The Same Child Shines When Seen Through a Different Prism

 

Blog_DifferentPrismBy SB_FASD

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

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

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

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

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

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

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

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

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

THIS IS THE SAME CHILD.

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

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

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

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

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

Remembering that makes it all a bit easier.

At least, it should.

I’m trying.

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

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

 

When a School Rocks

SchoolRocksBy SB_FASD

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

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

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

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

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

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

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

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

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

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

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

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

Those words hold power.

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

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

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

That is what this school is teaching.

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

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

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

This school rocks.

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

Finally!

Blog_WhenOthersGetIt
By SB_FASD

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

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

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

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

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

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

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

I felt this veil lifting.

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

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

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

They were talking about our son.

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

They see him!

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

Toto, we’re not in Kansas anymore.

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

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

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

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

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

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

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

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

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

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

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

Defeat is the Enemy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He’s Too Special to Let Fail

we-love-a-child-with-fasd-3By @FASD_Mum

Special.  This one word has been swimming in my mind lately – in and out of focus, but always there.  Sometimes when it surfaces, my heart jumps with optimism.  Other times it makes me stop in fear. “Special” can mean different things in different contexts.

Our guy is suffering in mainstream secondary school this year.  No, he is not having the horrible kind of exclusion and belittling, uncaring experiences too many kids with FASD have at schools that don’t cooperate or engage with kids who have complex profiles.  On the contrary, our son has very able and willing teams of people trying their best to integrate him into mainstream education.  This is after all the law.

And yet, his chances of success have been crushed by massive far-reaching radical changes in national policy.  Here in the UK changes to national standardized tests – called GCSEs – are making it impossible for wide swathes of kids to succeed in school.  Now all students whether they are going to Oxford or seeking a manual vocation will have to take the same tests (previously there were other tests for those kids who struggle more).  Revamped content makes these GCSEs even more difficult and the policies now require that if a child fails the math or English GCSEs, he or she will have to re-sit the test time and again until they pass.

In US terms, this is kind of like requiring all kids to take the SATs, whether they are going to university or not, and forcing them to take it again and again until they get a certain score. We were told that in our son’s school there is deep, deep concern that he and others like him will not be able to pass these tests.  So, we are looking at years and years of dragging him off to school to sit in classrooms where none of his teachers really expect him to pass tests that are the focal point of all that is being taught – years and years of setting him up to fail.  Seriously?

He is already drowning on stress.  We are well aware of the statistics that show how kids with FASD brain injury are very susceptible to secondary disabilities – mental health issues, addictions, high rates of suicide, risky behaviors, incarceration, etc.  There is no way we want to put too much pressure on him in these years.  We can’t envision deliberately setting him up for failure.  What kind of sick system does that to vulnerable kids?

At the very time he needs more creative teaching to engage him, classroom teachers are becoming increasingly limited in what they can do.  One leading specialist asked us, “Your son may have a t-shirt that says on the front, ‘I was included’ – but will it say on the back ‘I was educated’?”  He said kids with FASD can learn, but the education has to wrap around them.  He said too often kids with FASD sit at the back of the room and watch others get educated.

That conversation struck home.  It went straight to my momma bear heart.  It rang too true.  We don’t want that for our guy.  The major complaint we hear from our son about school is that it is “boring.”  The way the classes are running, he is not able to access the information and it is getting worse as the teachers are feeling more pressures to teach to this changed regime.  Despite lots of suggestions from the professionals that have been engaged to advise the school on how to meet our son’s needs, on any given day in any given class it is too hit-or-miss as to whether or not all the strategies are being used by harried teachers to support his learning – teachers who themselves have had only limited education on how to teach kids with learning disabilities.

So – we have decided.  He will go to a special needs school.  We are still digesting the word “special.”  Still coming to terms with the missed opportunities and dreams that won’t pan out in a mainstream setting.  We are having to re-jig the way we view our son’s next steps.  We are, if I am honest, mourning a little.  We are mourning for loss of our dreams – the dream of inclusiveness, the dream that if we try hard enough we can carve out a space for him among his peers, the belief that society really does want to be inclusive.

Despite heaps of goodwill from the leaders of the school he is in, and despite every effort on our part, we have decided in this new educational environment our son does not stand a chance in mainstream school.  He is one of those kids in the gray area.  Some students need a different environment to be able to access education at any level and it is good that appropriate separate provision is available.  Our son is in a kind of no-man’s land.  Supported, his test scores are probably too high for a special needs school.  Unsupported, he fits.

