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.

Lower the Drawbridge

 

Blog VulnerabilityBy 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

 

Blog_DifferentPrismBy 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

Blog_OldPictures

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

__________

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

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

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

FASD: Strategies Not Solutions

When a School Rocks

SchoolRocksBy SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

Those words hold power.

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

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

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

That is what this school is teaching.

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

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

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

This school rocks.

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

Finally!

Blog_WhenOthersGetIt
By SB_FASD

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

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

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

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

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

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

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

I felt this veil lifting.

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

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

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

They were talking about our son.

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

They see him!

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

Toto, we’re not in Kansas anymore.

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

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

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

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

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

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

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

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

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

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

A Timely Reminder About Dysregulation & FASD

Blog Dysregulated.png

By @FASD_Dad

Today wasn’t the best day. And I made it worse. We know our son doesn’t do well with multiple activities in the day. I know that when he starts to become dysregulated we have to do the work to keep things calm, quiet and to make the environment the best it can be to help him regulate himself.

Today, I didn’t do that. Today, when he was getting more and more dysregulated because he didn’t want to go out, I made it worse. I let his stress and tension communicate itself to me, reflected it back at him and made his downward dysregulation spiral worse. So instead of getting down to his level and talking calmly with him; or just backing off and letting the meltdown stop, I did all the wrong things. I told him we had to go. I told him he had to put his shoes on now. I told him we were going to be late to see his friend dancing. I made it SO much worse.

We had flying shoes. We had slamming doors. We had curses and yelling.  We had tensions between Mum and Dad. And I just couldn’t deal with it. My stress became his stress because I didn’t use the techniques we have learned.  The five minutes we needed to get out of the door became 30 minutes, 40 minutes. Eventually, in his room, all alone, the dysregulation and his meltdown slowed and stopped. Stopped enough that we could deflect. Get back on track. Restore some calm to the day, to his mind, to him.

And in the time that followed, we got a reminder. Several people at the big FASD conference happening in Vancouver tweeted this slide from a presentation*

Dysregulation

  • Sensory dysregulation interferes with child’s ability to access and apply strengths on demand
  • BUT FASD = neurologically dysregulated in more than one area of brain function
  • Therefore dependent upon the external environment to provide any regulation, especially under stress
  • “External Brain” at all times and in all settings to ensure safety and success
  • Dysregulation also ensures that behaviour is more reactive than intentional

“The ‘external brain’ needed at all times and in all settings to ensure safety and success” – well, we know that but it didn’t work today. I was the external brain and instead of ensuring safety and success, I had my own little flip out. I couldn’t keep it together. The stresses and strains got to me and I let my son down when he needed me.

His behaviour was indeed reactive, and he was reacting to me projecting stress on to him. His brain, unable to process, got stuck in the moment and I didn’t help him out of it.

This slide was a great reminder. He needs us to be calm and stable, even when he is repeatedly aiming a string of choice vocabulary at us. Even when his shoes are flying. Even when he’s lashing out. He needs us especially then. As the slide points out. As I already knew, and could not act on.

So thanks to @EMcWilliamsHew2 for tweeting the slide. Thanks to the presenters who wrote the slide. It was a good reminder.

I’m not beating myself up too much. We all get tired. We all make mistakes. We all are under stress and have times when our actions and reactions are not what they should be. I did turn it around. I got him to put his shoes on and get in the car to go swimming. He had almost two hours of physical activity and joy in the pool. That’s what he needed to relax himself, to get back to a good place. In the car on the way there, he quietly explained this was what he wanted, that he didn’t want to go and sit and watch dancing – although he would have liked to do dancing. So often, he tells us what he needs in different ways, and sometimes, like today, we don’t hear that.

He did miss his friend dancing, but there’ll be other times. We’ll make sure the day is prepared better next time, and he’s in a place where he can access the dance show, where that’s what he wants to go to.

But, I do have to remember. He needs me when he needs me, not when I’m ready to be needed. That’s my take-away from today. I’ll do better next time.

