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

 

 

Playing with Fire

Lighter

By @FASD_Mum

Highs and lows. Hope and fear. Cuddles and rage. Adrenaline and lethargy. Togetherness and loneliness.  Our last couple of weeks have had so many ups and downs it’s hard to know how to disentangle it all, how to amplify the positives and how to minimize the negatives.

I have started at least three different blog posts over the past two weeks, each time feeling like I was not true to the experiences we have been having, each time feeling like I was only telling a part of the story.  Each time feeling like I was being misleading if I mentioned one thing and not another.

Sitting here now that the house is quiet, thinking about this over coffee that is growing cold, I realize that inability to figure things out is actually the point.  With FASD there is no even keel, or at least we have yet to find it if it does exist.  Life is constantly changing.  One minute is triumphant, the next is soul-destroying.  It’s hard for those outside our home to see this.  Our son manages fairly well in public and at school.  The real ups and downs come out at home, his safe place, the place where the full impact of trying so hard throughout his day means he releases it all here.  When he simply cannot hold it in one more minute, he knows – and I hope he always remembers this – that if he stumbles here, if his internal disequilibrium overflows or bursts out, here we will always help him up after that moment passes.  As it always does.

Triumphs – we have had some in the past two weeks.  It seems the new medication our son is taking has had profoundly positive effects on his ability to focus in school.  We are being told that it is transformative in his ability to not only work until the end of the day but also to do more of his work independently.  The Special Needs team wants to reevaluate him after the break, as they think with this new medication they may be able to revise some of what they thought they knew about his abilities.  This medication is providing a clearer window now into the mind of the child we always knew had the potential to do more than they thought he could.  He is bringing home awards for sustained effort and good work.  We couldn’t be more proud, more deeply and seriously pleased.

And yet we live with the recent memory of what it was like for him during those few weeks we had him off all of the medication.  Those days when he couldn’t sit still, his internal engine revving so hard he was literally upside down and in constant motion, unable to stop the jittering, unable to be still.  We remember the days when the last medication had side effects that crept up on us, turning our sweet young son into a sailor-mouthed, aggressive handful in the mornings and evenings.  We walk with trepidation as we know this drug too may develop side effects.  We walk with uneasiness, the warning echoing in our heads from one adult with FASD who said his parents set him up for addiction by putting him on these drugs at an early age.  So we try to hold onto the encouraging messages from the school.  We remind ourselves these medications can give him time, space to learn more, absorb more, to develop coping mechanisms while he is young, before he hits those teenage storms we know are coming.  We still have one last hurdle over this holiday, as we move him to a long-lasting version of the medication, to make his days less of a chemical rollercoaster.  We are tentatively hopeful but prepared in case these next weeks become another minefield.

Scares – we have had those as well, especially during this last week.  For four days in a row he had taken possession of either a lighter or matches.  The first we knew about it was when the school notified us that he was warned/reprimanded because he had a rusty lighter in his pocket that he said came from our garden.  I never believed that.  We do not smoke and have not had lighters here, though it’s not impossible a guest may have left one out there.  Then over the next two days, he had (despite our searching him and the school searching him) two more lighters at home, new ones this time, one of which my husband found him playing with at 10.00 at night when I thought he was asleep.  Flicking the lighter unsuccessfully in his bottom bunk that is surrounded by oh-so flammable curtains.

My house burned down in the middle of the night when I was a kid, about his age.  This scenario leaves me cold, immovable.  Scared.  He also had some matches at school that he somehow got from the chemistry room.  We learned that when he was with his auntie at the allotment last Sunday he also had found a lighter and was playing with it.  I noticed he was watching a video on YouTube on how to light matches.  Our son, during the same week as we were getting such good news at school, seemed to be turning into a junior pyromaniac.

Heart-stopping, stomach-thudding stuff.  The kind of news that pounds its way into your head, and refuses to let you sleep at 2:00 am or 4:00am.  The kind of stuff that makes you sniff for the smell of burning bedclothes even when you know there are no more lighters.  That makes you hope desperately there are no more lighters.  That makes you realize you will never be able to control all the variables, to guard against every danger.  The kind of stuff that leaves you unable to think or move or process information, probably in much the same way your child’s brain freezes many times, every day.