Growing up in the USA, with its imperfections but lofty principles, every ounce of my being is conditioned against segregation.   But here we are.  Because of his disability we have started the process of segregating our son.

People react badly when I use that word – segregation.  But it is what we are talking about. We have spent a decade in our hometown working hard in many ways, on many levels, to carve a space for our son into this town.  We have been motivated by the conviction that “it takes a village” to raise a child.  It has been a consciously forward-looking strategy.  We know our son will always need those around him to understand and support him.  Someday we won’t be here, and we want those others in the town to know him and understand him.  We give to our community in hopes our community will give back to our family too.  That’s how a caring society functions.

Not one teacher, not one administrator, not one politician, not one educational or medical professional can ever have tried harder than my son to make this work.  Most of them have never come close to trying to understand his dreams and his hopes, to see just how truly special he is – in the proper sense of the word.  This boy is amazing.  I am an in awe of all that he is and all that he accomplishes despite having a brain with scrambled neural connections that make every single day of his life a struggle.

We need more compassion in this world.  We need more reassurance.  We need more people willing to take time out to just see the others in the room with them.  I hate the idea that because some bureaucrats in Whitehall have issued their decrees about standardized tests that in reality means our son now has to go behind a wall.  That he has to be segregated in order to have a chance at a happy adolescence, a chance to be able to have some ‘wins’ along the way.  I cannot believe the choices come down to this – planned failure or segregation.

It is not the kind of society I want.  But our son is not going to be a casualty in this nastier and harsher school environment.  He has been the canary in the coal mine too long.  The System has nearly sucked all the oxygen out of his fragile self-confidence.  We can’t let his spirit suffocate.

So, we will take him away from all that he knows, all those children he has grown up with for the past decade, his brother, his cousins.  We will entrust his creativity and his desire to learn and grow to another set of educators, with different skills, in a more flexible environment.

After days of pacing, wrestling with knots in our stomachs, feeling a deep, deep sadness, we toured local special needs schools.  There is one that looks amazing – should he get in we would be quite happy to do all we can do to help him flourish there.  But we know that even there our son may encounter a new set of challenges as he tries to interact with kids who have deeper communication difficulties than he does.  There is no guarantee moving him from mainstream school will be a success, and we are well aware there will be no going back.

However, this other school may allow him to be a leader.  For the first time ever, he may be a kid who is more capable than most of his peers.  It might be fantastic for him to be able to relax more and to explore his strengths in a more tailored setting, to learn the way he learns best, through music, dance, tactile experience, rather than drowning in a barrage of words in large classes in an overstimulating setting.  Maybe this other school can help set him up better for the next steps he will make.  We have started to allow ourselves to feel hopeful.  Maybe, just maybe this might be exactly what he needs.  That said, we are wary.  Time will tell if this is the right decision or not.

So, yes, we are moving our son to another setting.  Your kids won’t have to see him day to day.  You won’t have to explain to them why he is a bit different.  You won’t have to imagine your kids sitting at a table with him and wonder if that is helping or hurting your kids’ education or skewing the school’s ranking based on test scores.  You won’t have to tell me how your kid finds my son “irritating.”

But dear society, believe me, just because you are pushing him away, you have not seen the last of him.  He will continue to show you just how truly special he is.  Watch this space.  He is of this village and always will be.  We will find ways, create ways if need be, to keep him integrated.  We know there are many good and close friends in this community who will make extra efforts to stay a part of his life.

Shame on us all that it has come to this.  And for what?  Some misguided belief that reverting to the exam system of half a century ago is the answer to today’s challenges?

Yes, you bet I am sad.  But, don’t worry, I will rally.  We will be positive when the time comes for the switch to a new school.  We won’t look back.  One thing we have learned about FASD is that it is always possible to hit the ‘re-set’ button.  Our lovely, talented son has taught us about the great and inspiring power of fresh, new days.
 

FASD Awareness is Needed in Classrooms Every Day

we-love-a-child-with-fasdBy @FASD_Dad

This morning was good. Our son woke happier than he has for several days. He ate some breakfast and watched some Tom and Jerry. When the time came he was happy to get dressed. And after ten more minutes of videos – when he searched for and found clips from Titanic which his English class is studying – he put his shoes on, picked up and his bag and hurried out the door. School mornings are rarely this easy for him or us.

