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.

 

 

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Dear GPS: Show Me the Positive Route

By 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

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 13^th 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

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 13^th 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

By @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

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)

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.

Lower the Drawbridge

 

By SB

Vulnerability.  I hate that word – everything about it.  I run from it. I build walls – miles-high at times – in case anyone might see me vulnerable.

I was brought up by a Scottish-American mother, a force of nature.  I was taught and conditioned to be a strong woman.  I am meant to be In Control and On Top of Things.  This is lifelong and forever because A Mother’s Work Is Never Done.  If something is broken, I am supposed to Fix It.  If something hurts, I am supposed to Kiss It and Make It Better.  I am supposed to have Eyes In The Back of My Head.  If I am having trouble and I am supposed to Pull Myself Up By My Bootstraps.  I am supposed to Cry In The Shower So No One Knows.  As a mother, I am only as Happy As My Saddest Child.  A Clean and Orderly Home Is A Happy Home.  I am supposed to Rule My House with Firmness.  My family is supposed to be My Greatest Work.

You get the point.

I have a constant stream of these messages playing in my head.  They are from an earlier time, a time why my own mother was a stay at home mom in a house of relative ease, with no major issues.  These messages don’t really translate to this life I am living now, raising a child with FASD.  Yet they play over and over and over and over again in my head, every day.  This internal soundtrack sometimes becomes my own worst enemy.  It happened this week, when we were preparing for a home visit from one of the therapeutic services we have finally been able to access.

Family matters are meant to be personal.  We are supposed to Keep Our Business To Ourselves.  If something isn’t quite perfect, we should Sweep It Under the Carpet and Put Our Best Foot Forward.  We are supposed to Show The World Our Smile.

That’s awfully hard to do when your windows are open and all hell is breaking loose, things crashing, a string of expletives coming from a child who is not even supposed to know such words exist.

That is awfully hard to do when you are sitting in yet another appointment, explaining yet again in painful detail about bizarre and concerning behaviours of your child, the details of how you cope, or don’t cope. Discussing the argument you and your spouse had or the time you did it all wrong.

It’s impossible to do as you swing open the door to your home and let in another visitor to observe, wondering if they will notice some doors are actually literally partially unhinged?  When you are feeling kind of good that you noticed and cleaned the dried spit on a glass pane before they arrived, but you are aware there might be other pockets of concern somewhere within view once they arrive.  And while the major puffballs of fur have been recently attacked by the last-minute vacuuming, you are all too well aware you still haven’t got to the root of what you fear is a pervasive smell of Dog.  It’s no longer possible to find every splat of dried bubbles that might have hit the walls or ceiling in the bathroom.  That ship has sailed and let’s be honest, you gave up trying a long time ago.  On the level of biohazards that might exist in your home, stray soap is not on the list of the worst offenders.  Far, far, FAR from it.  You just changed sheets (score one for the home team) so you are pretty sure there will be no food surprises under the covers, should she end up in the bedroom being shown how many flips can be done on the bed (with pulled-back covers).  But still you breathe a sigh of relief when in fact she was shown this trick and nothing fermenting was uncovered or smelled despite the recent episode with the bottle of spilled pickled onions that soaked through the mattress.

No, this home life isn’t at all what you had planned.

There is a tendency to hold back, hold it in.  You know people think you “over share” when you start to tell some story about some thing that is not typical, not the “norm.”  You see their faces take on that “try not to show you are shocked/surprised/repulsed/out of your depth” look.  You have to trust that they will listen and not just take away the more sensational headlines – just like the news media does nearly every single time they cover the lives of people with FASD.

Yes, it’s different.  Yes, it’s hard.  And yes, it is, in fact, your life.

So you have a choice.  You keep that smile on your face while you put your best foot forward and eventually walk right smack into a wall.  Because you will – it is impossible to act like it’s Business As Usual without eventually hitting a wall.  You know this, because you have already been there, done that.

The reality is, you need help.  More importantly your child needs help – will ALWAYS need help (even when you are not here).  By pretending it’s all okay, you are depriving your child the chance at his or her best possible outcome.  They have to learn to ask for help.  They will have to lean on others and let people into a messy and chaotic world.  They will have to TRUST that others care more about them then the state of their house.  They have learn that it’s okay to be imperfect.  And they will learn that lesson by watching you, by repeating whatever mantra it is that is the narrative in your own home.  You have to forget about your mother’s house and focus on the home you have.

