies.  But at the end of the day there are elected officials in this country responsible for the well-being of people with disabilities, responsible for young people in care and those who are adopted, responsible for ensuring that those with special needs are receiving the education to which they are entitled by law, responsible for the mental health and well-being of our young people and pregnant women, responsible for ensuring adequate diagnosis and medical care is provided to the most vulnerable in our society.

Sadly, it’s up to us to insist that all of these people Do. Their. Bloody. Jobs.

*********

* For those in the UK, the FASD UK Alliance has online support and people like us who have set up groups in various ways across the UK who would be willing to help talk you through setting up local support.  For those elsewhere there are networks all around the world.  Google! Or send us a message and we will try to help you find a national or local group.

For an insightful overview of the brain-based issues and some strategies, please watch this video by Dr Cassie Jackson from a NOFAS-UK FASD Wellbeing Workshop.  For materials for schools, please see the Teaching a Student With FASD handout, also from NOFAS-UK.

 

 

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

When the News Hits Home – FASD & Forever Families

InTheNews

By @FASD_Mum

Yesterday the FASD forums were lighting up with reactions to news that a 10-year-old boy with Fetal Alcohol Syndrome (FAS) was at the center of an international legal battle over who exactly is responsible for helping him to cope with his disability.

According to news reports, the child was born in England and adopted when he was two. The parents moved to Ireland where they reportedly engaged over several years with various therapists, but the combination of FAS and attention deficit hyperactivity disorder, mood dysregulation disorder, alcohol-related neurodevelopmental disorder, a sensory processing disorder and a reactive attachment disorder proved overwhelming.  They brought the child back to Poole, and “presented” him to the authorities there in belief that he would be better looked after in the UK system than would be the case in Ireland.  The couple said they want him “rehabilitated” to their care after appropriate interventions.  The child was thrown into a legal quagmire.  A UK judge concluded this is a case for the Irish courts since that his where the boy was “habitually resident”.  We shall see what happens next.

Parents, carers and others in the online FASD support groups are right in urging that we avoid judging this family before we understand more about their situation.  There are countless cases of people adopting children whose needs are more complex than imagined and whose families are strained to breaking point as a result.

Those in the UK who have to fight too hard to meet the basic needs for their kids with Fetal Alcohol Spectrum Disorders (FASD) have been shaking their heads about how bad these parents must think it is in Ireland if they see UK as some sort of shining example of a place where a child with FASD will be looked after.

The reality is that here in the UK too many confront needlessly complicated procedures even to get a diagnosis, that most basic of starting points.  Despite the fact FASD may be as common as autism, the stigma runs high and very often parents are advised by ill-informed medical professionals to avoid giving their child this “label”.  There are those who have adopted without complete information about the child’s full history, whether deliberately withheld or not.  There are those who rightly or wrongly expected continuing support after the adoption.  Given the nature of this disability, very many do not understand the full impact of this brain injury until the children hit their pre-teen and teenage years.  Too many are ill-prepared for as many as 400 co-occurring conditions that can arise when alcohol crosses the placenta.  There are too many who struggle to continue to provide support for their child after the kids reach 18.  This is especially devastating and bewildering because the rule of thumb is that kids with FASD can have an emotional age half their chronological age.  There are those coping with the secondary issues that can come when earlier interventions fail to meet the needs of a child – the addictions, self-harm, dangerous behaviours that place vulnerable people in jeopardy, incarceration, homelessness, unplanned pregnancies, and more.

And yet.

Knowing all of that does not remove that ache in the pit of my stomach when I read about these relatively rare instances when a parent does something dramatic that rattles our consciences. Reading about this recent incident, I was instantly reminded of the case where a US adopter put her 7-year old son back on a flight to Russia, a case that shredded to breaking point the fibres of the already strained US-Russian adoption system following convictions of the murder of 19 adopted Russian children at that hands of their adoptive American parents.  The mother who bought her child that one-way ticket to Russia was eventually ordered to pay for his care.

When adoptive parents stand and take an oath they commit to be there forever to share a life of love, concern and surety for a child who has known too much insecurity and too much upheaval.  Adoption is not fostering.  It is not temporary.  It is forever.  Yes, as with biological children, sometimes families must place a child into a residential center when the family is no longer able to cope or when the child’s needs exceed that of the family’s abilities.  Sometimes when addictions and secondary behaviors take hold, there is little parents can do. This is always tragic.  But those tragedies should not be compounded by a child being left unloved, unwanted, and disowned again by those who swore there was a place where they would always belong.  The child’s side of these stories is rarely heard.