Since today is Foetal Alcohol Spectrum Disorder Awareness Day, it’s worth reflecting on the week we’ve had as school started again. Our son’s full Foetal Alcohol Syndrome has made it a very difficult few days, and it all happened because of a detention that should never have been and a teacher who hasn’t read, or at least hasn’t understood, information about FASD and our son despite the best efforts of the school SEN team.

Our son went back to school on Monday. He goes to a mainstream secondary school, he’s now in Year 8. He gets a lot of support from the SEN team and many of the teachers are excellent, differentiating his work and making a real effort to adapt their lessons to his needs. His FASD means he is a very visual learner, with pictures and videos a key part of the education process for him. Using computers, tablets and other technology also make it easier for him to access subject matter. But even so, he struggles with maths or abstract concepts.

The route back to school wasn’t easy. As the Autumn term approached our son became more nervous – worried about his timetable, who his teachers would be, where his locker would be and every little detail that was outside his control. He became easily dysregulated, and it was hard for us to keep family life on track in the days running up to last Monday.

And then it happened.

In the second period of the new school year, an English teacher gave half the class detention for not completing homework on the book Holes over the Summer. Including our son. And his world fell apart.

He’s afraid of detention, even the possibility of being given one increases his nervousness of school tenfold. Coming so early on his first day back, this was a hammer blow.

The class had been studying Holes in the Summer term. This is not the first time this teacher has taught our son.  He struggles with novels at the best of times. Reading long chunks of text is extremely hard for him. He finds it very, very difficult to concentrate, he loses the thread of a story easily. This book was doubly difficult. He didn’t like the story about children being randomly punished by being forced to dig holes. When it came to the back and forth in time sections of the novel, forget it. He just didn’t get it.

He’s so keen to do the right thing he even tried to do the homework over the Summer, despite having found the book almost impossible to understand last school year. One task last term was to do a newspaper article on the significance of a bi-racial kiss in early 1900s America. Forget it. He simply didn’t understand what was being asked of him. The levels of abstraction were such that his damaged brain could not get there.

Knowing his difficulties, the SEN team has worked for a differentiated set of work for our son. The teachers are supposed to respect this. He wasn’t even supposed to do this homework, let alone be punished for not doing it. He fell apart in tears in the class as the teacher berated half the class for not doing the work.

And the consequences of not respecting his need to access work in a way he can understand, of failing to respect his right to be educated in an appropriate way?

On Monday evening he had a meltdown. A big one. Things flew, swearwords too. It wasn’t a happy evening.

On Tuesday morning he refused school, terrified of another detention. He screamed, he sobbed, he hid in his bedroom. We eventually got him calm enough to get to school by 11.30. But that evening, his world fell apart. He had a meltdown like no other. His levels of anxiety reached a peak in a crescendo of wailing and sobbing that wracked his body. Cut off behind an invisible barrier, he was broken by experience. This built up and then flooded out of him over hours until finally, exhausted he slept.

On Wednesday morning as anxious as ever he refused school again. We were able to get him there by allowing him to go out of uniform to speak to the SENCO. He did stay, but not happily. In the evening he couldn’t manage guitar lesson, although music is his biggest love and this was something he had begged to do. Dysregulated and ready for meltdown, as it was a hot day we let him go to the pool instead.

On Thursday school refusal again, and again he went out of uniform and only because he could follow me as I rode his scooter until he was ready to hop on, and only into the learning support room until he was calm enough to join his classmates for the day.

And today. Today it’s all forgotten. Titanic is filling his imagination and I left him with his TA drawing a picture of a First Class passenger on the ship as they got ready for the day.

But the week has been lost. Our son has been torn apart for days by anxiety that should never have been forced upon him. A busy teacher with insufficient training in dealing with special needs hasn’t taken the time to understand our son, and has done him damage. How much we won’t know for a while, but possibly a lot. Enough this week for us to think hard again about local SEN schools and for a family counsellor to rush an appointment with their service’s other professionals, so worried was he about our son’s anxiety.

It is government policy to mainstream kids with special educational needs where possible. They don’t provide the resources or the training for that, but that’s the policy. We are legally obliged to send our son to school. They’re legally obliged to educate him. They have to meet his needs.

