FASD Day – Sharing Hope on the 9th Day of the 9th Month

Blog_2019F ASD Day

SB_FASD

The ninth day of the ninth month is FASD Awareness Day, chosen to remind us all of the importance of staying alcohol-free for the nine months of pregnancy. It’s a day when people stand up with and for those who have FASD – a lifelong brain-based condition that is caused by alcohol exposure in the womb. It’s a day we encourage the powers that be and the general public to address this public health crisis with the seriousness given to other neurodevelopmental disabilities like autism.

It’s a day when we marvel at all that our own son, now 15, has accomplished in his life, the great strides he has made in understanding himself and taking on board strategies that can help him. It’s a day we celebrate his strengths and are thankful that he has been surrounded by professionals, family and friends who have stood with him, with us, as we have come from a place of crisis to a more stable ‘now’. It’s maybe not unrelated that today he had a music mix released – all by his own doing – on Amazon and all the major music streaming platforms. If we are honest, we aren’t even sure how he did this – though we know he’s been working hard at it for weeks, showing us once again that he has vision and abilities that we have yet to fully understand. Magic!

Statistically, here in the UK 6% or more of the population may be affected by FASD but most are undiagnosed and misunderstood. They are in our classrooms, in our workplaces, in our communities, in our families – struggling. If unsupported, it’s likely that on top of the physical, sensory and cognitive challenges they face they are also grappling with secondary issues such as mental health problems, addictions, homelessness, sexual vulnerability and financial insecurity. If FASD is unaddressed and not properly supported, it can become a perfect storm that wreaks havoc, sometimes across generations.

But FASD Day is a day of hope. It’s a day when people with FASD stand with others for change. One initiative is the Red Shoes Rock awareness campaign that spans the globe, encouraging those with FASD to be bold in their self-advocacy, to stand up and be seen. It’s  a day when people speak out to encourage more awareness of FASD and the risks of alcohol in pregnancy.

Here in the UK, change is coming in ways big and small. The government is finally responding – a new NICE Quality Standard on FASD will, by September 2020, lay out five areas for improving the quality of care regarding FASD; the Department of Health will be releasing a report soon addressing FASD and for the first time ever it has set aside nearly half a million pounds to fund voluntary and charitable organisations work on FASD. These are baby steps but important, the signs that like a huge ship at sea turning direction, the massive systemic change that is needed is underway. These breakthroughs are happening after decades of dedicated work by pioneers in the field keeping this issue at the forefront – dedicated experts, a handful of MPs, peers and stakeholders. And it’s been fuelled by the collective voices of this community increasingly joining together and insisting that policy makers hear our voices.

In too many of our homes, the changes, however positive, will still take time to translate to the peace and security we want for our loved ones. Our children – big and small – are still facing daunting challenges every day of their lives. It’s heartbreaking to know that they face a world every day that does not respect and honour their courage and effort, to know they do not have access to the tools to help them nor to professionals with appropriate knowledge. Worse are those instances when we hit a brick wall of professional indifference and stigma.

FASD Is often the missing piece of the puzzle when trying to figure out the ‘why’ of behaviours that are confusing and sometimes alarming. FASD can be the reason why a child might have trouble learning or calming, the reason why a young adult might keep melting down or striking out when frustrated or overwhelmed, the reason why a person we love doesn’t follow instructions, lacks impulse control or seems oppositional, the reason why our loved one struggles in school or can’t keep a job or self-harms.

FASD is called a hidden disability because we cannot see the very minute but very real organic brain damage that happened long before they drew their first breath. For someone with FASD, changes in the way their brain wiring developed means they cannot do some things others take for granted, at least not without appropriate and lifelong supports. Little people with FASD grow up into adults with FASD. They all deserve our empathy.

People with FASD have many strengths that can be built upon to create pathways toward success, but this can’t happen if they are constantly berated, punished and made to feel ‘less than’ for things beyond their control.

Someday here in the UK FASD Day will be widely acknowledged. But in the meantime, some of the biggest changes are under our own control. If you know someone who might have been exposed to alcohol in the womb and who is struggling, give them a break. Love them. Don’t blame them for actions that you find confusing. Learn about the ‘neurobehavioral’ model of support, educate yourself. Join local and online support networks.

Though it may be hard, as it remains a postcode lottery, help them seek diagnosis and support. Fight for an Education, Health and Care Plan. Fight for thorough assessments for speech and language (including receptive language), for occupational therapy/sensory integration, for cognitive challenges with executive functioning and adaptive planning, for the benefits and supported employment they deserve. Appeal, appeal, appeal. Make some noise. Contact the papers, radio stations, MPs, Clinical Commissioning Groups. Educate your family, friends schools, communities. Open up and let others know what you are going through. Raise awareness of the risks of alcohol in pregnancy. Be bold. Wear red shoes if that reminds you that we are all part of a much bigger picture.

“The road is made by walking it.” Together we are making changes – led by people with FASD who show us what they need and together with an amazing army of people from many walks of life and from many backgrounds and skills sets.

Change is coming.

Of course, for those who live it, every day is FASD Day.

But on this 9th day of the 9th month, as we are rocking in our red shoes to our son’s newly released track (!), we send you greetings and solidarity. From our house to yours – we share with you our hope for brighter tomorrows. With your help and working together, we will get there.

An Open Letter to Prince Harry and Meghan (and every parent-to-be)

BLog KEEPCALMSUPPORT ALCOHOL-FREEPREGNANCY-2

By SB_FASD

Dear Prince Harry and Meghan,

You are expecting a baby! Oh, the dreams and hopes and joy of it all. Congratulations from one British-American family to another. Each of us wants a bright future for our children, no matter how many ‘u-s’ we have in our words or ‘zeds’ that fall by the wayside.

