Lower the Drawbridge

 

Blog VulnerabilityBy SB

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

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

You get the point.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So, welcome…

 

 

 

 

 

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.

Coming Up for Air?

we-love-a-child-with-fasd-6By FASD_Mum

And, breathe…

Five days.  Five days without one meltdown.  Five days without our son on the floor pleading with us to stay home. Five days without having things thrown, without anything broken.  Five days of this slight loosening of the grip on our chests.  Five days so far at his new school, and we are starting as a family to come up for air.

We know these are early days.  We expect to hit bumps on the road.  The week has not been easy for our guy, we see that on his face where he has been biting his lips which are sore and raw.  He has had so much to take in, so much to absorb.

And yet, there is a peace about him, a contentment that was not there a week ago.  He has come home each day tired but calm.  He doesn’t have much to say, this process is being internalized.  When we ask him, he says his new school is good and his lips are sore because of the cold outside.  We see he needs not to be peppered with one hundred questions.  We sit close.  We rub his feet.  And we wait for a meltdown that just doesn’t come.  We breathe in.  And we breathe out, a little more relaxed.

There are surprises. Already the education is breaking through. The first day he tells us they watched a movie, “The Tempest” by William Shakespeare.  He corrects my pronunciation of one of the German composers.  He pulls out a keyboard that hasn’t been used in ages.  He has been painting, bringing out games he has not played in ages.  He records a TV documentary about WWII and lays on the couch and watches it two afternoons in a row.  Plopping on the couch and watching TV may seem mundane to some, or even your parental nightmare, but in our house, this has never happened.  He has not previously chosen an educational program, and just watched it for an hour.  This is the sort of quiet that has descended that we are not sure if we can trust yet.  Perhaps, once it all stops being so new at school then he won’t be so tired and we may yet again see the after school ramped up behaviors.  Or perhaps not.  But for now, we have space to breathe deeper, lungs starting to expand.  We know enough to hang onto such moments.

Perhaps being around teachers who understand him, who listen as he sings, and who spot his growing distress due to the noise in the wood shop and who take him out to a quiet space matters.  Perhaps being in a place where he can pop into the sensory room at lunchtime and play with Orbeez matters.  Perhaps being allowed to wear hairclips in whatever way he wants to keep his growing hair out of his eyes matters.  Perhaps petting the school dogs and feeding the guinea pigs matters.   Perhaps not having to wear a tie or an uncomfortable blazer matters.  Perhaps not hearing loud bells ringing every hour and not having to face a huge scrum in the hallways several times a day matters.  Perhaps, and we hadn’t anticipated this, focusing on Candy Crush during the 30-minute drive in the car to get to and from this school matters as it is providing him transition time that he lacked before between home and school.

He is going to sleep on his own again, he doesn’t need me by his side to unwind at night.  He is not as oppositional, not so easily discouraged.  OK, he is learning some new vocabulary and occasionally using it.  A couple of the other kids who have less social boundaries bewilder him – he is not used to kids wandering during lessons, using curse words and not being sent out of the classroom.  But if something confuses him or throws him off, he recovers more quickly now.  Not everything is sending him into orbit.  I feel the hypervigilance we had been living under is slowly beginning to melt away.

Our relatives are rejoicing.  They tell us they have not seen us look like this in ages.  They see a glimmer in our eyes that has been missing for some time.  We are still a bit stunned.  Not yet fully relaxed.

People are asking if we wish we had done this switch sooner.  The answer to that is that we needed the past year so he could benefit from the expertise of a seasoned and experienced SENCO, deeper insights from teachers and the teaching assistants who worked so closely with him, and the pile of reports done by others they brought into in the secondary school to give us the missing in-depth specialist assessments – detailed pieces of the puzzle that we lacked previously.  These evaluations enable us to understand his educational profile better than those that we had in hand from the primary school.  They also provided the convincing body of evidence needed to enable the powers that be to make a quick decision to move him to special provision.  So his time in the mainstream school was useful to him and to us, even as it was hard.  But we are very, very happy to have found a place that seems to be better meeting his needs.

We are not sure what to expect this weekend.  I am guessing there will be a release of tension at some point.  Things may yet sail across the room.  We will do our best to get him some physical activity, to keep things positive, to keep pressures at bay.  I hope we can see him laugh.

But five days…I will hold onto that.  Who knew five consecutive days could be had without that heart-wrenching dysregulation that had become commonplace in our home?

I, for one, had not realized that we had forgotten how peaceful it can be to simply breathe without waiting for a crash or a bang or other signs of a small, pressured soul poised ready to explode.

I hope, I hope, I hope that we are breaking free of those times.  But I am sure we must be vigilant and protect these hopes from disappointment.  I am sure we are not out of the woods.  FASD is a hard, brutal taskmaster – throwing many hurdles in the way time and time again.  But five days…they mean something too, and we have to celebrate when we can the successes that come our way.

 

 

Gobsmacked

gobsmackedBy @FASD_Mum

The SENCO cried.

This week has been a ride through the rapids for our family.  Ups and downs.  Going from nearly drowning to the exhilaration of recognizing we might just get through. Getting around a particularly precarious bit, realizing it’s possible to breathe after all, and maybe even laugh.

Our son, who hours before had been in a fetal position under his blankets resisting going to school, was spontaneously doing multiple cartwheels down the school drive.  Then he did a dance of pure joy.  Soon, he was shouting out the car window to anyone who might listen, “I’m going to a new school!”

It’s been quite a week.

As you might guess, I am not one often at a loss for words.  But this week, this week I was overwhelmed to the point of silence.  (“Gobsmacked is the word you are looking for,” said my mother-in-law.)  We have heard so many horror stories of people having to fight bureaucracies hard every step of the way to meet the needs of their children with FASD, we were totally unprepared for a responsive, compassionate, quick and downright humane experience.  It left us dazed and humbled.

Nine days ago the panel met to determine our son’s eligibility for special provision.  Yesterday he had his last day at his old school.  Monday he starts at his new school.  It’s been a whirlwind of professionalism and goodwill from every quarter imaginable.  The powers-that-be all motivated and worked in synchronicity to do what everyone feels is best for our child and for our family.  We are deeply appreciative and humbled by the good cheer and caring that has surrounded our son during this process.

My faith in humanity has been restored. I cannot remember another time when my expectations were so totally exceeded on so many levels.

When the intrepid special educational needs coordinator (SENCO) at his current school heard he had been approved for special provision, she said, “It’s bittersweet.  I know this is best for him.  But I want to cry.”

The school he is leaving is a school worth fighting for.  It is run by progressive educators who believe every child can learn.  It has a vibrant program, including arts and music.  Last year our son, as an incoming Year 7 student, was centre stage and won the school’s “Got Talent” show.  It was a moment our guy will treasure forever, made possible by a school administration that puts great emphasis on nurturing the different abilities of its 1000+ students.  And yet, even here their hands are being increasingly tied due to changes in the national educational policies, and the limited budgets within which they can work.

Our son, with a slightly modified environment and less emphasis on GCSEs, could have survived in mainstream, if the government’s fine words about inclusion were backed up by the flexibility and resources to implement them in a meaningful way.  But our guy has one shot at these years, and it is too important to play out our political beliefs at the cost of his self-esteem.

And the SENCO knows that.  I suspect SENCOs across the country are weeping inside as they watch this nightmare coming.  The government’s new emphasis on tests are affecting all kids, and especially those with special needs and learning disabilities.  They are tying the hands of creative educators who want to include a diverse student population in mainstream classrooms.  And they are forcing hard decisions by parents across the country, parents like us who believe in inclusion but who must make the best decisions for their own children.

But this is a positive post.  In a world where we hear so many negatives, we feel the need to shout out with encouragement to all those who work within these systems to say, “It can work! Sometimes, it does work! Keep the faith.  Keep on fighting.  It is possible.”  We say that to encourage not just parents, but also those within the bureaucracies.  Sometimes we all need to know things can indeed work well.

We were expecting months of mornings like the ones we’ve been having – our son, completely dysregulated, begging us, pleading in every way he knows how to not force him to go to a school he finds overwhelming.  We had no idea that we could find out on a Thursday that he could start at a new school on the next Monday.

