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?)

Advertisements

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.

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.

Sensational Media Hurts Those With FASD

we-love-a-child-with-fasd-2By FASD_Mum and FASD_Dad

Warning: there are extremely offensive and disturbing quotes from the media in here about children and people with FASD, about birth parents, and about those who adopt complex kids.  We do not endorse any of them.

We were feeling good about the holidays.  Better than usual.  This is a hard time of year for many affected by FASD, and our family too has struggled through the seasonal merriment and mayhem over recent years.  During the 2-1/2 years since his diagnosis, we have taken great strides to better understand and support our 12-year old with Fetal Alcohol Syndrome and he also is better understanding himself.  Those moments that used to spiral out of control are becoming, for the most part, containable.  The tension that weighed us all down is lifting.  It’s still not easy, but with joy, love, informed support, (medication), and lots of sensory toys and play, we are getting there.

Yes, we were feeling ok.  And then an article from the Daily Mail popped up in our newsfeeds.  It slapped us in the face with its sensationalized headline and a picture of a child model screaming like a banshee.  “They open their homes to adopt – then find they’ve taken on youngsters who wreck their family. Why do we continue to BETRAY loving parents…”

An all-too-uncommon article about FASD in a major British newspaper is normally something those of us who push hard for greater attention to this issue celebrate.  But not all media is good media. This article lets down families living with FASD that need help.  It betrays children awaiting adoption by discouraging prospective parents.  It is destructive, contributing nothing positive to the national debate.

The article talks about how “[t]he children being adopted now are the offspring of our drunks, our derelicts, our damaged and our junkies.”  The result, it says “is an untold scandal, blighting the lives of thousands of well-meaning families.”  It invokes demonic imagery, talking about how educating these kids can be “the Devil’s own task.” It talks about how a child might be cuddled sweetly on the sofa and then without warning suddenly leap and “hurl herself” at her adoptive mum, hitting her, screaming “whore” and “bitch” and other “dark, dark words.”  The author warns “That might not happen tonight. Maybe not tomorrow, either. But it will happen again; it always does” as if there is nothing that can be done to help.  The article says nothing about the love and light our kids bring to our families, nothing about their talents and the contribution they make. No. In this piece, all our kids are demons who destroy.

The article does highlight the pressures some families face and it addresses the lack of support and funding for these families, but in doing so it repeatedly implies families who adopt kids with FASD are doomed. The clear implication is that people should not adopt, especially not the children of “those” people.

The article lit up the passions of social media.  At the time of posting this blog post, it has been shared more than 2,600 times (and counting), with more than 1,200 comments.

The sensationalism of the story was abhorrent enough.  But it is in the comment section where one can see the depth of prejudices we have to overcome if we are going to get society to deal with this hidden disability.

We are posting below some of the excerpts of those comments.  We can’t just dismiss them because we might not like the political leanings of a media source.  If these comments were written about any other segment of society we would be outraged.  We need to call them out.  We need to face them.  We need to debunk them.  These bigotries underlie the surface of polite discussion here in the UK on topics related to Fetal Alcohol Spectrum Disorders.  They fuel the stigma that stops our children, our young adults, adults with FASD, and their families from getting the support that they need.  We should never be so grateful for media attention that we allow this sort of article and these sorts of comments to go unchallenged.

Ready?  Here is what some of the dear British public thinks after reading this piece:

“Just put the little so and sos down.  Good for them, good for us. Cheap too.”

“Adopting an evil child is God’s way of punishing you for going against his wishes.”

“Trash begets trash that gets circulated around.”

“Some children are uncontrollable, and no amount of love and care will ever change them.”

“If a woman is a drug addict or an alcoholic, and generally a risk as a failed mother, she should be forced take medication to prevent her having kids.”

“It’s hard but morals, ethics and our way of dealing with the dregs of society needs to change. Why should happy, well balanced families be put at risk for being well meaning? These children have no future with a normal family.”

“I worked as a clinical psychologist for 20 years … I would never, never adopt a child nowadays. Not even a newborn. They are, essentially brain-damaged and cannot typically function in a normal family.”

“There’s no way I’d adopt, sorry… I don’t want to be beaten, stabbed or killed, thanks!!”