———-

* The presentation was “Including Sensory Dysregulation in Every Diagnosis of FASD” by L.Scott, L.Elliot, L. Wahabe (PEEL Program in Ontario) at the 7th International Conference on Fetal Alcohol Spectrum Disorder, 3 March 2017

Prenatal Alcohol Exposure Damages Bones Too

blog-bonesBy SB_FASD

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

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

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

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

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

This is – and will be – his life.

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

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

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

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

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

I don’t want to take that in stride.

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

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

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

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

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

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

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

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

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

Yes, I suppress the scream. Then I rally.

Respecting Differences in Those With FASD

blog_differentBy SB

“It’s OK to be different.” We say it without thinking, repeat it reflexively.  In a family with a child with special needs, it becomes a mantra.

But, do we really mean it?

I have been thinking about this a lot lately.  Our kids used to love the book by that title by Todd Parr.  It’s a great book, so colourful and accepting – all about the very many differences there can be in the people all around us.  I loved the book until the day our older son asked if it would be okay to have mac and cheese in the bath, like it says in the book.  Parental dilemma.  And yes, I swore under my breath many a time at the author’s folly – wondering why he had to include that page in this book.  To my credit, I didn’t say no.  But it took me months to serve up mac and cheese in the bath.  I guess, it’s okay to be different up until that point it when it battles against some deep fundamental hidden ‘norm’.   Yes, I eventually spoon-fed mac and cheese to both my kids in the bath. Miracle of miracles, they didn’t die in a swamp of germs.  It turns out I didn’t need to be so closed to the idea.

“It’s OK to be different.” Sure.  It is.…until that day when you discover your child is the one who didn’t get an invite to the party that everyone else in the class got invited to.

“It’s OK to be different.”  Yes.  It is.…until it’s your kid who is bottoming out on the standardized test scales and who can’t keep up with the homework other kids breeze through.

“It’s OK to be different.”  Absolutely.  It is.…until you are in the store and it’s your child having a meltdown because that toy or that candy you can’t afford/don’t want to buy/believe would be unhelpful for him is right there and he really, really wants it.  Now.

“It’s OK to be different.”  100%.  It is.…until you realise that whatever it is your child wants to wear that day out there in The Real World makes you cringe because you know it might draw attention to their usually ‘hidden’ vulnerability and people might disapprove. Or worse.

“It’s OK to be different.”  Yep.  No question.…until the specialist with degrees dripping off his wall stands there and tells you in even tones that your kid has irreversible brain injury and will need support for the rest of his days.

And then what?

What do you do when you hit your own internal prejudices and presumptions day after day after day as you try to parent a child who is, well, different?

That’s when you really begin to think hard about just how okay it is to be different in today’s society.  Because, different has a whole lot of levels.  And this big wide world is not always kind.  And life happens fast and furious and we don’t get a time-out to wrap our heads around all of this.  Pressures are intense.  It gets hard.  And then harder.

But the reality remains.  People with FASD are different.  Their brains are wired differently.  The communication between different parts of the brain is altered.  There is no amount of wishing or wanting or correcting or punishing or ignoring that is going to change the fact that a person whose brain was injured by prenatal exposure to alcohol processes information differently than someone with a so-called ‘neuro-typical’ brain.   This is fact.

“It’s OK to be different.”

➤So, when you have an appointment that you have waited months for, and your child simply cannot cope with the added stress, with being rushed out the door and starts screaming…what do you do?

➤When you just made that meal because you know all the foods on the plate are ones that your child likes, and they say they can’t eat it because someone breathed on it….what do you do?

➤When your child wants to show you for what seems like the 50th time that day a YouTube video that you have already seen 100 times….what do you do?

➤When your child is shouting obscenities at you, maybe throwing things, dysregulated because something went wrong at school and you still can’t figure out what it is….what do you do?

➤When you know your child must brush his teeth because the dentist said he is getting cavities, but he reacts like nails are being scratched on a blackboard…what do you do?

➤When you stare at another broken screen and you know he just couldn’t control the impulse to smash it out of frustration but you cannot believe this just happened again….what do you do?

➤When you go to reach for that treat in the back of the cupboard that you were saving for a special day, and you see little hands have been at it already or when you realise someone has squirrelled away that scarf you really like under his bed…what do you do?