I doubt there is not one person who was adopted who read this boy’s story and did not feel his or her chest tighten from old and painful scars.  My husband – successful, happy, well-loved his whole life except for those first several weeks before he was adopted – my sweet husband won’t even engage in these discussions online because it hits so deep and he fears saying things others might find offensive.  But it is his truth and the truth of countless others for whom rejection is a baseline from which they must build their lives: trusting in permanence comes hard.  Imagine the wallop they felt when they read that this child was “returned” to sender.  I try to shield our adopted son from the headlines of this story.  It is just too horrible to contemplate – the very last thing I want him to worry about.  His life is confusing and complicated enough.

I would hope that any parent who adopts a child is serious about that “forever family” pledge.  In a world where divorce is commonplace people think some vows are more ritual than reality.  But when it comes to a child’s life, these adoption commitments must mean all that we say they do.  When we adopted we were given a long list of potential medical problems our son may have, but no-one so much as mentioned FASD.  Nevertheless, we committed – understanding life would unfold and come what may we would be walking this path together.  That did not change once we had the FAS diagnosis that provided a framework for us to be able to fully understand our son’s needs.

There is light in every child.  There is laughter and love and hope in every child’s heart.  Every child wants to be accepted.  Every child wants to feel safe and secure and cherished.  We all need an anchor in this scary and shifting world.  Kids who don’t fit into society’s expectations need that home base most of all.

My heart weeps when I contemplate the life that 10-year old child in the news has to look forward to.  In expressing our understanding and compassion for the parents, we must never, ever lose sight of the children.  How lonely and lost that child must feel in a world that keeps tossing him around. That poor, adrift, and misunderstood child who suffers because before he ever drew a breath he was in the wrong uterus at the wrong time.  He is innocent, like a victim of a drunk driving accident.  This child desperately needs our compassion.  The issues that got him to this place demand immediate, sustained and serious attention of society.

 

Stigma

Stigma.jpg

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.

 

 

 

 

 

 

 

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.

FASD Awareness: The Day After

#FASD Awareness

by @FASD_Mum

Yesterday’s FASD Awareness Day was invigorating for those of us who know someone affected by prenatal exposure to alcohol.  It was a strange thrill to see the hashtag #FASDAwarenessDay trending on Twitter. We were not alone.  People in diverse countries had a bridge to some of the world’s leading experts via social media where our questions were answered and we were pointed toward cutting edge information.  Articles about FASD appeared in local media.  Politicians were photographed with leading advocates.  Regular people reached out to their friends and colleagues to talk about the issue.  It was an inspiring day.

Now it’s the day after.  Many, like us, woke up to the daily morning struggle. Our son finds it nearly impossible to sit still in the morning (meaning, he literally spent a half hour going upside down and regularly does flips on our couch and his bed). It is a struggle to get dressed. It’s challenging to get him to eat enough good food to get him through to snack time at school.  He can’t keep track of homework or locker keys. His interactions with our dog need to be redirected before the dog loses patience.  We shrug off the insults that come when our son gets frenzied.

You may say this sounds like a “normal” household, but all of these things are more extreme, more chaotic, and any one of them can quickly spiral into a full meltdown if we do not handle it correctly.  When that happens, he loses his ability to control his frustration, things fly and get broken, he shouts, scratches, screams and flails out. We walk on eggshells before our morning coffee, while we wait for our son’s medication to kick in and for him to find his balance.  And he is one of the “lucky” ones, he is not on the far end of the spectrum.  Other kids have significantly greater difficulties and are unable to perform even some of these tasks.

Yes, it’s the morning after, and here we are.  The epidemic continues.  Women continue to be given mixed signals from the medical community about drinking during pregnancy.  Kids go undiagnosed.  Too few medical professionals screen for FASDs and those that do are woefully underfunded and understaffed.  Once they give a diagnosis they know there is little follow on support.  Parents struggle, some of whom also were affected when their birth mothers drank.  Young adults with FASDs end up with criminal records or addictions because they never had the help they needed.  They want to break the cycle, but need support.

It’s a cold morning, this day after.  But it can change.  Funding is a key to opening the resources needed. Decision-makers need to rally.  They can draw upon significant research and best practices available from other countries. In the meantime, every parent with a child affected by an FASD should be pointed toward information on behaviour management techniques, medications (where appropriate), educational settings and resources.

No one should walk this path alone.