That’s where it gets real.  That’s where the vulnerability comes in.  To help your own child, you need to break down those walls, let others see you at your worst.  Despite everything you were trained to do, whatever rulebook you have inherited, you have to shed those expectations.  You must show your vulnerabilities again and again to a too often unkind and uncaring world.

Because out there in that crowd, there are people who can help, people who can understand, people whose bubble splats are up there on the ceiling too.  They will be there, hidden among too many who might not be helpful and who might in fact be judgemental.  You need to armour up and go looking anyway.  You will never find those people your family needs hiding behind the illusion that everything is “normal.”

And the reality is – there’s no such thing as “normal” anyway. We need to teach our kids to love themselves as they are.  That starts with us taking that first step – loving ourselves and celebrating our lives as they are too.

“Welcome to my world” – how many times I have said that as my mother would have, tongue in cheek, self-depracating.  But “welcome to my world” can also be a positive statement of affirmation and a doorway to the future for our children.

Because really, my world is pretty darn amazing too – for those willing to look past the unidentified marks on the walls.  Our house and its striving, growing, messy, manic, chaotic swirl of emotions and movement is a place of love.  And Home is Where The Heart Is.  And Every Man’s (and Woman’s) Home Is a Castle.  I will let down the drawbridge if it means letting in the supplies and help and support that we need, admitting that It Takes A Village to Raise a Child. Showing our children that it’s okay to be who we are.

So, welcome…

 

 

 

 

 

The Same Child Shines When Seen Through a Different Prism

 

By SB_FASD

We’ve said it before, our guy seems to learn in leaps.  It’s never a steady upward curve for him.  He plateaus and then without any seeming rhyme or reason to it, he jumps up to the next level.  Each time this happens, he falls back in other areas.  Perhaps foolishly, each time it happens, we allow ourselves to be hit hard by the regression.

We are in one of those times.  Our home environment is suffering.  Our pre-teen son is increasingly armed with new vocabulary and new attitude, fueled by a new edginess in what he is watching on YouTube.  Social pressures at school are causing him great distress.  He is getting less physical activity now that he is at a new school.  His walks to and from school and his after school activities have been replaced with time spent in a taxi.  He is out of the house and ‘on’ from 8:00 am until 4:00 pm.  It’s a long day for anyone, and especially for him.

When I snuck away to write this blog, I was feeling down.  I was thinking of the rough morning we just had (diverted eventually by a walk along a river). I was still smarting from the rough night we had last night (diverted only by nearly two hours in a pool) and the string of other rough nights and rough mornings we have had lately.  I was thinking of the harsh words between my husband and I, and the dismayed look on our elder son’s face as the tensions mounted.  Again.  The way the dog sometimes gets wide-eyed.  The mess of the house.  Work stresses.  The fact that this morning we rushed out of the house after a meltdown, in survival mode, and I haven’t had a shower.  Again.  How even the bacon sandwich I allowed myself as a ‘treat’ from a café while we were wandering was disappointing and flat tasting.  Yes, when I started writing I wasn’t in a great mood.

Then I remembered that a school report arrived yesterday.  I stepped away from the computer to have a read.  Page by page, my mood lightened.  I was stunned at my own inability to understand what I know.  Yes!  It hit me.  Our son may be regressing at home, but at school he is progressing in leaps and bounds.  These things are never unrelated. Once again, I am amazed at the difference it is making now that he is in a specialist setting.

Last year at the end of the year we wrote about how we were so crushed by our son’s report card, we never let him see it.  In contrast, this time I called him onto the bed where I was writing.  I told him I had his school report and wanted to show him.  He groaned and visibly moved away from me, alarmed and ready to bolt.  I put my hand on his back and said, “No, wait – it’s excellent.  Listen.”  He looked up into my eyes, searching.  And we skimmed his in-depth report together.  He became more and more interactive, more excited.  After one especially positive comment, he whispered with utmost pride, “Maybe I should get a new toy!”  (Proving that at least in some cases he can link some cause and some effect and also showing perhaps not flatteringly that as parents we have not been above pure bribery in the past.)

In a school that understands not all kids’ brains are wired the same, here’s what these new teachers wrote:

• “He’s an eager and enthusiastic pupil”
• “He has great ideas”
• “He is not at all afraid of thinking outside of the box”
• “His work benefits from his imagination”
• “He makes his presence felt with his enthusiasm”
• “He is keen to achieve good results”
• “He is gaining greater confidence”
• “He is a talented musician”
• “He has an ability to create exciting and engaging musical performances”
• “Polite”
• “Very able”
• “His attitude toward learning has been excellent”
• “His confidence has improved”
• “He has managed to express his colourful personality”
• “I am delighted to have a pupil of such creativity and imagination at the school”

Let’s get this straight.  This is the same child who last year was chided in his report for “disruptive behaviour,” for being “silly” and “distracting.” The discouraged boy who was told he “needed to understand” his behaviour was “inappropriate.”  Who was marked down because he couldn’t pay attention for “more than five minutes.”  The kid who we couldn’t get out the door to school because he was under so much pressure we thought we had broken his spirit–this was happening as recently as five months ago.  He’s the same kid.