Sure, we have had the talks.  Repeatedly.  I have used every maternal trick possible to wheedle out of him where these things are coming from.  My gut instinct is this is some kind of bullying.  His FASD means he cannot tell me fully what has been happening since he cannot remember the timelines.  His brain confabulates – it fills in the details he can’t quite remember or can’t face with other versions of plausible stories.  We latch onto a few recurring themes having to do with unnamed Year 10 kids who smoke and something about a back field at the school.  We discuss this daily with the Special Needs team at the school.  Everyone is perplexed as he has not been alone long enough to go wandering afar.

We will probably never know where these things have been coming from.  The committed and thoughtful SENCO stayed up late making a social story about true ‘friends’ for him.  We discuss with him the dangers of fire, and why this is much more serious than bringing home forbidden candy his friends give to him.  We give him phrases and words to use. We practice saying “no thank you” if someone offers him a cigarette or a lighter.  We remind him to go straight to a teacher.  We come at this from every direction we know how.  And then I find a huge plastic container of toffees under his bed that he somehow absconded from his auntie’s car, and I feel deflated – if he can smuggle something like that past us all, how can we possibly be on guard for all of the small but potentially deadly dangers.  I ask my husband to buy more fire extinguishers, but he doesn’t understand my underlying urgencies.  It’s a jumble – teetering on the edge of that place I dare not go.  I described it recently, that knowledge I have that if I start crying I will not stop.  The overwhelming sadness I have for the realities and dangers my son will face again and again and again, those things beyond his control and beyond his comprehension, at least for now.

There is no malice in our son.  Just like when he practiced breaking eggs over his head in the bathtub, he is exploring, feeding his underdeveloped senses, being scientific in his way.  His brain cannot link cause and effect so he doesn’t really get it that some things are more dangerous than others – certainly not in the moment of intense interest and discovery.  He is genuinely dismayed when he feels we are overreacting to some thing or another.

Above all we must be sure he feels safe in coming to us with any problem.  We must not let him feel ‘naughty’.  For his safety and ours, he must know he can reach out to us on those times when he gets himself out on a limb and doesn’t know how to climb back without help.  We must be his safe place.  We cannot make him retreat into himself and hide those things that happen because of his brain mechanics.  We must always show him our love and understanding.  Even as he plays with fire.

His self-confidence and self-image will be the key to how he is able to cope over the coming years.  We know this.  If he is to avoid the statistics, and they are grim, we must give him every possible chance to understand that his differences do not define him.  We must celebrate those triumphs and minimize the pitfalls.  And so, despite having spent every night this week alert for flames that I know can burn down a houseful of dreams, I smile and hug him every morning.  I scratch his back, a bit sad that now that he has grown up a bit he is able to direct me more – “To the left, up a bit, there, to the right” rather than the previously adorable “No Mummy, not there! Scratch where it’s itchy!”

I am in pain, physical pain from an injury and due to nerve damage in my spine. I have an intense job, and it is extremely difficult to juggle that and my physical issues and the increasing demands of this new phase of parenting.  Everything jumbles together and amplifies the stresses of the days.

I also know that we are not alone, and we are by far not facing the worst challenges that FASD can throw at a family.  Last weekend we organized another FASD support group meeting.  I tried to write about that too, but was unable to explain the seesaw effect of hearing more about the struggles and successes other families face. The heartbreaks and smiles.  The hopes and fears.  Ups and downs. Triumphs and pitfalls.  There is nothing particularly special about anything I have just written about.  It is happening in houses all across the country, all around the world.

FASD is so little understood in our society.  The stigma suffocates any real discussion about how to help the 2% of our society that struggles with the range of conditions associated with this physical disability.  It is mind-numbingly wearying as a parent to know that our son carries not only the weight of living every moment of every day with this condition, but that we have to prepare him for a life of explaining himself to others who refuse to look at him as a whole person and to understand his disability.  People refuse to face FASD because if they do they may have to re-evaluate what assumptions they reconcile within themselves about drinking and pregnancy. It’s backward, archaic, and short-sighted of our policy makers to allow this silence to continue.

