Dear GPS: Show Me the Positive Route

Blog Staying Positive is the Way ForwardBy SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Fighting Fear

Blog_FearOfFutureBy @SB_FASD

Help me.

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

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

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

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

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

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

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

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

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

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

I keep eyes forward.

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

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

Every step scares the heck out of me.

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

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

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

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

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

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

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

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

Help me help him.

——-

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

Ready for the Reset

Blog_WeFindPeace

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

————–

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

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

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

FASD Meltdowns

A Timely Reminder About Dysregulation & FASD

Why a Broken Screen Can Make Me Feel Good

The Building Storm of an FASD Meltdown

 

 

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

Blog Friends

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The ones who see you.

The ones who are there.

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

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

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

It takes a village indeed.

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

And you are so very, very much appreciated.

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

You’re awesome.

—————-

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

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

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

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

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

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

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

You are not alone.

Old Photos and the FASD We Didn’t See

Blog_OldPictures

By SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

__________

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

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

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

FASD: Strategies Not Solutions

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.

Why a Broken Screen Can Make Me Feel Good

we-love-a-child-with-fasd-9By @FASD_Mum

I am willing to admit I might be grasping at straws here, but today the smashed screen of our son’s Amazon Fire Kid’s tablet represents progress to me.  I get that I may be taking counter-intuitive parenting to an extreme, but here’s what I have been thinking ever since this happened at about lunch time today:

  1. He instantly communicated he understood the trigger for him.  “I don’t like it when the games time out before I can finish!”
  2. He recognized that he could have handled his frustration better. “I always throw things too hard.”
  3. He came to find me after it happened. “I broke it.”
  4. He trusted he would not get in trouble.
  5. He tried to problem solve. “There aren’t too many cracks on it.”
  6. He did not have a meltdown, but wrapped up in his duvet like we have encouraged him to do.
  7. He did not break my phone, which was also within reach at the time.
  8. Within 15 minutes we were able to recover his good humour, and jolly him out the door to singing lessons, without any rooms being destroyed in the process.

From the parental side, we did better today (if we don’t count our one epic fail, which I will address below):

  1. We responded when we heard a problem, but not by going in with sirens blaring even though we kind of knew a piece of electronics had just been sacrificed.
  2. By mutual, unspoken consent I went forward first, gently asking what had happened.
  3. We did not erupt in frustrated and harried verbal sparring between us. We kept the tones low.
  4. My immediate response was to reassure him. “It’s okay.  You’re not in trouble.  Where is it?  Let me have a look.  It’s OK.  You didn’t mean to break it, did you?”
  5. I quietly moved the broken tablet out of view, and started to scratch his back.
  6. He was making noises from under the duvet cocoon he had created – I quietly asked him a question about something unrelated to get him talking and back into a verbal mode. I kept repeating it quietly, to give him time to register the question. “What songs are you going to sing today at voice lessons?”  Wait a few moments.  “What SONG do you think you are going to SING today?”    “Do you have a SONG?”  Repeating the main word, understanding he might only be hearing every third word or so until he calmed further.
  7. Without too many words, I helped him out of pjs and into his day clothes, even avoided things flying when he was having trouble getting his foot into his beloved new gold-plated heeled boots which @FASD_Dad had very wisely brought up, a silent encouragement that yes, he could wear these out today and isn’t that cool?
  8. I instantly responded positively when he suggested his singing teacher might like it if he were to bring her a treat, like sweets. Of course I knew he had ulterior motives, but I commended him on being very thoughtful in thinking what the teacher might like.  I did that on purpose, to start those positive feelings flowing again, to get to “yes” ground again after the negativity.
  9. When I said to @FASD_Dad that our guy wanted to stop at the shop for sweets, he had already heard the deal, quietly agreed without batting an eye and without mentioning smashed tablets, and they were off.
  10. After the singing lesson, @FASD_Dad kept him busy with some of his favourite Saturday activities- they went to the charity shops (where he scored his 2000th marble run), filled up on food at Subway (which was vital), before visiting his grandmother and The Auntie.
  11. When they came home, we all sat and watched a music DVD in the living room that is still filled with Christmas lights and the (artificial) Christmas tree because our guy (and his older brother it must be admitted) don’t want us to take them down. So we haven’t.

