Raising a Child With FASD Has Made Us A Stronger Couple

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By SB_FASD

Today is my husband’s birthday. He bought his own presents.  He didn’t wake up to coffee in bed. There was nothing – I didn’t even manage to wrap the presents he had sent to himself via Amazon.  Really, it doesn’t get more pathetic than this.  But I have my excuses.  We were at the school yesterday for a couple of hours.  Our son has been home half days because he is struggling in this post-operative week.  As a result, we have been juggling work commitments, balancing the needs of our elder son (who has Chronic Fatigue Syndrome/ME), and – I kid you not – a dog with a concerning cough.  Life is – as usual – happening fast and furious. We are as ever facing our days left-footed.

I explained to my husband yesterday that I needed more time to wrap things, that I hadn’t actually managed to do anything to make his day special.  He smiled at me and gave me a hug.

That’s when the thought struck me – this FASD journey affects our expectations of each other too.  We have all had to change the way we look at this world.  It is not just about changing how we interact with our son with FASD.  It is also how we interact with each other.

FASD has been brutal on our marriage.  The unpredictable flare ups.  The chaos.  The what-on-earth-do-we-do-now moments.  The concern.  The defensiveness. The tiredness.  The stresses. The depression.  The alternating moments of determination and fatigue.  The feeling that whatever we do is never quite good enough.

The times when we have entirely different instincts on how to handle a situation.  The times when we hit a wall and need to shout, and rather than yelling at a little one, we aim those words at each other because that’s the ‘best’ option in a horrid situation.

Yes, FASD can tear at relationships.  Like water dripping on solid rock, each of these tense moments leaves its mark even on the strongest of relationships.

And yet, here we are.  We’re still standing.  Somehow.  And we are better than we were before.  Perhaps not as obviously shiny and happy as we once were in those days when we were courting.  We were an older couple to start with.  Maybe because we weren’t kids ourselves, we have always been grounded.  Though once upon a time we were carefree enough to hop on airplanes with the blink of an eye to meet each other, to visit others.  We had flexibility and funds.  We were living the life.

Children were a precondition.  I remember standing on a bridge early in our romance, laying it out – saying although it was awkward – that I had to know if he saw children in his future.  I was in my mid-30s.  I was confident enough not to delude myself that this was a question that could wait.  I will never forget the feeling of elation I had when I realized he too wanted children, a family.  We were engaged soon after.  We even talked about adoption at that point (before we had trouble conceiving our first child, including a horrible possible ectopic pregnancy/miscarriage, before the frustrating infertility when it came time to try for our second).  My husband is adopted.  I always said I would adopt one child for every child I gave birth to.  It seemed natural for us to complete our family via adoption.

We had already decided we could raise a child with disabilities when we refused the tests during my pregnancy, despite knowing we were in a high-risk category.  We didn’t shy away when we realized early on that our adopted son was likely to have developmental issues.  We knew, or thought we knew, what we were getting into even if it would take several years for our son to be diagnosed with FASD.

But did we know then how our social life would erode?  How those lovely meals out and trips to the movies, to the theatre would evaporate?  Did we know we would be so bone tired every night we could barely decide which TV show to put on, forget about long meals laughing over candle light like we used to?  Did we know that we would stop traveling together, that our health would deteriorate, that we would take such shortcuts with each other?

There was no way we could have known.

But I am not writing this as a downer.  I am writing this because of the beauty of the moment yesterday, when I told my husband I hadn’t managed to get him a card nor had I even wrapped the presents he bought for himself for his birthday.  That moment when he understood.  That closeness that we have that goes beyond the flirtations of a night out on the town.  That hug by the coffee pot this morning when he jokingly asked where his presents were.

We have always said that we will be great sitting in our old-age rocking chairs side by side, making snide remarks about the state of world affairs.  We are becoming people, through this journey, that we never knew we could be – deeper, more ‘real’, more compassionate, more questioning of ourselves and our expectations than we might ever have imagined.

We have been washed over by a love that is stronger than we could have envisioned – fierce in its protectiveness of our children.  We have learned as a couple to find sustenance in the awe that we share of our two amazing children who show us every day what courage is, what it means to face this world bravely and with dignity.

As a community we probably don’t talk enough about the toll that FASD can take on family relationships and on marriages in particular.  I am writing from the perspective of adoptive parents, but every single family relationship can be stretched – especially if FASD is not understood, if the strategies are not taken on board.

It isn’t easy, but we are better people together and individually because of this path we are walking.  Our marriage is stronger for this journey.  We make accommodations every day, not just for our son with FASD, but for each member of the family.  In learning that patience and compassion, hopefully we are growing into the kind of adults we always wished there might be in this world.

Happy birthday to my better half.  Maybe I didn’t get you a card, but here is a blog post instead.

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Mother enough?

Blog Mum enoughBy SB_FASD

Am I mother enough for this day?  Have I strength enough, humour enough, patience enough, faith enough in those around me?  Today our little guy is going to have his hand operated on by one of the UK’s top plastic surgeons.  He is having a ‘web release’ and Flexor Digitorum Superficialis (FDS) Opponensplasty done on his right hand, the hand he cannot use because – as he says – ‘it’s rubbish’.  The hand with the thumb that doesn’t work properly because while he was in utero alcohol washed through his developing system and damaged the joint so badly that his thumb does not extend properly.  Every time he tries to open something, he has trouble.  Every time he tries to do a button, he has trouble.  Every time he tries to hold something with that hand, he has trouble.

They can’t do anything to the bones.  (We were told by an orthopaedic surgeon that he is in fact lucky to have any joint there at all, which may be true but it’s still less than okay.)  Since they can’t fix the irreparable damage to the bones, this plastic surgeon is going to move tendons and work her magic to (hopefully) give him more range of motion, more strength.