 

 

 

 

 

 

 

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.

 

 

Vulnerability

 

1. Exposed to the possibility of

by @FASD_Mum

Vulnerability.  This is the word swimming around my head this week. Everywhere I turn, it feels like FASD is shredding our family’s pride and defences, leaving each of us, especially our son, vulnerable.

Vulnerable is not a word that I generally apply to myself. It’s a word that makes me cringe, a word my gut wants to rail against. It’s a scary word.  A word that can knock you down at the knees and leave you helpless.  It is raw.  I want to cover it up, rather than draw more attention.  Hurry other people past what we don’t want them to see.

But FASD won’t give us that option.  In a world where this disability is not fully recognized, in a world where doctors, teachers, midwives, policy makers, media, other parents, kids – no one seems to know enough about it, we find ourselves again and again having to be very direct and open.  We have to provide details about our son’s brain damage and development.  We have to talk about exactly what things he can’t grasp because alcohol burned neural bridges while he was still inside the womb.  We have to rally ourselves for yet another meeting with yet another amazing professional who wants to help but whose education never included information about our son’s condition – the condition of a relatively silent but present and underserved segment of this society.

My sister-in-law has written on this blog about her journey in coming to a better understanding of how she could help us.  But what she doesn’t say directly is that for our need for help to be heard at a deeper and more fundamental level, I literally had to break down into tears (not easy for the child of a Scottish American mum who taught me to cry in the shower so people wouldn’t know I’d been crying.)  And yet, my own tears weren’t what was pivotal.  I had to go further and admit that my husband regularly does the same. That’s what led to action.  My husband’s tears.  Vulnerability.  It makes me cringe.  (Him too.)

I have written about how confused our son was this week by sex education classes.  What I haven’t said explicitly is how scared I am to think ‘big kids’ (as he says) and other ‘friends’  are telling him now to do things to/with other children.  How chilling it is to hear him say that defeatist phrase little English kids mutter with a shrug of the shoulder, giving in, “I don’t mind.”  I wrote about how he stole some candy when he went along to a shop with other kids rather than go to an afterschool club.  What I did not write was how I had to fight back every parental red flashing alarm bell when I saw those big packets of candy in his pocket.  How my own brain screamed when today at school, and for the second time this week, our 4-foot-tall-11-year-old-son-who-wears-size-1.5 shoes was being warned about the police.  (For crying out loud, he still likes to sit in the baby swings at the playground. I wanted to scream.)

I didn’t say how absolutely heart-wrenchingly petrifying it is to KNOW this world can chew him up and spit him out before he will even understand what any of it is is about.

Vulnerable.

He is the one I personally have a duty of care to protect.  And I am scared I might not, we might not, be able to do that.

FASD makes us be frank and in doing so to open up more than I would otherwise.  I don’t want to have to talk to educators about personal things, about our family’s struggles, our son’s difficulties.  I don’t want to have to yet again explain to friends, family about these conversations, and then deal with getting past other people’s defences while I am cringing myself.

But, you know what.  I must.  We must.  And we also must give our son the words to eventually do this himself.  Any family advocating for a child with FASD has to do this.  We are not unique or remarkable.  It’s just what you do for the kids you love, especially the ones at the fringe, on the outside, who don’t quite fit in.  The ones who try hardest, who struggle with things the rest of us take for granted.

If I have to lay my own pride bare, and suck it up and scream it to the world, risk some disproving looks, if that is what it takes to help people understand that my child is deserving of a chance, deserving of respect and empathy, deserving of the time it takes to understand him, then yes, I can do this.  I can be explicit about the times we are knocked to our knees around here by the storms and the chaos that comes when a person’s brain teeters on the brink of the fight and flight instinct, when a misjudged moment can trigger a meltdown that can leave us stunned, numb, depressed, frustrated, (angry), hurt, desperate, freaked, uncertain.  I can write about the pain as a parent of not knowing how to help my child, the confusion of wondering why I am the one who has to research and educate about this condition that has been known to the medical community for decades, why I don’t have professionals telling me “It’s ok, here are the recommendations we have for you.”  “Here’s how you handle that.”  I can write about the challenges of balancing other family and work responsibilities with the daily uncertainties of walking through this minefield.