The SEN team does a superb job. They really work with him. They bring in outside experts to get advice and support. They provide the tools he needs to get through the day. Having never knowingly worked with a kid with FASD before, they educate themselves about his condition generally, and the work to understand him in particular. So do many of his teachers. His geography teacher last year said he shows ‘signs of brilliance’, and he did that in her class because she looked at him and saw him and understood him, and provided work for him that he could do because it was in a form he could understand.

But some don’t. Some are just too busy with the stresses and strains of modern teaching. The lack of resources, the huge amount of reporting of data, the strains of an ever changing curriculum, the lack of training on SEN teaching all take a toll on their willingness and ability to teach our son in the way he needs to be taught.

That’s why FASD Awareness Day is so important. As many as 5% of people may be somewhere on that spectrum, most undiagnosed. Awareness is vital, in the first place, for prevention. No-one needs to go through life with this preventable disability. In the second place, it’s vital as the brain damage of FASD means that our son and everyone with the condition needs life-long support to deal with the stresses and strains of everyday life. For our son, this means his teachers need to know about and really get what FASD means. How they have to do their job differently to accommodate special needs that aren’t his fault. Being aware of FASD means being able to give a kid who’s struggling the tools he needs to get through the day when even walking through a crowded corridor from one lesson to the next is traumatic. Be aware.


Please see the education resources page ideas on how to help a person with FASD in the classroom.

The Coming Summer Holidays Cause Anxiety For Our Son With FASD

We love a child with #FASD-7By @FASD_Mum

“Mummy, I can’t stop my body.”

In that gutted pause that comes after a loss of control, our 11-year old son found the words to tell me his truth.

“It doesn’t work right.  I want a potion to give me superpowers.”

This was after I prised from him the tablet clutched to his chest and saw that the screen was shattered.  He had pounded it in frustration because he could not make the volume go loud enough.  Instantly remorseful, he had been sitting there in dread, trying to problem-solve.  “There’s a place on the High Street with a sign that says ‘tablet repairs’ Mummy. They can fix it.”

We have educated ourselves enough about FASD to know yelling and punishment are the last things that would help him in this moment to learn the lessons he still needs to learn.  I was tired, defeated, but my child needed the best of me.  “I know it’s hard for you when you are frustrated.  It won’t always be like this.  When you get a bit older you will be better at controlling your frustration. I love you.”

Trying to think of ways to get to ‘yes’ before this spiraled into a full meltdown:  “You are frustrated aren’t you?”  Nods.  I moved the tablet out of arms reach, lest it become a projectile.  “It’s been hard lately, hasn’t it?”  More nods.  We moved to the couch.  He was curled up into himself, while wanting me to scratch his legs, rub his feet.

“You’ve been sad lately, haven’t you?”  That’s when the tear appeared in the corner of his eye.  The tear that made me choke back my own sadness. These silent tears are rare and heart-wrenching.  They speak volumes more than the more common full-on screaming tirades.  This poor child is trying so hard.  The end of the school year is too much for our son.  July has never been a good time in our house.

Every bake sale, non-uniform day, sponsored walk, community outreach activity…every special assembly, film day, school fete, disco and concert triggers anxiety over the uncertainty of expectations and timing.  For our son, it leads to strings of negative or oppositional instincts that can leave us all bewildered, shell-shocked, and trying to figure out how to reapply doors to hinges, literally.

For all the positive “you’ve tried hards” there is no sugar-coating the reality that end-of-year reports lead to disappointment and confusion.  A little more air escapes from his balloon just as he is trying to wrap his head around the fact that he will have new teachers and new subjects in the autumn.

In every conceivable way that he can, he has told us over and over again in recent weeks that he is on overload.  He has refused to go to school, to beloved extra-curricular events.  He tells us he is tired, his tummy hurts.  He is having digestive problems.  He tells us again and again he just wants to stay home.  He regresses.   He gets caught in the loop of perseverative behaviours – playing for hours with water in our garden, sneaking all the baking soda and baking powder and whisks to make potions – until something throws him over the edge into a meltdown.  If we try to redirect, he melts down sooner.  He wants to have independence, to determine what he does.  But it almost always ends with something that didn’t go just as he wanted it to.  And then we have blast off.