That is why I had tears in my eyes when I read the news that at an important function abroad you gave an official toast with water. The announcement that you both are going alcohol-free throughout this pregnancy literally stopped me in my tracks. I suspect my grin could have been seen from outer space that day.

Parenthood changes us. We protect our kids and do the best we can for them. With one simple choice you both have shown leadership of the kind that can transform lives, change tomorrows. I wanted to share my deep respect and appreciation.

You see, I know what it’s like to parent a child who was exposed to alcohol in utero. I have seen a young toddler unable to process the sights and sounds of daily life, looked into the eyes of a distressed young one whose brain can’t handle too much input without kicking into the fight and flight mode. I have literally held with a mamma-bear hug a dysregulated child who was lashing out in distress – while neither he nor I could understand why. I’ve been in the schools, working with teachers who were frustrated that he couldn’t focus, sit still, remember. I’ve spent hundreds if not thousands of hours in waiting rooms, doctors’ offices, talking with therapists, trying to understand why he has trouble eating, why some bones are fused together, why he can’t grasp abstract concepts. Gathering diagnosis after diagnosis until at the age of 10 we finally learned our adopted child has a Foetal Alcohol Spectrum Disorder.

I will never forget that moment when it hit me. This sweet, musically talented and physically precocious young child has organic brain damage. “He will need support for the rest of his life,” the doctor said to us that day. We are older parents. Those words struck us with fear.

I wish you could know the sweet sounds of my son’s laughter, watch him dance with abandon and flip on trampolines with great skill, see how his smile lights up a room. We all want the world to see our children shine. But I won’t sugar-coat it. There is great pain and frustration in his world. It’s better now that we have the diagnosis and we have been able to access appropriate schools and therapies, but he is vulnerable in a world that does not understand him, no matter how hard he tries. So we are using these teenage years to help him have the words and strategies he will need. Fingers crossed, so far he is one of the ‘lucky’ ones. The post-code lottery has worked in his favour.

Too many people with FASD end up with secondary mental health problems – an area I know you care deeply about. Without diagnosis, appropriate support, alternative parenting strategies and the full weight of the resources this amazing NHS and educational system can provide, these young people fall through the cracks, families strain and sometimes break under pressures and the brilliant sparkle in our loved ones’ eyes becomes dull. Adults and young adults with FASD can end up homeless, addicted, in prison, sexually vulnerable, straining the resources of a system that could have been ahead of things sooner in their lives.

But your actions, your leadership – oh, how transformative and welcome they are.

It’s like FASD awareness has hit the stratosphere in recent weeks. The Deputy Chief Medical Officer Gina Radford convened the first ever government-led meeting with FASD stakeholders as part of an ongoing effort to see what Government can do. EastEnders featured a story line for its 7 million viewers about alcohol, pregnancy and the risk of FASD. The Children’s Minister Nadhim Zahawi, MP met with adopters and carers and discussed how FASD disproportionately affects children in those communities. There are people with lived experience, leading medical experts, FASD groups and MPs and peers who have been pushing these issues for years but perhaps now, maybe now this is a threshold moment for greater change. We hope you might help by encouraging joined-up thinking about how to tackle this public health crisis. Perhaps it’s time for an FASD summit. We’ll be there, supporting progress in ways big and small.

Statistically there are more people out there with FASD than autism. It’s a ‘hidden epidemic’. Because of stigma, lack of professional training and old-school thinking, most of them will be undiagnosed and will struggle unless our leaders change things.

FASD is the missing piece of the puzzle that anyone who cares about child mental health and the success of special educational needs and disabilities reforms in our schools should be examining. FASD needs to be recognised as the neurodevelopmental disorder it is in order to open doors for access to services.

By announcing both of you are abstaining from alcohol, you hit the mark perfectly. Partners play a huge role in supporting alcohol-free pregnancies. No alcohol, no risk. #049.  Please consider taking this to the next level and help people understand why you have made this choice. You know the power that comes from recognising the courage of those fighting battles that others do not see. As you have done for others with disabilities and mental health challenges, you have validated and honoured our son’s struggles. Thank you.

The entire FASD community is wishing you a healthy and happy pregnancy. Cheers!

****
This post also appeared in the Huffington Post, 8 November 2018.

This Parent-Advocate Celebrates Messy Trails and Snails

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By SB_FASD

Our son’s taxi was late. He was all ready for school. He had in his bag photo albums from when he was a baby and a clipping of a news story about our local FASD support group. I had work to do, I was feeling pressure. Our son hadn’t eaten breakfast again. We were waiting outside so the dog would not become further excited. It was raining. I was in my pjs. I wasn’t in my mum-of-the-year mindset. I wasn’t there. I wasn’t in the moment.

And then my son noticed three snails.

They were climbing a post by our door. Three different sizes. The biggest one (the mum, he said) was lagging behind.  We stood there, my son and I, for nearly 30 minutes discussing those snails, where they were going, what they were seeing, what they might be thinking. I hate snails. But on this morning, I loved them and was fascinated by them, totally engrossed by them – right there with my son. In his moment. I even learned something watching them come out of their shells when making what seemed like lateral moves around corners from up high.

Sometimes we don’t know where we are going or what it takes to get there. But you do what you have to do. You improvise even if you are not sure exactly where things are headed. You just keep moving.

The taxi came and our little one went off to school. I started thinking about mindfulness and the advice we often receive to simply (!) slow down. I was thinking about the many times our son shows us that due to his FASD, he is mindful of things I often don’t notice. I thanked him before he went to school for being so observant. I told him without him there I never would have noticed those snails today.