So, why am I feeling good?  As I say, I am willing to admit it might be grasping at straws.  The little one is up in bed.  He is calm and at peace.  We are all calm and at peace.  The house is kind of pretty in the multi-coloured glow.  Rather than feeling like a failure doomed to bad luck for not taking down these (minimal) decorations, I am seeing it as a positive.  I am responding to our guy’s wishes, giving him control over this – it hurts no one and he’s right, it’s kind of nice.  I guess I am feeling good because we are learning.  We are far from perfect, but we are learning.

Readers of the blog may recall some earlier catastrophes with tablets and phones, including The Worst Day Ever.  These incidents were horrible, traumatic, and had knock-on effects for weeks.  But, we have learned.  We got the Amazon Fire for Kids when it was on sale because it has a great kid-friendly replacement policy (or at least, we will see how parent-friendly that is in coming days).  We understood there was a risk, and we researched and took precautions so that we weren’t losing a ton of money.  We don’t get any electronics now without buying a replacement package.  Our son has a disability.  Things happen.

I also am pleased because even though electronics are a hot button between my husband and I sometimes, we worked through it today, in synch, and we are okay.  I am feeling good that our guy knew he could come to me even if something pretty bad on the scale of things in his world had happened, and that there is not one hole in one wall as part of the aftermath of frustration and hurt and disappointment that a favourite piece of electronics had been broken.

He will face some natural consequences.  He will have to bring an old Leap Pad with less grown up games on it during his 30-40 minute taxi rides to and from school until we can get the replacement sorted.  We will not hurry that process.  He will be without this for a while.  We will gently reinforce with him during this time that when he is feeling frustrated he should put down electronics and punch a pillow if he has to, or take deep breaths.  We will talk about this a lot, just not now.

Yes, it is counter-intuitive parenting.  In the world I grew up in I would have been sent to my room, grounded, and I would have had to work around the house to earn money to replace the item.  And that all would have made sense for the kid I was.

But we know our guy has brain injury that means he cannot always control his impulses.  That surge of frustration when that totally-annoying-game-just-did-not-give-him-enough-time-AGAIN-when-he-was-working-so-hard-and-was-nearly-there…that ARRRRGHHHHH moment that we can all recognize floods his system and because of the way his brain networks are wired, the other ‘thinking’ part of the brain sometimes just cannot kick in until, oh no! It’s already broken.  And-now-what-should-he-do?

There is no amount of ‘punishing’ that will change that wiring of his brain.  The best we can do is put in place strategies to ensure conditions are the best possible to avoid him getting that frustrated or overstimulated to begin with.

So, if there was an epic fail today, it was mine.  I was on the computer from the moment he came downstairs this morning and I knew he was on electronics for too long.  I made a choice this morning not to enforce our ‘no screens weekend mornings’ policy that has been completely ignored by us all over this past hectic month.  I knew it was getting late, he hadn’t eaten properly, and that he was likely to be unhappy about having to get ready to go to singing after a cozy morning at home staring at screens.  I could have, I should have headed this off.  He even said to me yesterday that I am on the computer too much.

I am not saying that to have others tell me I shouldn’t feel bad, and I shouldn’t kick myself.  I am not.  As I said, I am at peace.  I feel good.  I think I am speaking for my husband as well.  Today, we showed signs of growth as a family. We all of us – big and small – spotted where we slipped up, we talked about where we didn’t ‘follow the script’ and what impact that had.  We comforted each other, and we moved on and recovered.  So, yes.  It was a good day.

But I am not going to take credit for that.  Our guy is a super star. He is working at things.  He really is.  He is trying hard, in his way and in his own time, to implement the strategies.  He is more resilient than he has been in a long, long time.  We believe he is having a new chance at being able to do this because such huge pressures have been lifted from him by switching to a special school.  He had been using every last ounce of his will power to get through those school days in his old school.  Just yesterday, we were discussing that his appetite is starting to climb as well.  He actually wants to eat much more often than previously.  Across the board, we all are progressing.

So here’s the small hope we toss out there to those who might be needing it:  if we could crawl out of the hole we had been falling into, others can too.  I guess that is the main thought for the day.  These parenting strategies are not really rocket science.  But they rely on us practicing and developing different reflexes.  This doesn’t happen over night.  It is a process.  I am sure the pros out there are shaking their heads reading this, and I imagine they could find 50 things we did wrong today.  I am sure readers have spotted some things we could have done better as well.  We welcome advice and comments.  We are far, far, FAR from perfect.  We are muddling through.

But none of that changes the fact that for us, today, this was progress.  And in a world that moves fast and is full of tense and challenging moments, we have to take time to celebrate the positives.