Most of all, if it helps, I will slowly and carefully set out there for all to see, the deep and enduring love I have for our son.  I will say again and again and again how much I cherish this boy and how much I appreciate the depth and vivacity he has brought into my own life, into our family’s lives. Words I should only have to say to him, I will say out loud for all to hear.

I was ready to die during childbirth for the life of our natural born child. True story.  Strapped to an operating table without enough anesthetic, I was braced and ready for them to cut me anyway when I heard them say, “The baby is in distress.”  You can think whatever you want about adoption, but I am here to tell you that my maternal yearning for our adopted son to survive and thrive is as strong as it was (and still is) for the child I carried.

This week the signal has been coming to us repeatedly: “The baby is in distress.” And once again that instinctive will to ensure my child survives and thrives overcomes my personal fear and repulsion of vulnerability.  So, here I am.  Bring it on.

And in saying all this, I am not for a second implying that any of this is about me, or my husband.  Our son is the one with Fetal Alcohol Syndrome, who sees the world through a different prism.  I am trying to explain how we parents are laid bare in our efforts to help him because society, “The System,” the powers-that-be refuse to step up with their funds and their institutional might to make this journey less difficult for him.  By treating FASD as a hidden, lesser disability (despite its prevalence), decision-makers are leaving the FASD community vulnerable.

“The Worst Day Ever”

This %22Worst Day Ever%22has been brewing for a while.

By @FASD_Mum

Tears slowly welling in the corner of his eyes, our son has reached some new level sadness.  He usually storms or screams or flashes out in frustration, shouting his misery with short, sharp bursts.  Curling up on the couch, silently crying, this is new.  And for all the times I thought his outbursts too extreme, too tiring, too much, now I wonder if I fully understood there is something worse.  We just sit here in this new space.  In the ten minutes he has been home, he has repeatedly said this was “the worst day ever.”  I am not yet sure just how bad it all was.  But I deflate inside.  I have a quick vision of him curled up like this in his future, on more lonely nights with more silent tears.  A lost and confused soul in a world that doesn’t conform to the way his brain works.  I stroke his head.  I do what I can: I tell him I am sorry the day was a bad one.  I ask him to move closer so I can give him a cuddle.  I tell him it won’t always be like this.

Our son’s beloved phone got crushed today at break time.  Smashed, actually.  By him.  Because he couldn’t find his “VIP” pass for the food line during break.  The pass that allows him to skip ahead and avoid the several hundred person scrum, with all the noise and chaos so many hungry teens can create in a small harried space.  The two items are usually in the same pocket.  In his hurry, he wouldn’t have been thinking that the phone is expensive.  He wouldn’t have been thinking that it would break if he threw it.  He wouldn’t have been thinking.  He was upset, overwhelmed in the moment, probably hungry and confused, and he threw the phone.  I imagine him instantly seeing the damage.  I imagine his fear at seeing the broken, shattered screen.  I imagine he just cried.  And then the other parts of his brain realized the phone was broken and probably unfixable.  And distress would have set in.  Luckily his older brother saw him crying and guided him toward help.

Today is Monday. This “worst day ever” has been building for a while.  Let’s rewind to last Monday.  That was the day he didn’t go to his afterschool homework club but went to a local shop with friends.  That’s the day when one of his friends texted us to say he had stolen some candy.  That’s the day we marched him back to the shop and made him give the candy back to the store security and shake hands.  That’s the day we gave the shop a note with his picture asking them if they see him in the shop without an adult to please call.  (What our son doesn’t know is the sign also explains he has brain injury due to FASD and doesn’t always link cause and effect.)

Last week was long and difficult.  Kicked dogs, spitting, shoes thrown, foul language, extreme behaviours.  A very long week.  Calls out to the doctor (who has been away on holiday) seeking advice about switching medications since these behaviours are new, increasing, and alarming.

