Old Photos and the FASD We Didn’t See

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By SB_FASD

My favourite Maya Angelou quote goes something like this, “I did then what I knew how to do. Now that I know better, I do better.”

But I can’t help but feel sad at times for what might have been had I had more information, more insight, and more understanding into our son’s struggles at an earlier stage.  I love the Facebook “memories” that pop up daily in my news feed.  But this steady drip of what we were doing 3, 5 or 7 years ago stabs my conscience.  Our son was adopted at 16 months.  He was not diagnosed with Fetal Alcohol Syndrome until he was 10 (he’s now 12).  He had lots of therapies over the years, don’t get me wrong, we were constantly in and out of every sort of appointment possible.  But no one gave us the overall framework to understand our guy’s struggles – we were micromanaging various issues.  No one said, “Your guy’s brain is wired differently.” No one gave us the lens to understand what we were seeing.

As a result, for too many years we just did not understand what he was showing us every day, in every way he possibly could.  How absolutely devastatingly frustrating those years must have been for a child who was struggling so hard to find his voice, to find his place in this world.

In one photo, it’s his second birthday.  We had just moved across the ocean – a huge world-shifting move for us all.  Our little guy is in a high chair, some cake with lit candles is in front of him.  He is beside himself crying, face red, I am down low at eye level – looking at him.  My face is confused, concerned, bewildered.  That photo most of all makes me want to cry.  It says it all – the love, the confusion, the chasm of misunderstanding, his world crumbling – burdened with our good intentions.

There are photos of him holding our fingers and then bouncing and bouncing.  We called it his ‘happy dance’ – since he was always happier after he did it.  He was showing us that he needed deep impact to feed his proprioceptive senses – that it helped him feel more centred in this world.

There are photos over years with a constant bump on his forehead from where he would bang his head – either walking directly into walls, or banging the floor (he also used to poke his eyes).  I now understand what one occupational therapist tried to explain about how when his system was so overwhelmed sometimes that a powerful pain signal would be reassuring, give his system something concrete to focus on.  (Why oh why did they not tell us how to avoid him getting to that point?  There are strategies, we know now, but didn’t know then….)  There’s another photo of him, age 5, smelling daffodils.  He looks more like a 2 or 3 year old, so tiny but we didn’t see that then – not just that his physical growth was lagging but also his social and emotional levels were so far behind other kids.

A video of him in a nativity play at school – perfectly in rhythm with the music, shaking some bells a wonderful teacher decided to give him so he had something concrete to do because he couldn’t stand still, couldn’t follow the story.  So obviously inundated with sensory overload but valiantly there in the mix of the other kids.  What were we thinking?  How do you balance that triumph of his overcoming a moment with the desire to want to cuddle him and protect him from exposure to such an overwhelming environment?  A video of him in a theatre group – perfectly in rhythm with the music from Grease, but so small, looking left and right to see if he is doing the right thing.  (He was.)  The remembering of moves was made easier because they were linked to movement and music.  A sign of his need for multi-sensory learning.

Picture after picture of him in mud, playing with bubbles, in dress up clothes that swirl and provide sensory input, in pillow and blanket forts that give him the needed feeling of safety and comfort.  Some photos of things gone wrong, moments of tensions that exploded.  Holidays where you can see the strain on all of our faces.  Tears at broken toys.  One incredibly heartbreaking photo of him sobbing with distress on his brother’s birthday, unable to understand why he was not getting a present too.  That time on holiday when he made a list of what we would do that day on a toy blackboard – showing us he needed structure we were not providing.  We thought it was cute.  We didn’t realise he was showing us how to stop him from drowning.

Photos over several years where we now see clearly the facial features of FAS and wonder why those medical and other professionals around us didn’t see it too.  Suppressing the bitterness, feeling just maybe they let him down most of all.

