Old Photos and the FASD We Didn’t See

Blog_OldPictures

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

When a School Rocks

SchoolRocksBy SB_FASD

They cheered each other as each new car arrived with another student.  They were wearing their production hoodies and shirts and school uniforms.  They were buzzing with positive energy – ready for their third performance of the day.  Not nervous, buoyed.  Several kids were introducing our son to their parents.  Some of his new friends broke into huge smiles when they saw us and one gave me a big hug.  The spirit was high.  I was expecting nerves, uncertainties.  But instead this place was alight with confidence and a sense of fun and accomplishment.  These kids were in a good place.  Soon they would be onstage, but in these early moments before the curtain was raised, they were already a team.

Our family has extensive experience with theatre.  The lead up to this night was every bit as intensive a schedule as for a semi-professional or major amateur theatre group.  Before they got to this place, hours of expert direction and guidance took place.  Even before they started rehearsals, these kids were being prepared for their moment.  And that is the thing that brings me to tears every time I think about, sappy soul that I am (or that I am becoming).  The whole school experience for these kids makes nights like this possible.

I don’t know all of their stories, I just know our son’s story.

Our son has always loved music, performing. He’s kind of awesome at it.  He’s now in Year 8.  He attended mainstream school until last November.  In his school’s end of year production in Year 6, he was given I think three words to say, and was placed behind a taller child where no one could see him.  In Year 7 at the secondary school, he eagerly attended the rehearsals for Oliver (he knows every word of the songs) but he had to drop out because the school was not set up to support him through the rehearsals and he was getting into trouble.  Only a few months after he was close to rock bottom having nearly been crushed by the pressures of his old mainstream school, here in this specialist environment, with this team of educators who understand his needs (he has a diagnosis of Foetal Alcohol Syndrome) and have the resources to support him, not only was he onstage but he was in a main role, with more lines than I thought he could manage, and singing his heart out.  And his teacher was literally #intheband!

And as I watched this theatre full of amazing students I was multiplying in my mind his story by her story by their stories, and the full impact of what was happening left me humbled.

THIS IS HOW IT SHOULD BE FOR EVERY CHILD, EVERYWHERE.

There they were, these brave, hard working kids, singing their truth:

I’ve got so much to say,
If only you would listen.
I’ve tried ev’ry which way,
And still you never listen.
Can’t you see I’m hurting?
I couldn’t be more clear.
But I promise,
One day I’ll make you hear.

You know I try, try, try to explain–
I’m not the kid you want me to be.
And yet it’s all, it’s all in vain–
You just don’t want to see the real me.
You think you know what I’m all about–
And yet you just keep shutting me out!

I’ve got so much to share,
If only you would listen.
You could prove that you care,
If only you would listen.
I’m not gonna beg you–
You’ll never see a tear.
But I promise, one day, I’ll make you hear.
(Lyrics, from If Only You Would Listen)

We had a young friend with us, a child who attends our son’s old school.  She said she wished could go to this school too.  She didn’t see anything other than a cool school, with students who were having a great experience.

We were told by the head teacher that while any school should be happy to have a student like our son, this place is perfect for him because he is so very comfortable being who he is.  I wrote about this in the last post, but I just can’t say enough how life-changing it is as a parent to know that your child is in a place that welcomes him, appreciates him, and wants him to be there.

Those words hold power.

They hold the power to change trajectories, to forge positive futures.

I am not saying this performance was smooth throughout.  There were microphones that didn’t work, lines that took prompting.  But what I loved most of all was imagining our son one day being like the lead actor – a talented young man who captivated us all last night – helping another young student like our son remember his lines some day.

More than the cheering each other upon arrival (which was truly awesome), I was deeply, deeply impressed by the way these students guided each other.

That is what this school is teaching.

And there they were!  Some kids for whom even standing up in front of a room full of 120+ people would be a potentially crippling thought…some students who in other places would be mocked or sidelined or silenced – shoved to the back of the room, put into a side room or perhaps even excluded at times…some young adults who have overcome more than most of us will ever have to face…there they were.  Shining.

During the curtain call, when the cast and crew were all onstage dancing and laughing and giving themselves high fives, we saw our son for the first time with his tribe.  These kids weren’t patronizing him, these kids weren’t including him because they were told to, these kids were standing by him, with him.  Together, they made us hear.

AND, they had a confetti cannon.  You have no idea how much it means to our son to be on a stage with a confetti cannon, hearing the applause.

This school rocks.

(Now, how do we make it so every school can rock too?)

Finally!