We never dreamed a place existed where our son would be so welcomed – not with trepidation as has happened every step of his educational way, but with excited anticipation.  But then, there we were. We had dropped by the new school on the Thursday to pick up a welcome pack. We were asked if we had a few minutes, the head wanted to come out to say hi, and within moments we were surrounded by two kids who will be his learning buddies, the TA, his form tutor.  We were whisked up to the classroom where he will be.  We met most of the 9 kids who will be in his class with him. We were shown artwork they made for him.  We had a 12-week-old puppy put into our arms. It was truly, truly amazing.  The warmth, the fact every adult and most of the kids already knew some of our son’s favorite things.  It was really so much more than we ever could have envisioned. And they didn’t even know we were going to be there that morning!

I am overawed at the love and concern and shepherding that is surrounding our guy. I am grateful. I know this is NOT the experience most people have, and it is so much more than we could have expected.  This is the way it should be – could be – for everyone.

We also are well aware that this is not a “miracle.”  It is the result of more than a year of hard work by the current SENCO at his mainstream school and the other professionals surrounding our son.  Once his FASD was better understood (and this admittedly is the culmination of a 10 year journey so far), they were able to bring in experts to make proper assessments: an outreach consultant from a local special needs school, an educational specialist from a division for physical and neurological impairments, in-depth evaluations from the speech and language team, detailed testing done at the school – supported and unsupported, to further understand our son’s spikey educational profile.  It is due to a forward-looking pediatrician who earlier had helped us to get a diagnosis when our child’s case was not straightforward and who recently has helped us engage with a local service for young people with learning disabilities.  The involvement early on of one educational psychologist who is expert in FASD whose detailed paperwork successfully counteracted some of the earlier, horrendous assessments done by other EdPscyhs.  It is a result of our better understanding of what is possible thanks to the contacts and connections we have made via online support groups on social media.  It helps that we have spent time researching and exploring options, seeking to better understand how to help someone with the brain injury of FASD to learn. None of this alters the fact that our son is benefitting from the goodwill and hard work of a number of key professionals, without the cooperation of any one of whom his move would not have happened so quickly or so easily. Even better, every single one of them has shared his joy at the news.

We know we are out of the woods yet.  We are certain there will be further bumps and knocks as we continue to navigate these rapids.

There is so much more to say.  But for this morning, this Saturday-in-between-schools, my husband and I really just want to say “thanks.”

Our son, who just woke up, is sitting by the heater, watching You Tube videos of people tapping cups to a beat.  He just spontaneously said, “Yesterday was my last day at my old school.  I am proud.  And Monday I start my new school.  I am happy….EXTREMELY happy.”

Such sweet music to my ears.


Paying it forward:  For those of you who may benefit from this, here are some authoritative quotes (with their citations) to use to back up your efforts to get educational authorities to re-think the way they are educating your child with FASD:

Fetal Alcohol Syndrome: “This [brain] damage results in difficulties for students in many areas of the curriculum in the acquisition of new information, linking new information to previously learned information and the practical application of knowledge gained.” [Secondary Framework: Teaching and Learning Strategies to Support Secondary Aged Students with Foetal Alcohol Spectrum Disorders (FASD), Carolyn Blackburn, Project Director, Professor Barry Carpenter, OBE, NOFAS UK, 2010, page 6.  http://www.nofas-uk.org/documents/FAS-eD%20SECONDARY%20FRAMEWORK.pdf%5D

“Students with FASD will require informed, empathetic, reflective practitioners who are prepared to personalise learning in order to provide a practical, multi-sensory approach to teaching with opportunities for 1:1 support, small group work and extension activities, which allow students to consolidate and generalise their learning experiences in readiness for living experiences.  [Secondary Framework: Teaching and Learning Strategies to Support Secondary Aged Students with Foetal Alcohol Spectrum Disorders (FASD), Carolyn Blackburn, Project Director, Professor Barry Carpenter, OBE, NOFAS UK, 2010, page 9.  http://www.nofas-uk.org/documents/FAS-eD%20SECONDARY%20FRAMEWORK.pdf%5D

“Multi-sensory learning creates multiple neurological pathways to learn. This whole brain approach maximizes understanding, learning, and memory. Multi-sensory learning eliminates the possibility of information solely being presented in the student’s weakest sensory modality and, instead, ensures addressing a student’s learning strengths. Involve as many senses as possible when learning: visual, auditory, kinesthetic, tactile” [Understanding Fetal Alcohol Spectrum Disorders (FASD): A Comprehensive Guide for Pre-K-8 Educators, Chandra D. Zieff, M.Ed. Rochelle D. Schwartz-Bloom, Ph.D., Mark Williams, Ph.D., Chapter Four, The FASD Student and the Classroom, https://sites.duke.edu/fasd/chapter-4-the-fasd-student-and-the-classroom/use-variety/]

“Creating multiple pathways to learning is the most effective way for FASD students to learn. Learning occurs more easily when words are linked to an action, paired with music or a rhythm. This can help students anchor information input and trigger or cue information retrieval: Pair oral information with visual cues; Teach concepts through art, music, and drama…” [Understanding Fetal Alcohol Spectrum Disorders (FASD): A Comprehensive Guide for Pre-K-8 Educators, Chandra D. Zieff, M.Ed. Rochelle D. Schwartz-Bloom, Ph.D., Mark Williams, Ph.D., Chapter Five: Effective Strategies for Information-Processing & Memory Difficulties, https://sites.duke.edu/fasd/chapter-5-the-fasd-student-and-learning-issues/effective-strategies-for-information-processing-and-memory-difficulties/%5D

One Canadian study placed the average life expectancy at birth for people with FASD at 34.  [Thanh NX, Jonsson E., Life Expectancy of People with Fetal Alcohol Syndrome, J Popul Ther Clin Pharmacol. 2016;23(1):e53-9. 2016 Mar 9, https://www.ncbi.nlm.nih.gov/pubmed/26962962%5D

“The importance of providing appropriate support for students with FASD cannot be emphasised enough. The secondary behaviours … may become disabling. Research describes the bleak outcomes for some young people with FASD: mental health problems (seen in 87% of children; O’Connor et al, 2002); disrupted school experience (60% over the age of 11 years; Riley, 2003); trouble with the law (60% of teenagers; Kelly, 2009); imprisonment (50%; Kelly, 2009); inappropriate sexual behaviour; problems with dependent living (80%; Riley, 2003) and employment (Streissguth and Kanter, 1997). They also are at increased risk of developing addictive behaviours such as alcohol abuse, thereby potentially continuing the cycle of FASD into the next generation (Baer et al, 2003). Streissguth and colleagues (1996) found that 3% of 6–11-year-olds, 12% of 12–20-year-olds, and 23% of adults from a cohort of 415 subjects diagnosed with FAS or Foetal Alcohol Effects had attempted suicide. (The adult figure is five times the US national average.) [Complex Learning Difficulties and Disabilities Research Project, Foetal Alcohol Spectrum Disorders Briefing Sheet, Specialist Schools and Academies Trust (SSAT), Information Sheet, http://complexld.ssatrust.org.uk/uploads/1c%20fasd-info.pdf%5D

Some Kindness Please, Brains Are Involved

We love a child with #FASD-5

By @FASD_Mum

It was just me and that machine.  Even my wedding ring was left outside that door.  Dizzy and uncomfortable, I tried to keep centered while the world jackhammered down on me in staccato bursts.  A pinging noise echoed throughout my head, a sonar sound like being in a submarine, wanting, needing to push off toward the open sky.  I imagined hanging onto my dad’s shoulders, he’d get me to the air.  My thoughts were everywhere, translating these overbearing noises into the familiar.  That tap-tapping reminded me of those days on my daddy’s jobs, when all the men were banging nails and building walls, dreams, for the people who would live there.  I remembered a fevered moment when my mom brushed my hair from my temple. I pretended that instead of the head brace it was her arms holding me still.  I kept pushing away the images of my mom after her chemotherapies, after she was swollen by steroids, after the brain tumor took over.  No.  I would not, will not, do not go there.

