Tears, Support and Bloody-Mindedness

Blog_TearsSupportBloodyMindedness

New! Audio recording

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*********

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

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

 

 

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Raising a Child With FASD Has Made Us A Stronger Couple

Blog_BirthdayCard
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.

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

Slime, Enchantment and FASD

Blog Slime

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.

 

 

FASD Awareness Day is Every Day

BLOG_FASD AWARENESS DAY IS EVERY DAY

By SB_FASD

FASD Day.  FASD Week.  FASD Month.

The ninth day of the ninth month was chosen to draw attention to Foetal Alcohol Spectrum Disorders and to remind everyone of the importance of avoiding alcohol during the nine months of pregnancy.  In some places, this has been extended to FASD Week or FASD Month.

It’s a good idea.  Around the world and across social media, there are events happening – big and small.  Talks, articles, golf classics, twitter thunderclaps, and acts of personal statement.  All this work is colourful, hopeful, well-planned – a sign of a movement coming into its own, moving into the light after having fought many hard battles just to be noticed at all.  I am hugely in awe of it all and send out congratulations for this good work near and far.  It’s wonderful to have a day to feel part of a growing global effort for social justice and change.

And yet.

For those who live with it, every day is FASD Awareness Day.  The hardest battles are fought not to get an inch in a newspaper or a few minutes of media coverage on one day. Trying to be the news is hard, transformative as it can be.

But harder still is that moment, known to every person with FASD, to every person who has loved and cared for someone with FASD when you find yourself face to face with a person – maybe a medical professional, maybe a teacher, maybe the person at the grocery checkout or the bank, the social service worker or person who determines if you can get financial assistance – some one person who Just. Doesn’t. Get. It.  You want to scream.  You want to run.  You want to lash out at the frustrating injustice, the misunderstandings, the arrogant denials of the reality you face day after day.

But you don’t.

You stand there, and you educate.

You speak your truth.

You arrive early next time with some print outs.  You find a way around the roadblocks they may be putting up in front of you.  You network with others who have experience.  You plan strategies, share information.  You google.  You self-educate.  You believe.

You believe that more can be done.  You KNOW more can be done.  Your determination, your sense of fairness insists that the situation must change.

Each and every day is FASD Day.  That is the real story.  Heroes are out there in this world every day fighting the good fight in the face of some pretty daunting barriers.

FASD is lifelong.  It doesn’t take a break the other 364 days, the other 51 weeks, the other 11 months.

Every single person affected by FASD has to reach deep every morning to find some reason to believe this day will be good, this moment matters, these struggles mean something.  They need to know they can find joy and support and compassion.  They need to be seen.  They need to be heard.  The strength and resilience of this community is astounding.  The acts of courage and bravery are awesome.

✸ A child who has been bullied and ignored at school nevertheless walks into the classroom once again, despite the fact the requested accommodations are not in place, despite the fact they are threatened with detention because they did not follow the instructions that were not broken down in a way they could absorb. Despite the fact that for the hour before they left the house there were tears, anxieties.  That child faces the new school day with hope that maybe today they will be seen.

✸ An adult who left home while still a teen and who had a rough time for many years tries to do the right thing to set up a stable life and once again walks into an office to try to sort out benefits. They are panicked, trying to figure out how their rent will be paid despite recent cuts that make no sense.  Even as they are fighting back the demons they have overcome over the years to get to this clean and more healthy place, they prepare for this meeting and somehow make it there on time, every last nerve raw.  Nevertheless, despite many reasons not to trust the system, this person walks through yet another door, hopeful.

✸ A woman picks up the phone yet again.  She has tried before to explain, she knows she needs help but she is scared if she asks for it she may bring down the weight of the official system on her family.  Despite the fact every time she has raised concerns about her child in the past, her parenting has been questioned and she was made to feel shamed while asking for help, nevertheless she tries once again.  Hoping.