➤When you are tired and lonely and at the end of your rope and your child does something for the umpteenth time that you have told them not to do and you are really irritated….what do you do?

➤When you just finished cleaning, and you turn around and see flour all over the counter from yet another science experiment and the eggs are all gone, having been smashed in the garden…what do you do?

➤When the school calls yet again and tells you your child has been “poorly behaved” and you have to go to the school…what do you do?

➤When it’s the middle of the night and your kid banging around in their room has woken you up yet again…what do you do?

I would suggest, unless you are up for sainthood, you forget.  You forget “it’s OK to be different” and frustration surges inside you.  Sometimes it explodes out of your mouth.  Sometimes the aggravation crushes you, weariness blinds you.  You forget that we are supposed to celebrate our diversity, we are supposed to live what we preach.  You forget it is okay to be different.

But…not every time.  Sometimes you take off your tired hat, and you have on your superstar hat.  Sometimes you remember.  Somehow, eventually, you remember more times than you forget.  You retrain those parenting muscles.  You change your reflexes.

And most importantly, you begin to accept that ‘different’ can be more than just what someone is wearing or how someone talks.  ‘Different’ can also be the way someone thinks, the way someone experiences the world.  If it’s “OK to be different” then it really is okay if he or she can hear you say “we’re going in 5 minutes” and not understand what that implies for what they have to do in those five minutes.  If it’s “OK to be different,” it really is okay if they simply don’t have an internal timer to tell them the difference between five minutes or five hours.  If “it’s OK to be different” and we really mean it, then we will change our expectations of that person and accommodate them with clear signals, maybe visuals, about what we are doing, when we are doing it, maybe why we are doing it.  Every. Single. Time.  We will make that all explicit rather than assume they ‘get it’.  We will adjust our actions, rather than take shortcuts and get ticked off when they don’t respond as we assume they should.  Each. And. Every. Time.  Until it is our new norm.

If it’s really “OK to be different” then we will lose that resentment, that frustration we feel when confronted with those differences.  This is key.  This is the unspoken challenge, so very hard to achieve.

My husband and I figured out at one point that we were signaling to our son at least a hundred different ways in a day that his instincts were wrong, that his thoughts were not right.  Our language was full of “no-s” and “don’ts” and “stops”.  We were telling him in ways big and small that he wasn’t conforming, that he wasn’t ‘right’.  Nothing he tried to do, thought about doing, wanted to do – nothing was ‘right’.

It was a sobering day for me as a parent.  Heartbreaking.  We backed off.  We started to give him space to work through things in his way, a different way.  We started to listen more closely, to understand his way of thinking – rather than always expecting him to understand our way of thinking.

We began to trust that in his different way, he has wisdom that we can all benefit from.  We began to accept.

Yes, it also helped when he recently moved to a special needs school and the pressure to conform was lifted.  But it’s so much more than what school he goes to and whether or not he must wear a tie every day that he feels strangles him.

It’s about respect.  It’s about remembering everybody’s brain IS different.  And it’s about honouring that difference – not repeating phrases that we become numb to hearing.  If it IS okay to be different, that must mean we are equal even as we are different.  It doesn’t mean “my way is the right way, but I will tolerate his differences.”  It means “his way is just as valid as my way.”

I don’t pretend we are anywhere near perfect on this.  We slip into old habits and old patterns all the time.  We still want to shield our son’s differences from people we assume might be hostile.  We get frustrated way too quickly, even if he is trying to explain what he is doing, why he is doing it, or simply just enjoying his moment.  We don’t wait, give space to his version of things.  We don’t always accommodate his uniqueness.

And yet – somehow over time, it really is okay to eat in the bathtub, says the more relaxed mum, the weathered mum who just spoon-fed her 12-year old youngest son raspberry swirl ice cream in a shocking blue bath while he played messy play with foaming soap. The mum who owes the author, Todd Parr, both an apology for having sworn at him so often and a sincere thanks for the way he forced me to challenge my assumptions.

There is no longer any doubt in our house – mum will indeed feed you in the bath (or shower too) if you request it.

Different?  For sure.  And it’s okay.