Blog_WhenOthersGetIt
By SB_FASD

It was the end of the school week.  We were at the school for a serious parent/teacher meeting, a meeting we had requested.  We had hoisted the red flag a couple of weeks ago – our guy’s behaviours at home have been escalating.  We were getting worried. If we are honest, it’s been a challenging couple of weeks (though still nowhere near as hard as it was previously).  He’s been talking about getting bullied. We were prepared for a difficult discussion.

We were ready.  We had print-outs of information about FASD all neatly organized in a binder to leave at the school.  We had a notepad with a list of topics we absolutely wanted to cover.  For the first time since he started attending this new specialist school, school refusal had reared its head that morning (if tentatively). We were there to help nip things in the bud, to explain our guy’s side.  Tired.  Defensive.  Pensive.  Rushed.

I guess we grow used to being parent warriors.  We grow used to having to push, to being overly forceful, cajoling, persuading (I have been known to beg at times) just to make sure those around him are giving our son a chance.  We were on edge.  There are few options out there if things don’t go well at this new school. We were feeling desperate, concerned.

We are not in daily contact with this school, as we have been with other schools. This one is a taxi ride away and we don’t see his teachers very often.  We don’t know them as well.  We do have some phone calls, emails, but we didn’t know what to expect in this meeting. How would they respond to the bat signal we sent out a few weeks ago when we started to see some things deteriorate?

We sat around a table with his teacher and his learning coordinator.  Friday afternoons are never the easiest for our guy, but he was awesome.  He participated in part of the discussion and they praised him for providing the details they needed.  I was impressed – both with him and how grown up he seemed, and with the way they gently reinforced him during the discussion.   After a while, we let him go into the hallway, where he amused himself while we spoke one-on-one with the teachers.

And then, magic.  It took me a little while to grasp what was going on.  I was off balance.  I was having trouble wrapping my head around what these two educators were saying.

I literally put down the pen, closed my notebook, and just absorbed it.  In all these years of formal education, never once had someone spoken like this about our son.

I felt this veil lifting.

They could see him.  I could see that they could see him.

I was floored.  Humbled.  Enthusiastic?  Overwhelmed.  On sadly unfamiliar ground, but ready to do a jig.

They talked about a kid who is helping others to learn, building friendships.  They were talking about a kid who is well-liked.  They were describing someone whose talents are recognised and celebrated by the whole school.  They talked with smiles on their faces about a kid who literally is dancing in the corridors.  They were talking about a kid who is exceptional in many ways.

They were talking about our son.

Most amazingly, they described a child who is so comfortable in himself that he is helping change a dynamic among his peers.  Through his example, he is opening up conversations about each person being unique, not fitting in boxes.

They see him!

They addressed the issues we were there to discuss.  Professionally, competently.  Compassionately.  In fact, we dealt with all those points on my sheet of paper without my having to tick them off one by one.  These educators – the whole school in fact – “gets it”.  I cannot explain what a mind-blowing change of reality that is.  We still haven’t fully absorbed the difference of being in a special needs educational setting.

Toto, we’re not in Kansas anymore.

Even if they have not had great experience with FASD, they were interested to learn. They welcomed the fact he is taking on board his diagnosis and told us with a chuckle about the time he cursed at the deputy head, and then apologized, saying he was “dysregulated”.  (We had the distinct impression they are not used to 12-year olds saying that.)  They welcomed our binder-full of FASD flyers, printouts, tips for educators.  They said they would share it with colleagues.

We could see the “aha” moments as we filled in some gaps about things that might be different about our guy from some of their other students.  We explained things like confabulation.  We showed sheets comparing the differences between FASD and other diagnoses.  We talked about how kids with FASD may seem like other kids – for example, those with autism – but still may have some key differences in how their brains work and why they work that way.

It’s not like it used to be – when he tried so hard to conform to other’s standards, barely keeping his head (just) above water despite swimming as hard as he could.

Now he is in a place that doesn’t have a one-size-fits-all approach.  Here, just by being the amazing, unique, lovable, complex individual that he is, THAT is enough.  THAT is actually more than enough – in fact THAT is inspiring others.

In his old school we were worried he was getting lost among a thousand others, overwhelmed.  His spark was going out because he was under too much pressure all the time.  We had hoped that in a smaller setting he might be able to shine.  We never imagined once he started to sparkle again that he could help others do so too.

As we listened we heard the whispers of an emerging leader, a child comfortable in his own skin.  Oh my days! (As our son would say…)  What a wonderful, wonderful, encouraging and uplifting thought.