On Wednesday our 11-year old son with Fetal Alcohol Syndrome refused to go to school.  The day before had been horrid for him.  He couldn’t sit still.  The school routine is altered with end of the year exams and events.  They hadn’t removed him to a quiet space in time.  He was overwrought and lost it to the point of literally barking at a teacher’s aide.  They gave him a detention.  He was so upset by all of this we had a massive meltdown, one of a spectacular string that has left things broken, walls dented, spirits frayed.  We could not get him out the door to school.  The SENCO reached out, asked for him to come in for just a short hello, and he did.  They wanted to know what is bothering him.  He told them he was worried that Mummy has been in hospital.  They told him it’s good to go to hospital to find out what is wrong so they can help Mummy feel better.

Then the next morning when I woke him up he asked me in a sweet voice, “Are you becoming a gran?”  Images flashed through my head.  The bags under my eyes.  The pale skin.  The oversized shirts, shorts and black socks.  The day earlier he told me I should buy hair dye to bring back the blonde.  These are all little ways for him in his indirect way to ask me some big questions that he cannot form.   How many times in the past two months have I told him I didn’t feel well, that I was tired, that I would do something later, not now.  I felt sad for my son, feeling the weight of this on him when he is so young, so needy, so fragile still.  I know it is affecting both of our sons, but our youngest with FAS is simply unable to cope when I cannot cope.

The pressures of keeping on keeping on can be overwhelming when we ourselves are not feeling well.  The confusions this unleashes for a child with FASD are very real and we must deal with them.  We must deal with them when we are tired from yet more vague inputs from distracted doctors.  We must deal with them when the room is spinning and our heads are bursting.  We must dig deeper than we thought we could.  It is something I must do, any parent would do.

I am no expert.  And yet, I would bet a million pounds that every family with a special needs child has its core internal strength pulled and frayed to the point of snapping at some time or other.  I would bet that even the most positive people of good will find themselves at times like these stretched so thin it feels like it will all fly apart.  In our world, things literally sail across the room, break, and smash when we can no longer keep it all together in the way we know we should.  Our son thinks it’s his fault.  We know better than to blame him.  This responsibility makes a hard time even harder.  But I cannot turn away from that.  And I am not even very sick compared to some FASD parents I have been in contact with via social media.  I feel for them.  I feel for us all.  I feel for the children most of all.

I am a strong woman.  I can (kind of) understand my headaches, my dizziness, my strange ear sensations that leave me overexposed to shifting sounds and disoriented.  It may be due to something tangible or more likely something harder to pin down, like a virus.  Even though I understand it and the range of possibilities, it is bewildering to me.  The way I have been feeling has given me new insights into what it must be like for our son when he is inundated with sensation and overwhelmed by it.  My inability to stop the conversations around me, even though I say again and again – I can’t hear you, please slow down, I can’t remember, I am not thinking the way I usually do.  The way people look at me, they way they don’t really get it that I am not hearing them.  Then I get angry.  I get crisp. I sulk away and watch another stupid TV show about saying yes to dresses when I really truly could care less about what some spoiled rich kid wears down an aisle.  I watch it because it is mind-numbing and easy. I don’t need to hear it all, it’s visual.  Yes, I am gaining new insights into my son’s daily struggles.

I have been thinking lately that The System is simply not kind.  It’s not kind to leave a mother wondering for nearly 8 weeks as to what may or may not be causing troubles inside her head.  It’s not kind to hand me a printed sheet rather than a hug as I leave an MRI room, telling me I will have an appointment in 4-6 weeks to tell me what they may or may not have seen as a result of all that pinging, jackhammering, and pounding.  It’s not kind to ignore the worries and shuffle people out the door.  Maybe it’s the British stiff-upper-lip that has kept ships from sinking for eons, but it’s not kind. And yes, I will get answers sooner than 6 weeks because I will fight for myself in this cold system.

But even more importantly than my own struggle, it’s just not kind to make parents fight so hard to know what is going on inside their children’s brains.  At the same time I am grappling with this personal issue, I am reminded daily that people still have to really battle hard to get someone to consider diagnosing a child with a Fetal Alcohol Spectrum Disorder.  It’s simply not kind to the kids – the kids who do not understand why they feel so adrift, so confused, so lost all the time.  Why do we force parents who reach out for help to wait months or sometimes years before someone will help them understand their kid’s brain?  Why do we so easily blame the parents and their parenting styles when we know that there may be more to it?

It’s just not kind.  Months and years in a child’s life are ages.  It’s in no one’s interest to delay.  Early diagnosis increases the prospects for that person’s life.

This is very real.  We know there are many families out there right now seeking a diagnosis to help them understand their children, some with positive proof of maternal drinking and kids showing some of the classic signs of behavioral and other issues.  They are being told by doctors that Fetal Alcohol Spectrum Disorders are often used as ‘the easy way out’.  They are being told that their parenting is the cause of the behaviors.  They are being told they want these acronyms in order to make them feel less guilty.  Seriously?  That is not kind.  No sane person ‘wants’ their child to have irreversible brain damage.  No parent wants a diagnosis of an FASD because it is ‘easy.’   A good parent wants to know what it going on so as to meet their child’s needs and maximize his or her potential for a good life.

Imagine a different system.  Imagine a system where the doctors were our champions.  Imagine a system where the process was more than just stringing together a series of 10-minute appointments over several months, grasping for the little practical bits that can potentially change a life’s trajectory.  Imagine a system where someone stopped the manic battling, and just said, come in.  How can I help you?  What do you need?  How is the little one today? How are you today?

Our brains are complex, ornery, defiant.  I am not for a minute trying to say my recent experiences are the same as those faced by people whose brains have been affected by exposure to alcohol when they were in utero.  What I am saying is that when our brains are involved, the medical community should be kind.  It is not just simply one more organ.  Our brains control it all – from our moods to our expressive ability to our feelings to our ability to self-regulate.  Our brains are the core structure.  If we have problems inside our brains we cannot handle the rest of it.  And sometimes, the simple kindness of recognizing that can shift everything into a more positive place.

I realize these thoughts are a bit all over the place today.  I realize that there is a huge difference between how I am feeling and how someone with FASD feels.  All I know is that having something wrong happening from my shoulders up is disorienting to me in ways I have never considered before.  I have taken my brain and my senses for granted.  I have always relied on a sharp mind and quick reflexes.  I am thankful and very humbled to have this chance to think in a different way, to experience life from a less secure and maybe less privileged perspective.  I have even more respect now for people who walk through this world with such pressures coming at them from inside as well as outside.  I too now have learned to understand the relief of a darkened, quiet room (she types, in a darkened, quiet room).  I have felt my compassion for my son deepen through this process.

To all those out there who are struggling with their own issues as they try to help someone with FASD and to those with FASD who continue on even with all the struggles – here’s to you all, to us all.  If we can’t  find the kindness we wish for out there in the world, let’s at least let it be the one thing we can give in our own corners of the world today.  Today I will greet my son with kindness when he awakens.  I will try to surround us all with it, despite this ringing in my ears, the woozy rocking, and the state of the world around us.  Even if The System is not kind, at least I can (try to) be.  Even today when what I really want to do is bury my head under my pillow.

And with that, I literally just heard the patter of little footsteps.  Here we go…Happy Saturday…

 

 

 

 

 

 

 

 

Reaching Out After an FASD Diagnosis

We could no longer pretend everything was 'normal'We started to reach out about our son's FASD diagnosisAnd that changed everything.By FASD_Mum

We all want to be ‘normal’.  We want our kids to be loved.  When things go wrong, our instincts are to put on a smile, pretend ‘there’s nothing to see here,’ and to brush past staring strangers.  But sometimes that just doesn’t work anymore. This post is about our journey in reaching out to others about our son’s FASD diagnosis.

The issues that made that process of opening up so difficult began long before we had that acronym to hold onto.  We fought hard to adopt our son.  We had to wrestle with the complicated system.  We also had some of our closest family members and friends challenge us regarding the risks involved.  As older parents we were aware there were risks.  We had faced this head-on earlier.  Despite the odds, we did not do any of the advanced tests during my earlier successful pregnancy.  We were ready then to love any child who came our way.  We approached the adoption the same way.