I would have done so many, many things differently for the toddler, for the young child.  I would not have forced him to sleep listening to music I chose, or in silence, or with a night light, or in pajamas that had feet in them. I would not have held him to stop his rocking.  I would have better understood his aversion to some foods was sensory-based.  I would have given him more structure, less input. I would have known that his brain was in danger of shutting down with too much input. Most importantly, I would have slowed down.  Changed the environment.  Turned off the background noise.   I would never have taken him into those stores where he always had meltdowns.  I remember my husband spinning a shopping cart with him in it as the only thing he could think of to try to calm our child in full meltdown in one store.  I was mortified but I see now why that probably worked.  (I also see we should never have been there in the first place.)  I would have taught our son differently.  I would have realized those times when we struggled to get him screaming into the car seat were times when we should have helped him calm, we should have reassured him, handled transitions more gently.  I would have listened to him.  I would never, never have put him into those time outs.  (Thanks very much, tv nannies – your strategies actually do not work for all kids.)

It would have changed my world, his world, our world to know then that he was not having tantrums, but in those heartbreaking, adrenaline-infused moments he was incapable of doing what we were asking him to do and we were the ones…WE WERE THE ONES who needed to chill out.

I didn’t know then what I know now.  This steady drip of pictures reminds me of that.  And I struggle with that guilt that bubbles just below.

But then, I look harder.  I also see hope in those photos.  I see the exuberance of a lovely spirit that was not crushed.  I see a child who felt empowered as a part of our family to keep trying to tell us what he needed in those ways he knew how.  I see a strong-willed boy who has always had to battle for himself, to find his own way forward in the face of every external pressure we and the schools applied.  I see a kid who has never given up, though the pressures of the world nearly crushed him last year.

I see a kid day after day, moment after moment seeking answers to why his world is so confusing.  I see a kid who trusts us still, despite what he sometimes says when impulses run faster than social niceties.  I see a fighter.  I see someone who can make it in this world even when the powers that be don’t ‘get’ him.  I see an amazingly brave and resilient soul who has so much to teach us all.

I can’t change the past.  I can’t take back those days of not understanding.  But I sure as heck can do better now.  And I am learning.  Constantly trying to better understand how to help guide our son into his future.  I am sure years from now I will look back at these days and wonder why I didn’t know more.  I’ll need to suppress my thoughts of inadequacy, ignore that simmering guilt, the fears that maybe I am not good enough for this job.

I guess all I can say is this: I’ll do what I know how to do, and when I know better – my dear son I can promise you this – I will do better.

In the meantime, keep shining.  Keep showing us the way.  And I will trust in you too.

__________

Note: For every person with the facial features of Fetal Alcohol Syndrome, experts say there are 9 or 10 others on the Fetal Alcohol spectrum – and while diagnosis was hard enough for our son who when finally tested  had 100% of the facial features, for others it is even more difficult – a ‘hidden disability’ that is way too often over looked.

For parenting resources, please be sure to check out the resource pages linked on the left-hand side of this blog.  Two favourites are here:

Information Leaflet for Parents and Carers of Children having Received a Diagnosis of FASD

FASD: Strategies Not Solutions

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Some Kindness Please, Brains Are Involved

We love a child with #FASD-5

By @FASD_Mum

It was just me and that machine.  Even my wedding ring was left outside that door.  Dizzy and uncomfortable, I tried to keep centered while the world jackhammered down on me in staccato bursts.  A pinging noise echoed throughout my head, a sonar sound like being in a submarine, wanting, needing to push off toward the open sky.  I imagined hanging onto my dad’s shoulders, he’d get me to the air.  My thoughts were everywhere, translating these overbearing noises into the familiar.  That tap-tapping reminded me of those days on my daddy’s jobs, when all the men were banging nails and building walls, dreams, for the people who would live there.  I remembered a fevered moment when my mom brushed my hair from my temple. I pretended that instead of the head brace it was her arms holding me still.  I kept pushing away the images of my mom after her chemotherapies, after she was swollen by steroids, after the brain tumor took over.  No.  I would not, will not, do not go there.

On Wednesday our 11-year old son with Fetal Alcohol Syndrome refused to go to school.  The day before had been horrid for him.  He couldn’t sit still.  The school routine is altered with end of the year exams and events.  They hadn’t removed him to a quiet space in time.  He was overwrought and lost it to the point of literally barking at a teacher’s aide.  They gave him a detention.  He was so upset by all of this we had a massive meltdown, one of a spectacular string that has left things broken, walls dented, spirits frayed.  We could not get him out the door to school.  The SENCO reached out, asked for him to come in for just a short hello, and he did.  They wanted to know what is bothering him.  He told them he was worried that Mummy has been in hospital.  They told him it’s good to go to hospital to find out what is wrong so they can help Mummy feel better.