“Don’t do ‘everything possible’ to keep a premature baby of an alcoholic or drug-addicted mother alive, just to prove it can be done.”

“The genetics always came out eventually.”

“The problem today is that parents are not allowed to discipline a child in a way that would achieve obedience so the child becomes uncontrollable.”

“Think twice before adopting these kids. Fostering is like a test drive. If you don’t like you can always return to sender.”

Let’s be clear.  Kids with Fetal Alcohol Syndrome are innocent.  They have brain injury and other physical disabilities that are the result of exposure to alcohol in the womb before they ever drew a breath.  THEY DID NOTHING WRONG.  They are here, among us.  There are many, too many, in need of a lasting, solid home.  Yes, they will grow up to be teens, young adults and adults. Getting them the right support and stability matters greatly to their lives – it can literally change the course of their lives.  It can save families and relationships if they can be reached while they are young.  It can save them when they face the struggle of leaving home and trying to live independently.  There are no guarantees, but it matters.

Britain likes to think it is a caring community.

So, step up.

Experts estimate (because proper studies haven’t been fully funded and conducted) that there are as many kids out there with FASD as there are with autism.  Provide the information about prevention in the schools, in the doctor’s surgeries.  Stop faffing about whether or not your grandmother said drinking a pint gave you iron and follow the latest advice from the UK’s chief medical officer (who presumably has more scientific background than those urging you to drink up):

“If you are pregnant or think you could become pregnant, the safest approach is not to drink alcohol at all.” 

Stop thinking that it’s only those with addictions and living on the edge that have kids with FASD.  Accept the fact that those expensively dressed young educated, professional women who are increasingly binge drinking are a huge part of the problem too.  Provide help and assistance to at-risk young women and young mothers.  Fund the addiction counselling programs.  Provide proper healthcare.  Proactively fund and encourage early diagnosis of FASD and the related 400+ conditions that can co-occur.  Educate the social workers, schools and the other professionals to spot kids at risk for FASD earlier rather than later, once the secondary behaviors kick in (too often as a result of the lack of early support and understanding).  Get the parents, foster carers, special guardians, adoptive parents, midwives, teachers, doctors, educational psychologists, all those around the child who need it all the information they deserve.  Discuss and provide access to the therapies and medications that help some.  Put it all on the table, don’t sugar coat anything.  Face this epidemic as a caring society should.

We deserve a proper national conversation.  Together, we need to stare down those nasty hidden prejudices and dispel the stigma that is holding back the help we need once and for all.

Yes, absolutely, it’s important to highlight the struggles of children with FASD and their families, and the problems in the adoption system.  But we should never blame the children for their condition, portray them as demonic monsters beyond help whose only contribution to a family is to wreck it in the way this article chose to present them.  We should not trample the feelings and accomplishments of those young adults and adults with FASD whose lives are courageous and challenging.  If they are hurting or stumbling, as a society we need to lift them up and not knock them down – especially at times when their parents cannot fill that role for complicated reasons.  It takes a village.  We are that village.  We need to open doors of opportunity for this vulnerable population, not prepare more prison cells.   We should not scapegoat and shame birth-parents, but work cooperatively to help prevent further kids from being born with this brain injury.  We need to provide respite and compassion for those who are on the frontline caring for and nurturing those with this condition.

Life can be tough in our households.  Sometimes brutally difficult and even scary.  Certainly overwhelming and tiring.  We do need to tell that story so we can show that all families of kids with FASD need more support, that schools need resources, that the transition to adulthood is rocky and filled with dangers.  We need to show that support is needed and isn’t there. But in telling that story we must aim for positive change.  Because at the end of the day, beyond the frustrations, hurt and pain, that is what we all want, positive change.

We love a child with FASD, and he and others like him deserve our respect.  He is entitled to a chance at a life with dignity in a compassionate community to which he can contribute and from which he deserves support.

[Oh, and for what it’s worth we reported that comment about “putting them down” as inciting violence and hate.  Thankfully it seems to have been removed.]


Please see our resources section for more information and links.

Please also see the National Organisation for Foetal Alcohol Syndrome-UK (NOFAS-UK) response to the Daily Mail article

See also: A serious point about lack of post-adoption support is lost in what is a deeply unpleasant, slanted piece by Caoilfhionn Gallagher, Doughty Street Chambers

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

copy-of-think-before-you-drink

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.

christmas2016

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.