So we chat with the doctor.  We discuss re-jigging medicines again.  Brainstorm about possible other referrals.  The team around this child are growing concerned.  We can see it in their eyes.  We know they are looking at us with deepening worry.  Our veneer is scratched and frayed.  We can’t even pretend any longer.  We all know puberty is crashing down our our not-so-little guy.  We need to deal with his anxieties, give him the skills to be able to withstand these many pressures he feels.  We need to find ways to buoy him up when he feels like he is getting smashed by wave after wave of intimidating situations.

A psychiatric referral.  Tests to see if he has some sort of infection, to see if he needs growth hormone since he has gained no weight in more than six months while finally growing a bit taller.  X-rays scheduled to see if there is anything we can do to make the thumb on his right hand work (FASD affects more than the brain, he also has some fused vertebrae).

Each new step forward requires even more logistical juggling.  It’s welcome, but it’s more, always more, pressing down on us all.  I vented to my husband, maybe cruelly in the middle of a moment, “Prepare yourself.  It’s going to get worse, a hundred times worse before this gets better.”  The look in his eyes made me think I had slapped him.  But the reality is, I don’t think that’s an exaggeration.  We somehow have got to get through these teenage years with our son’s self-esteem intact.  And it is going to be hard.  Hard for him.  Hard for us.  Hard for his brother.  Hard for those around us, watching, wanting to help but not knowing how.

Our son most certainly does not have a carefree childhood, if that even exists anymore.  For him, this summer will not be the end-of-year locker-slamming, running-toward-the-freedom release I once knew.  For him it is a time of anxiety and uncertainty: unstructured time is no gift to our youngest.

And of course, in our recent daily survival mode, we haven’t fully sorted the coming holiday.  So we add another thing to list that we beat ourselves up about.  Deer in headlights, we see the summer holiday bearing down on us and make frantic calls for summer camps, urgently fill out forms to register him with various special needs databases and not unsurprisingly find out way too late about deadlines missed.  More emails.  More calls.  Clutching at straws.  We find one day-camp that looks great, they even have a Special Needs Coordinator.  We gently raise the idea with him.  He didn’t say no.  We wonder if we are going to lose a lot of money if we sign him up and he then refuses to go.

And the cherry on the top?  The last day of school coincides with his birthday, which is an event to him on par with or exceeding Christmas. The disappointment will come when he does not get everything he has requested for months on end. (The list would bankrupt Richard Branson). This year we are going to use the day to satisfy his sensory curiosity.  We are going to have a ‘no-manners dinner’ – an idea stolen from my niece.  We are going to have an “eat it or wear it” challenge per his instructions.  We are going to try to make it messy and memorable and pray it is as fun as he thinks it will be – but we dread it, are prepared for it to all crash down.  We have learned with this son that we cannot be rainmakers.  No matter how delicious the food I cook, and how many times he has liked it before, I am always ready for the instantaneous rejection that I try ever so hard to not take personally.  Birthdays, holidays, we are always on-guard.  We know for him the mundane is the true gift.  Which doesn’t mean he doesn’t want more.  Much, much more.

“Mummy, I don’t want to be 12.  I want to be 10.”

This is a child who sees things changing, who feels the differences more the older he becomes.  We can’t change what will be.  All we can do is shower him with our love – unconditional even-when-you-break-electronics love.

So here we go, the last week of school before the break.  Of course England has decided to hit the upper 30s (90s in Fahrenheit) this week, making the school an oven and adding yet more sensory challenges.  After we spent 30+ minutes coaxing him and gently trying to ease him out the door despite his refusal, and successfully avoid a meltdown, we work out a deal where his TA will help him plan the shopping list for the no-manners dinner.  We gird ourselves for the ups and downs of this week, the week we know we will look back on with envy once we get into the heart of this coming summer madness.

Even if it is not the best-timed birthday, he does after all need a new tablet.  The new one will have a rugged cover and a free replacement warranty.  We do learn.  Slowly.  By the time he is grown up, we may just have figured things out.

 

Thank You Teachers! But Did You Really Understand Me & My FASD?

Dear Teacher -

By @FASD_Mum and @FASD_Dad

Dear Teachers,

Well, here we are.  We have survived this year together.  We didn’t know at the beginning how this was going to work.  You have never taught a child with a diagnosis like mine – Fetal Alcohol Syndrome and ADHD.  Which of course doesn’t mean you have not had students like me in your class.  Statistically Fetal Alcohol Spectrum Disorders are as prevalent as autism.  But that is a whole ‘nother story, as they say.