Then the next morning when I woke him up he asked me in a sweet voice, “Are you becoming a gran?”  Images flashed through my head.  The bags under my eyes.  The pale skin.  The oversized shirts, shorts and black socks.  The day earlier he told me I should buy hair dye to bring back the blonde.  These are all little ways for him in his indirect way to ask me some big questions that he cannot form.   How many times in the past two months have I told him I didn’t feel well, that I was tired, that I would do something later, not now.  I felt sad for my son, feeling the weight of this on him when he is so young, so needy, so fragile still.  I know it is affecting both of our sons, but our youngest with FAS is simply unable to cope when I cannot cope.

The pressures of keeping on keeping on can be overwhelming when we ourselves are not feeling well.  The confusions this unleashes for a child with FASD are very real and we must deal with them.  We must deal with them when we are tired from yet more vague inputs from distracted doctors.  We must deal with them when the room is spinning and our heads are bursting.  We must dig deeper than we thought we could.  It is something I must do, any parent would do.

I am no expert.  And yet, I would bet a million pounds that every family with a special needs child has its core internal strength pulled and frayed to the point of snapping at some time or other.  I would bet that even the most positive people of good will find themselves at times like these stretched so thin it feels like it will all fly apart.  In our world, things literally sail across the room, break, and smash when we can no longer keep it all together in the way we know we should.  Our son thinks it’s his fault.  We know better than to blame him.  This responsibility makes a hard time even harder.  But I cannot turn away from that.  And I am not even very sick compared to some FASD parents I have been in contact with via social media.  I feel for them.  I feel for us all.  I feel for the children most of all.

I am a strong woman.  I can (kind of) understand my headaches, my dizziness, my strange ear sensations that leave me overexposed to shifting sounds and disoriented.  It may be due to something tangible or more likely something harder to pin down, like a virus.  Even though I understand it and the range of possibilities, it is bewildering to me.  The way I have been feeling has given me new insights into what it must be like for our son when he is inundated with sensation and overwhelmed by it.  My inability to stop the conversations around me, even though I say again and again – I can’t hear you, please slow down, I can’t remember, I am not thinking the way I usually do.  The way people look at me, they way they don’t really get it that I am not hearing them.  Then I get angry.  I get crisp. I sulk away and watch another stupid TV show about saying yes to dresses when I really truly could care less about what some spoiled rich kid wears down an aisle.  I watch it because it is mind-numbing and easy. I don’t need to hear it all, it’s visual.  Yes, I am gaining new insights into my son’s daily struggles.

I have been thinking lately that The System is simply not kind.  It’s not kind to leave a mother wondering for nearly 8 weeks as to what may or may not be causing troubles inside her head.  It’s not kind to hand me a printed sheet rather than a hug as I leave an MRI room, telling me I will have an appointment in 4-6 weeks to tell me what they may or may not have seen as a result of all that pinging, jackhammering, and pounding.  It’s not kind to ignore the worries and shuffle people out the door.  Maybe it’s the British stiff-upper-lip that has kept ships from sinking for eons, but it’s not kind. And yes, I will get answers sooner than 6 weeks because I will fight for myself in this cold system.

But even more importantly than my own struggle, it’s just not kind to make parents fight so hard to know what is going on inside their children’s brains.  At the same time I am grappling with this personal issue, I am reminded daily that people still have to really battle hard to get someone to consider diagnosing a child with a Fetal Alcohol Spectrum Disorder.  It’s simply not kind to the kids – the kids who do not understand why they feel so adrift, so confused, so lost all the time.  Why do we force parents who reach out for help to wait months or sometimes years before someone will help them understand their kid’s brain?  Why do we so easily blame the parents and their parenting styles when we know that there may be more to it?

It’s just not kind.  Months and years in a child’s life are ages.  It’s in no one’s interest to delay.  Early diagnosis increases the prospects for that person’s life.