Our son is 13 years old now.  He woke up this morning hungry.  He can’t eat.  We have to somehow get him into London, to Great Ormond Street Hospital, without him losing his cool.  Anxious (freaked?), out of sorts, uncertain.  He asked if he would still have the bandage on when he goes back to school on Monday – time has never been something easy for him to wrap his head around.  We have explained repeatedly this means no gymnastics for three months, that he will have to do exercises after this for his fingers, that he will have a big bandage.  But right now, this moment, all he knows is he cannot eat.  And he keeps staring at his little thumb.  The thumb that is 1/3 the size of his left hand thumb.

Am I mum enough for the uncertainties of this day?  The child who we need to give advance notice for everything does not yet know (because they don’t yet know) if he will need to stay overnight tonight in a big London hospital or if he will be coming home.  He worries about his dog.  He worries about things he doesn’t tell us worry him.  Our bag is packed, but somehow, I am feeling uncertain.

Facebook just popped up a memory from years ago, another time he was being prepped for a surgery – a tonsillectomy.  The nurse that day asked me if we were missionaries and if that is why we adopted.  This system can be cruel.  Somehow when we are at our most vulnerable they think that is the time to start questioning adoption, demanding to see papers.  Raising this issue right in front of our child when he most needs security.  This time, I have the papers in my bag.

Am I mum enough?  I don’t know if this is ‘right’ to have this elective operation.  I know there are children out there having far more serious operations to save their lives.  He has managed for 13 years with this hand, are we being foolish in trying to address this issue?  What if it doesn’t work?  What if we have put him through this for no good reason.

Somewhere inside me is a scream.  Why does this poor child have to go through so much pain and why does he have to face hurdle after hurdle where others walk on a more gentle path?  We can’t do operations to fix the parts of his brain that were affected.  Just a few days ago he asked me again about FASD.  He said he wished he didn’t have it.  He said he was sad.  I said I wished he didn’t have it too, and I was sad too.

We are lucky to live in a place that has free healthcare.  We are lucky to live near one of the world’s leading children’s hospitals.  I think everyone this year will get a copy of Peter Pan for Christmas – the royalties from that book have funded Great Ormond Street with its magical waiting rooms and state of the art technology.

But still, here we are.  Getting ready to make a journey that is outside all of our comfort zones.  Trying to fix – or help at least – in one small way at least one of the physical effects of prenatal alcohol exposure.

I wish just one of the self-righteous women who proclaim it’s their right to drink alcohol while pregnant could make this journey with us today.  I’m not talking about the women who don’t know they are pregnant, the ones who are confused about guidance, or the ones who struggle with addiction, abuse.  I have sympathy for them.  I am aiming this at those who accuse us of policing pregnancies when we try to raise awareness of the risks of alcohol in pregnancy.  You can’t possibly know what you are risking.

Come with us today.  And then I dare you to take another sip of that self-indulgent glass of wine.

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See also Prenatal Alcohol Exposure Damages Bones Too

Small Change Adds Up

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By MB_FASD

Things can only get better. Is that right? Is that how it works for families with kids with FASD?

Well no. Of course not. Things are quite often decidedly mixed. But they can change for the better. Nothing is static in life, and with appropriate supports and better understanding of the child, the condition and how to help, things can improve.

Take our son. He’s thirteen now. A year ago at this time, he was in crisis. Life was too much for him. He was refusing school a lot of the time, desperately upset when he did go. He was having daily, twice daily, meltdowns. The stresses on him were intolerable.

So, a year on, how is he managing life? How are we managing? Things are a lot better. We couldn’t change him, so we changed his environment. Also, he’s changing. While he’s socially delayed, he is growing up as all kids do. And that makes a difference. Here’s some examples from this week.

One of the simplest signs both of a growing maturity and of a calmer environment is in our mornings. Previously, we had to be with our son all the time. We had to help him occupy himself almost every minute of the day. Leaving him alone would lead to problems. He couldn’t self-regulate and he couldn’t keep his mind calm enough to do activities on his own. Now it’s much, much easier. Albeit with the help of games on the phone, but also with creative film-making and vlogging, our son keeps himself busy, often for hours on end. Since we both work from home much of the time, this is a positive benefit, and it’s a good sign of how his world is changing for the better.

Another positive development has come through school. We’ve discussed before what a huge change the move to special school was. How it relieved the pressure on our son, and how they let him thrive through the most wonderful theatre and music programmes. That’s all true, and he goes out to his taxi without protest every morning, a far cry from the terrible days of a year ago, even if he wishes for the small netbook his mainstream school let him use in lessons, and moans about “too much writing”. He is still happy enough to go, and is clearly thriving under the care of a fantastic, dedicated and talented staff.

Our little man and his Mum were in a shop this week looking for a drink and some sweets. His mum let him go in alone with £5.00 while she waited outside with the dog.  He looked at the price of the slushy he wanted, and the bag of sweets and worked out that they cost. He then worked out how much change he would have, and before he purchased them he asked Mum if this was ok. To our knowledge, he hasn’t put all this together in this way before. He understands that you have to pay for things in shops, and has sometimes been able to work out if he has enough money, but has never proactively done the maths himself, weighed his options so calmly and asked before spending. That is real progress.

He is learning and applying his lessons to life. It’s tied to school. They have a tuck shop in morning break where the kids are encouraged to bring change and make small purchases. Apparently, it’s succeeding. It feeds in to success in his life skills homework book. He was able to tick off that task as successfully done. Homework that makes him feel better about himself, rather than driving him to tears and despair. That is a novelty. And while its harder than the canteen at his old school (there he paid electronically by fingerprint with no concept of the cost of items), it’s better for him in the long run, as it’s teaching him to cope in real life.