✸ A parent smiles at a young adult.  They had a rough night, a horrendous week full of some really challenging and explosive scenes, heartbreaking incidents, tiring misunderstandings. Despite the fact that this parent is exhausted, scared for the future, overwhelmed, nevertheless this is a new day and they greet their loved one with hope.

✸ A professional walks into a room full of colleagues who are busy, overworked, and skeptical, people who in the past have openly criticized any efforts to bring more focus on FASD.  Knowing it would be easier to simply ignore the need and go with the mainstream, nevertheless this person has come armed to battle for attention in a packed agenda, hopeful that today maybe one key person will hear them and might just free up more time and resources.

There are countless daily acts of courage and bravery in the life of every single person whose world is affected in some way by FASD.  Most of all in the lives of those with FASD who face a clueless and uncaring world way too often.

Whether it’s trying yet again to tie a shoe lace or speaking truth to power, people in my town, my county, across England, throughout the UK, Europe and around the world – person by person, day by day we are changing things, stretching language, redefining the field, raising and sustaining hope.  These ‘small’ moments are the ones we should celebrate most of all.

My wish for everyone of us out there trying to promote FASD awareness today and every day is this: that we find in ourselves each day some one thing to feel good about.

That we celebrate in ourselves what we want the world to acknowledge.  Whatever that is in you, hold it a bit closer today.  Grit. Determination. Strength. Courage. Belief. Insight. Humour. Resilience. Faith. Heart. Bravery. Love.  Leadership. Fortitude. Persistence. Stubbornness.  Vision. Whatever it is in you that you want others to see, today – celebrate that.

Whether or not today is the day for your inch of media coverage (says the woman who was hoping for more), whether or not today is the day you are with others in a crowd standing up for FASD or you are alone at a computer at your wits end seeking answers, help, support – for today, for FASD Awareness Day, chose a few moments of self-awareness.  For at least a few moments, look at yourself in the mirror and say, “Well done. I see you.  And you are doing a good job. In fact, you are awesome.”

Because the importance of this day is not only in marking society’s trek toward greater FASD Awareness.

It’s also stepping back and appreciating all you have done in your personal life to become FASD aware.  That is where the sea change happens, inside our own hearts and minds.  That’s where the revolution begins.  Has begun. Is happening.  Each and every day all around this world. ✸

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P.S. Since writing this, another blogger/advocate has written a post she said was inspired in part by this piece. Check out Our Sacred Breath’s latest piece- FASDay: What are you grateful for? and the other amazing resources she has been sharing in the countdown to FASDay.

 

 

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.”

Yes! Follow THEIR Dreams, Not Yours

Blog_Yes

By SB

Children with disabilities too often hear ‘no’.  This was true for our little one who has a neurodisability as the result of prenatal exposure to alcohol – a Foetal Alcohol Spectrum Disorder (FASD).  Before we understood that his brain was simply not wired to respond quickly or intuitively to a world he found deeply overwhelming, we kept ‘correcting’ him.  Every day he heard in a thousand different ways that his instincts and his responses were somehow wrong. That was our fault, not his.  We moved too fast for his brain to process it all.  Unknowingly, we threw him in over his head time and time and time again. We were too slow to hear what he was telling us, too slow to react to his needs.  His behaviour may have been the focus, but we were the ones who needed to change. He was finally diagnosed with FASD at the age of 10, but even after the diagnosis it took time for us to adapt to the implications of his brain damage.

Things started to improve when we started to listen to him, really listen.  We realized that while he cannot always phrase it well, he has insights into his condition that can help us to help him.  It became a positive loop – the more we listened, the more we understood.  It took some detective work and some professional input, but the more insight we had, the more his anxiety decreased.  The more relaxed he was, the better he could express himself.  Being more able to understand his perspectives allowed us to agree or at least discuss strategies.  Slowly, with this new shared understanding, we all started to come up for air.

One key element was seeing the world from his perspective – understanding the impact of the negatives we were showering over him with our (we thought) gentle ‘helpful’ reminders.  We dropped the ‘no-s’ and ‘don’ts’, and we started to say yes more often.