And yet, I deleted some photos from my camera the very first day we met the friendly, determined and curious child who would complete our world.  We were entering the interim adoption period while we were waiting for things to be finalized and I simply could not handle re-opening those horrible discussions again about the risks and I knew those photos would raise eyebrows.  That night in the hotel we had one of the deepest conversations of our marriage.  I remember looking intently at those pictures, saying something is not right.  We had to face this, we didn’t turn away.  I remember a warmth in the room, a closeness.  The next day we asked some follow up questions in the baby home.  We were told, no, he doesn’t have Downs Syndrome.  We had wondered about this from the photos, although it wouldn’t have changed our decision.  (We now know we were looking at the full facial features of Fetal Alcohol Syndrome).  They asked if we wanted to see another baby.  We declined.  We both knew without a doubt we were not going to change this course.  This child who had so intently looked into our souls, he would walk his path with us.  We would hold his hands forever just as we once promised each other.  We would not be shopping for a baby.

The early post-adoption years were full of therapy after therapy after appointment after appointment.  We asked the hard questions, had rounds of genetic tests.  Nothing specific was pinpointed.  Not once did the possibility of Fetal Alcohol Syndrome pop up and we cannot understand why we ourselves didn’t think of it.  People understood he had sensory issues and various physical issues.  It all seemed natural for someone who had been in an institution for 16 months.

Life at home grew harder as our son began to grow.  We used to be very social.  We used to have lots of friends over for dinners.  We used to go out often with kids or without.  But as time went on, it became harder to think of a babysitter who ‘could handle’ looking after our youngest.  It became harder to think who wouldn’t mind it if something awkward happened while we were out somewhere.  It became harder to find energy to focus on ourselves as a couple.  It became harder even to talk about it with family.  Our parenting wasn’t working, something was wrong.  Bedtimes would go on for hours.  Time outs would become raging battles.  We were unable to get through even one store without some sort of holy hell breaking out.  But we couldn’t really talk about it, as we had assured everyone we understood the risks and we were prepared for whatever happened.  We would say we’d had a ‘hard day’ but somehow that was simply not translating into any kind of action from those around us.  Once when I complained someone said, “Well, why did you have kids then?” That one off-hand comment shut me up for another year or two.  Still our son was young enough that an hour at a playground screaming wildly around the walkways on his scooter at 100 miles an hour and some death-defying swinging was still a guaranteed release.

So then, The Diagnosis.  He was 10.  We had resisted the earlier autism diagnosis.  Autism had been discussed from those initial days, and he just didn’t quite fit the profile.  But this Fetal Alcohol Syndrome diagnosis was different somehow.

“Irreversible brain damage” is a phrase that can knock the air out of your body and make you wonder how you will find the strength to get the next breath. It can send all kinds of heavy doors slamming down on a future that you once dreamed for your child.  To know it could have been avoided can leave you gasping from the cruelty that exists in this universe.  At least, that is what it can feel like at first.  It is a hard, hard thing to hear.

All those test scores and numbers and percentiles pile up.  They seem so damning and so cold.  Even as they rattled them off after their imperfect testing sessions, even as we fought back knowing these figures did not capture our son’s abilities and strengths, even as we were being bombarded with some of the most horrible news we could have been given, we were already planning how to package this for the people in our world.  We wouldn’t tell them everything.  No need for them to know that part of it.  We would wait (a year, it turned out) for the full report, then maybe we could go into more details.  We did share some of it, carefully, with a very small circle (leaving out some key numbers, leaving out the worst of it).  Having a diagnosis did help especially with those family members who may have been thinking he would just ‘grow out of it’ or that he was just ‘being naughty.’  But none of us, not then, really understood yet what a diagnosis of FASD meant.

The process of beginning to understand how our son’s brain works took time.  Figuring out how to explain that to others around us was daunting.

We were stunned and we grieved. We swallowed the mind-boggling implication of the statement we were told as we received the diagnosis that in the UK, “There is no protocol for post-diagnostic support” for a person with FASD.  Having just been told our son had brain damage, we were simultaneously told there is nothing being offered to help us move forward with that news.  We stared at the reports and then put them away.  I think I slid into a mild depression, which isn’t an easy thing to do when there is a special needs child in our home needing constant attention.

Meanwhile, we took to the internet.  We googled. And googled.  We found some of the national groups via our google searches. (That too was confusing as there are several networks even in a place as small as the UK, all with similar names, similar purposes.)  Despite having been advised by UK professionals not to look at international information that might not apply here, we devoured it all.  Science crosses borders.  The information became overwhelming.  I started an online “Pocket” folder to keep track of the websites – with tags so I could search more easily for different information (FASD brain, FASD education, FASD prevention, etc).

We started with the school which had zero experience with a child with an FASD diagnosis. It became obvious we needed to get them information quickly. We prepared a whole binder full of some of the best practices.  (Some of the articles are here.)  While there is a balance in not overloading the very busy educators, no one in this school at least was going to have the excuse that they didn’t know where to find information.  We started to talk with the teachers about FASD nearly every day at drop-off and pick-up specifically about some of the tactics we were learning.  We worked cooperatively. We made some decisions when our son was in Year 6, facing national tests that the schools had been aiming toward since those students walked through the door.  He did not take the SATs.  We had a long relationship with the secondary school, since our kids both attended every holiday workshop they offered. We met early on in the spring with the SENCO at the secondary school he would be attending the following fall, again, armed with a fully loaded binder of information.  We planned his transition carefully.

But even still, we were floundering at home.  Everything was hard.  Our days were chaos.  We were concerned about the impact of this atmosphere on us all, including especially how it might be impacting our older son.

My husband and I had a serious talk about how we could no longer pretend everything was ‘normal.’

This was a key moment. I am sure I was pushing him a bit out of his comfort zone, but we agreed to widen the number of people who knew about our son’s diagnosis.  I needed this.  I was becoming too overwhelmed.  We were overwhelmed.

We started a secret Facebook Group.  People have a lot of negative to say about social media, but it’s a tool that can be useful.  For us, this was a key turning point.  This was the moment our lives began to feel a bit less lonely and really, it’s a simple thing to do for anyone who is on Facebook already.  Facebook has a feature that lets you add selected people to a ‘secret’ group – this is different than the closed groups of the various FASD networks.  For our secret group we chose who we wanted to start sharing information with.  We chose a mix of family, friends, a few colleagues, people we know who have children with special needs, and others.  This was our first message to the group. We had an overwhelmingly positive response.

“Dear friends: They say ‘it takes a village’ and this is our virtual village. We are inviting you to join this closed ‘secret’ group because you have shown over the years your love for our son and our our family. We have recently learned from the UK’s leading expert, that he has fetal alcohol syndrome, the effects of which have been compounded by early neglect… He has neurological damage that has resulted in difficulties in his ability to perform executive functions (i.e. – more abstract thinking). This condition, they say, is severe and lifelong. He functions very well with support. He is mainstreamed in public school and is performing well, though at a lower level than his age group…He has amazing strengths – he is an exceptional gymnast, he is great at music/dancing/singing (we have been told he may have perfect pitch), and he excels at other individual sports, esp. swimming. He is a generally positive and loving child. He has ADHD, without the inattentive side of it. He does not have autism due to his social reciprocity abilities, but he does have some restrictive repetitive behaviors. Our purpose in setting up this group is to allow us to discuss things a little more freely, using FB to our benefit, without having the full group of FB friends and colleagues see this discussion, as we want also to respect his privacy and dignity. (As a ‘secret’ group, only members can see the group, its members or its postings.) We have been struggling as a family for a long time now. We know we need help. Part of that is widening the number of people we share this journey with. We are not trying to exclude anyone from this discussion, but we don’t want the numbers to get too big, or we will be replicating FB itself… So we welcome your thoughts, insights and fellowship along this path.”

We also started to squeeze in one small social activity.  We started to attend coffee mornings on Friday mornings with a group of parents from the school. We began to help initiate these as well.  The purpose is not solely about FASD, but it allows us time to chat informally.  Some family members began to come.  Our network grew a little stronger.  This group includes the men who came to school with red-painted nails when they heard our son was being teased for having red nails on a school dress-up day.  Heroes, one and all.