Another example.  This evening, he was partly dysregulated. That’s a word he knows and he sometimes understands that he needs to start using calming strategies or go to a safe space before he has a meltdown. I was offering swimming, but he didn’t want to go. He stated that quite forcefully. Then he started building a marble run. All the while muttering repeated phrases under his breath, most of them bad language. Over and over again. Often a sign a meltdown is coming. And often the plastic marble run pieces will fly as his frustration boils over. I was really worried, but I didn’t want to push him out the door. This usually ends badly. But not tonight. He focused in, and he built two big marble runs. He used a favourite toy to calm himself, instead of letting his feelings overwhelm him. Then he proudly demonstrated his efforts to his Mum and me. That’s real progress. In the past either I would have dragged him swimming to re-regulate through physical activity (still an important option), or he would have had a full meltdown. Now, he’s starting to understand himself. And we let him make the choice. We are learning too.

Two days ago we had to go to Great Ormond Street for a gruelling round of three pre-op appointments for an upcoming hand surgery. A nasty rainstorm had every anxiety ramped up in the drive to the train station.  Before getting on the train we purchased some “lava putty” at a toy shop, and during the whole trip he used this very consciously as a calming mechanism. “I am good with sensory toys,” he said.  And he was.  A few years ago there is no way we would have made it through that day.

None of this means life is perfect. Meltdowns happen. Earlier in this day there were indeed parts of a marble run broken, but we minimised the scene and quickly moved on – to the point that a short time later he was helping to tidy up the mess. The challenges are all very real. We can’t relax our guard too much or things do fly.  We have to work to involve him in family activities, and part of the success in less stress lies in the things we don’t even try to do anymore. We had to let go of expectations. FASD is very real and it affects him all of every day. It affects us too.

But, things are getting better. His world is slowly, slowly changing. We can perhaps start to think about a transition to adulthood that can be managed without devastating trauma. We’ll see. There’s a long, long way to go. He’s growing up, and his world is a little brighter for it – and for the changes we have made in our world to help him, and us, get through the day.

 

Slime, Enchantment and FASD

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By SB_FASD

Once upon a time, and twice a week since then, a little boy would make a mess.  Shampoo.  Toothpaste.  Bubble bath.  Washing up liquid. Laundry detergent.  Perfume.  Powder.  Spray deodorant. Mouthwash.  Flour.  Butter.  Bicarbonate of soda.  Food colouring.  Vanilla extract. Broth cubes.  Salt.  Corn flour.  Sugar.  Fabric softener.  Conditioner.  Bath gel.  Even – in a time long, long ago – some cleaning fluids.  Nothing was safe.

This little boy made messes big and small, smelly and sweet.  Sticky and staining.  Hidden and brazen.

For years his parents chastised and chided.  Hid things and redirected.  Monitored consumption and kept to the script of what we are supposed to do with such things.  Teaching, they thought, that it’s not good to waste, that we don’t play with food, less is better than a lot.

But still the messes continued.  In fact, one window may be forever fogged in the corners from some unknown combination that was once sprayed and congealed.

This little boy grew to be a googler.  He became adept at finding Kids Choice awards, and played over and over and over again the scenes where famous stars are covered in slime.  He found YouTube channels full of people doing challenges where they sit in bath tubs full of cheerios and jelly.

Maybe he had tried over the years to tell his parents where all of this was going.  If he did, his parents didn’t hear.  They just occasionally grew angry when the shampoo was gone, when the bath had to be rinsed yet again from whatever-mix-that-was-this-time.

Meanwhile his parents had been googling and learning themselves.  Doctors helped.  Diagnoses opened minds.  The parents began to see this through new eyes, and began to rethink his relentless ignoring of warning after warning.  They began to see he wasn’t being ‘naughty’ – they finally grasped the behavior as a symptom of a need that he could not express. But knowing that wasn’t enough.  They had to change their approach.  Create a different environment.

So they started to buy cheap items for sensory play: foaming soaps, oozy liquids, cheap whisks and plastic bowls.  To the consternation of some, they enabled the mess but fulfilled a need.

Meanwhile, the happier boy kept googling. He watched hundreds of videos.  He turned his attention to a single focus.  Slime.

It wasn’t pretty.  The house became filled with randomly found containers of soapy smelly stickiness.  But this time the parents didn’t fight it.  This time they planned fun trips to the store with the boy so he could pick the ingredients rather than help himself to Dad’s favourite shaving gel.  They googled to try to find UK replacements for Elmer’s Glue and Borax (the holy grail of slime making), knowing how frustrating and abstract this was for their son to understand that some ingredients were not to be had on these British Isles.

They set up some spill trays and gave smaller bowls to limit the quantities for experimentation.  They lined up saline solution and salt, cheap shampoo and hand soap.  And day after day after day, the boy tried.  And he tried.  And he tried.  He just couldn’t understand why it wasn’t working.  He wasn’t so keen to follow the recipes exactly, he insisted a dash of this or a bit more of that was what he needed.  But though it was not ‘successful,’ he was absorbing and learning using his senses.  He was focused.

The household was under a spell.  There were mixtures in the freezer, in the refrigerator, on the counter, and on window sills.  And still he googled and still he tried.  The boy was happiest when mum was sitting by him, watching the videos and listening to the fake American accent he adopted as he mimicked the kids on the videos.

Day after day.  Powder and flour clouds occasionally rose over the sticky concoctions.

Never did the parents say a negative about the mess this time.  They stayed close and helped clean.  They supported, not critiqued.

And then, after maybe 10,000 mixtures, there it was.

The boy made slime.

Good slime.  Slimy slime.  Goopy slime.  They kind of slime you need to put in a leak-proof container and bring to school to show people kind of slime.  The kind you ask mum to stand next to you, with her own little bowl and spoon, so you can show her your special recipe kind of slime.  And yea, though it was remarkably close to the one she was trying to show him weeks ago, it was so much better because the boy made it himself.

He had to learn this his way.  And low and behold, he did.

On this magical night when proper slime finally was created, as the mum was walking out of the room after the high fives and well-dones, she heard it.

The boy’s voice.  Quiet, clear, and confident.

“I AM a scientist!”

He said it to himself.  It wasn’t bravado.  It was fact.

The words hung there in the night.