Accepting he would always need support, we set out quite deliberately to build a network around him, and began to prioritise settings where he was better understood (including moving to a specialist school).  We also came to appreciate that as hard as it was for us to wrap our heads around the diagnosis, it was harder for extended family, friends, teachers, and people in the wider community.  So, we opened up about our lives, his struggles.  We very carefully and consciously helped educate those around him about FASD.  We tried to face it all with positivity.

Life-changing stuff, that turned out to be in ways big and small (even if it is still a work in progress, as readers of this blog will know).  It included me giving up a career of nearly 30-years to work on raising FASD awareness full-time.

But this wasn’t one-directional.  Our son also has stepped up and has led us to a whole new understanding of what he can do with the right kind of support.

I’ll give you a rather extreme example.

Our son doesn’t see or experience the world the same way we do.  But that doesn’t mean he doesn’t have his own dreams.  All kids do.  Our guy has in his head a definite picture of where he wants to go, what he wants to accomplish.  Specifically, our son wants to play Wembley.  Or the O2.  Preferably with Little Mix.  You probably just smiled.  But please know, he is dead serious about this.

All those years he spent watching Hannah Montana, perfecting the songs and dances.  The hundred times he watched the DVD about how Justin Bieber became a star.  The disappointment when his YouTube channel didn’t get a million views once we set it up, and the belief it still will someday.  Each and every night spent in his room blasting Little Mix, rocking and memorizing and absorbing the music into his very soul.  Engaging his muscle memory, using music to perseverate on something, to focus his mind, to help him relax, to help his body know when and how to keep it all together.  Countless ‘concerts’ in his room with stuffed toy ‘fans’ and toy stage lights aimed just so.  The years of shopping in charity shops for costumes.  Researching stage lights.  Contemplating how curtains rise and fall.  The years of music and singing lessons.  Ongoing involvement in local supportive theatre groups.

Our guy has been preparing mentally for his Tour for a long, long time.  And in his mind, this was and is very, very real.  A dream this big could be heartbreaking. Some might say we should ‘nip it in the bud’ to avoid profound disappointment.  And yet…

There was and is no way on this earth that I am going to tell this child that he will not make it to Wembley.  Because, really, I don’t know that.  He just might.  And he sure isn’t likely to get there if we don’t believe he can.

Over the past several months his conversations about his Tour became increasingly insistent.  He wanted so desperately to perform, but couldn’t quite figure out how to make it happen.  He was becoming frustrated.

So, we thought outside of every box, and decided to give muscle to his dream.  We rallied all those people around him who could help and we simply said yes.

Yes.  We will help you bring your rainbow-coloured Flashing Lights Tour to life.  Yes, people will come to see just you perform.  Yes, seriously!  You can do it.  We told him his grandmother rented a school theatre.  Oh, if you could have seen the light that sparked in his eyes.  He went to work.  He orchestrated it all.  He designed the stage.  He planned, practiced and rehearsed his ten-song set list at school and with his voice teacher.  We designed posters and Tour merchandise.  Thanks to his auntie, he had five costume changes all lined up.  Another auntie agreed to be MC, fully prepared to support him in whatever way he needed that night.  A teacher arranged things in the sound and light booth – not blinking when he said he wanted it to look like the Ariana Grande stage, showing how we could improvise.  About 50 people agreed to attend.

When the night finally arrived, we weren’t sure how things would go.  During the sound check he closed into himself.  He looked frighteningly small and alone on the big stage.  With a thud in my stomach, I started questioning this whole idea.  But in one of the most eye-opening moments of the whole experience, we literally saw him stand taller, more confidently when two of his young friends arrived early and started to cheer him on in practice.  Singing for them, he expanded again.  I knew then that the night would be golden.