I have been busy. Good busy. But busy. The kind of busy that means you go to work early and miss seeing your kids off to school. The kind of busy that when you come home from work, your face is still in the computer when the kids are looking for a chat or the dog wants a cuddle or your husband’s in the kitchen cursing the stove yet again while trying to feed us all. The wake-up-in-the-middle-of-the-night-and-do-more kind of busy. And it was worth it. Probably if I had it to do over, I would do all of that again. I will do all of that again.

But I came across this quote in the midst of this week and it spoke to me about how we define our terms.

I lied and said I was busy.
I was busy;
but not in a way most people understand.

I was busy taking deeper breaths.
I was busy silencing irrational thoughts.
I was busy calming a racing heart.
I was busy telling myself I am okay. 

Sometimes, this is my busy –
and I will not apologize for it.”
                ― Brittin Oakman

 There are lots of ways to be ‘busy.’

There was another piece doing its rounds in social media this week, by Alethea Mshar “Dear Special Needs Mom Who Feels Invisible”:

I want you to know that I see you…I know you feel invisible, like nobody notices any of it. But I want you to know I notice you. I see you relentlessly pushing onward. I see you keep choosing to do everything in your power to give your child the best possible care at home, in school, at therapy and the doctor. What you’re doing matters. It’s worth it.

On those days when you wonder if you can do it another minute, I want you to know I see you. I want you to know you’re beautiful. I want you to know it’s worth it. I want you to know you aren’t alone. I want you to know love is what matters most, and you have that nailed.

And on those days when you have breakthroughs, those times when the hard work pays off and success is yours to cherish, I see you then too, and I am proud of you. Whichever day today is, you’re worthy, you’re good and I see you.

This week some of us brought the voices of many of us to Parliament and to the Royal Society of Medicine. We stood side by side with each other and with medical, educational and epidemiological experts to share the truths that we have learned in our combined experiences as people with FASD, birth parents, adoptive parents, foster carers. We are strong, we are warriors, we are standing firm. Hear Our Voices was the simple but powerful message we carried with us from the thousands in our networks.

There have been some unexpected moves, some lateral moves. Times when we have come out of our shells and out of our comfort zones. We are not entirely sure where we are going. We sometimes feel like we are too busy trying to simply keep breathing that we are not accomplishing what we hope to accomplish. Sometimes it is enough to be seen. But the goal in the end is to be heard and for the messages we are saying to be acted upon.

My son lives in the moment – or as Dr Cassie Jackson calls it, the ‘Here and Now.”  There is beauty in entering into his world – this is what I tried to say to the doctors and psychiatrists at the Royal Society of Medicine. While the medical community and the policy makers and the number crunchers all try to assess FASD from their undeniably important analytical perspectives, we have to take pride in the messiness of being parent advocates. And we honour and deeply respect those of us with FASD who are self-advocates. The most powerful moment of this week was when a teen with FASD spoke her truth to parliamentarians and when they spoke back directly to her, affirming the impact she had made.

We have a right to be at these tables even if we are a bit crumpled around the edges, less smooth than we’d like to be. As real as that life-worn Velveteen Rabbit we tell our kids about.

I’ll admit here among friends that I had to dig the dress trousers I wore that day from the bottom of a dirty laundry pile and my shoes were not shined as I walked into Parliament.  I am sure there is still some sort of liquid vegetable at the bottom of our refrigerator drawer and the freezer cannot close properly because it so desperately needs defrosting. This life is messy.

Being a parent advocate is not always pretty and it is not straightforward. It feels slow. Sometimes it can seem like an impossible juggling act when the demands at home are so intense and those moments away from my children feel like I am failing them.

But when my little one proudly tucked into his school bag so he could show his friends and teachers a positively framed news article titled “Calling All Superheroes” that highlighted “support for those with a brain condition” – I knew, I KNEW this journey is worthwhile.  We will get there, even if it feels at times like a snail’s pace. This next generation is strong and with our help they will be better equipped than those who have gone before them. They have FASD role models paving the way. We all are standing on the shoulders of giants. We are not fighting the same old battles. We are moving this into a whole new playing field.

And my son who sees more than I do reminded me this week that even a snail’s pace can be a fascinating journey.

I suspect that once we break out of our comfort zones further – bringing with us to static rooms our messy lives and our powerful truths – change can come faster and with more innovation than we can imagine now.

And as we who live it all all know, where ever we FASD families go the trails we leave sparkle and glitter. 🤣

For anyone who doubts that, I have proof. In this one snail- and slime-loving house – I have yet to scrape the remaining glitter slime off our dining room table…and the snails are out there again on this wet morning. Yes, this weekend’s task is to tidy up around here after a busy week of being both seen and heard…reality calls…

 

 

 

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34 – A Number Key to FASD Awareness

Copy of Life Expectancy for Person With Fetal Alcohol Syndrome-2By @FASD_Mum

34

I can’t stop thinking about this number.  I try to shake it.  I walk away from the computer.  I divert my attention.  I try to block it out.  But eventually, there it is again.  Stark.  Cold.  Flawed, perhaps.  But it cannot be ignored.

According to a March 2016 study based on data from Alberta, Canada, this is the average life expectancy at birth of a baby born with Fetal Alcohol Syndrome.  It means that statistically, using standard scales used to estimate these things, the professionals assume that half of the people with Fetal Alcohol Syndrome will live longer than 34 and half will live less than that.  This is a limited figure, a guess.  It deals with only one part of the Fetal Alcohol spectrum.  Quite probably the people you and I know with FAS will live much longer than this number.  We shouldn’t dwell here for too long.  But neither should we ignore it.  We absolutely cannot ignore it.  And especially not on Fetal Alcohol Spectrum Disorders Awareness Day (9/9).  FASD is not just about the never-ending arguments about whether or not a pregnant woman has a ‘right’ to drink alcohol.  It is about confronting this statistic.