An entire year has gone by since we started this adventure.  I have turned up nearly every single day.  I have walked the crowded halls to the sound of bells that make my head split.  I have navigated the maze of my schedule – with more than 18 classrooms and teachers.  I have braved noisy lunchrooms with their smelly foods and intimidating social circles.  I have put my hand up time and time again in your class.  I have smiled when you have said hello.  I have tried to find the answers you were seeking.  I have worn my school blazer with pride.  I have trained myself to try to sit in chairs several sizes too big for me.  I have carried my backpack through each and every day.

Some mornings, I was so anxious about school that I refused to get dressed.  I became so agitated I screamed and threw things.  I couldn’t find the words to tell my parents how confused I was by the tests, how upset I was by that detentions, how bewildering I found it because I didn’t understand what you were saying. How sad it makes me that I don’t get to hang out with my friends after school like the other kids do.

I have brain damage that happened before I even drew a breath because alcohol crossed the placenta when I was in my birth mother’s womb.  My neural networks were damaged.  The different parts of my brain have trouble communicating.  I have trouble accessing memories.  Abstract thoughts and concepts are really hard for me as my executive functions are compromised.  My brain processes things more slowly – quite often I may only be hearing every third word you say.  If you put two instructions in one sentence, I will likely fail to hear both. If I don’t see things, touch things, absorb what you are telling me in some other way I may miss your main points.  I know I am not understanding things in the same ways the other kids do, that’s why I get confused and despondent.  I have an aide who helps me.  She is a great support for me.  But she doesn’t know the subjects the way you do.  I am supposed to be in the front of the room by you.  I am supposed to have one on one with you too.  Some of you do this.  Some of you don’t.  I get it that every teacher has their own stresses and demands.  I know there are hundreds of students that depend on you.  But right now, this note is about me.

I received my end of year assessment, but my Mum and Dad won’t let me read it.  Mum nearly cried when she read it.  Which is too bad, since there is so much in there to celebrate.  They want me to see all the positive comments.  Some of you wrote I have “worked well.”  I am “enthusiastic” and “confident.”  I have had “lessons of absolute brilliance” (Mum and Dad say thank you for that one, that also made Mum cry in a different way).  I have been “superb” in some lessons.  I am “gaining confidence” and I have “really enjoyed some topics.”  “With significant support” I have “created successful outcomes in a range of areas.”  For a kid who sometimes cannot face going out the door, these comments show how hard I try and how I can succeed when I get to school.  My parents know this was possible due to hard work by teachers and especially the special needs team who are the heroes of my story.  None of this happens by accident. We all feel very, very lucky and privileged to have so many great people helping me access mainstream education.

But then there are the buts.  And that is why Mum and Dad won’t let me see the paper.  Not all of you, but most of you have included comments like he “does not appear to be able to remain focused for more than five minutes” and “he needs constant support on a one to one basis to keep him focused” and “he needs to be constantly reminded to stay on task.”  Several of you have noted that when I lose focus it can lead to “disruptive behaviour” and at times my behaviour has been “inappropriate” and that I “need to understand this.”  My behaviour can be “silly and distracting to other students at times.” You tell me with “continued effort on focus” you are sure I could achieve.  But when you removed my support for assessments, I “failed to gain the marks required to achieve a grade.”  You note that I enjoy the “practical aspects” of a lesson, but quickly lose interest in the “theory.”

The thing is, we know I have trouble focusing.  That is due to the physical disability in the way my brain is structured.  If I were blind, you would not write that I should try harder to read.  My need for support and my difficulty staying focused is directly related to how my brain is wired, and has nothing whatsoever to do with the effort I put into my school days. There is no need to write this on my report and it’s really not helpful when you give me low grades for effort.  How do you think that might make me feel, when it is just not true?  Can you not imagine that for me, just being in school every day is such an enormous effort that when I go home I often fall apart?  Can you not imagine the immense effort it takes for for me to just sit still trying to take in what you are saying, especially if you have not had the time to give me some key words or some visuals or word maps or break down the theme of the class into very small steps for me to follow, or any of the other suggestions from the specialists. Don’t you see that sitting and concentrating in each lesson takes more effort for me than a top student puts into his or her day?