It started with the ‘Meet and Greet’ – adoring fans clamouring outside his ‘Tour Bus’ (a superb addition provided by a friend).  His ‘security guard’ then hustled him into the theatre.  Curtains opened and for about 45 minutes our little one filled not just the stage but the whole theatre with his presence.  The audience were armed with tour tags on lanyards, LED lights, glow-sticks, colourful scarves to wave.  Song by song he grew stronger, more confident until the almost impossibly perfect moment during the encore when he became complete amid confetti canons and massive balloons bouncing across the stage and around the adoring and cheering audience.  This was the grand finale he has so often dreamed about!  He floated through the After Show party and during his ride home on the Tour Bus.

For this one night we removed all the roadblocks, and we said one big, huge, concerted “Yes!”  We stepped so far out of the mold it was a bit scary for us all.  It was a risk he was willing to take, so we took it.  We showed him that his dreams can come true, that we hear him, that we will cheer for him in the way he choses to present himself to the world.  Rather than encourage him to fit in to a model that was never created for him, rather than encouraging him to keep his head down so as not to attract attention due to his vulnerability, we said yes.  Maybe it was counter-intuitive … but we did exactly the opposite of what would be ‘safe’ for him as a child with a disability.  We followed his lead and put him up front, under the spotlights, right there on centre stage, precisely where he wanted to be.  Where he deserved to be.

And the unexpected happened.  All the glitz and attention calmed him.  A family member summed it up, “He was totally fulfilled, therefore he was totally at peace with himself. He would have done that performance to ten or 10,000. It was his place, his dream and his achievement.”  (He later said to me, “Mummy, I wouldn’t be nervous, I could sing to 30,000 people.”)  A friend observed, “The people, the songs, the atmosphere – he breathed in (his form of yoga) and found himself calm and in control after the performance.”  It never dawned on me that this was a type of self-regulation.

In creating space for him to give of himself so fully, we all became that much more complete ourselves.  “His zest for life is infectious!” one friend said. “Who else can get a room of adults and awkward teenagers dancing and waving scarves?! We all left with aching mouths from smiling and feeling very proud.”

Another friend quoted Audrey Lourde, “It’s not our differences that divide us, it is our inability to recognise, accept and celebrate those differences.”  For that night, we were united in our son’s world, and boy did we celebrate those differences.  And it was a blast.

The whole evening was full of sparkle and colour.  His effervescent spirit held us all up just that much higher.  We were all there with him, for him, because of him.  This was his 13th birthday celebration – his chosen way to joyfully enter teendom.

I know not every child can get on stage and belt out ten songs in front of a crowd while dancing in glittery costumes.  But every child has some one thing.  Whatever that one thing may be deserves oxygen and sunlight so it can grow.  If we listen closely enough, and help our kids follow their dreams (not ours), we are planting the surety in their souls that they are heard, they do matter, and this world sparkles and shines more brightly because they are here.  Maybe to you my family sounds bonkers.  Yes, we did this Big.  Large.  It was most certainly over the top.  That was a conscious choice.  We chose this, rather than a holiday.  It may be unusual to spend an evening simulating a pop concert instead of going away – but this was oh so much better than scurrying off in a car where he’d meltdown to some place where he would be overwhelmed and lost just because that is what people do for holidays.

The memory of this night will last forever.  Hopefully it will always be with him, deep inside, on those dark nights when self-doubt starts to gnaw away.  Hopefully this experience will serve as some kind of insulation against the relentless onslaught on his self-esteem that we fear the teenage and young adult years will involve.

Come what may, for this one glorious night our little one was up there, giving his all to a room full of people who were quite happy to hear HIS voice.  We weren’t telling him what to do, he was showing us what he can do.  For this night, he was surrounded by the thunderous applause of one huge and resounding “Yes!”  For this night, he shone forth in all his magnificence.  We could see – literally see – the network we created cheering him on.  The thought of that still brings me to tears, even if I was too busy at the time jumping and dancing in the front row to understand then the full impact of the Flashing Lights Tour.

We must have done something right.  The first words out of his mouth the next morning were “Mummy!  I had a dream about going on tour again!”