So yes, I am choosing to look at that broken screen and allow myself to feel good.

Ten Tips for a Holly Jolly Christmas – Inclusion, FASD & That Christmas Dinner…

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By @FASD_Mum

Ho Ho Oh Boy – it’s Christmastime. Again.

For those in the greater FASD community who celebrate Christmas this time of year is challenging.  Feeling more like Scrooge than we care to admit, we jump out of bed each morning with an eye toward Christmases Past, Present & Future.

Christmas Past

We have suffered the defeat of Christmases past – when time and again expectations have been dashed by the hard realities of life for a child with FASD.  Flashing lights.  Sparkly tinsel.  Spinning decorations. Dropping pine needles.  Anticipation.  Confusion. Disbelief. Unbearable excitement.  Inevitable disappointment.

Ten Christmas truths as we have come to know them from Christmases Past:

  1. Not all kids can handle the idea of a big man dressed in red coming down imaginary chimneys.
  2. Some can handle even less the idea that it might not happen.
  3. Santa’s naughty or nice list can cause great anxiety for kids who have trouble controlling behaviour. In our house, kids know Santa gives points for trying.
  4. Schools have no clue how much toll those extra events can take on some kids. The lead up to The Day can be daily chaos for kids who need routine.
  5. It can matter greatly if a tree starts to shed its needles early. Last year our son panicked every day for a whole month.  This year we have an artificial tree.  (Still in its box along with all the other decorations, I might add.)
  6. Christmas light speed dials should be banned.
  7. That fact that it doesn’t snow in every town on Christmas Day can cause great distress for some kids who think Santa’s sleigh needs snow to land. This isn’t ‘cute’, this is a serious worry.
  8. Most toys have a half-life of joy measured in nano-seconds on Christmas Day.
  9. For some kids, sitting for that famed Christmas dinner is a mini-torture zone.
  10. The pressures on parents/carers to maintain calm for hours can suffocate the joy out of any lighted Christmas pudding.

There is probably not a parent/carer who celebrates Christmas with a child with special needs who does not put their head down on the pillow on Christmas night without a huge thankful thud that it is over for another year.  Who among us has not sworn we will never do it that way again….

Christmas Present

And yet, here we are, preparing for Christmas Present, ready to repeat/endure the same routine.

This year, please have a thought for families who may be struggling, those who need a change.  Those who see a train wreck coming and are asking in ways big and small for your help.

The weight of Tradition is bearing down on us, suffocating us.  We are already balancing as best as we can the demands in our own homes, let alone bringing our particular road show to others’ houses.  We desperately want to feel festive.  We want so much to have fun, to be reminded of what it is like to feel relaxed and joyful that it is Christmas.  But we too often feel alone, stressed, isolated, and perhaps depressed.  We are tired, even if we have plastered a happy smile on our face for the kids and for you.

Ten tips for helping a family with FASD through this holiday:

  1. Give them time to prepare – offer to take their kid(s) for a walk or out for hot chocolate, or for a sleepover one weekend before Christmas. They have some elving to do and really could use the time to feel the fun of it.
  2. Offer to help put up lights and decorations when the kids are out at school.
  3. Treat the parents/carers to a festive lunch one day while the kids are at school, before Christmas holiday madness happens.
  4. Plan to have a special activity with the kids during the holiday – plan ahead, let that be your present to the child. A movie, a trip to a soft play area, ice skating, a trip to a special pool – anything.  Believe me, the parents will worship you for it.
  5. Keep celebrations short – holiday marathons are not made for kids who sprint.
  6. If you are worried about ornaments breaking – remove them before kids with FASD arrive, do not let the focus of the day be everyone telling the kid to stay away from shiny, sparkly, intriguing things they are never going to be able to ignore.
  7. Ask ahead what the kids might eat – it is nowhere written that mac and cheese is banned from a Christmas table.
  8. If you know adults with FASD – reach out to them before Christmas, ask how they are doing, see if they need help planning or shopping. Ask what’s on their minds.  Some grapple with past traumas that would bring most of us to our knees.  Invite them over if they have no where to go.
  9. If someone you know struggles with addictions, don’t serve alcohol if you have invited them to your home.  Show respect.  At the very least be sure you have some fun sodas and non-alcoholic treats.
  10. Give people the space they need – have somewhere quiet ready in case a person with FASD needs to have a break, and let them go there without making them feel bad, without any jokes.  The pressures each feels are very individual, please be flexible and understanding and do not interpret their needs as a personal criticism.