And suddenly, the parents knew that all of it was worthwhile.  And they were pleased that though their patience had been tested again and again, this time, they knew they had helped their boy on a remarkable journey of self-discovery.

You might come yourself to this enchanted house.  You might still see the huge tray full of half-mixed concoctions. Yes, there are stains on carpets that are ignored, and you might rightly stare hard at the cups and spoons you are given which may or may not still have traces of the taste of glue clinging to them despite the parents’ best efforts.

But the family hopes that if you come through their doors you will see Progress.  This once dark and stormy house has become a happier, calmer place.  It’s far, far from Perfect Land, this much is certainly true.  But in SlimeVille there are pockets of joy and self-satisfaction.  There are bridges across Sensory and Cognitive Needs to Productive Lives.

And what was once a battle has been redrawn into a shared camaraderie, a past-time that opens doors for discussions between them rather than the flashpoint for shouts and frustrations.

The boy had been trying to say this for years.  Once again the parents were too slow to see what he was teaching them.

But they learned, and it helped.

 

 

Four Letter Words for Help – FASD

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By @MB_FASD

Adoption UK carried out a massive media blitz this week based on a survey that said 25% of adoptions risk breakdown because of a crisis fuelled by the trauma children suffered in early life. Trauma which leads to aggression and violence in the adoptive family. It is a picture that a lot of families with children with FASD recognise, although Adoption UK never mentioned FASD in their media work. While not all children with these issues have FASD, it certainly struck a chord with me.

F**k. B***h. S**. Again. And again. At 7.30 in the morning. Or 7.30 in the evening.

Most kids with FASD lack impulse control. That includes over language. Bad language.(There is some research that says language is stored in a different part of the brain to other language, so this may be related to brain wiring too.)

We have a lot of bad language in our house. A lot. And, following the advice of professionals, we ignore it. Most of the time. We have to. If we didn’t we’d be in constant opposition to our son, in constant conflict that would help none of us.

He doesn’t mean it. A very clever educational psychologist once asked us “Why do you assume intentionality?” when discussing some of our son’s seeming acts of defiance. That struck home. We had been assuming that our son was being deliberately naughty. Oppositional defiance disorder is a thing. Some kids with FASD have it. Our son doesn’t. He just can’t control his impulses while dysregulated or partially dysregulated. So a stream of insults fly.

In the mornings and in the evenings, around the edges of his medication, he is partly dysregulated. And at those times the language comes out.

It’s very difficult. We struggle with this in a big way. I do especially. Not because of the words, but it gets really hard as it’s tied up in his refusal to let me help him much of the time. It feels like a strong rejection. (My wife tells me I am not seeing just how often these same words are used in her direction.)

But when addressing me, he always wants Mum. At least, when Mum’s there that’s how it is. He calls for something. I go to his room, and get a string of expletives and what feels to me like rejection.

I bring him food, and he won’t even look at it because I breathed on it. Happened just recently, I made mini-cheeseburgers to eat but I breathed on the food. So it’s covered in germs. Sometimes the reaction is physical and can hurt, but the actual blows are the easiest to take, it’s the emotional ones that are harder to shake off.

It’s really hard not to take this as rejection. I know that many times I don’t do a good enough job of showing that I’m relaxed. That I’m not irritated. That the bad language washes over me. Which generally it does. But the constant pushing away his harder to deal with. At a certain level it hurts.

I know he doesn’t mean it because he often does let me do the foot rubs and the leg scratches. When Mum is away, or just out, then all of a sudden my attempts at cookery are suddenly acceptable, and my help with the latest project really needed.

Our son isn’t proud of these moments – he apologises after the fact, he comes back to build bridges.  He stays close.  (He once famously told a deputy headteacher that he had been dysregulated when he cursed at him, he couldn’t help it then but he was sorry – a pointer to the fact that, with self-awareness, change happens).

The ways in which aggression can manifest itself are complex.

In a drive to highlight a very problem, and look for government action to support adoption, Adoption UK risked leaving an extremely negative picture which will undoubtedly put many people off adopting. As an adopted person myself, I would have done it differently. I would have painted the picture as bleak as it needs to be, but then softened it with hope, and a perspective.  In our house we have elements of all of those things that were splashed across the media following the results of the survey.  It’s not that we don’t get it.  But because we know the reason for our son’s behaviour, we frame our approach accordingly.  Importantly, we have a diagnosis in place as we head into the coming teenage years, something the experts say is vital to chances of a successful transition to adulthood.

Once you reinterpret the behaviours as a symptom of the condition, and learn strategies to address the underlying need, the sense of crisis diminishes.  A year ago we were in an intense period of crisis but things can turn around.

If you can’t change the child, then you have to change the environment around the child. You have to reduce reasons for anxiety. You have to adapt their environment so they can live as calmly as possible as much of the time as possible in that environment. You have to give them the time they need to adjust to change, whether that change is getting dressed for school or moving from one activity to another. We’ve changed his room, put in a quiet space and let him have disco lights that calm him. We let him dress how he wants to go out, not how we would like. We adapt because he can’t. And we’re lucky, friends and family have adapted too.

Things have got much better with time as we have learned to do this. He has learned as he gets older to begin to understand his triggers and to ask for help. He has been helped definitely by meds for ADHD.

No child is unchanging, nothing lasts forever. Situations change. And we have to change along with them. I have to do better at soaking up the bad language, and helping guide our son to a calmer place when dysregulated.

What’s the f***ing choice?

*******
P.S. – Support is available for families who are struggling.

Dear GPS: Show Me the Positive Route

Blog Staying Positive is the Way ForwardBy SB_FASD

There I was.  Sitting in front of McDonalds, my 13-year old son in my lap.  Holding him in a tight hug, my chin on his shoulder.  Stroking his arm.  Squeezing his leg.  Rocking him back and forth quietly. Giving him proprioceptive input I know he needed if we had a chance of getting out of here without a huge scene.  I asked him if he knew people could hear him.  When he changed to a lower tone, I understood he was not fully dysregulated and we had the potential to turn this around. Ignoring the looks, I was actively thinking to myself how these days I really don’t care if others stare. They can keep on looking.  My focus was where it needed to be.  It was working.