34

This number is so grim, I asked some trusted adults with FASD their opinions about raising this issue.  Their replies humbled me.  They want the word to get out.  They don’t want things to be ‘sugar-coated.’  One said he believes from his experiences it is likely to be 100% true.  Another said he himself would probably not be here today if he did not finally get the diagnosis as an adult.  This number is not easy.  I write this post as a lay person, not fully familiar with the statistical models used, and with awareness that nothing is carved in stone when it comes to these sorts of figures.  And yet, even knowing the limitations and even worrying about possible repercussions, I cannot grapple with this international FASD Awareness campaign and keep silent about this figure.

Somehow in the reporting, public information and policy discussions, the devastating impact on the individual of the brain injury of FAS and the 400 co-occurring conditions is ignored.  We push that away.  It’s too easy to do.  The internal damage is invisible while the behaviors are quite apparent. It’s easier to blame, label and ostracize those affected than it is to help them.

So society focuses instead on ‘behavior’ and ‘parenting’ and sidesteps the underlying issue.  No one likes to tackle the stigma.  We wallow as a society in the murkier waters – debating endlessly the limits of what is known about prevention and prevalence.  People want ‘facts’ but they don’t want to fund the studies that they say we need before policy can change.

Meanwhile our kids are dying from a preventable injury.  Their damaged brains and other internal systems make their every day a struggle in this overwhelming world that seems not to care.

Rather than dealing early and directly with the medical issues arising from the primary prenatal trauma that these kids have suffered, society only reacts once the secondary issues kick in.  Without proper diagnosis, intervention, therapy, educational strategies, and support, trying to cope with their inner chaos leads too many of those affected to drugs, violence, addictions, unplanned pregnancies, extreme behaviors and unleashes related psychological issues.  Only then, once their behaviors spill over, only at that point, yes, the public is willing to spend money – on prisons, on court orders, on foster care for their offspring – but rarely on helping the individual cope with their disability.

34

Alcohol is a teratogen.  It crosses the placenta.  An undeveloped fetus cannot process the alcohol so it stays there longer than it does in the mother.  It is a solvent, I picture it sizzling its way through the unprotected systems of the growing fetus. Zapping out bits and pieces and potential.

Kids with FAS quite often literally have parts of their brain damaged or even missing – including the parts that bridge the left and right side of the brain – parts that are required for thinking in abstract terms, in helping to regulate emotions.  Kids with FAS have tiny head sizes because the brain has not fully developed.  They often have problems with their spines, their bones, and other organs.  For an FAS diagnosis, a child exposed to alcohol in utero must have certain facial features – visible and very specific damage that happens early in the pregnancy.  But while this study over life expectancy focused only on FAS kids, the impact can be equally severe in other kids on the spectrum but who do not have these facial features only because the injury to their brains happened at another point in the pregnancy.

There is a deep, deep prejudice in our policy making circles and in the medical community that makes dealing with these brutal realities extremely difficult.  Stigma runs deep.  Parents seeking diagnosis are often turned away – even when there is proof that the child was exposed to alcohol in the womb.  They are warned not to “label” their children.  This condition is not taught properly in most medical schools, many doctors and nurses do not have current information.  There is no ‘post-diagnostic protocol’ in the UK, which means care is inconsistent or non-existent for those ‘lucky’ individuals who get a diagnosis.  Many with FASD are misdiagnosed either intentionally or unintentionally. Parents are told to be glad if their child has a low IQ or a co-related autism diagnosis as these two things can open some of the necessary doors.

This gap in care leaves families in a desperate no-man’s-land.  They are given knowledge that their child faces a lifetime of difficulty since there is no cure for this brain injury.  They are aware of the grave statistics. They know that the way to beat the odds is through following expert guidance on ways to adapt the environment around the child to accommodate their special needs.  They know that special training is needed for educators.  They understand that medical attention and therapy for co-related conditions is urgent and life-changing.  They know there are ways to challenge these statistics, but they are rarely able to access these services.

So they are faced with this number.

34

They swallow their panic.  They suppress their frustration.  They turn a patient face and a smile toward their young one again, and again, and again.  At least, they try.

This statistic can change.  A child born with Cystic Fibrosis now has a life expectancy at birth of 40.  In the 1980s, it was less than 20.  A child born with Downs Syndrome has a life expectancy of 50-60.  In the 1980s the figure was 25.

Here’s another statistic.

1

In one year we could eradicate nearly all new cases of FASD.  We could theoretically wipe out this brain damage in less than one year – nine months in fact – if our political, medical and scientific leaders would just say it straight (like the US CDC did) – if you are having sex, use birth control or don’t drink alcohol.  If you are pregnant, don’t drink.

We could in theory wipe out FASD if they would put in place supports for women who are struggling, help those who are in abusive relations or dealing with alcohol addiction, if the families and friends around pregnant women would create a supportive environment, if we tried, really tried to support those who are vulnerable and who might become pregnant.  Of course it is not so easy and, yes, there will always be cases where women unknowingly or unwittingly expose their fetuses to alcohol.  But – dreaming a little – I cannot think of another such leading cause of brain injury and disability that could be tackled so swiftly.

049

This is a number used widely by FASD awareness groups.  They use the number to encourage zero alcohol for the nine months of pregnancy.  It’s a number that resonates.  I totally agree prevention is best.

But I would encourage us all to keep in mind this other – uglier – number.

34

We are cutting short lives when we ignore the needs of those people among us who have the hidden brain injury of FASD and its related conditions.

34

I refuse to let that be a number that overshadows my son’s life.  That’s why I write.  That’s why I encourage you to learn more about this condition.  That’s why we engage with the FASD community here and internationally.

It is not just about awareness.  It’s not just about prevention.  It’s not about being a pesky parent in the school or the one who tries to push the boundaries of the NHS, the relative who harps on and on about something no on likes to talk about.

In every way we know how, we are quite literally fighting for our son’s life.