We started to blog. We decided we had been having so much trouble finding all the resources that we might as well make that research available to others.  We also decided we needed a way as a family to further develop our own thoughts and to process the experiences.  The very first entry, “Meltdowns,” was explaining how we finally understood our son’s brain works differently:

“Spectacular meltdowns occur almost daily – things sailing across the room, accompanied by increasingly spicy vocabulary, gestures, and appalling rudeness. Deep distress and frustration boils out and over us all. But now we know none of this is heartfelt or intentional on his part. His brain just can’t stop it at this moment. The important thing is not to hold a grudge, because our child has a remarkable and admirable capacity to move on from such moments, to spring back with a great big hug and an ‘I’m sorry.’”

We started to attend support groups. This was another pivotal moment which we wrote about in a post about “Support and Resilience”.  Suddenly, even our worst case scenarios were not so scary.  We met people who have been through those worst cases and told us there is always hope.

We continued to arm both of our children and our family with information about FASD. We have gently been giving our younger son more words to understand himself.  We have given his older brother more detailed information.  We don’t belabor any of this, but we are educating our family unit with the information we all need.  Our older son has a space on the blog where he can write when he wants to.  An auntie has joined as a guest blogger as well, addressing issues of how to engage extended family in these discussions.  Some of her posts have become the most widely shared, proving so many of us need help in engaging extended family.

We started a local support group. We talked openly with the pediatrician, and viewed her as an ally. She too felt the need for much greater education and resources in our area. She encouraged us to start a local support group.  She attended our first meeting and shares our information with relevant families.  The group started small, with only three people.  A few months later we now have approximately 20 people and we are all learning from each other.  The network is growing as more people are aware we are here.  We are becoming tied in with regional services for potential adopters, other groups with special needs kids.  Our posters are now hanging in local hospitals and doctors’ offices.  We are working collaboratively where possible.

We have become tied into national and international networks, including adults with FASD. This is the most significant change for us.  To have access to adult role models with FASD, people who have been there and who can tell us what our child is not yet able to explain….wow.  That’s mind-altering, horizon expanding power  and insight for we parents of younger kids.

This weekend we ran an educational table about FASD at a school fete at our sons’ old primary school, along with a game to get kids to come over.  We made a simple display focused on the theme that different brains work different ways, and it’s okay to be different.  We handed out flyers, announced our next support group date.

People tiptoed around it all a bit. It’s a heavy topic for a festive environment.  But we know it’s important to start slowly and build step by step.  It felt good to have our little one there, proudly helping.  It was wonderful when both our sons were helping the little kids with the games.  It felt a little bit like we’d come full circle as a family.  We entered that school so many years ago, with one child that none of us really understood.  And here we were, strong.  Confident.  Committed.  If even one person filed away the messages, and if someone one day reaches out for help or avoids a drink while pregnant, then it will have been well worth a hectic day in the damp and cool British summer.

Our family is still on a journey.  There are others who are so far ahead of where we are in our understanding, others so much better able to help or give advice.  We don’t claim to have the answers.  We are barely able to handle the still increasing challenges in our own home.

I am not trying to imply this path is easy.  In fact, it has been unbelievably hard lately.

But, even then, even when it feels like the weight of the world has landed just right smack on top of your weary and battered shoulders, even then it’s possible to look outward a little.

Finding the courage to open up to ourselves, our family, friends, colleagues and community about these struggles has in fact helped us immensely.

We are getting back more from this process than we give.  We can see past the walls we felt slamming down during those early post-diagnosis days.

There is Norwegian saying, “the path is made by walking it.”  We don’t know exactly where this all is heading, but one thing is certain.  Moving forward is so much better than standing still.

With a little one who is constantly changing, who flies and flips with great zeal into every day, whose life is a rollercoaster of emotion and impulse and love, we simply can’t be static.  For him, we have to be brave enough to tell the world who he is, where we are at, and what we need to make it through the moments, through the days, through the stages.  And to reach out to others to find out what we don’t know.

If it ‘takes a village’ to raise one kid, then it is also our job to contribute to the community.  In the process it’s the basis of a good life, the kind of life our parents taught us to live.   The kind of life we are teaching our sons to live.  Beyond the fear.

If you haven’t done so yet, go on.  Take just one step.  It feels good.

———————–

Just read this also related piece about the added challenges of reaching out from the perspective of a birth mum – The Look of Horror When I Tell You My Child Has FASD.  The stigma of this diagnosis must be overcome.  We have to break through these walls to help our kids, and to protect those yet to come.


P.S.  This is being posted on Father’s Day.  My sons and I are oh so very lucky to have such a great man in our lives.  I can think of no better way to celebrate Father’s Day than to reaffirm the joys of this (somewhat daunting) journey with a man we all love dearly.  He didn’t get a card, life’s a bit nuts, so here’s to you @FASD_Dad!

 

FASD Parents Don’t Get Sick Days

beingill

by @FASD_Mum

One minute, I was sitting in the GP’s office, waiting for a locum to give me blood test results.  The next thing I knew, I was a human pin cushion, sitting on a plastic bed, contemplating mortality. It’s been a heck of a weekend.  Never fear, the worst has been ruled out (I am not one for cliffhangers). Creating drama is not the point of writing now, from my bed at home.  I just cannot shake the thoughts I had while peeking through a door that too many parents of kids with special needs, including kids with FASD, have looked through.  What happens if mum (or dad or carer) gets sick, maybe even seriously so?

I have encountered an overworked, well-intentioned, bureaucratically inept UK healthcare system that has been minimally efficient but not kind.  I spent 36 hours being led to believe by a team of medical professionals that there was a chance – their idea, not mine – that my world might change irrevocably as a result of the tests they were taking.  They thought there was a chance I had a brain tumor and a tumor in a lymph node.  This was not a knee scrape.  Not once during the 36-hour ordeal, did any medical professional sit with me to explore how I was doing – not as I repeatedly explained when asked by people who did not read the chart about the cancers that killed my mother, the heart problems that killed my dad, the aneurysms that killed my aunt and might have got my mom but didn’t have time, the strokes, the diabetes, the grim genetic heritage I carry.

Every person who took my history looked at me strangely when I could not answer how long I have been feeling run down.  They seemed surprised I couldn’t pinpoint when my symptoms first started.  They asked how long I have been feeling tired and were skeptical when I joked I couldn’t remember a time I did not.  I explained we have some special circumstances.  An 11-year old child with FASD.  A 13-year old son who has been sick on and off for years with Chronic Fatigue Syndrome.  So, no, I haven’t really been paying attention to my own aches and pains.  Maybe I imagined it, but I felt like I could see the boxes ticking in their head, a tired mum, tick, special needs child, tick, probably nothing wrong here.  Except for the symptoms, some of which could not be ‘faked’, some of which I didn’t even know existed, let alone know that I have. Serious symptoms, serious enough to have them stream line me to a bed on a night when no beds were available.  Serious enough to have them wheel men late at night to a different room so they could start a women’s ward right then.

The lovely woman who was eventually moved into the bed across from me has brain cancer, previously had breast cancer.  She told me she is trying to do all she can for her grown up sons and her partner before she faces whatever comes next.  “But at least mine are grown,” she said as the words struck home.  The implication hanging.  It was some really hairy karma that put me in bed across from a walking embodiment of my worst fears, a woman for whom I needed to find comforting and encouraging words. And I did. Or I tried.  I know what brain cancer is, I held my mother’s hand as she died from it, the one cancer that finally claimed the last of her strength.

As they scanned my head I instinctively flashed back to the young, athletic me lying on the beach soaking in the sunshine. Surprising myself at the imagery that came to me, but pleased.  Like bumping unexpectedly into an old dear friend, this other me was there. Reminding me of days long, long ago.  A different me.  A stronger me.  A more optimistic me.  It was comforting and warm.  As the scan clicked over my strapped-down forehead, eyes closed, so many images of sunny days spent on many different beaches flipped by – the beach of my childhood by the sea, the beach of my boardwalk waitressing days, the university lakeside space we called a “beach” on sunny music-filled afternoons, the bright sands and ragged coastline of Cornish holidays, the lounge chairs filled with friends on rooftop pools during my early professional days.  They were all backward-looking images.  I could not for a moment allow myself to think forward.  I could not possibly think of all of my hopes and dreams and unwritten books getting blotted out by overactive cells in an overcrowded brain.

