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.”