______________

[Editorial comment/update – since originally publishing this post, we have come to understand the very limited nature of the research quoted. We are leaving this post up because we do believe that issues relating to life expectancy and quality of life for those with FASD need to be further researched. We are fighting for our children’s lives.]

 

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FASD Parents Don’t Get Sick Days

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by @FASD_Mum

One minute, I was sitting in the GP’s office, waiting for a locum to give me blood test results.  The next thing I knew, I was a human pin cushion, sitting on a plastic bed, contemplating mortality. It’s been a heck of a weekend.  Never fear, the worst has been ruled out (I am not one for cliffhangers). Creating drama is not the point of writing now, from my bed at home.  I just cannot shake the thoughts I had while peeking through a door that too many parents of kids with special needs, including kids with FASD, have looked through.  What happens if mum (or dad or carer) gets sick, maybe even seriously so?

I have encountered an overworked, well-intentioned, bureaucratically inept UK healthcare system that has been minimally efficient but not kind.  I spent 36 hours being led to believe by a team of medical professionals that there was a chance – their idea, not mine – that my world might change irrevocably as a result of the tests they were taking.  They thought there was a chance I had a brain tumor and a tumor in a lymph node.  This was not a knee scrape.  Not once during the 36-hour ordeal, did any medical professional sit with me to explore how I was doing – not as I repeatedly explained when asked by people who did not read the chart about the cancers that killed my mother, the heart problems that killed my dad, the aneurysms that killed my aunt and might have got my mom but didn’t have time, the strokes, the diabetes, the grim genetic heritage I carry.

Every person who took my history looked at me strangely when I could not answer how long I have been feeling run down.  They seemed surprised I couldn’t pinpoint when my symptoms first started.  They asked how long I have been feeling tired and were skeptical when I joked I couldn’t remember a time I did not.  I explained we have some special circumstances.  An 11-year old child with FASD.  A 13-year old son who has been sick on and off for years with Chronic Fatigue Syndrome.  So, no, I haven’t really been paying attention to my own aches and pains.  Maybe I imagined it, but I felt like I could see the boxes ticking in their head, a tired mum, tick, special needs child, tick, probably nothing wrong here.  Except for the symptoms, some of which could not be ‘faked’, some of which I didn’t even know existed, let alone know that I have. Serious symptoms, serious enough to have them stream line me to a bed on a night when no beds were available.  Serious enough to have them wheel men late at night to a different room so they could start a women’s ward right then.

The lovely woman who was eventually moved into the bed across from me has brain cancer, previously had breast cancer.  She told me she is trying to do all she can for her grown up sons and her partner before she faces whatever comes next.  “But at least mine are grown,” she said as the words struck home.  The implication hanging.  It was some really hairy karma that put me in bed across from a walking embodiment of my worst fears, a woman for whom I needed to find comforting and encouraging words. And I did. Or I tried.  I know what brain cancer is, I held my mother’s hand as she died from it, the one cancer that finally claimed the last of her strength.

As they scanned my head I instinctively flashed back to the young, athletic me lying on the beach soaking in the sunshine. Surprising myself at the imagery that came to me, but pleased.  Like bumping unexpectedly into an old dear friend, this other me was there. Reminding me of days long, long ago.  A different me.  A stronger me.  A more optimistic me.  It was comforting and warm.  As the scan clicked over my strapped-down forehead, eyes closed, so many images of sunny days spent on many different beaches flipped by – the beach of my childhood by the sea, the beach of my boardwalk waitressing days, the university lakeside space we called a “beach” on sunny music-filled afternoons, the bright sands and ragged coastline of Cornish holidays, the lounge chairs filled with friends on rooftop pools during my early professional days.  They were all backward-looking images.  I could not for a moment allow myself to think forward.  I could not possibly think of all of my hopes and dreams and unwritten books getting blotted out by overactive cells in an overcrowded brain.

Mostly, I could not think of what a positive result would mean for my family.  Watching re-runs of Downton Abbey on my phone screen, I refused to go through that door in my head. If I had, I don’t think I would have been able to breathe.  I simply could not allow my mind to wander in that direction. I stared out at airplanes landing and taking off, thinking of the places I have been and how no one determining my fate had a clue who I am really.

When it turned out I am not facing imminent death, and after reeling off a string of contradictory and confusing information, the NHS spit me out of their system unceremoniously at 10.15 pm on a Saturday night (I had to remind them in a hallway to remove the cannula). My 36 hours of being brave crumbled, and I pleaded through my frustrated tears. Somewhere out there is a young well-meaning and exhausted junior doctor, whose name not one nurse on the floor could tell me, who bore the brunt of a decade of frustration trying to move this system.

I was begging.  I don’t beg, but I was begging.  Please don’t send me away without answers.  I know how this system works. I have a child with FASD and one with CFS.  I know the months of waiting for an appointment with someone who may not even be with the right specialist, which will then lead to waiting more months.  I know how each person looks only at their little bit of you, through their little prism.  I know how impossible it is for them to wrap their heads around a confusing case.  I know how the system is not proactive, but reactive.  I know because we have two kids with health issues who have each in their way fallen through the cracks.  In one breath she told me if I stayed until Monday I would see a neurologist then but that I had to go home that night as my symptoms were no longer ‘urgent’, and so it would probably take 18 weeks for me to get an appointment with a neurologist.  I told her that is not fair.  I told her the system is broken.  She later came back and said we all know the system has problems but she was tired and she had to go home, she could not find another junior doctor to finish the exam she was trying to do but could not because the equipment was broken, and I should just leave.  I was panicked that for once we had carved out space for me to figure out what is wrong with me, and I knew that if we left that place my needs would be diluted again, this process would drag out, and the demands of my days are so intense I would have no option but to jump back in.