 

 

 

 

 

 

 

A Super Teen with FASD

Blog_Teen
By SB_FASD

I see it sometimes – the future.  A way he might flick his head.  A look.  Some unexpected insight. The way he sometimes asks if I am okay.   My last blog post was about fear.  This one is about hope.  Yes, even as he officially enters teendom as a young person with FASD, I dare to focus this post on hope. In fact, I insist on focusing on hope.  It’s right there in the title of this blog.  It is at the core of everything we do as a family.  We hope.  We learn.

As our not-so-little-one becomes a teen, I am celebrating all that he is and will be.

You are shaking your head.  Yes, you can remind me of this when we hit the bumpy times we know are coming.  You may think I am naïve.  I get that.

But whatever you might think of this bright-eyed jump into the teenage wasteland, please know, I am not naïve.  I am making a choice.  And I am making that choice publicly because I believe we need to change the image we all have of teens with FASD. We have to change the narrative.  Reframe the language.

The statistics are cruel for those with FASD.  This is not the place to repeat them.  I am celebrating a rite of passage.  In fact, today, I defy those statistics.  Today, I celebrate a young determined soul who I believe can find his way forward, with our help and patience and perseverance.

I know he can.  Here is why I know that.

  1. He is identifying his feelings – using GIFS and Tom and Jerry cartoons, he is showing me what he sometimes feels like when rage boils over, when the forbidden words pour out, when he can’t contain the big emotions or when he makes choices he later understands were not the best. If he can find various ways to identify and communicate those intense emotions and begin to analyse them, we can find a way to implement strategies to help.
  2. He is using phrases like “My brain is saying I am not ready for that.” “My stomach doesn’t want that now.” “My body isn’t ready for that.”  He is learning to understand and read his internal signals.  We work with him on this all the time so that eventually he can become more analytical and learn to focus his mind on ways to help redirect his feelings and urges.
  3. The word “dysregulated” has become part of his vocabulary. He understands there are times when his brain becomes overwhelmed, the importance of finding calm in those moments.  He is devising his own strategies, and he knows that we will help him.  This is not to say meltdowns don’t happen, but this growing awareness is the foundation for moving forward to a time when he will be better able to self-regulate.  He is beginning to learn the lingo he will need for the rest of his life.  We do not keep FASD in a box around here.  We embrace it and discuss it and accept what it means when those neural connections that don’t work in the same way as others might.
  4. His school anxieties have dramatically decreased following the move from mainstream to a specialist school. This is an epic shift.  This school year started with some of the most distressing and challenging times we have had as a family.  He was anxious. We worried he was becoming defeated.  Following his switch to a special school in November, the year ended a few days ago with an entirely different reality.  The change happened quickly, efficiently.  I know that all too many are denied this sort of a quick response and that the changes in setting do not always solve all the problems – but his experience shows that if we get it right, even very drastic behaviours and problems can change fairly quickly.  There is hope.
  5. He feels secure in his place in our world. Even as he sometimes wants to run on impulse – “escape” as he calls it – our newly-minted teen knows that we love him unconditionally and this really is his forever family.  He knows this and come what may – remember, I am not naïve, I know there are rough days coming – he will always have our love.  That knowledge hopefully will help guide him through whatever storms may be ahead.
  6. He finds joy. In our son’s case, he immerses himself in music.  He is good at it.  It consumes his thoughts and it links in with movement and muscles and his inner beat.  He dances and sings and performs.  His very being glows while he is doing it.  Every teen, every child has some one thing that they enjoy and are good at.  For our guy, this is his gift.  We structure so much of his life around this and together we can find a space to simply celebrate his achievements.  May he always find joy, I believe that is tied closely with self-esteem.  And it is self-esteem that will see him through to those (in my mind) magical mid-twenties when (we hear) things start to even out for many with FASD as their emotions and social understandings begin to catch up to their actual age. Sitting on a bean bag chair with him, I started to wonder if my rosy picture of life is justified.  As a quick test, I just asked him to choose how he sees himself:

Happy or sad – “happy”

Strong or weak – “strong”

Kind or unkind – “kind”

Good or bad – “good”

Loving or mean – “loving, of course”

Gentle or rough – “gentle”

In these answers, which go to the heart of his self-perception, lies his future.  If you have read this blog, you know our home is not always peaceful and sweet – the fact that even with those times that can be measured on the Richter Scale, our son still understands that he is good and wonderful – he can separate out his brain challenges from the core of who he is.  As one friend, Savanna Pietrantonio (an adult with FASD who co-adminsters the Flying With Broken Wings Facebook group and the Hamilton, CA FASD support group) said recently, this is key.