The school had warned us his that on Friday his science class would cover in utero damage to fetuses from alcohol and did we want him to attend.  We offered to go in for the class.  We offered to talk with the teacher.  We asked to see what they would cover.  They said they decided to limit what they would say, that they would go into it in more detail in Year 9.  We still don’t know exactly what was said in the class, but we do know that after the class our son had innocent if inappropriate questions for a female classmate.

Then, this morning.  A cold, grey, Monday morning.  Our son told us in every way he could that he didn’t want to go to school.  He hates science (first lesson today), he hates sex education, he hates learning, he doesn’t want to go to school.  He kicked his shoes off outside.  He tried to go back into the house.  It almost felt cruel to be encouraging in the face of distress like this.

And guess what? The day was in fact “the worst day ever.”

I tease out tidbits over more than an hour.  I kind of get a picture, but it’s all jumbled.  Disjointed.  I hear about big kids that knocked over little kids and spilled coffee on them, including my son – but FASD scrambles time and while it wasn’t today it’s hard to know when this all happened. It’s another reason why he wants a different school.  I still don’t understand what is happening with the Illicit Candy Ring and money and why our son whose pockets we shook out this morning now has a pound on him.  Why he was standing under a tree this morning, rather than go to class, was it because we took four pounds off him before he went?

I fear people are mistreating him but I can’t identify the threat, I just feel the danger lurking in these tween years.

And now we have silent tears.  Internalized pain.  And I stare down the long road ahead of him and ache inside for him.  He reels off the specifics of several different models of phones.  He cautiously asks about replacement despite my non-committal responses.  He sobs because his “memory” is on the phone.  (I shrug it off, I assume he is talking about how many gigabytes he used up.)  He cries because his friends’ contact information is there.  But as he talks, I realize this phone, infuriating and imperfect as it is, has become a lifeline for him to have some interaction with other kids outside of school. It also tells him what day it is, what time it is, what the weather is here and in other cities, what homework he has due, what his schedule is that day in school.  It links him with us and family friends via text messages, family photo sharing and FaceTime.  I remind myself very belatedly that this phone is so much more than the world’s most irritating App (Talking Tom) and access to the charming “Hello Bitches” music video.  For him, it is a way to have some moderated independence.  It is beginning the steps to teach him how to use technology to support his needs, to use modern technology (timers, calculators, maps) to fill in those fuzzy areas his brain can’t reliably process – life lessons we know he needs to learn well.  I stumble through the conversation with “I don’t knows” and “we’ll sees,” confused myself now as to what would be the best outcome: to replace (we have insurance), to wait, or to nix the phone altogether.  My earlier relief at the thought of this being the end of our never-ending Phone Struggles is quickly dissipating.

And while I ponder this, after some quiet but deliberate swooshing of warm water from one end of the bath to the other, he eventually starts talking very quietly – in that tone I know is from somewhere deeper inside him.  I am alert. “Mummy people were asking about my phone.”  We are directly speaking now, not in language I need to decipher.  He says, looking at me from the corner of his eyes to see if I understand, “I don’t want to tell them.”  Ah.  Smart boy.  Slow Mummy.  Now I get it.  He doesn’t want to tell them how it broke, that he threw it because he couldn’t find his pass.  He feels ashamed, embarrassed, confused as to what to say.  He knows what he did isn’t “normal.”  I tell him it’s not their business.  “Just tell them you dropped it.”   As I tell him to lie I fear I am creating future problems.  I am in over my head here.  Yet another page missing from my parental guidebook.  I tell him it’s enough he has told us the the truth.  Then, when I am blow drying his hair, I stop and look into his eyes.  I tell him it won’t always be like this. He looks down, dejected.  I say we understand he can’t stop himself from doing silly things sometimes when he is frustrated.  But he will learn some day how to control his frustration so he won’t throw things.  It will get better.  I am not sure he believes that, or can picture that.  Not yet.  Certainly not today.

