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.