This is very real.  We know there are many families out there right now seeking a diagnosis to help them understand their children, some with positive proof of maternal drinking and kids showing some of the classic signs of behavioral and other issues.  They are being told by doctors that Fetal Alcohol Spectrum Disorders are often used as ‘the easy way out’.  They are being told that their parenting is the cause of the behaviors.  They are being told they want these acronyms in order to make them feel less guilty.  Seriously?  That is not kind.  No sane person ‘wants’ their child to have irreversible brain damage.  No parent wants a diagnosis of an FASD because it is ‘easy.’   A good parent wants to know what it going on so as to meet their child’s needs and maximize his or her potential for a good life.

Imagine a different system.  Imagine a system where the doctors were our champions.  Imagine a system where the process was more than just stringing together a series of 10-minute appointments over several months, grasping for the little practical bits that can potentially change a life’s trajectory.  Imagine a system where someone stopped the manic battling, and just said, come in.  How can I help you?  What do you need?  How is the little one today? How are you today?

Our brains are complex, ornery, defiant.  I am not for a minute trying to say my recent experiences are the same as those faced by people whose brains have been affected by exposure to alcohol when they were in utero.  What I am saying is that when our brains are involved, the medical community should be kind.  It is not just simply one more organ.  Our brains control it all – from our moods to our expressive ability to our feelings to our ability to self-regulate.  Our brains are the core structure.  If we have problems inside our brains we cannot handle the rest of it.  And sometimes, the simple kindness of recognizing that can shift everything into a more positive place.

I realize these thoughts are a bit all over the place today.  I realize that there is a huge difference between how I am feeling and how someone with FASD feels.  All I know is that having something wrong happening from my shoulders up is disorienting to me in ways I have never considered before.  I have taken my brain and my senses for granted.  I have always relied on a sharp mind and quick reflexes.  I am thankful and very humbled to have this chance to think in a different way, to experience life from a less secure and maybe less privileged perspective.  I have even more respect now for people who walk through this world with such pressures coming at them from inside as well as outside.  I too now have learned to understand the relief of a darkened, quiet room (she types, in a darkened, quiet room).  I have felt my compassion for my son deepen through this process.

To all those out there who are struggling with their own issues as they try to help someone with FASD and to those with FASD who continue on even with all the struggles – here’s to you all, to us all.  If we can’t  find the kindness we wish for out there in the world, let’s at least let it be the one thing we can give in our own corners of the world today.  Today I will greet my son with kindness when he awakens.  I will try to surround us all with it, despite this ringing in my ears, the woozy rocking, and the state of the world around us.  Even if The System is not kind, at least I can (try to) be.  Even today when what I really want to do is bury my head under my pillow.

And with that, I literally just heard the patter of little footsteps.  Here we go…Happy Saturday…

 

 

 

 

 

 

 

 

Reaching Out After an FASD Diagnosis

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

———————–

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


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

 

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.

 

 

 

 

 

 

 

A difficult conversation

Do you love someone who might have been affected by alcohol in the womb?

By @FASD_Mum

As parents to a child with Fetal Alcohol Syndrome, we have chosen to focus primarily on helping people to better understand this condition and the needs of those with Fetal Alcohol Spectrum Disorders.  The prevention discussion is important and yes, at times, we do jump in on that topic, too – like last week when there was such an overreaction to the CDC’s graphics.  Now that the CDC graphics have been revised, hopefully attention will focus on the core advice, encouraging women to use birth control if they are sexually active and drinking to avoid the risk of FASDs.  This blog is devoted to showing why that matters.

As we learn more to help our own son, we hope our family’s experiences might help others avoid some of the long years we spent not knowing what was wrong with our son and how we can better support him.  Now that we know what we know, it seems like there were signs that should have tipped off someone that our son’s problems were not just sensory, not just behavioral, but due to fundamental structural issues in his brain.

With this post, I want to reach out for the sake of some other beautiful child who is out there somewhere in this world – maybe it’s a child you know, maybe it’s your kid – a child who is shining brightly but who too often goes through his or her day misunderstood, confused, frustrated, ‘in trouble,’ angry or overstimulated.

Ideally, I would want to be holding his parents’ hands and looking into their eyes so they can see my empathy (without accusation) while I ask them to think of things no parent should ever have to think about.  I want to reassure them that if in fact what I am asking them to think about is true, the sun will keep sparkling in their child’s eyes, his laughter will still be the best sound they can ever hear, his sweet kiss will always bring them a feeling of tomorrows and futures and hope.  Nothing we might talk about will change that.