I intend to go into his room to discuss “upstairs brain” and “downstairs brain.”  To explain again that when the fight and flight part of his brain is in control, as it was when he realized he lost his VIP lunchroom pass, that he isn’t able to use the thinking part of his brain.  But he is already in his bed, contented for now with a CD player we borrowed from his brother’s room, since his iMusic lifeline is now severed.  He has adjusted the heavy fuzzy blanket, covered the end of the bed just so with another blanket,  wants all the lights off.  I know he will rock himself to sleep.  Sure, it’s only 5.30pm.  But it has after all been “the worst day ever.” I’d want to go to sleep early too.

Tomorrow, then.

We will face a whole new day all over again.  One phone down.  Without his “memory.”

 

 

Our Son Struggles with FASD – Just Look into His Backpack

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By @FASD_Mum

Opening our son’s school backpack takes a sort of courage, especially if he happens to be in the room when we release that first zip.  All sorts of half-formed anxieties await below the surface.  The school bag in many ways represents the various challenges a child with a Fetal Alcohol Spectrum Disorder faces on a daily basis.  It also shows our inability as parents to protect him in all instances.  It shows we are right to be concerned when he goes out that door each morning. We know it is good for him in the long run to go, but his backpack tells the story of the battle he rages every day in a mainstream school.

The first thing I notice every time is the mess.  Things have been hurriedly crammed into the bag.  I unfurl the curled-up library paperback, disentangle the reading record from the geography book, smooth out the crumpled pages, and hope the teachers won’t notice.  I take out the three nearly empty drink bottles, pleased that at least they didn’t leak, and wonder again about how much money he is racking up on his school meal account.  I find some loose sheets of paper crumbled down at the bottom that appear to be worksheets for some homework assignment that never made it into the hard plastic folder we have put into his backpack to protect just such stray sheets.  I open the folder and feel that familiar thud in my stomach when I notice he has not yet handed in the history homework we battled over several days ago. I try to remember the last time I checked this bag.  I thought it was yesterday, was it longer?

Next, I open up the planner and notice that the helpers have indeed written down what homework is due, but they continue to enter it on the day the assignments were given rather than the due date, making it nearly impossible for him to sort through, requiring him to page back a few weeks to see if anything happens to be due on a given date.  We all have the cutting-edge homework app on our phones.  We thought he was on top of things this week, but then we notice, hiding there in the written planner, an assignment due tomorrow that was never posted by the teacher onto the online homework program.  Once again, I recognize that sinking feeling, knowing he is not good at surprises and accepting we are unlikely to be able to do this quickly, now, before school.  Feeling defeated that I had not noticed this sooner.  Worried he may face a detention.  Again.

Next I notice that he has written on the top of every day in his planner until Christmas “no lunch.”  I ask him why, and he says he “hates lunch.”  It’s impossible to sort out what the problem is, knowing that he often has some social crash based around the lunchtime freedom.  Sometimes this is minor – a difference over a song, sometimes major – like when we found out one bully was taunting him into kissing people.  He is supposed to have pre-scheduled clubs at lunchtime.  But he is vague as to whether or not he is attending them.

I peel back the zipper on the pencil case.  Beyond the shreds of sharpened pencil debris, I see snapped, bitten, broken and mangled pencils and pens.  It has not been a good week.  Eraser crumbs fall all over the floor.  One burst pen must be handled carefully.  I wonder if he got any ink on his mouth that day.  Later, I google to reassure myself that modern pencils contain no lead.  The chewy pencil topper we bought seems to have been mangled somehow – we had heard he was pulling it off and dangerously putting the whole thing in his mouth to chew.  I spot some gum wrappers and hope that at least the gum was chewed during his break, though he is quite proud of saying he knows how to hide gum under his tongue.  I wonder again, looking at the gnawed pencils, if the school is right to ban the gum in the classrooms.