My fears I might fall through the cracks were real, as judged by a phone call at 2 pm the next day from a tired and confused nurse asking me if I had been discharged (apparently they waited several hours to try to figure out why my bed was empty, which is a whole other level of crazy). They had no record of my discharge or follow up, they had not even been briefed verbally by the night shift.  I see the paperwork trail fading.  They will close me out of the system, tick.  Leaving me to swim upstream in a weak state.

When I look at this from a long-term perspective I know I can’t give into the system’s desire for me to just go away without answers.  But the short-term reality is that I must keep on in my daily life.  Our days are demanding as we help our son with FASD navigate the world.  I see the strain lines on my husband’s face.  I see the limitations of relying on friends and family.  Helpful as they are, the strain has been immense on my husband in trying to get through just one weekend without me when under such stress.  I know I am not irreplaceable, I am not that big-headed or vain.  I travel a lot for work, but this weekend was different.  I see what happens when you remove me from the picture if only for 36 hours.  And that scares me more than any potentially aggressive cells might have done.

When I came home at 10.30 pm, our 13-year old brave son was waiting up for me.  He sat by me on the couch.  Being near.  Our welcome-home hug held just that much longer. Our 11-year old son with FASD was spending the second night in a row with his grandmother and aunt, having spent the days with another aunt and her family.  This alone is a very rare occasion, one we usually prepare him for well in advance.  Instead this time it was all last-minute changes and quick planning.  He did well.  When he came home in the morning, his grin at seeing me was the most beautiful smile I have seen in years.  Then he too needed me to sit side by side with him.  He refused to go to his beloved gymnastics, admitting to me the weekend has been “tiring” (his word, a more abstract word than he usually uses, a word that made my heart swell even in my light-headed state).  My husband, showing signs of the weight he has been carrying for a weekend, needed a break.  My boys needed me.  But right then, there really was not much more of me to give.  I need recharging.

Here’s the thing.  Here’s why I am writing this on a blog about FASD.  None of these moments were unaffected by the overarching reality of how FASD has affected our life as a family.  Our son is lovely.  He also has special needs.  We cannot alter his routine without consequences for him and for us.  We really cannot easily ask others to look after him.  He cannot verbalize his fears, so when he heard his mum was in hospital it was like a ticking bomb.  Family who did step in saw a kid who behaved really well for them, and we are proud of him for that and appreciative of what they have done for us. But my husband and I both knew that would not be the whole story.

I read the distress in our little guy’s eyes, beyond that big smile.  I knew this would be a long day.  I saw the fear in his eyes when I told him it was time for gymnastics.  I hugged him and said not to worry, I promised if he went to gymnastics I would be here when he returns.  He didn’t trust that promise.  We did not force him to go.  Instead, with my head pounding, I sat on the floor by him as we googled pictures of mouldy cheese together for a school poetry project.  He needed me physically near.

Those who looked after him for us didn’t see the toys getting thrown down stairs, the hour-long perseverative desperate search for a missing green bandana, the smashing of marble runs, the manic laughter, the tears. The way he needed me to scratch his back. The major meltdown that happened after dinner, the spitting and kicking, the blowout between my husband and I who are frazzled beyond belief. The ringing in my ears, the way I just wanted to curl up with a pillow and rest.

How something as simple as the need to plow through laundry (even with help from my mother-in-law) on a weekend before school starts again after a long holiday caused a whole chain of ‘asks’ that we do not normally ask and stresses at home that tipped us collectively over the edge.  The scene that started with my disregulated son spitting at me, cursing, and knocking the glass of water for his melatonin out of my hand and ended with him sobbing in tears after he saw mummy and daddy yelling.  Then the household-wide aching silence as we all tried to tiptoe around our tiredness and the feeling we have all just gone too far.  The conversation I had to have with our youngest, despite the desire to bury my head under my pillow, saying it’s ok.  Sometimes when he gets frustrated he does things he doesn’t mean and he throws things.  We understand.  Sometimes mum and dad get frustrated too and they yell.  It’s ok.  We’re ok.  I left the room, thinking it’s calm.  Then the smell of sulphur and the realization that our son was striking matches in his bedroom, commandeered from one of the houses where he stayed. And I see he was googling “how to light a match with a lighter” and we realize yet again how serious it is that we keep things calm around here, how even on weekends where mum is sick and in hospital we all must be vigilant, maybe hyper-vigilant at those times.

I know my joking Facebook posts about hospital foods showed a light face.  I know that even still after all this time even close family and friends cannot understand the different behaviors at home, once our son’s game face is released.  I know if we had called any number of people on that post-hospital Sunday when really we (I) needed rest, they would have come.  I truly don’t write this to make those around us feel bad.  I know they would have come.  I write this because I know other families struggle along as we do.  I know there are so many who will “get it.”  Other families who know how very hard it is to ask.  Raising a child with FASD puts added strains on the most stressful times.  Times like these.  When mums and dads get sick, the whole thing can crumble. And of course, that is the fear we all carry in our hearts as we raise these precious and vulnerable kids.  That’s the door we cannot look beyond.  What will happen when we no longer are here?

So, anyway, I am here at home.  Not dying (thankfully) but undiagnosed.  Still feeling like I have been run over by a bus.  Life goes instantly back to “normal.”  The thoughts still swim in my head wondering if this is psychosomatic (though I know it cannot be and now there is medical proof of that).  Still, I wonder, maybe I am making it up, maybe I just need to juggle my stress better, maybe it’s not that bad, maybe I don’t want to go for follow up appointments, maybe there is no point if they aren’t going to tell me anything anyway.  Those thoughts, the difficulty of balancing it all, has my stomach in knots – I was pretty sure of that while staring into the toilet bowl before 8 am on the morning I first came home. That wasn’t any newly caught hospital bug, that was my life.