I want to ask a question that can perhaps open doors for their child’s future that might otherwise be closed, a question whose answer can perhaps provide that missing link that people have been searching for when trying to better understand this beautiful being and her shifting, sometimes stormy moods.  I want to ask a question that I know may put someone on the defensive, when what I most want to do is reach past those defenses and lend a helping and reassuring hand.

I want to ask carefully, quietly, respectfully the one question that could unlock the brighter tomorrows we all want for this wonderful child:

“Did mum drink during pregnancy, maybe even before she knew she was pregnant?”

This is not a judgmental question.  I am asking everyone to set aside whatever stigmas might hold back this conversation.  If the answer is 100% “no,” then I am glad it is possible to move on to other options for what might be causing their child some difficulties.

If their answer is in their heart of hearts, “yes, mum did drink during pregnancy” (maybe a little, maybe a lot) or if the answer is “0ur child is adopted/in care and we simply don’t know,” then it’s time to explore further questions. Please hear me, I am not judging.  This is not about blaming anyone for anything.  It’s about helping this wonderful little soul.  It’s a conversation I wish someone had with us several years ago.

I’m no expert.  But if I were sitting there with these parent(s) or caregivers, these are the questions that I would ask, to open up the discussion.

  • Does your child get overstimulated easily?  When you are out in the grocery store, when there’s loud noise, or something doesn’t go the way he expected, does he ‘flip out’ or have extreme tantrums you don’t know what to do with?  I mean extreme – do these moments seem wilder and longer than you might expect?  Do you feel bewildered, unable to ‘control’ the outbursts, does it seem like everything you do doesn’t help? Does he sometimes kick and bite and shriek?  Does he strike out sometimes like a cornered cat?
  • Or does she switch off sometimes, get a ‘blank look’?  Does she retreat, maybe into small spaces, under blankets, pull clothes up over her head?
  • Does she get stuck on one thing over and over and over again? Does she sometimes repeat sounds, is she ‘fixated’ on certain videos or songs?  Does she have unusual things that she likes, things that she comes back to again and again?
  • Are there toileting problems?  Does he bang his head? Rock to calm down? Does he pick at, poke, or bite himself, sometimes until he bleeds?
  • Does she seem unable to link cause and effect?  Are time outs hopeless, drawn out, and unproductive for your child?  Does she have trouble remembering why she is ‘in trouble’?
  • Does he have royal meltdowns coming and going from different places? Is it sometimes impossible to get him to put on his coat or his shoes when it’s time to go?  Is it absolute ‘chaos’ trying to get out the door for school or nursery?
  • Does he just not ‘get’ time – does he seem not to understand the difference between five minutes and 30 minutes and next week and next year?
  • Does she have a strong reaction to whether it is light and dark, or too smelly or too scratchy?  Does she hate wearing socks that are too tight, tags on clothes, or do you have battles because some clothes feel funny?
  • Does he have trouble ‘relaxing’ or just sitting still? Is it hard for him to focus for long stories?  Does he lose track of the story, does he ‘miss the point’? Does he take things very literally, get confused if you make an analogy?
  • Does he have great trouble falling asleep?  Are nap times and bed times battles?  Does he ‘rev up’ when other kids would wind down?
  • Does she get easily sidetracked if you tell her to go into the other room to get something? Do you find her later wandering around or doing something else, having completely forgotten what you asked her to do?
  • Is he hard to console? Does he get ‘hysterical’ at times when you don’t really understand why?
  • Does she have other physical conditions, like trouble with the spine, hips, legs, trouble with motor skills?  Does it seem like she needs to jump around a lot? Does she need to feel a lot of pressure to comfort her?

Of course every kid has a little of these sorts of problems. I am not implying that a positive answer to any of the above is reason for extra concern. The terrible twos we all dreaded are real and rarely confined to the ‘twos.’

I am talking about extremes.  Is your kid is always ‘the handful’ – the one that people shake their heads about, the one who you can’t quite get to do what you want her to do?  Are you at wit’s end trying to figure out what’s going on?