The locker key miraculously has not been lost yet, but it is never in the one dedicated pocket for the key.  The healthy-ish pack of cheddar crackers remains untouched.  The extra math flash cards are still buried so deep in an outer pocket it is unlikely the teacher is aware they were sent back more than a month ago despite my frequent reminders that he should return them to the teacher (the school is trying to identify his specific difficulties with math, a known difficulty for kids with FAS).  The eyeglass case is equally far down, indicating he has not used them at school for a long time.  The stress block the special education team gave him to squeeze seems to have teeth marks in it.  I see a partial piece of a crumpled note about a class outing with a deadline that appears to have passed.  There’s a shiny green apple that he bought for a snack but refused to eat due to one tiny bruise.

The whole disorganized, overwhelming bag shows our son is not able to organize himself during his school day.  There is no surprise there.  We all know this is a symptom of FAS.  His teachers know.  The special education team knows.  We know.  Even he kind of knows.  And yet every day, here we are – we look into his backpack with its crunched up, confused, snapped-pencilled jumble equally showing accomplishment (when did he learn that, look, he did well on that) and cries for help (why was that sheet torn, why did he find that piece of work frustrating?). We can’t tell if the subject matter is too advanced for him (and then we receive notice he is performing just below average when compared to the entire class, which proves what we have always known – he is capable, but he has a different learning style).  We can’t tell if the classroom noises distract him (though he has brought home the earphones we sent in for his ICT lessons).  We can’t tell if he is hungry, distracted by needing the toilet, in need of several star jumps to clear his head, or simply being a bored pre-teen in what might very well actually be a boring lesson.  The school day is a big black box into which we have various glimpses through his bag.  And whatever half-sentences we might hear at bed time.

I try to sort through it.  I try.  I try to mentally tick off the various things he needs to have for this day at least.  Does he need white socks for PE or shinpads and football socks?  Does he need trainers for dance club?  Am I sending in the hummus, red peppers,  and yoghurt on the right day (he says he needs it today but the teacher’s notice in the planner was not specific, thanks very much).  Why haven’t they let us know the date for the talent show?

And all the while I am focused on this backpack I am ignoring (or trying hard to ignore) the elephant in the room – the fact he was sent out of his last class yesterday for burping.  Yes, our sweet son has been copying “The World’s Loudest Burp Ever” from a woman on YouTube, who helpfully posted a how-to instructional video. He woke up this morning determined to burp his way into stardom.  He is “not bothered” that he might get sent out again if he does it again today in school (the teachers of course do not know or care that he is following an instructional video, seeking fame and glory).  I commandeer his phone so he won’t bring at least this distraction in to school today and I delete the eight videos of him showing his friends in school how expert he is at burping (I imagine these videos were made when he was sent out of class).

The school knows, we know, everyone knows he is at his least able to control himself during the last period of the day, the one period they have after lunch (which, remember, he doesn’t want to have).  He shows us in his own way that he can’t hold it together for so many hours.  But only when he does something extreme like burping incessantly does he get released from class (because he cannot verbalize or recognize his sensory needs, not fully, not yet – if he could, they would accommodate him).  I worry what happens in Year 10, if he is already learning the benefits of being naughty in Year 7. That’s the big worry about this bag.  Where is it leading us?

Our son goes to an excellent school.  They are attentive to his needs, but not one educator in the school has had any training about FASD.  He is the canary in this particular coal mine.  Statistically, there are other kids in his school with the same issues.  Out of 1,000 kids, a safe guess is there are 30 others under that roof who have at least some of the problems due to brain injury from alcohol while in utero.  He is not alone, and yet he is very alone.

But this morning, right now, I am focused on my own son, his messy backpack, and hoping with all my heart that he gets sidetracked from his burping spree long enough to remember to turn in his foodtech homework, long enough for someone to see he actually did a pretty good job on it, my fingers crossed that he is bringing those fresh chives in on the right day, and really hoping he doesn’t need his trainers, which I just noticed by the door. Ignoring the fact he went out into near freezing weather without a winter coat because “none of the other kids wear them.”  I give in on this one point, risking he might catch a cold, because I know just how much he wants to simply be like the other kids.  And because I also know, by my mental reckoning, that there should be another of his coats crammed into his locker (another scary frontier), in case he might need it. I feel worn out and it is not yet 8:00am.