Mostly, I could not think of what a positive result would mean for my family.  Watching re-runs of Downton Abbey on my phone screen, I refused to go through that door in my head. If I had, I don’t think I would have been able to breathe.  I simply could not allow my mind to wander in that direction. I stared out at airplanes landing and taking off, thinking of the places I have been and how no one determining my fate had a clue who I am really.

When it turned out I am not facing imminent death, and after reeling off a string of contradictory and confusing information, the NHS spit me out of their system unceremoniously at 10.15 pm on a Saturday night (I had to remind them in a hallway to remove the cannula). My 36 hours of being brave crumbled, and I pleaded through my frustrated tears. Somewhere out there is a young well-meaning and exhausted junior doctor, whose name not one nurse on the floor could tell me, who bore the brunt of a decade of frustration trying to move this system.

I was begging.  I don’t beg, but I was begging.  Please don’t send me away without answers.  I know how this system works. I have a child with FASD and one with CFS.  I know the months of waiting for an appointment with someone who may not even be with the right specialist, which will then lead to waiting more months.  I know how each person looks only at their little bit of you, through their little prism.  I know how impossible it is for them to wrap their heads around a confusing case.  I know how the system is not proactive, but reactive.  I know because we have two kids with health issues who have each in their way fallen through the cracks.  In one breath she told me if I stayed until Monday I would see a neurologist then but that I had to go home that night as my symptoms were no longer ‘urgent’, and so it would probably take 18 weeks for me to get an appointment with a neurologist.  I told her that is not fair.  I told her the system is broken.  She later came back and said we all know the system has problems but she was tired and she had to go home, she could not find another junior doctor to finish the exam she was trying to do but could not because the equipment was broken, and I should just leave.  I was panicked that for once we had carved out space for me to figure out what is wrong with me, and I knew that if we left that place my needs would be diluted again, this process would drag out, and the demands of my days are so intense I would have no option but to jump back in.

My fears I might fall through the cracks were real, as judged by a phone call at 2 pm the next day from a tired and confused nurse asking me if I had been discharged (apparently they waited several hours to try to figure out why my bed was empty, which is a whole other level of crazy). They had no record of my discharge or follow up, they had not even been briefed verbally by the night shift.  I see the paperwork trail fading.  They will close me out of the system, tick.  Leaving me to swim upstream in a weak state.

When I look at this from a long-term perspective I know I can’t give into the system’s desire for me to just go away without answers.  But the short-term reality is that I must keep on in my daily life.  Our days are demanding as we help our son with FASD navigate the world.  I see the strain lines on my husband’s face.  I see the limitations of relying on friends and family.  Helpful as they are, the strain has been immense on my husband in trying to get through just one weekend without me when under such stress.  I know I am not irreplaceable, I am not that big-headed or vain.  I travel a lot for work, but this weekend was different.  I see what happens when you remove me from the picture if only for 36 hours.  And that scares me more than any potentially aggressive cells might have done.

When I came home at 10.30 pm, our 13-year old brave son was waiting up for me.  He sat by me on the couch.  Being near.  Our welcome-home hug held just that much longer. Our 11-year old son with FASD was spending the second night in a row with his grandmother and aunt, having spent the days with another aunt and her family.  This alone is a very rare occasion, one we usually prepare him for well in advance.  Instead this time it was all last-minute changes and quick planning.  He did well.  When he came home in the morning, his grin at seeing me was the most beautiful smile I have seen in years.  Then he too needed me to sit side by side with him.  He refused to go to his beloved gymnastics, admitting to me the weekend has been “tiring” (his word, a more abstract word than he usually uses, a word that made my heart swell even in my light-headed state).  My husband, showing signs of the weight he has been carrying for a weekend, needed a break.  My boys needed me.  But right then, there really was not much more of me to give.  I need recharging.

Here’s the thing.  Here’s why I am writing this on a blog about FASD.  None of these moments were unaffected by the overarching reality of how FASD has affected our life as a family.  Our son is lovely.  He also has special needs.  We cannot alter his routine without consequences for him and for us.  We really cannot easily ask others to look after him.  He cannot verbalize his fears, so when he heard his mum was in hospital it was like a ticking bomb.  Family who did step in saw a kid who behaved really well for them, and we are proud of him for that and appreciative of what they have done for us. But my husband and I both knew that would not be the whole story.

I read the distress in our little guy’s eyes, beyond that big smile.  I knew this would be a long day.  I saw the fear in his eyes when I told him it was time for gymnastics.  I hugged him and said not to worry, I promised if he went to gymnastics I would be here when he returns.  He didn’t trust that promise.  We did not force him to go.  Instead, with my head pounding, I sat on the floor by him as we googled pictures of mouldy cheese together for a school poetry project.  He needed me physically near.

Those who looked after him for us didn’t see the toys getting thrown down stairs, the hour-long perseverative desperate search for a missing green bandana, the smashing of marble runs, the manic laughter, the tears. The way he needed me to scratch his back. The major meltdown that happened after dinner, the spitting and kicking, the blowout between my husband and I who are frazzled beyond belief. The ringing in my ears, the way I just wanted to curl up with a pillow and rest.

How something as simple as the need to plow through laundry (even with help from my mother-in-law) on a weekend before school starts again after a long holiday caused a whole chain of ‘asks’ that we do not normally ask and stresses at home that tipped us collectively over the edge.  The scene that started with my disregulated son spitting at me, cursing, and knocking the glass of water for his melatonin out of my hand and ended with him sobbing in tears after he saw mummy and daddy yelling.  Then the household-wide aching silence as we all tried to tiptoe around our tiredness and the feeling we have all just gone too far.  The conversation I had to have with our youngest, despite the desire to bury my head under my pillow, saying it’s ok.  Sometimes when he gets frustrated he does things he doesn’t mean and he throws things.  We understand.  Sometimes mum and dad get frustrated too and they yell.  It’s ok.  We’re ok.  I left the room, thinking it’s calm.  Then the smell of sulphur and the realization that our son was striking matches in his bedroom, commandeered from one of the houses where he stayed. And I see he was googling “how to light a match with a lighter” and we realize yet again how serious it is that we keep things calm around here, how even on weekends where mum is sick and in hospital we all must be vigilant, maybe hyper-vigilant at those times.

I know my joking Facebook posts about hospital foods showed a light face.  I know that even still after all this time even close family and friends cannot understand the different behaviors at home, once our son’s game face is released.  I know if we had called any number of people on that post-hospital Sunday when really we (I) needed rest, they would have come.  I truly don’t write this to make those around us feel bad.  I know they would have come.  I write this because I know other families struggle along as we do.  I know there are so many who will “get it.”  Other families who know how very hard it is to ask.  Raising a child with FASD puts added strains on the most stressful times.  Times like these.  When mums and dads get sick, the whole thing can crumble. And of course, that is the fear we all carry in our hearts as we raise these precious and vulnerable kids.  That’s the door we cannot look beyond.  What will happen when we no longer are here?

So, anyway, I am here at home.  Not dying (thankfully) but undiagnosed.  Still feeling like I have been run over by a bus.  Life goes instantly back to “normal.”  The thoughts still swim in my head wondering if this is psychosomatic (though I know it cannot be and now there is medical proof of that).  Still, I wonder, maybe I am making it up, maybe I just need to juggle my stress better, maybe it’s not that bad, maybe I don’t want to go for follow up appointments, maybe there is no point if they aren’t going to tell me anything anyway.  Those thoughts, the difficulty of balancing it all, has my stomach in knots – I was pretty sure of that while staring into the toilet bowl before 8 am on the morning I first came home. That wasn’t any newly caught hospital bug, that was my life.

The pressures on those caring for kids with FASD is immense.  When and if my son reads this on some future day, I want to be clear that I am not blaming him for the added stresses.  He is the last person I blame.  I haven’t googled it, but I would bet that parents of kids with special needs have medical issues that are too often overlooked until they become chronic.  I would bet many marriages don’t weather these stormy days as well as mine can. (And so I will say it now to my husband, I really am deeply sorry for that most recent Scene From Hell. And for whatever one is coming down the line in the near future.)