Dreamcatcher v. Mr. Orange Sun

dreamcatcher_usethis

By SB_FASD

Our son with Fetal Alcohol Syndrome doesn’t have the severe sleep problems that affect so many with FASD.  Well, that said, although he does sleep for up to 10-12 hours a night he often doesn’t want to go to sleep and has trouble falling asleep even with the help of a low dose of melatonin.  His pre-sleep routine can take up to 3 hours.  In part, it’s because he actively tries not to sleep.  At times, he fights it.  For this, we can thank some clever person who in his or her wisdom decided to post on YouTube a revamped version of the Teletubbies, where George W. Bush’s face was in the middle of the sun and he lasered and killed the Teletubbies with his eyes.  Our son saw this many years ago, and to this day he still fears ‘Mr Orange Sun’ will show up in his dreams.  And he does.  Frequently.  It is a recurring and terrifying nightmare for him.  As he is growing older, he also tells us about other dreams – kids in school being mean, someone yelling at him.  But none have the power of Mr. Orange Sun.

If you think about it, dreams are really abstract concepts.  It must be so confusing for a kid who can’t handle the abstract to make sense of why these images relentlessly parade through his head at night.  I would want to stay awake too.

He has his own strategies for coping.  He believes if he falls asleep facing the wall, he will have nightmares.  If he sleeps facing away from the wall, he will have good dreams.  Sleeping on his back facing the ceiling means no dreams.  Recently he latched onto the idea of getting a dream catcher.  By recently, I mean within the last year.

We hesitated.  He takes these things quite seriously.  He heard once that coconut oil can make your hair grow faster, so when we got him a little bottle of coconut shampoo he had us measuring his hair after each shampoo.  He got really frustrated to see it wasn’t working.  For a week he had Sharpie marks all over his arms trying to see if the flash on a phone would leave a mark.   He doesn’t understand why Justin Bieber has millions of fans on YouTube and he doesn’t when, just like Justin, he posted his videos and asked for people to ‘like’ them.  He thinks if you call Annabelle you will hear her (again, thanks to YouTube, I hope you don’t know who Annabelle is – the spooky looking doll that seems to have supplanted the Lady In White we used to try to talk to during kiddie sleepovers).  You may be thinking “all kids go through these stages” and yes, they do.  But not like this.

His brain is literal.  Extremely observant.  But not flexible.  He is not able to rapidly redirect or refresh the way he looks at something.  If he has it in his head – as he does this weekend – that a raw egg is good for shiny hair, we can be sure that at some point this weekend, this will be tried. Our choice is to help him with this experiment, redirect to something more suitable (though often that is a tough sell),  or pick egg shells out of the bath yet again after he surreptitiously gives it a try anyway (yes, it has happened before, some of these ideas are cyclical).  We are learning to go with the flow.  If his experiments are not too over-the-top, we facilitate.  We teach he just needs to get our permission first.  We will help him.  Some of his ideas are not ‘wrong’ or ‘bad’ – they can be tiring and messy – but there is almost always a kind of logic behind them, and yes, they also can be quite fun like the foaming soap and whipped cream challenge, the messy play challenge, or his sensory-rich birthday extravaganza (not for the feint of heart).

It’s this same persistence/inflexibility that means we have learned to accept that if there is any candy in the house or any ice cream, he will eat it.  He will fixate on it, and until he knows it is gone, we will not be able to deter him.  Well, we could of course, but we have learned it is simply not worth the fight and chaos that would ensue.   As I type, he is in the freezer, getting his third Twister of the morning.  My bad.  I should never have picked these up in the shop yesterday.  I wasn’t thinking it all the way through.  I saw them, remembered he liked them, not really thinking of how many were in the box.  No, I am not going to battle over Twisters this morning.

None of this is to say that our guy cannot learn.  Quite the contrary.  He is constantly learning, gleaning information from many sources, seeing things I don’t even notice (what ways the wipers go on the cars is one that still boggles my mind – some do go left-to-right, others right-to-left).  What helps him learn is consistency, repetition, finding those moments when he is receptive to input, those times when he can meet me eye-to-eye, and we can connect.  When we can use some of his other senses to help imprint some bit of information onto multiple parts of his brain.  We model the behavior we want him to emulate.  We reinforce, reinforce, reinforce.