All our kids deserve to be seen.  They all deserve to have a chance to shine.  We hear time and again of kids being shoved to the back of the room and left unsupported, their needs ignored or side-lined by those whose who are tasked with helping them access education.  We have always had supportive mainstream schools, which is sadly too often not the case for many, but even still our guy had felt the weight of that world on his shoulders, and it nearly crushed him. Inclusion was and is something we believe in fundamentally.  But inclusion is more than simply sitting in a room trying to do what all the other kids are doing.

The difference in this meeting at this school was that rather than sitting worrying about how to fit our son into a box that he cannot fit into, here at this school there is no such box.  He is being lifted up and guided by people who have the training needed to understand him.  Even though there are problems which are quite challenging – I don’t mean to sugarcoat this – here his own strengths are being seen for what they are: gifts to those around him.

As parents, there is nothing more we could ask – there is nothing more important than those around him recognising what we have known all along: Our family/the school/the community/the world is indeed a better place because our child is in it.

That tension inside released a little, and all I could think was … “FINALLY!”

Prenatal Alcohol Exposure Damages Bones Too

blog-bonesBy SB_FASD

There are not many days when we dwell in that place.  Maybe you know it: the place where we are forced to imagine our loved one floating in the womb when the alcohol pulsed through his developing system.  The place where we are forced to think very concretely about what parts of his body were damaged and when.  We were standing before a 2-foot tall x-ray viewing screen at the Royal National Orthopaedic Hospital.  Somehow it’s different seeing it on screen, in black and white.  Suddenly, it’s not a “hidden” disability.  This, this is visible.

When he was little we found out he has some fused ribs.  That knowledge didn’t really sink in.  We just thought it was curious, absorbed the advice that he cannot play contact sports, and moved on.  For years in the bath I used to get frustrated he would not put his head back to wash out the shampoo.  Then we learned he has fused vertebrae and cannot put his head back.  After that news, we were relieved to hear it is okay for him to do gymnastics (since we probably could not stop him from flipping and jumping anyway), and moved on.  And here we are, a few more years later, staring at another huge screen once again, looking at more x-rays, more irrefutable damage.

He is more tolerant of these appointments now.  Because of an NHS record screw-up, and despite having had x-rays a few weeks ago, he sat for them again, resigned to it, even after I had promised he would not have to do that today. (Years ago he became dysregulated when he was having his ribs x-rayed we had to leave in full meltdown and return to have them done under sedation).  In fact, he’s a little too comfortable in the setting, I thought, as I watched him skipping ahead of us, dancing and twirling down a long hospital corridor.  I felt sad, a weight in my stomach.  This child so full of life has spent too much time in too many hospitals.

At the beginning of the appointment we were seen by the young registrar.  Now, x-rays in hand, we had a full team in the room giving us the results.  I forced myself to look at that screen and tried to see the “good” news they were showing us.  I tried to forget the obvious point that his right thumb is one-third the size of his left thumb and I tried to follow along with the reasoning that we were celebrating the fact this tiny joint was there at all and it is “stable”.  I know these doctors have seen worse, were prepared for worse, and I AM thankful.

And yet, the fact remains he has limited movement of one thumb. In the scheme of things, it’s not life limiting.  But to a budding musician…it matters.  To a 12-year-old who cannot yet tie shoes…it matters.  To a kid who frustrates easily and who has to use his teeth to open some things…it matters.  They tell us it’s possible a plastic surgeon might help.  We shall see.  More medical appointments are being scheduled.  It seems never-ending.  Because it is.

This is – and will be – his life.

I AM thankful, but simultaneously I tried to swallow down that internal scream I felt rising.  What happened to this poor child? I just wanted to shout it.  How is it possible so much of his system was so affected even before he first took a breath?  Look!  People, look!  Don’t you see?  The damage done is brutal.

And the nearly paralyzing thought: if this is what his bones look like, if even the hardest parts of his body were affected like this…what it did to that soft matter in his brain?  His tiny little growing brain never had a chance.

It was jolting, seeing the bone damage and having one of the UK’s top pediatric orthopedic surgeons talking compassionately while casually confirming what the doctors haven’t really said out loud before (as the other bone issues were found before his FASD diagnosis): this is all related to prenatal alcohol exposure.

Hearing it knocked the wind out of me in a way I haven’t felt in a long while.

Of course, I have known it.  But here it was on screen.  Alcohol was toxic enough to alter the development of his skeleton.  Think about that.

I don’t want to take that in stride.