It can be an uncaring system that we have to navigate.  People defend the NHS, and I do too.  But I don’t excuse it.  Obscene budget cuts have created an institutional failure to thrive.  The people in that system are trying.  Nurses who tell me they don’t drink water during their shifts because they have no time for toilet breaks.  Junior doctors who are talented and well-meaning but who are taking the brunt on the front line of a system that is throwing them to the tigers with equipment that is broken and a lack of resources and options.  Bureaucracy that leaves kids with FASD brain injury waiting years for diagnosis, and once there is diagnosis leaving the families bushwhacking their way through the confusing, disconnected, and few-and-far-between services.  A system that wears down carers to their outer limits, and then regurgitates them too when they need help.

So there we were.  My son and I sat on the steps only 10 hours after my discharge, finishing up his poetry book assignment – one of the most intense homework assignments he has ever accomplished.  It’s really good.  And yes, I scribed for him.  Yes, I prompted him when his brain couldn’t figure out conceptually what was being required.  But the book is full of his thoughts, his quirky humor.  I know that no one else could have coached him through this over the past weeks in the way that I could. We’re a team.

And yes, I helped him mop up the water he threw at me, pushed aside my weariness and rubbed his back as he cried after the most recent meltdown, even as those regretted shouted words between my husband and I hung in the air.  Tiger Mom even in illness, for better or worse.  I am glad I can help our little guy.  I will give all I have to family. Even on days there is little to give.

I just wish sometimes that the government saw past the need to supply far away battlefields and chose instead to give armor and support to those of us fighting the good fights for our kids right here at home.  They have the money. They do.  They just choose to spend it on other things.  I try not to be too political here, but the lack of support for those with special needs and their families is a political choice that does not speak well for a supposedly caring society.  The message is clear: just don’t get sick (especially on weekends).  Soldier on.  Don’t expect us to equip you for this particular battle right here on our doorsteps, inside our homes, in our hospitals.  We’ll spend trillions on “peace and security,” just not for those with special needs or those who are helping them.  Not today anyway. Not fast enough to help our son.  So, we’ll just get on with it.  Because that is our only option.

My heart goes out to all those who have looked through the doors I have faced this weekend.  I share the relief of those who have been able to turn away again, if still unwell, to the daily chaos.  I wish you all strength to find the answers you need to not only go day by day but to feel truly well again.  And for those parents and carers who are through the door – those who have diagnoses and still carry the worries of what will happen to their children – I send you solidarity and share a dream of world with different priorities.  I wish you and  your children true peace and security.  In the meantime, we can only cherish the days we do have. However imperfect, the very fact we are here together is splendid and worthy of celebration.  I know from my parents’ illnesses, and I know from looking into the eyes of those brave people I just saw in the hospital beds and chairs, no matter how bad it is, we have it in us to fight for tomorrow.

Homework is evil

We love a child with #FASD-2

By @FASD_Mum

We spent the better part of half-term calming down our child, chasing around his moods, finding ways to chill him out, de-stress, and reconnect with his happier self.  As he hits his pre-teen years, we are still struggling to find our footing with a new (or more apparent) set of challenges related to his Fetal Alcohol Syndrome.  During this break we also were trying out a new medication regime (meaning, we are seeing if we can take him off 24-hour meds and give his poor strung-out body a break).  But we are not at all convinced the chemical roller-coaster of medication in 4 hour spurts is good for him (since he cannot yet understand it) or good for us (since we too ride this roller coaster with him).

But we managed, even if we did not succeed in keeping him off the meds for the entire holiday as we had hoped.  He even had some moments of joy, including an afternoon spent walking down country lanes with a sweet family who invited him over for a few hours.  He walked two inches taller that day with his friends, feeling independent, valued, and also grown up as he played so well with a 15-month old.

We breathed a collective sigh of relief when he went back to school Monday morning, relatively optimistic (meaning, we at least managed to get him into his uniform on time) and presumably ready (meaning we had cleaned out his backpack and pockets for all illicit candy and extra change and old drinks bottles, his jacket was recently washed, shoes looking relatively spiffy, etc.). He was fortified and ready for this next half term.

Or so we thought.

By about 8.30 am we were quickly notified we had screwed up and failed to attack homework projects that were supposed to be done over the holiday.  Threat of a detention was now hanging over his head 15 minutes into the new half-term.

To be honest, we were so busy surviving over the half-term, we didn’t think to look.  The school’s state-of-the-art homework app has somehow reset itself on my phone and, no, I have not yet figured out where I wrote down the PIN.  We had arrived at a deal with the school last half-term that since homework was such a battle at home, they would seek to do it with him during the morning clubs, homework clubs and extra time they have in his schedule for one-on-one time.  We are supposed to do an online reading program at home, but before break they said they are revisiting whether or not that might be too easy for him.  We simply did not realize there was a bigger project due and they had not flagged it for us in the crazy days prior to the break.

Fast forward to home time after school on this first day back when, to avoid the detention, we were supposed to do the project.

Not. A. Chance.

It’s hard to describe how gripping this can be when our son’s more primal defensiveness gets stirred up.  This child was not going to sit down and do this homework.  Not then, not that night, and as I have just discovered, not this morning.  There is no room when his brain gets this stressed out for creativity, for problem-solving, for negotiating. When this defensiveness kicks in, it is a full out battle royal in which he is fighting with every fiber of his being to defend himself.  Imagine the ferocity of the terrible twos on steroids.  He is standing up for that which he cannot fully explain, so it becomes a whole body vehemence, an insistence that his will must be heard.

We have been through a very difficult 12 hours as a result of the homework-that-is-not-done.  (I have learned that it is not enough for me to say ‘difficult.’  What I mean is that things have been so rough that my husband and I have alternatively been behind the closed kitchen door, heads hung low in defeat, tears in our eyes.  I mean it’s been some of the hardest days of parenting, and we have been having too many days like this recently.)

I cannot imagine any educator would think this one model was worth the screaming, throwing, breaking, kicking, shouting, poking-himself-in-the-eyes chaos we have just unleashed in our efforts to avoid the detention he says he doesn’t care if he gets.

At root of all of this, I think he a) feels defensive/inadequate/confused, and b) doesn’t understand the assignment.  The idea is to make a model of a Burgess model of city design – it’s an abstract concept of how cities are designed from their inner central business district, to an industrial ring, then lower-income, medium-income housing and surrounded by more green space.  Either his brain cannot handle the abstract concepts of it or he knows something about this assignment that I am not doing right and he cannot explain it to me.  There was mention of Play-Doh, though we had a giant escalation when I brought out the dough.  Instead I chopped up a shoe box, helped cut out concentric circles and mock-ups of various buildings, and was ready for him to help label things.

Not. A. Chance.

We kept the dog safe and scissors tucked away in case they were added to the very many things sailing across the room.  My husband and I were bewildered, pre-caffeinated, and not at our best.

Sure, there are some out there reading this who will know we should have prioritized calming him down.  We did.  Or we tried.  We tried foot rubs, quiet time in the bedroom, time sitting together on the couch watching the umpteenth rerun of Total Wipeout. Last night before bed, we had some lovely head-on-my-shoulder cuddles in the semi-dark.  It was all fine and dandy, until The Homework reared its ugly head. Again and again.

Finally, this morning, we decided to put it away and not do it. We agreed to send in a note to the school.  Fifteen minutes later, our son said quietly, “Fine, I will do the homework.”  Foolishly, I became optimistic and cheery.  He came to the table, scrawled one label on the model, I asked him to write more neatly, and zoom, we were off again, worse than before.

“I hate gold awards anyway!” our son shouted at one point.  He must have seen some of his classmates’ models.  He must know what I was trying to get done in the short space and with his limited patience/attention span was not right, not good enough.  Yet again, I feel sadly like we have set him up for failure.

Interwoven in all of this was a fixation about how he needed to ‘style his hair’ – something he has been saying since he came home from school yesterday.  We don’t know if this was due to comments from friends yesterday or if it is regression because he found other things hard.  But that was his primary focus over night.  He needs a haircut, yes, but there is no ‘styling’ that can physically be done to this hair now at this length, at least not with my meagre skills in this area.  An answer of course that did not meet with a gentle reaction.  (This is not a diversion but a continuation of an old/ongoing story.  One of these days I must write a piece that focuses solely on the major impact that hair, wigs, hairstyles, bandanas, scarves and hairbands have had on our world, a fixation that has revived itself since he came off the 24-hour medications, probably due to sensory needs.)