 

 

Christmas Gift Ideas for Little Ones With FASD

we-love-a-child-with-fasd-8

By @FASD_Mum

This is for those of you who, perhaps like us, may be behind in the Christmas shopping department and who may be looking for gifts for those little ones with FASD.  These are some items over the years that have been big hits.

Apologies, many of these links are for UK sites – but most of these items are available elsewhere.  These are suggestions only, of course we can’t endorse any specific product.  We understand all kids are different, what calms one may have the opposite effect on others.  But in case it’s useful, this is a glimpse into what has worked for us over the years.  (There are lots of great items available on sensory toys websites.  Here is one example of a great site.)  Christmas isn’t just about presents, and for our kiddo less is often better.  We are posting a variety of things here, just to get those creative juices going if, like us, you are staring into these coming holidays like a reindeer in headlights.

Our main point is that while some of these might not seem like presents you may have wanted as a child, they might be extremely welcomed by a sensory-seeking kid.  So, think outside of the box.

A heavy furry blanket.  Our guy has one he uses every single day, it’s great for sensory regulation and calming.  I have no idea if this one is heavy, it’s just an example.    screen-shot-2016-12-04-at-10-28-02-am

Soft colour changing pillow.  This one is really soft.

screen-shot-2016-12-04-at-10-31-03-am

Emoji bedding – we have used an emoji duvet cover and emoji pillows to help develop strategies for how to go from angry to happy (see this blog post) and to help him describe how he is feeling.  (We also have been known to encourage throwing the emoji pillows at a bare wall when frustrated or punching the pillows…) He loves emojis!

screen-shot-2016-12-04-at-5-26-57-pm

Sensory den/dark pup tent.  We have always wanted to have enough space (and money) for one of these or a bean bag chair (there are lots on that site, including some great full body loungers and some for teens).  You can be creative.  We have improvised by the bottom of a closet as a calm space for our guy.  Previously we hung curtains around the bottom of a bunk bed and put in special lights.screen-shot-2016-12-04-at-10-33-41-am

Bath items – GelliBaf, foaming bath soap, lavender bubble bath, bath cups with different holes in the bottom

screen-shot-2016-12-04-at-10-45-25-am

Fidget bag – lots of options for creativity here, great stocking stuffers (this is only one example) or maybe a fidget pencil case for those who have trouble sitting still in class.  Pencil fidget toppers or a chew buddy necklace also can help.

screen-shot-2016-12-04-at-10-56-17-am

Clothes – our guy loves compression shirts and tights, anything with spandex and without tags.

screen-shot-2016-12-04-at-12-45-51-pm

We haven’t bought weighted vests or expensive weighted blankets, but we have used lap pads and weighted warmers.  This one looks fun.  We used to have vibrating bug massagers and Ps and Qs for chewing.

screen-shot-2016-12-04-at-12-53-12-pm

Always wanted a body sox, but suspect we waited too long.

screen-shot-2016-12-04-at-12-56-16-pm

Safety mirror for those who tend to make things sail across the room.

screen-shot-2016-12-04-at-10-50-45-am

Galt marble runs have been a favourite in our house for years (though marbles do fly, and should be avoided for kids who put things in their mouths).

screen-shot-2016-12-04-at-11-06-53-am

Hands-on is great.  We have had success with magic sand (though be vigilant, we heard one family had a struggle when it was washed down the drain), play doh – our latest is the ice cream shoppe, play foam (but beware it’s very sticky).  We also have in past just given a huge plastic bowl so he can mix ‘concoctions’ in the kitchen.

screen-shot-2016-12-04-at-11-15-25-am

Also spinning paints, spinning markers, Spirograph JuniorGears! Gears! Gears!  (Yes, there is a theme here…)

screen-shot-2016-12-04-at-1-13-05-pm

Disco lights (we have many, but not this particular one). A bluetooth speaker with LED lights was also a big hit, worth checking out if you have technology.  There are many options for inexpensive sensory lighting, such as this one.  Have a google.