And then, one day, magic.  He does something that gives us great hope.  This happened a couple of nights ago.  There was a problem upstairs with phone chargers (he was using my phone since his was long ago crushed and the Amazon Fire Kids tablet of my last post has still not been replaced, at least he doesn’t yet know it’s been replaced as we let that ‘natural consequence’ sink in for a few more days…). My husband went upstairs to sort it out. Our guy came downstairs on the couch with me and the dog.  He very consciously reached to the dog for reassurance. He explained clearly that there was a problem, the charger wasn’t working. We heard my husband up there expressing less-than-calm vibes. (Occasionally it can be good spectator sport to see my husband losing to technology.  Sorry dear, but it’s true.  But not when it’s nearly bedtime, and the little one is possibly on the verge.)  My husband was getting audibly upset, and increasingly frustrated.  We could hear it clearly.  Our youngest, who had the dog on his lap, looked at me eye to eye and said with compassion in his voice, “I think you should go. I think he needs help.”

Wow!

That may sound small. But it was huge. He wasn’t defensive, he wasn’t upset by the confusion over the charger.  He wasn’t escalating in step or ahead of my husband’s escalation. He was totally in control of his own skin.  He was telling me he didn’t need me, he was okay.  Daddy needed me more and I should go. HUGE. I said that was really good that he pointed that out to me that Daddy needed help, and I would of course go and help Daddy with his problem. And I thanked him for thinking about Daddy, since we know he has been ill this week.  And all this was on a night when our son was deeply disappointed that the snow they SAID would come didn’t materialize.  He was in control.  And while in control, he was loving and attentive to the needs of others.  HUGE win.

(And, yes, the charger isn’t working properly because our guy fiddles with it when he is using the phone, but that is the risk I take in letting him use my phone.  He is not doing it consciously.  That was a conversation we had later, quietly. He understood.  He’ll probably do it again, but he did understand.  Maybe someday, he will be able to stop doing it.)

It can creep up on us, this idea that he is learning.  He is observing.  He is making progress.  Sometimes it’s not easy to remember – like yesterday when we had a roll of toilet paper torn up and thrown downstairs.  Six, seven months ago, we might have had a huge scene – broken toys, smashed doors after that.  Last night, we contained things and within 10 minutes we were up in his room, in the quiet and dark.  I was giving him a foot rub and ignoring the words until they too calmed down and we could get to the business of deciding what food he might like to eat.   We are not perfect.  We are flawed.  My every instinct is not that of a saint, believe me.  I say things in the moment that I wish I hadn’t, things I know I should not, things I know that don’t help.  But we are able to grasp at the progress and hold onto it.

When we least expect it, we see it.

Back to the dreamcatcher.  He was so hopeful when his dad nailed it to the wall above his bed.  Our guy showed him just where to put it – not too high, not too low.  The first night went well.  But the second morning he woke up discouraged.

“I had a bad dream.  The dream catcher didn’t work.  I think I need a bigger one.”

He doesn’t ever give up, our guy.  Inside that bundle of energy that is his powerful and amazing body, he is at his core an optimist though he may be wrapped up in layer after layer of anxiety and doubt.  Somehow he faces his every day – no matter how confusing or overwhelming or terrifying it can be – he faces ever day anew.  We call it his ‘reset button’ and it is one of his greatest strengths.  It is one of the gifts he has given me, a reminder that within us all we have this ability to start over, to try again.

 


Bed times and pre-sleep have long been an issue for our son.  Looking back at those pre-diagnosis years and our lack of understanding makes me cringe.  And yet, he has had nowhere near the troubles with sleep that some with FASD have.  For more about sleep and FASD have a look at these links:

Sleep – information and strategies from the FASD Network of Southern California

Strategies Not Solutions (one of my favourite parenting booklets out there) from Edmonton and Area Fetal Alcohol Network (EFAN) (see esp. p 34-36 on sleep)

Sleep Problems in Children with Fetal Alcohol Spectrum Disorders, Maida Lynn Chen et. al. J Clin Sleep Med. 2012 Aug 15; 8(4): 421–429.