The pressures on those caring for kids with FASD is immense.  When and if my son reads this on some future day, I want to be clear that I am not blaming him for the added stresses.  He is the last person I blame.  I haven’t googled it, but I would bet that parents of kids with special needs have medical issues that are too often overlooked until they become chronic.  I would bet many marriages don’t weather these stormy days as well as mine can. (And so I will say it now to my husband, I really am deeply sorry for that most recent Scene From Hell. And for whatever one is coming down the line in the near future.)

It can be an uncaring system that we have to navigate.  People defend the NHS, and I do too.  But I don’t excuse it.  Obscene budget cuts have created an institutional failure to thrive.  The people in that system are trying.  Nurses who tell me they don’t drink water during their shifts because they have no time for toilet breaks.  Junior doctors who are talented and well-meaning but who are taking the brunt on the front line of a system that is throwing them to the tigers with equipment that is broken and a lack of resources and options.  Bureaucracy that leaves kids with FASD brain injury waiting years for diagnosis, and once there is diagnosis leaving the families bushwhacking their way through the confusing, disconnected, and few-and-far-between services.  A system that wears down carers to their outer limits, and then regurgitates them too when they need help.

So there we were.  My son and I sat on the steps only 10 hours after my discharge, finishing up his poetry book assignment – one of the most intense homework assignments he has ever accomplished.  It’s really good.  And yes, I scribed for him.  Yes, I prompted him when his brain couldn’t figure out conceptually what was being required.  But the book is full of his thoughts, his quirky humor.  I know that no one else could have coached him through this over the past weeks in the way that I could. We’re a team.

And yes, I helped him mop up the water he threw at me, pushed aside my weariness and rubbed his back as he cried after the most recent meltdown, even as those regretted shouted words between my husband and I hung in the air.  Tiger Mom even in illness, for better or worse.  I am glad I can help our little guy.  I will give all I have to family. Even on days there is little to give.

I just wish sometimes that the government saw past the need to supply far away battlefields and chose instead to give armor and support to those of us fighting the good fights for our kids right here at home.  They have the money. They do.  They just choose to spend it on other things.  I try not to be too political here, but the lack of support for those with special needs and their families is a political choice that does not speak well for a supposedly caring society.  The message is clear: just don’t get sick (especially on weekends).  Soldier on.  Don’t expect us to equip you for this particular battle right here on our doorsteps, inside our homes, in our hospitals.  We’ll spend trillions on “peace and security,” just not for those with special needs or those who are helping them.  Not today anyway. Not fast enough to help our son.  So, we’ll just get on with it.  Because that is our only option.

My heart goes out to all those who have looked through the doors I have faced this weekend.  I share the relief of those who have been able to turn away again, if still unwell, to the daily chaos.  I wish you all strength to find the answers you need to not only go day by day but to feel truly well again.  And for those parents and carers who are through the door – those who have diagnoses and still carry the worries of what will happen to their children – I send you solidarity and share a dream of world with different priorities.  I wish you and  your children true peace and security.  In the meantime, we can only cherish the days we do have. However imperfect, the very fact we are here together is splendid and worthy of celebration.  I know from my parents’ illnesses, and I know from looking into the eyes of those brave people I just saw in the hospital beds and chairs, no matter how bad it is, we have it in us to fight for tomorrow.

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.

 

 

 

 

 

 

 

Some moments

We love a child with #FASD

By @FASD_Mum

Your child has snapped.  Suddenly, you are scanning the room to see what is breakable, what is heavy, what is sharp.  You are assessing where your other son is, where the dog is, where the windows are in relation to the likely path of that whatever-it-is-this-time that is in his hand.  You are swamped with feelings, frantic, fighting down your own instinct to yell, to over power.  You have read enough to know: You. Must. Be. Calm. Really. Calm. Now. But those books don’t tell you how to stem your own flood of emotions, the fear, the distress, the frustration, the why-are-you-doing-this-to-me-who-loves-you-most self-pity that does come (of course it comes).  He’s a banshee, screaming in your face all the words you have spent years avoiding, diverting, discussing, banning.  And he’s good at aiming them right at your weakness.  You just want it to end, but you don’t really know how.  You know you need to back away.  You know you need to stop adding more noise, more chaos.  You know you need to be reassuring.  You know you need your love to wash over him.  But right at this moment he is way too close to the sweet ceramic plate he made for you and you yourself are not yet calm in this storm.  You shout (yes, you know you should not).  You place yourself between those kicking feet and the dog.  You want someone to beam into the room and slow it all down.  Images flash through your head of a hundred things you did wrong as a parent this morning that led to this moment.  You yell at your husband, irrationally angry at him because he doesn’t know what to do either and because you can.  He will understand. You hope. In a flash you hope that bond is not getting too frayed in all this tugging and pulling and shredding of normalcy. But you can’t stop this.  It’s all happening anyway, despite the books, despite the hours, days, weeks of research, despite the strategies and supposed-to-s. And of course the added noise now of your own loss of control only ratchets things up.

These moments are fast, furious, and unpredictable.  They are bewildering, overwhelming, and the worst of the problems we have yet encountered with our son’s Fetal Alcohol Syndrome.  We can handle the rest of it, but this leaves us adrift. We spend our days analyzing the lead up to these moments, trying to avoid them, walking with the knowledge that one may be waiting around the next corner.  This moment now may be calm but we can never fully predict the next outburst.  Well, we can predict it, but not always avoid it.  We are thankful that so far these mostly only happen at home.  He is able to hold himself together in other situations.  We are proud of him for that.  It must take enormous effort. We are petrified what might happen some day in the future at the wrong place, wrong time.