I know, I really do know that these teenage years can rip into a person’s psyche and tear apart their faith in the future.  I know, really know that good parents, carers, guardians and others trying to support those with FASD sometimes face walls and hurdles that make navigating these years impossibly hard.

The issues compound in ways we are only just beginning to experience here.  I get it that the mix of hormones, accelerating tensions/anxieties, the growing social mismatch with peers, the desires for freedom and experimentation, the challenges of not being able to identify risk and manipulation (especially in this digital world), the coming encounters with a justice system that doesn’t understand FASD, the escalations (and perhaps danger) that can occur once strength and muscle can back up those meltdowns that at times simply have to run their course, the offense that can be caused by impulse, lack of self-editing (aided by increasingly distressing language), the scary realities that can intertwine when sex, drugs, and alcohol are teamed up with a complete lack of cause/effect reasoning.  I know, I know, I know.  Self-harm, suicide, crime, depression, psychiatric conditions, homelessness, early and unplanned parenthood… I know these are very real risks and life can become impossibly hard.  I have read the statistics.  I am in regular contact with people who were themselves contributors to those statistics.  I have open eyes.

And by insisting on hope, I am not judging.  Just as I don’t want to be judged, I don’t judge other families.  Every situation is different, unique, and has its own challenges.  One thing is sadly for sure – nearly every individual with FASD and their families have at some point been disappointed or let down by The System.  There are reasons – too often structural reasons – why so many find these teenage years difficult and demoralising, why even some of those whose families have absorbed all the strategies still wrestle with these years.  The delays.  The times when diagnosis was denied or when calls for help and were turned away.  When a young, vulnerable person was not deemed to be deserving of support and floundered as a result. There are reasons.  None of it is due to a young person or a family who deliberately gave up, no one wanted or desired those sometimes tragic outcomes.

I hear it.  I see it.  I get it.  And yet…

I also see the incredible resilience of those who nevertheless find their way forward through the ‘fog’ (as R.J. Formanek, an adult with FASD sometimes calls it – check out the amazing Facebook Group he co-adminsters – Flying with Broken Wings – for insights).

Until we can look at these teenage years with hope, until we can see the strategies to get us through, until we can join hands with our struggling young people with FASD and show them that they are not alone in their struggles and that there is a way forward, those statistics won’t change.  It’s one of the reasons why I am so inspired by the new National FASD Advisory Committee here in the UK, comprised of adults with FASD who are going to be advising NOFAS-UK on a project focused on Transitions to Adulthood.

We have to match teen’s talents with their potential.  We have to build education and programmes that help them bridge these years into adulthood – even if their walk across that bridge takes longer than for others.  We have to show them role models and hook them up with people who don’t only see their “problems” but who also see their magnificence.  We have to teach strategies for self-regulation and give them (and all those around them) increased literacy of their condition.  We have to wrap them in belief that they can do this, they will do this, that we have their backs.

Our little one is now a teenager.  And I am so excited to be by his side, watching as he unfolds his future.  Our family is united and learning (his 13th birthday presents included a giant bean bag chair, a homemade body sock, and other sensory supports all of which he was excited to receive).  Together we are getting better at navigating and minimizing those truly rough moments.  I won’t say life is easy, in fact it can be extremely hard sometimes.

But without doubt (and our teen knows it), I am proud of his every day and I am so looking forward to watching him rock this world.  I will be the one, front row, cheering him on.  Because he is Super.

 

 

 

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.]

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.