And about those behaviors – yes, there are times when I become overstimulated and dysregulated.  But these times don’t happen because I am being willfully naughty.  I am not trying to frustrate or annoy you. A detention can’t change my behavior.  My brain is overloaded and can no longer cope. I need to go somewhere to calmer for a little while to allow my brain to reset.

So, yes, I do require “continuous support” to “achieve lesson objectives.”  We know that.  You don’t need to write it on my assessment.  I will always, during my entire life, need support.  The format of that support will change as I mature.  We have great hopes for using technology better to keep me on task, to help me focus, to aid me in those areas of weakness like mental maths and time keeping.  I will always put greater demands on you as a teacher than most other kids. In our inclusive educational system, I am entitled to access the curriculum in the ways spelled out for me by the specialists. I am entitled to the accommodations, scaffolding and support that directly relates to my disability.    Those are the things I need to succeed.

I know you are busy.  I know the powers that be are putting more and more demands on you and that through no fault of your own you are being forced to teach to national tests in new are more harrowing ways.  I know a student like me makes it harder for you to work with the new inflexible regime. I know you are a teacher because you do care, because you are motivated by a love of a subject and a love of sharing knowledge.  I know I may not be able to share the intricacies of your subject matter with you in all the nuances you hope a student might absorb.  But I can make correlations.  I can access things from a roundabout direction. I will learn in my own way, especially using the tools the experts provide, and I will sometimes surprise and please you.  I can even excel in some areas that favor the music, arts, physical movement and strength.  I am functioning at an emotional age about half that of my peers.  While I am gaining maturity more slowly, things will even out for me in my mid-20s.  We just have to keep me in a positive frame of mind through these hellish teen years that are to come.

You can help by continuing to see the me beyond the brain damage..  I am a kid who tries hard every day – even if all you see is me fiddling in my pencil case, I am trying, trying, trying to organize myself even though I don’t really get what that means.   I am a kid who actually knows more than your tests will ever be able to elicit from me, and that is okay.  Just don’t underestimate me.  And don’t, please don’t, ever again tell me I am not making an effort. I am trying so hard that when I get home I often fall apart.  I cannot simply try harder and magically overcome my disability.  Mum and Dad and I are working to learn techniques and skills to manage, so are the special needs team at school.   I can eventually become more independent as we put in place supports and scaffolding to make that possible, but I will never be able to work completely alone.  With your continued patience and guidance, I will some day be a strong, happy, and contributing member of our society.  The suggested supports you put in place to teach me in your classroom, the very process of showing me it is okay to have some visual reminders and to break down tasks into small and manageable chunks – these strategies are as important as the subject matter to me and will allow me to be a successful adult who is not ashamed of the need to explain to people what I need to learn and work to meet our shared goals.

None of us is expecting a whitewash here. We need your professional assessments to see if I am growing and learning. The amazingly wonderful and maybe miraculous thing is, by your accounts, from what you have written, I am.  Sprinkled all through this report is enough good news to keep us all skipping through the summer days that are coming.

It’s just that sadly, too few of you seem to “get” me.  I am a fighter.  I have overcome more than you can imagine in my short lifetime.  I have other related physical and sensory issues that are all part of the mix of the damage done to me by in utero exposure to alcohol.  I am a pretty remarkable guy.  I wonder how many of you have read my full file.  I hope if you have me in your class again you will really ‘see’ me.  I hope you will reach out to my parents more.  They want to help you to help me.  They can be allies.

Please understand, I treasure you all.  I value teachers and all that you have done for me. I know too often people don’t show the respect for you that you deserve.  Our family – we are HUGE fans of teachers and educators and anyone who spends their days surrounded by a thousand faces of the future that will be.  We love schools and books and assemblies and new technologies and the way the world opens up to kids who walk through school doors.  We are big supporters of a well-rounded education and are so pleased that you still teach the arts and music and drama and PE and that your environment is so upbeat and positive.  We know that takes so much time and effort.  We sincerely wish you all a very relaxing and happy summer.

And me, I am going to play in the sand and cope as best as I can with all the anxieties and fears of a new routine that is bearing down on me.  But I will walk through those doors more confident and capable next year because of all you have done for me this year.

So, thank you.

Love,

Your student

…the one in the back row who fidgets a lot, the one who one of you said shows signs of ‘brilliance’ at times, the one who happens also to have FASD…


Dear Teachers – PDF for printing and sharing