screen-shot-2016-12-04-at-11-32-08-am

Jumping items – a must when our guy was younger – sadly our garden isn’t big enough for a trampoline these days.  But a kiddie trampoline for the young ones would be top on my list (there are sturdier ones from disability aids websites).  Skipping ropes are great too, and cheaper.  Exercise balls can also be great for home use, having a kid just sit on one and watch TV or when doing homework can really help give that little bit of input – but in our house they fly too often for comfort.

screen-shot-2016-12-04-at-11-36-36-am

Swingball – endless hours of entertainment

screen-shot-2016-12-04-at-11-52-16-am

Books – we have found that our guy has a different relationship with books than our elder son.  He does better with hands-on books, like the Usborne Lift the Flap books (which actually contain some higher level info but more easily accessible for him, in little bursts). See Inside Your Head was one we used to help him start to understand his brain (though it’s not FASD related, we found it useful).  (When he was smaller all the touch and feel books were essential, like the That’s Not My… series.)   DK Eyewitness books for kids are also a hit, again very visual and short bits of info. DK Eyewitness classics are also a great way to introduce literature – like the other DK books they also have short bits of info and lots of visuals around the main story.  A Christmas Carol might be a timely one. (Some of these are out of print.  We often buy used books, we call it recycling.)  We also have had success with books based on movies like the Spy Kids or some of the Disney stories – the movie visuals in the books seems to help him focus.

screen-shot-2016-12-04-at-12-58-02-pm

Things scented.  Scented markers, scented pencils, scented stickers, scented bubbles, and the latest craze – Num Noms (ridiculously expensive but for a kid that loves smells I can see why he likes them).

screen-shot-2016-12-04-at-12-08-52-pm

Time timers – these are great – for kids who can’t innately understand the difference between 5 minutes and 5 hours, they show how much time is left visually.  (We sent some of these into school.)  There are some cheaper versions or the larger more expensive ones. We also tried a clock that changed colour every hour, but he hated it in the night (he needs a pitch black room to sleep.)

screen-shot-2016-12-04-at-2-06-41-pm

Some traditional games – Bingo! with a spinner.  Candy Land is still a favorite – (based on moving around by colors) and also Story Cubes, Spot It/Dobble.

screen-shot-2016-12-04-at-12-29-21-pm

Learning games – We’ve had recent fun with Lazer Maze, Gravity Maze, and Snap Circuits electronics kits (that we have often found used on eBay).

screen-shot-2016-12-04-at-12-37-20-pm

Lego – our guy never got into Lego until we got some Lego Friends.  We think the traditional Lego people were too abstract for him.  And then he loved the Lego friends performing sets.  There is always some Lego set that would appeal to most kids.

screen-shot-2016-12-04-at-12-39-51-pm

Technology – our guy has a love/hate relationship with technology.  We have found some things work better than others.  The entire LeapFrog range was always top of our list, very sturdy, good educational – and the toys go from very young phonics magnets up to a LeapPad (which he still uses).  We have had good luck with the Amazon Fire tablet for kids, (though we got it on sale). Same with the  voice command Amazon Alexa speaker (less to break), which we also got on sale.

screen-shot-2016-12-04-at-12-27-13-pm

Topping this year’s list?  Bean Boozled 4th Edition party game (these come in smaller packs as well).  For those who don’t know, bean boozled jelly beans have two flavours for each colour – one pleasant and one disgusting.  For our sensory-seeking son, getting a small pack of these is often a highlight on a Saturday – he films himself trying them and spitting out the horrid ones.

screen-shot-2016-12-04-at-12-10-45-pm

He’s also desperate for Pie Face.  I think I see why.

screen-shot-2016-12-04-at-12-14-10-pm

There are so many things he wants in the ‘made for speed’ category.  He has a scooter that sparks, that was a highlight of last year’s Christmas.   Some of his other demands we consider too deadly to consider: hover boards, skateboards, Heelys, etc.

This seems like a feeble attempt to lay out some ideas.  The main message is to ‘think sensory’ when considering toys.  Don’t try to push them to a new level if they are not yet ready.  Puzzles, dress up clothes, dolls – lots of those items that little kids like big kids might still like and need.  It takes some shedding of parental expectations to find those toys that will help them grow but also provide fun rather than frustration.

If you have other ideas, please feel free to share them in the comments section below.