I am speaking directly to your heart: IF you answered ‘yes,’ mum did drink alcohol (any amount) while pregnant (maybe even before she knew she was pregnant) or your child is adopted/in care and you just don’t know, and IF when your read some of those points above some of those hit home (it doesn’t have to be all of them, or even most of them) – not as in a ‘yeah there was that one time when’ kind of way but in an ‘Oh my, YES, that happens ALL THE TIME’ kind of way, then maybe you might need to consider, for your child’s sake, that there might be more to these difficulties in self-regulating than the way you parent or whether he has had too much sugar in a day.

There may be something deeper, something structural, something that is just a little too much for your parenting skills to handle alone without further information, further medical help.

I remember a day with our son when he was about three or four.  We were sitting on the floor, playing with blocks, and counting.  I was playing a game, adding one block, taking one away or some such very basic math concept.  And he kept blithely stacking them up without ‘getting it’.  I tried it several different ways to show the concept and still it did not register.  I remember looking up at my husband and saying, “He’s not understanding something fundamental here.  Something’s not right.”  I couldn’t name it, but I felt it.  I knew it.

Or the time in the car a few years later when he was so thoroughly out of control, screaming and kicking and flailing at my husband while driving.  I had to use a full body hug to keep us all safe.  We were all a little shell shocked after that one.  It wasn’t ‘normal.’  We all knew it, but didn’t say it.

There was a Christmas when he was still little, a nightmare of a day when all he wanted to do was spin the shiny balls on the tree and open shiny presents.  He could simply not wait any longer for dinner, could not handle the sights, the smells, the anticipation, the lights.  He was overly agitated, unnaturally hard to console. So we ended up sitting on the steps, rocking together.  Something wasn’t right.  We all knew it.  We couldn’t name it.

Moment by moment, day after day, the concerns grew.  In the shopping centers, walking to school. Later, as he grew older, we began to have different insights once his words started to show the depths of his confusion about some things. His learning was patchy.  He is great at some things, and other ways he was years behind his age, especially emotionally.  We always knew there were sensory processing problems.  We always knew there were speech and language delays. We got through it, with the help of a whole slew of therapists, doctors, and eventually teachers.   We knew there were problems with his feet and his legs and his spine and his hand.  We knew he was small for his size.  We had been tracking his small head circumference for years.

And then, finally, when he was ten – after genetic problems were ruled out for the third or maybe fourth time, after an improper (or incomplete) diagnosis of autism, after we worked for a few years based on his ADHD diagnosis but still weren’t addressing all of his difficulties – finally our son was diagnosed with Fetal Alcohol Syndrome, one of the Fetal Alcohol Spectrum Disorders.  FAS kids are the ones on the spectrum who have the ‘look’.  The ‘look’ we and whole teams of professionals saw past for all those years.  When our son was measured, he scored 100% on the test of the facial features and still they/we did not catch it.  (I should note, our son was adopted without a complete maternal medical history, which complicated and delayed his diagnosis.)

We love our son dearly.  In our effort to try to help him by loving him so hard we missed somehow – as did that whole slew of professionals who I don’t fully forgive – the single most important thing that could help him most.  We missed the chance to fully understand the root of his behaviors, the ‘why’ behind his confusing actions.  But now we know and his prospects are now much better.

When a pregnant mum drinks alcohol, it passes the placenta to an embryo/fetus- every time, and each phase of development has risks.  While a mother’s liver can filter out the alcohol, the embryo or fetus cannot and alcohol can stay in its system for up to three days.  Alcohol is a teratogen, a substance that causes lasting damage to a developing embryo or fetus, worse than heroin, worse that crack.  The scientists don’t know exactly why, but sometimes it has an effect, sometimes it doesn’t.  Most of the damage is done when mum is drinking a lot, but it is also possible for even low amounts to do damage depending on many unknown variables. They are learning more and more about the early part of the first trimester and the possible damage that can be done totally unknowingly before a woman might even know she is pregnant.

I want to say to those loving parents/carers, I am sorry to bring these thoughts into what should be your child’s sweetest days.  I am sorry to add worry when I know you already are worried.  I am sorry that our society does not make it easier to talk about these things.