It’s the last week of summer holidays.  We have nearly run out of our scheduled clubs and holiday programmes: theatre school, gymnastics, movie club.  This week we are more ‘freestyle’ (‘lazy,’ ‘lax’, ‘out of ideas’ are other ways to say that).

Our only plan was to go to the trampoline centre.  This was our son’s request, and he specifically asked that we go there later in the day, when there would be fewer people (I was pleased of the planning ahead and self-awareness this involved).  During the rest of the day, we left him to his own devices for way too long.  (So, yes, maybe ‘lazy’ is the phrase I am searching for.  Or ‘worn out.’)

It was time to go.  Optimistic and eager for an unusual family of four outing, we trundled off.  His elder (neurotypical) brother had decided to come too.  It took all of about five minutes before we hit a literal roadblock.  A traffic jam due to road works meant we had to redirect our route.  Big mistake.

Things, as they say, took a turn for the worse.

England’s bumpy single-lane country back roads are not the best place for a child with anxiety issues who had recently surreptitiously nearly OD’d on ice cream bars.  His anxiety levels skyrocketed.  We were not sure we would be able to continue.  We did eventually get there, barely seat-belted in (the belt and the bumps were making his tummy feel sick). My every bit of maternal patience was at its end (I was travelling in the back seat with him.  His brother was in the front seat.  This is our usual flying formation).  We all had to be quiet. Everything was wrong, disturbing him. He had said at one point, “Maybe I just shouldn’t go in cars.”  This was his way of saying he was really seriously struggling.

I am glad we got there.  On those single lane roads that cut through fields, the reality is we didn’t have much choice.  He had a fun one-and-a-half hours of flipping, twisting, jumping, parkouring and cartwheeling.  I got to see his new aerial move.  His backflip-into-front-flip.  His many hours of premiere gym sessions this summer have clearly paid off.  His mastery of skills is awe-inspiring.  And a great way to get his ‘ya-yas’ out, as we call it.  His elder brother came off after about 45 minutes, saying he has no idea how the little one can do so much jumping for so long.  Neither do I.  His energy has always inspired me. And yet, I could hear from the floor some of our little guy’s more excited sounds increasing as time wore on and the disco lights came on.  I suspected we had passed the therapeutic usefulness of this place, and we might be in for it when it was time to leave.  We started discussing strategies for the ride home even before he got off the trampolines.

Hot and overtired, he insisted on frozen yoghurt and a slushie when it was time to get off the trampoline floor.  We didn’t argue.  We knew we were on razor’s edge.  He didn’t eat either of them.  They tasted ‘disgusting!’  At least they made it into the trash without disaster. I will call that a win.  We had already made a deal with our eldest about McDonald’s.  Which of course meant the little guy wanted Pizza Hut.

And so there we were.  He fixated on Pizza Hut.  Repeatedly insisting he wanted pizza.  I tried to not contradict.  “You can have pizza.  Another night.” Choice words flew back at me as we crossed the very busy car park.  I told myself I was not caring (much) what others thought.  At least he didn’t run.  He didn’t hit or throw or break anything.  There is progress in this scene.  Even as we sat outside McDonald’s rocking together staring at the Pizza Hut which OF COURSE was directly across from us, I was trying hard to stay positive, to not let my own frustration show.

Then, finally, I heard it: “My brain is saying it wants pizza.  Just pizza.”

To an onlooker, that might have seemed like more of the same.  But it wasn’t.  This was a different phrasing.  His way of explaining to me, not demanding.  These are the moments that are coming more frequently.  He is increasingly verbalising his self-awareness. Even if it’s rudimentary, this is a cornerstone upon which much can be built.  This, this was a sign of having reached a short-term goal. I have trained myself to recognise these whispers of hope.  Conditioned my responses (though still not perfect.)

“I understand you want pizza.  I understand your brain wants pizza.” Several times I repeated the word pizza, so he felt heard, validated.  “Your brain is only thinking about one thing. That happens to a lot of people with FASD.  It has a name: Perseveration. You have to train your brain to think of something else when it gets stuck like this.”  Yes, I literally said that to my nearly dysregulated son, while we were rocking together right there in front of the older teenage crowd who were watching us as they were blowing off time at McD’s before the movies.

Sometimes it seems I can feel it or see it when he ‘hears’ something and stores it away.  His body goes a certain kind of still.  There is a pause.  I know even in the state he was in, he heard that word “perseveration” – we will return to it another day.  Many other days.

My husband had ordered a happy meal for him.  We walked to the car.  This time before we got into the potential torture chamber, we all stopped.  I said to our little one: “It’s your choice.  If you aren’t ready to go in the car, we can wait until you are.”  That seemed to work.  He thought about it.  He said he was.  And maybe he really was…until he discovered the lack of BBQ sauce in the bag and a phone was thrown (but not hard, it was not harmed, thankfully and the toss was instantly regretted.  Again, mini-points toward a win).

Seatbelts on, we tried to proceed out of the parking lot without BBQ sauce, but things were escalating and we decided to turn around to get some.  I think that helped, he felt ‘heard.’  Our eldest was a star, gently talking to his brother, without taking it personally this time.  The trampoline park exercise had helped them both.

With the aid of newly acquired BBQ sauce and back on our normal route, the ride home was quiet.  He went up to bed with no further incidents.  The rest of the night was okay.  (Well, with a minor blip of husband losing something leading to a house-wide and unsuccessful search.  Oh, and some last-minute scheduling snafus we only discovered while husband packed for an early morning work trip…Our lives are messy around the edges these days.  Imperfect.  We are winging it more than usual, even for us. We are frazzled. Frayed.  It is very clear we are limping along in the last week of summer.)