Christmas Future

And then, there are all those Christmases Future.  As challenging as our past and presents may be we all have a wish for the future – to ensure other families can avoid having to face these challenges altogether.  The most important gift in the world is the gift of health.

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There is great pressure at this time of year to be ‘festive’ – to have another cocktail.  To toast a new year coming.  People make merry in lots of ways.

Statistics show that “December is the month when the highest number of babies are conceived and the month in which the highest amount of alcohol is consumed. (Office of National Statistics, 2015).  It is crucial therefore that families are aware of guidelines about the effects of prenatal exposure to alcohol and developmental risk for children so that they can enjoy the festive period more easily.”  (See the excellent article by Carolyn Blackburn, “Did You Know More Babies Are Conceived at Christmas Than Any Other Time of Year?”)

If you think you might be pregnant, if you are trying to get pregnant, or if you are having sex without birth control, remember, remember, remember it’s not just about this year, but all those years ahead.

The UK Chief Medical Officer says “The safest approach is not to drink alcohol at all.”

Here is a video by Lee Harvey-Heath, an adult with FASD who encourages people to see the world through his eyes via his Facebook Page (which we strongly encourage you to ‘like’) and other outreach.

 

One Final Thought

And yet, for all the angst, there still is nothing better in the whole world than to see a child’s face light up in that first magical moment on Christmas morning.

 

 

Defeat is the Enemy

my-heart-broke-for-the-thousandth-time-watching-him-rage-against-this-world-and-the-pressures-we-put-on-him-to-conform-2By @FASD_Mum

He was on the floor, screaming, his voice hoarse from crying.  He did not want to go to school. He tried to tell us this in every way he could.  It started as soon as he woke up, “Mum, my nose is still running. [It wasn’t.] I have a cold.  [He did, last week.]  I can’t go to school.”  Later on he changed his approach, said his tummy ached.  Then he switched tack and told us he doesn’t like school, it’s “boring.”  “I want to stay home with you.”  As his more peaceful entreaties failed to sway us, as we brought out the school uniform and steamrolled past his comments trying to get him dressed, his panic began to escalate and became palpable.  It stopped being words, started being actions.  Running up to his room, hiding under covers.  Going into his calm space, pulling the curtains, asking us to leave him alone.  We asked him how much time he needed, gave him a few more minutes as we have been advised – so that he had some say in how the morning should go.  But the clock was moving, and we had another child to get to school.  Work to do.  We really needed him to go to school.  He fed off our growing tension, things got worse. Five minutes later, when we went back, he was still not ready.  We ramped up even though we knew we shouldn’t.  He really didn’t want to go.  We really needed him to go.  Things started flying.  Chaos, again.  Fetal Alcohol Syndrome does not make for gentle mornings in our household these days.

Before this morning was done, he became fully dysregulated.  His brain was overwhelmed, locked in fight and flight mode.  We were beyond getting out of this calmly.  He was screaming, crying, kicking, pleading, begging, entreating me directly, “Mummy!”

My heart broke for the thousandth time watching him rage against this world and the pressures we put on him to conform, hating ourselves for trying to bend his will to a system that is not designed for someone like him.

And then, there it was.  The moment of defeat.  He had surrendered.  I could see it in his eyes.  He disappeared a little more inside himself.  He lost his battle, again.  He headed off to school reluctantly with my husband, shoulders drooped.  Shattered.

We all are shattered. This morning was like most mornings these days.

I ache inside for what he loses every time this happens.

I don’t think that his teachers understand what it costs him just to walk through the school doors, through the halls, to sit expectantly at the desk knowing they aren’t really talking to him, aren’t really expecting him to light up with the answers.  Every single time he goes into school is an act of courage.  Lately it also is increasingly an act of defeat.

We have finally understood the need for change.  We have heard him.  We do listen.  We are making moves to get him to a special needs school now – especially since it has been made clear to us that the changes in mainstream education leave no place for someone like him.  We see that he is being set up to fail.  But bureaucracies move slowly.  We are not at all certain we will be able to get him into the school we want him to attend.

We are in a no-man’s land.  We have told him we will look for a new school and that it will take time.  But he really is struggling, and he needs something to change now, today, this minute.  For someone with FASD “taking time” is a hard concept on a good day.  And these are not good days.