I want to tell them, starting now there is much you can do to assure yourselves.  The first, very first thing you can do is bring your child to the pediatrician and talk, really talk, openly and honestly about the pregnancy and whether or not mum drank anything at all from the very first days before anyone knew she was pregnant, through to the end of the pregnancy.  You need to ask the pediatrician what they know about Fetal Alcohol Spectrum Disorders – not just Fetal Alcohol Syndrome, but the 400 other conditions that can co-occur with FASD.  If they don’t know much, find someone else who does, visit a specialist clinic, google or contact a national organization for an FASD support group near you and ask those parents for their suggestions of experts in your area. Unfortunately, the training professionals receive is not always up-to-date on FASDs.

Do not let a doctor turn you away just because your child might not have ‘the look’ – very few kids on the spectrum have those facial features which as it turns out relate to specific damage done during only a very few days in early pregnancy (and even those kids who have ‘the look’ outgrow it).  Despite what some doctors may tell you, facial features are not the only indication of alcohol related neurological deficits.  Ask for an FASD evaluation by qualified experts – too many kids are misdiagnosed.  Even our son, who did in fact ultimately measure for 100% of the facial features, went undiagnosed for 10 years.

If the experts think this is worth further exploring, go into high gear.  Educate yourself, instantly start reading about and implementing FASD parenting strategies.  We wasted a valuable year and a half from when this was first raised as a possibility and when we finally got the diagnosis.  The fact is, the brain structure of kids with FASDs is different.  The typical neural pathways have been damaged.  As a result, traditional parenting strategies do not work.  You will need to readjust things in order to create an environment that will be more manageable for your child.  You will need to get the schools to think about strategies for both primary and secondary schools.

You will learn that for some kids time outs are a total waste of time and are counterproductive.  You will learn there are many ways you can help your child by avoiding overstimulation.  You will learn the ways to structure the day to avoid confusion and meltdowns.  You will learn ways to reinforce your child’s learning visually and you will understand the need for small, direct, literal sentences.  You will learn with relief a great deal about how those ‘tantrums’ are not the result of bad parenting or a ‘naughty’ child. They can be caused by underlying physical realities inside your child’s head.  Kids with FASD have a serious physical disability.  Just as if they were missing a limb, were blind, or deaf, kids with brain injury need certain accommodation and support to help them achieve the very many wonderful things they can achieve.  The world opens up again for them once people around them – at home, in schools, in families – understand they are seeing the world through a different lens.  The damage, I am so sorry to say, is irreversible, but there are tools to help your child cope better as they grow. I firmly believe the new technologies in our world will immensely help the generation of kids being diagnosed today, so their futures can be even brighter.

I want to hold those hands and look into their eyes and say, “You are not alone.” According to the CDC, 1 in 20 kids in the USA alone is somewhere on the FASD spectrum, in the UK some experts put the figure at 3-5%.  We need to get better about understanding it, diagnosing it, working with these kids in appropriate ways to maximize their potential.

There are way too many adults walking through this world who have undiagnosed FASDs.  Truth is, we don’t really know which of our friends, colleagues, family members are affected – those who have always struggled, maybe got into trouble, those people who can’t seem to get themselves settled without a great deal of help, they may be walking around with an undiagnosed FASD.  There are some amazing adults and young adults with FASD, some of whom received diagnoses as adults, who provide great hope.  And they are the first to say how much different their lives would have been if they were properly diagnosed, if they could have avoided spending some of the hardest years of their lives never really understanding why things were so hard for them day after day after day.

Forget the wives’ tales.  Forget what you think you knew about alcohol and pregnancy.  If you know mum drank at all when she was pregnant (or before she knew she was pregnant), and if you have some concerns about the development or behavior of the child, (or young adult or adult), then get advice from a doctor.  You would not hesitate to take your kid to get tests if you feared a concussion.  Go find the answers.  If there is a chance your child has this hidden medical disability, facing this now could make a profound difference in his or her life.

Do not fear a diagnosis, fear the alternative.  Fear a lifetime for your child of confusion, frustration, self-doubt, depression, maybe other problems with a System that doesn’t understand his or her needs.  (I am not going to list those here, you will hear them soon enough.)  Don’t fear knowing, fear not knowing.

I want to whisper to that sweet child, “You will be okay.  You have done nothing wrong.  Your parents will get you the help and support that you need.  As you grow older you will better understand all of this.  You may be different and you may have to try harder than most other kids.  But you are beautiful, you are loved, you are special.  Your parents will help you.  Just keep shining.  Keep on shining beautiful child.”