So, where are we?  Wiped out, drained, defeated, scared.  My husband took him to the tow path by the river for a scooter ride to hopefully get out some of this negative energy before school.  We are ready to up the level of meds now to 8 hours a day, though we are worried that this violent reaction may be a growing side effect yet again to yet another stimulant medication.  We are worried that we cannot keep up with this escalating distress.  We are worried that our professional lives are suffering as a result of this disequilibrium at home.  We are concerned that it took 45 minutes to convince our son to get dressed for school, to repeated and heartfelt screams of “I hate school!”  No parent wants to force their kid to do something that so clearly is disturbing him.  I have just heard from my husband that today was by far the most extreme behavior en route to school, complete with kicking, spitting, hitting, and verbal distress, though he finally settled down to finish the model with the assistant at school when he saw some of his friends touching up their models.  So, hopefully, detention at least has been avoided.

The hardest part of days like today and yesterday is when they hit you when you least expect it.  This time, the trigger was a homework assignment.  It is squarely our fault that we did not catch this, that the communication with the school fell through on this one, that we pushed on with trying to do it despite knowing he would have an escalating reaction.  His brain injury makes it impossible for him to track due dates and to remember such things reliably.

But seriously, homework for a kid who uses every ounce of his being just to survive a school day?  It certainly is not educational.  It feels destructive and counterproductive.  There are not enough hours in his day to decompress.  Our work at home should be focused on reinforcing his ability to walk through those school doors in a positive frame of mind, fortified and ready for the day.  For our son, that task is more important than any model made of clay or old shoeboxes.  That self ease is what will allow him to succeed academically since for him to learn he must be relaxed.

I used to love homework.  I would stay up until midnight, overachieving and stretching my mind.  I never thought I would say this, but I have learned that homework has a Dark Side for some kids. It’s not helping, that’s for sure.

 

 

A Working Mum Looking In From Afar

workingmum

By @FASD_Mum

Parenting a child with Fetal Alcohol Syndrome is a full-on, full-time labour of love.  Watching this bright spark-of-a-being spring into each day with enthusiasm and good will is one of the best parts of my life.  From that first bounding wake-up and then for every moment he is in my orbit I am on full alert.  Or at least I should be.  I try.  We know that the injury to his brain means he can easily become overwhelmed and defensive.  The slippery slide into a massive meltdown is hard to spot sometimes before you are halfway there and clawing to get back to firm ground.  Parenting a child with an FASD is constant and intense.  It’s hard to understand how it is that people don’t get that.  It’s difficult to  imagine why people don’t understand and why they  underestimate what I mean when I say “it’s been a tough day today.”  Sure, when he is at school, or with friends or family, I do my work, the housework, or sit stunned for a while, just being still.  But even then, there is a part of my mind focused on planning for his return, creating in my head ways to try to prepare for a smooth re-entry, a peaceful bedtime, a gentle night.  The wheels keep turning, constantly.  The constant pressure can drain the energy out of anyone.

But I get these weird pauses.  There are times when my work takes me away, as in several-time-zones away.  I am removed so thoroughly and completely from those immediate pressures (and often thrown into work situations that demand my full attention) that it also is a bit mind numbing.  Because of this complete disconnect, I juggle more of the maternal guilt than I ever thought possible.  Understanding now the way that we do that our son won’t just grow out of his sensory difficulties has changed things.  I feel these work trips more.  Understanding now as we do that he has a physical disability as real as but less obvious as if he were missing a limb or his hearing or were blind.  He has medical condition as much in need of constant monitoring and support as diabetes, or some other condition that needs consistent regulation and monitoring.  He needs us to be reliably there to support him.

I know my being away affects whatever balance we have been able to attain in our house.  I come home and I see the effects of my absence everywhere – and not just in the wrong size socks having been put away in the wrong child’s room or some liquid cucumber remains in the fridge that has become a joke among our friends.  I feel the impact almost physically.  I see the strain on their faces for a few days after my return.  I absorb the intensity of our son’s inevitable outburst directed at me after I am home for a day or two.  He would never be able to figure out the root cause of his frustration, but it is a pattern I have come to expect.  For a child who needs routine, having mummy jet away on an unpredictable basis is not easy.  When I asked one professional if this is hurting our son, he said, “There are lots of ‘normal’ and in your house, it’s ‘normal’ for mummy to travel.”  (Daddy also travels, but less so.  When we are in peak season our eldest calls it ‘tag parenting.’)  I know some will think this isn’t the right choice for a mum of a special needs kid to not only have a job, but to have one that requires lots of trips.  Maybe sometimes I even agree.  But we all have bills, and my career has developed in this direction, and my work is a part of my way of giving back.  I think my kids understand the importance my husband and I place on being contributing members of our society.  Our work with Non-Governmental Organisations (NGOs) allows us to do that.  And really, the situation just is what it is.

I’m sitting right now, six time zones away, reading via email and Facebook about the good and the bad moments that have been happening since I have been away this trip.  I can tell my husband is doing a stellar job, and I can feel that things are basically okay – the real tiredness of the pressures of single parenting hasn’t fully kicked in yet.  I know it will.  (I will say it again, hats off to all of those single parents out there, I truly admire what you are able to do).

Sitting here, reading my husband’s messages, it suddenly hit me.  THIS is what it’s like for people, even those close to us, when they look into our daily world.  I may be a few thousand miles away, but even for those just across town, this is what they see, the headlines.  Oblique references.  “Today is a bit harder.”  “He had one bad burst of anger when I wouldn’t let him have sweets.” Etc.  I know what those words mean, if I allow myself to deconstruct those phrases.  But I don’t really want to think too hard about what might have happened when he was denied sweets early in the morning – the tossed shoes, shouting, possible kicking, screaming, throwing.  I am helpless from here to help.  That moment has passed anyway.  I assume it’s calm again.  So I look away, go back to other emails, pack it away somewhere in my head, trust that they all will survive until I come home.  Trust that my husband is telling the truth, and hope he would be more direct if there were a problem.

This must be how it is for others looking in. They know it’s happening.  They understand it can get bad, but they don’t see how to help the situation.   And because some of it can be fleeting, they probably think it’s over now, so it’s all okay.   Unless we open the window a little wider, give a little more detail, ask some specific ‘asks’, they won’t really know how to interpret, and certainly won’t know how to act upon, what it is we are saying.

I understand my husband is carefully planning this day.  It looks like it’s all under control, well-thought out.  And yet, reading between those lines, I know that he probably just wants 45 minutes to have a bath, but he won’t ask anyone to come have a cup of coffee at the house and play a game with our son while he has that bath.  It sounds trivial, but we all need to recharge.  I think recharging is one of the most important things we parents of kids with an FASD need.  It’s one of the easiest things others can help with – those hours here and there can make or break us.  If someone just brings our son to the park or out for hot chocolate, it gives us the space to catch up with ourselves, to re-center, or just to zone out a little, to give our radars a rest.

I know my parental guilt is not unique, and I know I would feel it even if I were in our own county.  We all feel a little guilty for all kinds of reasons every time we leave our special needs child with someone else.  We feel that moment of release of responsibility, but then we also feel that no one else fully understands our child.  We worry that a missed signal might lead to a spiral.  We wonder if others will be as concerned about the food texture, how scratchy that tag is on the shirt, how today he just needs a little extra compassion because he couldn’t fall asleep yet again last night.

I am not special as a mum who travels for work.  All of us feel these tugs on our heartstrings as we let our loved ones venture out from under our wings.  But maybe the one insight I get when I am working is to understand how hard it must be for others on the outside looking in to take that step into our sometimes hectic and unpredictable lives.  I see how different it is to be standing outside the fray, looking in, and wondering whether and how to get inside to help.

P.S. – My husband just read this, and said I shouldn’t worry.  He had a quick bath after all, and is looking forward to a long soak once our son is back at school.