We’ve all heard the story of the desperate little Dutch boy, who put his finger in the dike only to see water start to escape from another hole. I can’t tell you how many times during each school week I feel that way.
Our son has just started mainstream secondary school. We are immensely lucky that he attends a wonderful school. We have been talking with them for more than a year, working with them to make this transition as smooth as possible. We’ve passed along binders full of information about FASD. Our son is well-known to many of the teachers since he has been attending holiday programs at the school for years. They had amazing programs in place last year and over the summer term to help him bridge between primary and secondary school. We could not really have a better relationship with a school. Nothing of what follows is meant as a criticism. But even when everything seems to be going right, the days can be fraught with hidden trigger points, and moment to moment things can begin to give way. As a parent, it’s so tiring because you can’t turn your back, let down your guard, or lose concentration for a nanosecond. If you do, you too might find yourself drowning when the crash that will follow happens.
Our son went from having one teacher and one teacher’s aide (for a few hours each day) in Year 6, to having 18 teachers (with two teaching assistants) in 18 classrooms in Year 7. This doesn’t include morning, lunchtime, and after school clubs, each with different supervisors. The school uses seven or eight different online learning sites, each with their own login information. What this means, is he is having a diverse and enriching education. His day includes classes like drama and music and clubs like trampolining, choir, and dance where he can shine. It is a good, dynamic, nurturing school. I am not criticizing (well, OK, maybe the 18 teachers are a bit excessive for an 11-year old).
A kid with FASD has organizational problems. There is no way – no way – a kid with this disability can juggle all of this on his own (it’s hard enough for other kids). Not only does he need PE kits on certain days – but some days he needs one kind of PE kit and on other days he needs different socks, for example. Failure to bring in the right kit means detention. Some days his homework is listed on the online homework site, other days it is in his planner. Forgetting homework mean detention. Sometimes announcements are emailed to parents, sometimes they are put in notices sent home, and sometimes they are given verbally at form time.
As parents, we have vowed we will help our son stay organized. And we try. And the school helps us try. But inevitably, there comes that moment, like this morning, when even after I checked the “Show My Homework” twice to be sure there was no homework due, my son says as we are leaving the house, “But what about my science homework?” “What science homework?” “The science homework that is due today.” Sinking feeling. “Mum – if I don’t hand it in there will be consequences.” A look of dread on his face. I stand stock still (well, partly I pause for a moment, feeling proud of the vocabulary he used), but once again that little Dutch Boy and his dam pop into my mind. I thought we had it this morning. I thought it was under control. I remembered it was a non-uniform day. I had the favourite clothes washed and ready. I remembered he needed a pound. My husband sorted out money for the cake sale. I reminded him to look for his PE kit once again. We ourselves were rushing out to a meeting. I had cleared out the empty drink bottles from his backpack. We were set to go out the door, and yet in this one moment I could sense, despite thinking everything was under control, it all might explode anyway.
But the point of this is really not about me, and my feelings. Yes, sometimes it seems as if we go through our days waiting for the next shoe to drop. Some days it is impossible to remember everything for school while still keeping us warm, fed, and gainfully employed. We forget, we slip up, we compromise on the perfect little home we’d like to have. I have no doubt there are organizational systems we should have in place to somehow make this all go more smoothly. I also get it that seeking perfection is futile. I understand we won’t always nail it. I am an educated, relatively together experienced woman and mother. I can (more or less) handle these feelings.
But my son cannot.
He walks through his days never really feeling on top of things. Never having the confidence that he has crossed all his ‘t-s’ and dotted all his ‘i-s’. He never really knows moment to moment if he has remembered everything, or indeed what people are expecting from him in a given situation. Things pop into his head, sometimes too late (as with this morning’s science homework), and he feels panic: deer-in-the-headlights frozen. He gets confused when he thinks he understands social signals and somehow gets it wrong. He revs himself up for something to go one way, only to be devastatingly disappointed when his expectations don’t meet reality. He tries hard to make it through the day, but so much input, things he doesn’t quite register or hear, so much he can’t quite grasp leaves him overwhelmed and defenseless – especially when authority figures start to blame him and confuse him even more. He feels criticism very deeply. He fears ‘consequences’ but can’t always keep himself from doing ‘wrong’ according to these school rules. This builds up all day. All day the fear and frustration rises. He barely holds it together until he gets home, and then…
He can’t yet begin to see the big picture of this dam, or understand these tiny things that start to unravel, leak away, until boom! His emotions explode. His inhibitions are obliterated, overwhelmed and he bursts into a frenzy of screaming, shouting, throwing, swearing, and sometimes (less often) hitting, kicking, biting his way forward as his fight-and-flight part of his brain tries to help him survive the confusion.
He doesn’t see the dam. Not yet. Maybe someday he will get enough perspective to see the full picture, to know how important it is to stay on top of those little signals that things are starting to deteriorate. But for now, that’s our job, and probably he’ll always need help. I am the Mum. I am the one who is supposed to have this all under control. But many times, often, every day I feel small like that little Dutch boy, trying (I hope not hopelessly) to stop that dam from bursting on my watch.
Yet srangely, what I also am learning is that even if (or, more accurately, when) that dam bursts, we can rebuild. We get back to safe, dry ground. We don’t dwell in the chaos for overlong. We move on.
FASD is a hidden disability. The answer is not for our son to “try harder” – he tries harder than any kid I know to get through his day. The answer is to keep that pressure as low as possible (sometimes by allowing minor venting), to watch that dam closely, to try to avert the bursts when possible. But also to know that even if it does explode, it’s not the end of our world, its just a time to rebuild. We help him shake it off, and we move on. We don’t wallow in the aftermath, we don’t force him to relive it again and again. We just move on to the higher ground. He’s a good kid. A good kid who sometimes just can’t quite hold it together. And who am I to judge. Sometimes, I can’t either.