Even still, after it all I was left thinking:  I am getting better at ignoring some things and have actually started to train myself to focus on other things.  It is getting easier. I can ignore the stares – or if I can’t ignore them, I allow myself to stare back as I did the other day on the tube, rather than shrink away.  (If you think you can stare at my child, I can stare at you.)  I can increasingly ignore the tut-tuts and the sideways disapprovals.

More importantly, I can listen much more attentively to the nuances of my son’s – both our sons’ – moods and needs.  I explained to our eldest when we got home that I think that was progress tonight, trying to help him see beyond the roadblocks, to see the markers of progress we are reaching.  Six months ago or a year ago we would have experienced total disaster this evening.  As it was, it was awkward.  It was tense.  But it was not a disaster.

So, here we are, nearing the end of the school holidays.  This year it has been better than most summers, but far from ‘easy.’  Some may say I am the eternal optimist/clutching at straws, but that is the only way I can see through to the tomorrows I want for our family.  Like entering instructions into a GPS, this determined choice to take the positive route is the only roadmap that will get us there even if it is not the most direct or obvious way forward.

I believe we are heading in the right direction.  I insist on amplifying and marking these signs of hope.  As the song once said, “it’s got to be the going, not the getting there that’s good.”

Fighting Fear

Blog_FearOfFutureBy @SB_FASD

Help me.

I am a strong woman, from a long line of women who don’t back down or shy away from hard times.  But one thing has the power to bring me to my knees and that is fear for my children’s tomorrows.

The day we received the diagnosis* for our youngest son, my picture of the future imploded.  I nearly suffocated with the news.  We were swimming, uncertain what came next. We dove into Google where I soon kept coming across that one horrible image that is shared everywhere comparing the brain of a ‘normal’ child with that of a child with FASD…maybe you’ve seen it – that image where the folds of the brain seem all flat and shriveled, like the future I saw slipping away.  That photo knocked the wind out of me.   The post-diagnosis period was hard.  It took a long time to get to solid ground.

It took way too long for me to learn that photo no more represents my child’s brain than a flat and two-dimensional landscape represents my child’s future.  (While people share it with good intentions, the photo is an extreme case – a research photo that should perhaps never have escaped medical journals.  No one can live with a brain that looks like that.  It does show the damage alcohol can do when it does its worst, but I will not share the image in case it sets someone back like it set me back at a time when I needed to see forward.)

Fear of the future.  It’s always there.  We can put on a game face and we can meet the challenges head on.  But in a world where even doctors refuse to diagnose and support people who face this life with brain damage due to prenatal alcohol exposure, this journey deflates even the most determined of us all.

It’s pretty darn hard to get up the gumption again and again to push for support and services when those pushing back have degrees dripping off their walls.  The internal scream just builds and builds until my head is reverberating with the thought – this is so unfair!  This is a medical issue.  My son has Fetal Alcohol Syndrome, the leading cause of non-genetic intellectual disability in the Western world as noted in a report by the British Medical Association.  It is one of the Fetal Alcohol Spectrum Disorders (FASD).  FASD is real – it isn’t nothing, it’s not just ‘a label’ to excuse ‘bad parenting’ – it’s a lifelong brain-based disability known to have more than 400 co-occurring conditions.  It leads to devastating secondary disabilities if the underlying needs aren’t met.  And yet parents, carers and guardians are often asked time and again why they want a diagnosis by people who should know better – as if the diagnosis is some kind of optional add-on rather than central understanding needed for people to navigate their lives.

Why isn’t the medical field out there ahead on this, pushing prevention and early detection rather than making family after family feel inept, inadequate and undeserving of diagnosis, treatment and support?  That’s a serious question, one I am still waiting for someone to answer for me with anything that doesn’t smack of stigma-laden prejudice, self-centered justification of a pub culture that can’t look itself in the eye, or a burdened bureaucracy prepared to sacrifice some of its most vulnerable in the name of saving some small bit of money now despite knowing it will cost more in the long-run at the expense of too many promising young lives.

Fear of the future?  Heck yeah, when you are staring out at this world knowing at some point in the natural order of things you will die and your child will live on.  Knowing he will live on in a world that doesn’t care to understand him or his disability, a world that seems more likely than not to throw him in jail rather than support him or make accommodations for his needs.  Fear?  Darn right I am fearful.  I see the shadow in people’s eyes, as this sweet young boy turning toward adolescence is starting to lose his balance, getting swamped by the hormonal storms coming his way, not fitting in the boxes society has lined up for ‘good boys.’  Fear?  Oh yes.  I fear.  I hear too many stories, feel the anguish of too many lost young adults and families when these young souls get caught up in the chaos of young adulthood, the challenges of being emotionally and socially unready in a world that wants them to grow up faster than they are able.

Frightened and fearful.  Yes, that is me.  More times than I may seem.  But I refuse, downright refuse to let that fear stop me from doing everything I possibly can to create the best possible chance for my son to have the future he deserves.  I will stare down anyone who gives him ‘the look.’  I will drown any professional who doubts his right to services with enough paper and proof to convince them to either deal with his FASD or refer him forward.  If someone tells me he is ‘incapable of learning’ as did one educational psychologist early on (pre-diagnosis), that person sure as heck will never be within a mile of my son again.  I will fight against this fear.  And encourage any others I can to hold tough, stand tall, push forward.  Because together, collectively, we can change this.

We are afraid of the future, yes, but we focus that fear to make us more powerful and stronger advocates, determined to learn what we can to create the best possible outcome for our son and the other children with FASD who deserves a chance.

But let’s be honest.  It is lonely and scary to stand where we are on the near edge of the adolescent years.  There is a way to bridge the wild waters of the coming teenage years.  Even as I know the fall down can be hard and brutal, I know there is a way to make it across.  I have the honour and privilege to know adults with FASD and their families who have made it to the other side.  They are good people living good lives – contributing to society in all kinds of ways.  They are loved and loving.  Their lives may not be easy but they are profound. They have truths to tell and songs to sing.  No, I can’t – I won’t – let the fear paralyse me now, or we will stumble, fall, slide.  I will not get caught up in the trap of negativity.