I was especially struck by the comment on his current report from a science teacher.  Last year, his science teacher commented on his final report that he repeatedly cried throughout the year when given instructions.  Her reports were never positive, she saw only a problem student.  Cue to this year, and here we are: “He has worked hard in science lessons. He generally grasps new concepts quite quickly and enjoys the opportunities to work practically.  He observes scientific experiences carefully…He follows instructions well and can work in a careful, systematic manner.”

THIS IS THE SAME CHILD.

I want to rattle some teachers.  I know, I know all about the pressures you are under.  But shame on you if you have a child in your class that has a disability and you refuse to learn about how to help that child, you turn away offers from parents who seek to help you understand, who offer to work in partnership with you to help you reach that student.  We hear about it all the time.  Those few of you who refuse to grow professionally are suffocating the spirit of our kids who need you most.  (There were many heroes in his mainstream education, but there were also a few who were truly deplorable.)

He was so proud, so very proud of this new report.  He put his head on my shoulder, squeezed hard, while remembering to ask if it was my sore arm.  (These moments of blatant awareness of others are still few and far enough between that they jump out at me.  I was touched that in this moment of triumph he was also then able to think about me. I am sure there is a link).

We also talked about some of the comments that show his FASD is still affecting his ability to access education fully.  He is starting to know these are areas where he always will have difficulty due to his FASD, areas where he will need to put strategies in place.  When he read the bit about how he “can easily become distracted and lose focus,” he said, “that happens sometimes, doesn’t it?” We acknowledged but brushed over the comments that “he has yet to grasp cause and effect” and “he must ensure he always listens carefully to an instruction so he knows what is expected of him.” We will continue to work with him to understand his FASD and also with his school to ensure they understand these challenges are not due to willful disobedience, but because he will always, for life, need instructions broken down – preferably shown in a visual format, maybe even rehearsed. Whereas previously these sorts of comments dominated his reports, this time, these comments were decidedly in the minority.

The most touching moment was when he asked me to explain this comment, the one that made my mood brighten most: “He needs to believe in himself because he already has gained the respect of many of his peers.”  We went over that together, slowly. As its meaning sunk in, he glowed and I basked in this new space.  He’s made great leaps forward.

It doesn’t mean what’s happening at home is not real, not concerning, not demanding attention and strategies.  (Of course, when things are flying and getting broken we must hear what those behaviours are saying and make necessary changes.)  A positive report doesn’t make his social challenges any less difficult (he told me heartbreakingly the other day he will “never be happy again” because he is “bullied every day, every year”).  But seeing this report does help me believe that those educators around him can help him get past that hurdle too.  He may be having trouble with one or two kids, but he also is “earning the respect of many.”  Can you imagine how wonderful that is for a kid who has been shoved aside, jollied or sidelined by too many of his peers throughout too much of his education up to this point?  Yes.  We are on a whole new level.  Somehow, I have been letting down my guard and letting negative thoughts in.  I have been forgetting that with great progress comes some setbacks in other areas.

Remembering that makes it all a bit easier.

At least, it should.

I’m trying.

————
P.S. – To top off the transformation of my mood, I just read this most fantastic piece by Dr. Nathan Ory, “What It’s Like to Live With Fetal Alcohol Spectrum Disorder.”  I hope everyone will take a chance to read and absorb his insights.  Share it with the schools.  He sums up in one paragraph why I think our guy is doing so well in his new setting (and it’s a timely and important reminder to us at home to keep smiling even through the hard times):

Children growing up with these types of differences in their thinking and learning processes often become very emotionally fragile. They don’t “get” why people are distressed with them. They experience that others are distressed with them and often mirror or reflect back the very emotion that is being shown towards them. For these children, it is very important to really like them when you are speaking to them. They work more off the emotions of those around them than the words and actions of those who are guiding them. Being emotionally angry towards them always further escalates their behavior….These are not bad kids. Often they are working heroically to overcome their learning disabilities and to participate in the world wherever they are able.

 

Old Photos and the FASD We Didn’t See

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