We believe his side effects of stimulant medication are making this worse, much worse.  We try a couple of weeks off the medication, and he is ‘more crazy, less angry’ as our elder son describes it.  But he is like an engine revving too fast.  He cannot focus in that un-medicated state, at least not without us having more tools in our parental toolbox than we have at the moment.  So we try a new short-acting medication only for school with great success…at school, but with continued and perhaps increasing disintegration at home.

And then it’s half-term break and who the heck knows what to do now.  We don’t.  We don’t give the meds, he is all over the place.  First day of break he wears his aggression on his sleeve.  Unable to do that again, we do give the meds the next day, but it’s too late, the anger and agitation is already unleashed.  Now we try again a couple more days without the meds.  He is on a chemical rollercoaster that is not really fair to him. We know our home is not structured enough, it’s too messy.  We know that screens sometimes help – except when they don’t, and then they really don’t (where do you think he gets these ideas to ‘prank’ people, the ideas to have food ‘challenges,’ that particular way of spitting out that particular insult with such gusto?).  We know he needs to avoid sugar in mass quantity (learned that one the hard way), but then he finds a secret stash of Smarties that were purchased to put into cookies over the holidays.  So all hell breaks lose at 8.45 am when he is told that he must wait until after lunch for those.  Flailing, sailing, crashing chaos ensues.

Our son has always liked wigs, dress up clothes, and has been pining for sparkly heels for years.  Yesterday I finally relented and he has now a pair of shimmery gel shoe heels.  He loves them.  He has been dancing around wearing a wig and feeling particularly pleased.  But the heels are remarkably hard for so-called ‘gel’ and they hurt if they are aimed at one of us – intentionally or not.  The buckle is fiddly and he cannot do it on his own.  They are quickly becoming Public Enemy Number One in our house. The rules are he is allowed these clothes for dress up and performing at home, but then he wants to wear them on the dog walk.  You can guess for yourself where this is heading.

I do not and never have cared a whit whether someone choses to love a man or a woman.  I believe love in all its wonder is to be treasured.  I will love my kids whomever they love.  I respect and celebrate it when people push gender stereotypes and dress the way they want to dress.  I can handle it if my son prefers to sparkle and shine.

I like to think we are cool parents.  We have slowly over the years increased our son’s dress up basket to include skirts and sequins.  He absolutely loves dancing in costume.  He loves the feel of hair or silk around his face as he twirls.  He’s good, really good, at performing.  Who am I to say he might not be the next glam rock sensation (or pop-glam or just glam)?

But every bit of my self-perceived ‘coolness’ evaporates when it is tested by the thought of sending my vulnerable son out there wearing a wig and sparkly heels into a world that already doesn’t doesn’t understand him.  So we compromise and he has an Egyptian pharaoh headdress that is ok for outside, some blue half-glitter boys’ boots he can (but never does) wear on the scooter.  These are arbitrary distinctions totally lost on a child with FASD.  I know it, I get it, and we pay for this confusion nearly every day.

Perhaps I digress, but not really.  The point is our lives are arbitrary.  There is no rhyme or reason to some of these moments that cascade into chaos. You may read this and think you can spot ten different things that we are doing wrong (get all candy out of the house, don’t let him have screens, don’t bring the sparkly shoes into the house).  And you are probably right.

This is complex, interrelated.  Things tie into other things in ways you may not realize from afar.  For our son, it is dress up clothes, which way the windshield wipers go on a car, whether streetlights overhang or are straight up, if the spoon is touching the food when he sits down to eat.  The triggers are random and run deep and vary from kid to kid. One day something bothers him, other days it does not.  If something catches his eye at just the right moment, suddenly that can become the focus of intense desire or revulsion.

Our son has brain damage.  He cannot maneuver the world in the way a neurotypical person would.  I cannot fully explain or understand how the various connections are firing off or getting misdirected inside his head.  I just know that if he wants something one way and if at the moment he cannot understand why it cannot be that way, bam! We are off and running.

The key of course is giving him the tools to be able to begin to understand himself.  We try.  Every day we try.  We improvise.  But some days, weeks, months, it feels sorely inadequate, our learning is not fast enough.  He is speeding toward adolescence, and we are all still woefully unprepared for the hormonal storm that we know is coming.

The moment after a blow out, we are stunned.  He is perhaps up in his room, in the dark, rocking to music.  We are perhaps staring at our own screens, not yet ready to talk, too edgy, feeling defeated.  Scared.  Maybe my now-saint-of-a-husband maneuvered him out the door and our son is already racing by the river on his scooter, with the dog, laughing and loving the way the wind streams through his pharaoh headdress, the meltdown gone now from his being.

In these moments after the storm, I am empty.  I know that we have it better than many, many parents raising children with FASDs.  I know our son is one of the ‘lucky ones’.  The alcohol did not do its worst damage on him.  But still, we parents are left adrift by a System that doesn’t give us enough to really help our children.  We improvise, we become advocates ourselves, parent networks try to fill in the gaps where the System has not yet provided support.  But seriously, it’s not good enough.

By some estimates 3-5% of the UK population has been affected in some way by in utero exposure to alcohol.  There is a spectrum of needs.  Thousands of scenes like the one I described are being played out in houses across the country. And that’s just one window into the life of a child with an FASD, there are other ways this brain injury presents in other kids, in our kid, in other settings.  The effects last forever.  There are thousands of adults walking through this world misunderstood, perhaps undiagnosed. Struggling.

A limited number of experts know how to advise us to avoid the scenes I described.  There are therapeutic strategies that have been tried and tested worldwide.  There are educators who know how to teach our kids.  There are answers out there.  But those experts who are already engaging in this field need funding, more need to be trained, the greater population needs to be better educated, and families need support.

But, for now, I must leave these thoughts.  They are back from the dog walk.  It’s time to push my maternal reset button.  Smiles.  Here we go.

 

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.

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.