I keep eyes forward.

I walk side by side with our son.  Come what may.

He struggles against me, yearns for an independence he cannot yet handle.

Every step scares the heck out of me.

I hope (and yes, for him I even pray to whoever might be listening) that this walk across these teenage years will be gentle.

If he is in trouble, may he get help not judgement, compassion not intolerance.

If he strays into dangerous waters, may someone offer him a lifeline and not an anchor.

If he loses his way, finds himself drifting or spinning out of control, may someone ground him rather than send him further away from me.

May he not get tangled up in something that can drag him down.

If he calls for help but in a language others can’t hear, may someone see his shining soul and recognise his innocence and bring him home.

This boy had to fight for existence without love for the first 16 months of his life.  The world has already proven once to him how cruel it can be – it left him speechless, untrusting, hungry for something more.

Please, let me suppress this fear long enough to get him to solid ground.

Help me help him.

——-

[*If you are new to a diagnosis – please see this resource: Information for parents/carers following a diagnosis of FASD by Dr. Cassie Hunt, Highly Specialist Clinical Psychologist. You don’t need to flounder as much as we did.]

Ready for the Reset

Blog_WeFindPeace

By SB_FASD

There he was – swirling on a rope swing over a gentle stream, sploshing through the water with laughter and abandon.  Throwing rocks as far as he could (twice as far as me).  Talking with me about yesterday, about how when he feels like he needs to throw things hard, we can always come here.  Here it doesn’t matter.  Here it’s ok to want to smash and throw.  Here is a place where it’s ok.  We’re ok, my child.  Yesterday was hard, these weeks have been hard.  But we are okay.  We can find the laughter.  We can re-center ourselves.  There is always another time, another chance.

How I wish he could see forward in those moments when his world just seizes into the here-and-now-frenzy of “NOT!”  Not hearing.  Not reasoning. Not stopping.  Just riding out that intensity of the NOT! in the only way he knows how as of now – the knock-down, smash-it-out, take-no-prisoners meltdown.  Maybe you know it – the one that leaves you stunned, drained, bewildered…standing outside a door you can’t open but can’t leave.  The one that makes you feel so small in the face of the tangled neural networks that work against the peace you hope to achieve.  The tsunami of emotions that must play out.  The one you can’t let drown you even as you find yourself choking on despair in the face of your loved one’s torment.

FASD is cruel at times.  It’s bald and raw and fierce.

Trapped inside always trying to conform, sometimes it breaks free and just lets fly.

I get it.  I have in my own life wished at times for such abandon.  I have at times wanted to throw, scream, shout my truth whether or not it hurt others or myself.  And I don’t have to squeeze myself every day into rooms that are not made for me, trying to mold my mind to tiny boxes others want me to tick because it’s easier for them, no matter how hard it is for me.  I don’t spend my days clashing against others’ expectations that few people untangle for me so I can actually understand them.  I don’t have to live my life always feeling like I am just not allowed to be who I am.  I have empathy in boatloads. I get it, I do.

Even as the worst of it flies, I get it.

Or at least, I can try to imagine it.  I know I will never really understand it, because I don’t live it.  How very important it is to listen to those adults with FASD who can give voice to what the littles ones can’t yet find the words to say.  How lucky we are that there are those willing to help us understand.  I try, try, try.  To support.  To do better.  To protect.

But “getting it” (or trying to) still doesn’t make it easy.  That doesn’t mean sometimes I don’t want to cry.  The big cosmic stinking situation that left this person facing such challenges through no fault of their own.  It’s not just.  It isn’t.  Sometimes i am discouraged to the core, worn down to the bones from trying and never feeling I have done enough.   No, it’s not easy.

But even still, I am unbudge-able on one thought – there is hope.

I am learning.  I too am growing.  I know I need to be patient.  This is a long game.

These frenzied horrible moments eventually pass.  Sometimes it seems the episodes are shorter.  Less frequent.  Glimmers of the strategies we practice shine through.  I notice tiny progress – or maybe it’s huge?  Maybe the destruction wasn’t as great as it might have been–was there a dawning awareness, a guiding hand, an emerging instinct helping to avoid the worst of it?  It’s hard to know sometimes.  We are improving our ability to speak about it after – we really are learning the shared language of this disability, its dysregulation, and the lingo of how FASD affects brains.  We find peace again sooner – between us, and as a family.  We have learned how to ask for external help when we need it, and we have done the legwork to be sure when we send up the bat signal, as I did yesterday, people know how to help.  They knock on the door.  Like the first responders they are, they rush in when others might run in the opposite direction.

I have learned to shed the resentment, the hurt.  When the moment passes, as it always does – I am ready for the reset.  It always comes.  (May it always come.  If I were a praying person, that would be my prayer.  May we always be ready to repair the space between us.)  That moment after, when we can start again.  Start stronger.  Move forward.  Grow.  I am ready.  And he too is learning to trust that better moment will come.

I am there.  I wait for the tiny “sorry mummy.”  I am ready with the lotion for a foot rub, close by to tuck the covers just so.  There to say for the gazillionth time (because that’s how we measure things around here), “It’s okay.  I love you. I’m good.  Are you good?”  Good. We’re good.

————–

For further information: FASD meltdowns are due to the brain-based issues related to FASD.  They are not tantrums, they are not intentional.  They are not always avoidable.  Anecdotally, we hear from adults with FASD that sometimes they are necessary.  It is essential to try to better understand these if you are trying to support someone with FASD – or if you yourself have FASD and don’t understand why you might have a meltdown.  Not everyone has the violent outbursts, but nearly everyone has that moment of brain overload that leads to an inability to move forward.

NOFAS-UK has a poster (originally from this blog) and some links to resources about meltdowns here.