He has regressed – playing games, watching shows that he used to like several years ago. His little being is so tensed up with anxiety that he has no resilience, no give-and-take.  He is always 30 seconds away from exploding.  His senses are super heightened.  I ate a raspberry the other day, and he instantly asked “What’s that smell?” and pushed me away because it was unexpected.  These are days when we have to tiptoe gently since a meal can be rejected due to a wrong spoon, a slightly different type of sausage, fish fingers that are not Birds’ Eye batter-dipped, or if someone “breathed” on a spoonful of food.  These are days when tooth-brushing is like a physical attack, when the way a hair band grips can lead to a massive meltdown, when a bit of water on a paddle ball racket has people ducking for cover amid instant mayhem.

It is heart-wrenching.  And exhausting.  We are living on edge as this school situation sorts itself out.  We are not the only ones.  There are many, many people whose kids are being forced to fit into classrooms that are not bending enough for their needs, classrooms that are constricting creativity to be able to meet the demands of the new guidelines regarding GCSEs.  There are too many kids with FASD who go into schools that fail to recognize this as a disability and don’t make the necessary “reasonable adjustments” to allow that child a chance to succeed before he or she fails or acts out or crumbles under the pressure.

I dread the defeat I see more and more often in his eyes.

No, worse than that, I fear it.  That defeat is the enemy.

I want him always to rail against this world, to stand up for himself and his beliefs, to think that when he tells people what he needs in a moment they will listen to him.  I hate, hate, hate that despite the fact he has told us in a million ways that school is overwhelming to him, that he is not happy there, that he cannot access what is being taught in the way it is being taught, we still must force him out that door.  It makes me question my parenting.  It makes me feel selfish.  It makes me feel like I am not doing my Momma Bear job of protecting my cub in a mean and sharp-edged world.

So, we bend in other places.  I find another spoon, quietly put aside the fish fingers that are not batter-dipped, dig through the refrigerator for something else he might or might not eat.  Lately, nearly every day  after school he is so beside himself with pent-up anxiety he has a meltdown-that-comes-down-on-us-all-like-a-ton-of-bricks, even though we have come to expect it.  Afterwards, I sit with him for hours in the dark.  I just sit there next to him, hoping my presence calms him, proves to him that I am on his side. Together, we wait for that moment that always comes at the end of these long days, with a little sigh somewhere just before sleep, “Mummy, I love you.”  “I love you too pal.  I love you too.”  Sleep tight.  Sweet dreams.  You’re a good kid.

We know that secondary disabilities are a huge threat to the well-being of people with FASD – too many tender lives are shortened needlessly as a result of addictions, dangerous behaviours, suicides – by-products of the toxic frustration that builds in kids with limited coping mechanisms who feel misunderstood, outcast and who seek temporary fixes to feel better.  We hear that policy makers in London are concerned about our kids’ mental health.  The young royals try to raise these issues through charity work.  And yet, no one focuses on the significant proportion of the population with brain injury due to FASD, whose mental health is at stake and worsening as a result of inaction and lack of support from The System.

The government’s sweeping changes to education policy is making it worse, not better, directly impacting the daily lives of kids like our son.  Scenes like the one I have described are happening in front halls and/or in schools across the country as the children signal that they are unable to cope in an environment that is too rigid.

What exactly, I would like to know, are we expected to say to our kids, you know, the ones who try their hardest but who just aren’t going to get those grades? The ones that are in the grey area – getting by, barely, but at such a great cost to their self-esteem – the ones none of you really think are going to cut it in the new system…?  The ones who know it too, who rail against going out the door to school for very legitimate reasons.  The ones who have no choice when the entire adult world comes down hard on them to just go to school, no matter what?  The ones who get detentions for not doing homework they didn’t understand, who crack jokes rather than show that the teacher’s instructions passed them by?  The kids who are bullied or the ones who lash out?  The ones who didn’t have support and, yes, failed that test again?  What do we say to stop that mind-numbing defeat from taking over their whole being?

We tell them we love them.  We seek every possible way forward, banging on every door that we know.  We reach out to other parents. We seek experts who can advise us.  We ignore those who say we have to live with things the way they are.  We don’t give up, and we don’t let that defeat seep into our kids’ inner core.  We hold onto them.  We cherish them.  We tell them at the end of each and every long day, we love them.  We are there for them.  Together we will find a better way.  And somehow, deep inside, we have to believe it. It’s hard.  Oh, yes.  It’s hard.  But we have to keep that spark alive.