This defenseless developing person-to-be had no chance to ward off the danger he faced there in the place where he was supposed to be safest.  Now for the rest of his life he will have to fight to be understood.  He will have to fight for his place in this world, in our schools, in our society.  He will have to fight to understand himself.   I felt guilt for feeling frustrated with him sometimes.  For forgetting in the heat of the moment.  For sometimes losing my compassion.  But on this day, I could not look away.  If this is what happened to his bones, what happened inside his head?  Was it panic rising inside me?

I got a bit pushy.  I asked if we were seeing the whole picture yet – or are we going to discover some other skeletal issue in another few years?  Were there other possible issues that we have yet to uncover? Are we looking at the whole child?  To his credit, this very senior doctor had our son jump up onto the table.  He checked his legs, feet and hips for us right then.  A kind nurse whispered in my ears, “If he can walk on his heels with his toes up in the air, it means the structure is ok.  He wouldn’t be able to do that if there was a problem.”  Our son had recently been complaining about his “rubbish right side” when he had trouble learning how to use Heelys.  We had been stunned to hear he thinks of his body in these terms.  It was a relief to know the leg/feet problems are again likely muscle-related and not structural, though it doesn’t make it any less real for our little gymnast.  It doesn’t make his self-perception and frustration any less real.

I became confused when we were asked about follow-up care that is not scheduled regarding the fused vertebrae.  My mind flashed forward, thinking of future possible complications he may face.  My husband and I were barely taking this all in, and we are good at these appointments.  We have had lots of practice.

The professionals had walked out of the room, and our son not surprisingly was sitting looking a bit bewildered.  We had to explain it now in terms that he could understand.  “Remember we have talked about FASD?”  A nod.  “That means when you were in your birth mummy’s tummy she drank alcohol.  Remember?” A nod. (Grasping for the words that don’t get easier to say…)  “Alcohol causes problems for some babies when they are in their mummies’ tummies.  That’s why your hand is different.  It can hurt bones, and it can make some brains grow differently.”  A nod.  “Everybody’s different.  It’s okay to be different.”  More nods, with a “my hand is rubbish” thrown in.  “It’s good that now we know your hand has the right bones in it, and we will see if another doctor can help you be able to use it better.  Isn’t that nice that they have had such good news today?”  A nod.  I felt a little dishonest.  (Not that long ago we were in another doctor’s office, an endocrinologist, assuring him it was good news that he would grow to be at least 5’6″ tall.  And it was. But he shouldn’t have to be grasping at these straws.)

When they came back into the room, I cringed as the senior consultant dictated a letter into a recorder in front of our son.  He used the terms “deformities” and “abnormalities” repeatedly.  The scream inside me grew.  I wanted to interrupt but I didn’t want to mess up his recording.  We usually are quite strict about getting our son out of the room so he doesn’t get overwhelmed by too much lingo.  It’s getting harder as he gets older.  Later (hoping our son had not caught this terminology), I held back to correct the record with the registrar – no we are not foster parents, we are adoptive parents.

We had envisioned a quick visit, but had been in the hospital now for hours and hours.  The waiting room had one obnoxiously loud toy that spat out balls that kept flinging everywhere and a train table with wooden tracks that did not fit in the space.  This manic, frustrating play was a perfect storm brewing, even as my inner disquiet was growing.  I had finally been quite direct with them, saying our son has a disability, his meds would soon wear off, and was there any way to help us get out of there as soon as possible. We knew would be a very difficult car ride home, and it was.  It’s now developed in his head that after a particularly intensive hospital visit he deserves a “treat.” So we stopped in a shop despite the risks that involved for overstimulation.  Thankfully we found some scented play dough-type stuff.  He smelled that and squeezed it during the car ride.  We made it home okay-ish.

Days later, our visit to the Royal National Orthopaedic Hospital is fading again into the background noise of daily life. We are once again at the frontline, addressing the immediate issues, being pragmatic, trying to focus on the joys and steering toward productive thoughts.  Back in our can-do attitude rather than the what-has-happened-to-him mindset.  Trying to keep our heads above water during yet another half-term holiday for which we have not planned well enough.

Seeing the bones scared me, I guess.  When I think of how tenuous, fragile, and mysterious those soft neural connections are, when I remember that alcohol can affect the development of whole parts of the brain…

No one does this on purpose to a child.  But prenatal exposure to alcohol has hurt our child deeply.  It has quite literally affected him to his very core.  And he is one of the luckier ones.  It didn’t do its worst damage to him.

Yes, I suppress the scream. Then I rally.