Some earlier posts on this blog explored meltdowns from different perspectives:

FASD Meltdowns

A Timely Reminder About Dysregulation & FASD

Why a Broken Screen Can Make Me Feel Good

The Building Storm of an FASD Meltdown

 

 

A Shout Out To Our Friends (Yes, That Means You)

Blog Friends

The life of parenting and caring for a child with FASD can be lonely.  Complicated. Too often it’s distressing, the self-doubt is huge.  You can feel scared… overwhelmed..freaked…sad…angry…determined…depressed…discouraged…uncertain…lost…guilty…out of control…small.

I have felt every single one of those emotions in the last week – quite possibly each of them every single day.

Yesterday we had a local support group meeting (a group we started where none existed). It was a casual meeting, just talking with other families for two hours while our kids played together in their “FASD Club” as some of the children have started calling it – kids who normally don’t want to go out, but who all look forward to this.  For us parents too, it’s a kind of club, where we can know others won’t judge, others will relate.  A lunch with another parent of a child with FASD sitting in the rain as if it were natural, because our guy was having a blast in the mud and on the swings.  It was rejuvenating.  Even though I was bone-tired. Even though the topics can be grim. We found hope.

It’s been a long week (thanks in part to a national media blitz so insensitive to those who have FASD and their advocates that it left me stunned, drained, angry – and yes, recommitted). Last night my husband and I were so tired that normally we would have crashed at an early hour.  But a friend had heard about the week – she insisted (took no excuses) – and had our son with FASD over for a sleep over. It allowed us to chill out, spend time with our older neurotypical son.  It was low-key – we stuffed ourselves with Thai take away and Hagen Dazs, watching a newly released DVD.

Yes. I know how amazing that day may sound to those who have no such support. I feel bad even admitting this.  I know we are lucky. Too many are out there feeling too alone.

Remembering where we once were too, and how massively different yesterday was from those early days, it got me thinking how important it is to acknowledge just how amazing a role friends can play.

I take my hat off to those friends – old friends, new friends, family friends, work friends, social media friends, neighbourhood friends, school gate friends, Facebook friends, dog walk friends, smile-in-the-shop friends.  Heroes, one and all, they quite possibly have no idea how much they are appreciated.

Here’s to the friends – the ones with the kettles and the tissues.  The ones who check in regularly.  The friends who actually slow down and wait for you on the street rather than sneak around the corner as if they didn’t see you.  The ones who look past the bags under your eyes and tell you the colour of the crumpled t-shirt suits you.  The ones who make you laugh.  Who let you cry.  The ones who hold a seat for you at the coffee shop, knowing you might not come that day but who are ready just in case.

Here’s to the friends who calmly step over the shoes as they enter your house and who look past the dog hair and the piled-high counters.  The ones who don’t ask what is behind the closed doors and the ones who just laugh at the laundry drying everywhere.  The ones who ignore the unidentifiable smell.  The ones who know where you keep the tea.

Here’s to the friends who didn’t run when things got complicated.  The ones who googled rather than denied.  The ones who asked questions rather than dismissed what you were saying.  The ones who heard your concerns behind your frustration.  The ones who were confused and overwhelmed themselves but who asked rather than assumed.

Here’s to the friends who open doors others slam shut.  Friends who reassure rather than stress.  The ones who don’t tally who is doing the talking and who is doing the listening.

Here’s to the friends who believe you when you say you wish you could do x, but not this week, sorry not today, you can’t because something came up/you’re unable/things went haywire/it’s just one step too far on a day where there is nothing else to give.  They know you’d really like to.  They don’t make you feel bad.  Even when you forgot their birthday because that week there were multiple appointments/illnesses/calls from the school/meltdowns.

Here’s to the friends that tell you when you need a break – the very remarkable few who force you to take the break, and the exceptional ones who make it possible for you to…wait for it…relax.

Here’s to the new friends – the ones you meet through the struggle.  The ones who get it instinctively, who can laugh at a situation without mocking or deriding.  The ones who can give a look or a nod that says more than a speech.  The ones who have walked the walk and who can still help you find the joy on the days when it’s sometimes hard to find.  The ones who help you look forward.

Here’s to the friends who can carry you, prop you up, propel you forward or force you to sit – whether they’re in front of you, on the phone, or at the other end of the computer screen.

Here’s to the friends – the ones who see your child.

The ones who see you.

The ones who are there.

Here’s to you all – here’s one big, huge, poorly expressed, dreadfully tired but deeply felt “thanks.”

You really have no idea how much your support means.  It’s magic.  It gives us what we need to gear up, buck up, stand tall and face this with hope.

And by doing that, you are most importantly giving our child the best gift possible.  You are helping us to help him. You are fueling our resilience. You are breaking past our sense of isolation. You are giving us hope that the community exists.

It takes a village indeed.

Not just to raise a child, but to support a family.

And you are so very, very much appreciated.

So here’s to you, for those times when I might forget to say it.

You’re awesome.

—————-

P.S. – For readers who got this far and are thinking, well that’s nice for them but I don’t have any support, please know we once felt that way too.  After our son’s diagnosis sucked the oxygen out of us for too long, we knew we couldn’t do this alone.  We deliberately started to open up to others about our son’s condition and what this meant for our home life.  People are good.  When they started to understand more, things changed. It wasn’t easy, but we made a plan.  We prioritised it.  It takes a long while, but it helped. 

Here’s a piece we wrote about it: Reaching Out After an FASD Diagnosis.

If you don’t have a local support group and might like to start one, contact the FASD UK Alliance (that’s where we got started): fasd-uk@live.com

For online support – check out the FASD UK Alliance Facebook support group: FASDUK – involving nearly 1300 people just like you. (If you do click to join the group, please keep checking your ‘message request’ folder as an admin will contact you to confirm.)

If you need resources to show to family or friends, check out The National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK).

If you need some tips on how to reach out to your family, check out The Auntie’s posts on this blog.

The Samaritans have a 24-hour hotline for any who might feel in crisis – just call 116123 or email jo@samaritans.org

You are not alone.

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