Each time I come across posts by @FASD-Dad and @FASD-Mum, I find myself nodding with agreement to each and every sentence. They write about things I have seen other parents parenting with FASD talk about yet, the rest of us are not willing to accept these kiddos for what they are. Their anxiety, fear, and meltdowns are not anywhere near that of a “normal” child.
Anxiety. We all get anxious about things. We’re late for an appointment. Can we afford to get a repair on the car done? Does that girl I like like me too? (Turns out she does and in a long and roundabout way that led to this blog.)
That anxiety is real, but compared to the anxiety our son feels, every day, all the time, about everything, our anxiety is trivial.
Our son is a boiling kettle of anxiety, says the counsellor who is helping us learn how to better care for him. That’s his normal state. That’s why, when something goes wrong or doesn’t go as he expects, he blows into a full scale meltdown almost immediately. A meltdown where things get thrown. Where kicks and punches are thrown. Where his little frame is rigid with tension because he simply cannot bear the pressure in his brain. Where his senses no longer work to help him interpret the world around him, but are screaming at him to fight! Fight! FIGHT!
So what causes this terrible anxiety? Well, in common with many kids with Fetal Alcohol Syndrome, pretty much anything. Our son has such a hard time understanding the world around him, his social relationships, the tasks he has to manage at school, that everything causes him to worry.
In the last few days it has manifested itself in different ways.
Does the dinner he loved yesterday taste very slightly different today? Or is it a little too hot? Or a little too cold? That’s a massive sensory problem which can mean dinner is thrown across the room. Or it could just mean a refusal to eat a meal and a retreat into his safe space to watch videos.
Are we going to a new gymnastics club? Somewhere unknown? That’s a huge source of anxiety which means it is really, really hard to get out of the door. We have to find exactly the right bandana to make it ok. Is the new gymnastics club different? Do they do the exercises slightly differently to the previous club? That means they’re doing it wrong, so he can’t join in, he has to sit and watch. And, because the hall is smaller and the noise too intense, the sensory input becomes too much and his anxiety levels start to go through the roof. So we have to leave. And now we need to find another gymnastics club because his original one was all girls and him, and that’s worked for several years but now he wants to be with boys, doing boys gymnastics.
Are we off for a walk with the dog? Well, the dog mustn’t be let off the lead because if he’s off the lead he might run away. If he is out of sight for a second he might have run away, and the panic in our son’s voice is palpable. The dog, you see, ran away once. He got far enough away that he was taken to the pound, and we didn’t get him back for 24 hours. And so, for our son, the anxiety of losing his beloved pet is ever present. Something else to add to the list of things that add to his anxiety.
There’s swimming at school. But the message didn’t get to us, so he has to do hockey instead of swimming. That’s not right because the timetable says swimming. Right there, that’s enough to spin him out of control and into meltdown. But at school, barely, he holds himself together, and then at home as he lets the pressure valve go. With us he knows it is safe to let go, the meltdown starts and goes on and on. And a week later, the worry about whether we know it’s swimming and does he have his swimming kit in the bag comes bursting out as we try to get him out the door to school. Yes, we know, it’s here. Is it here? Yes, the kit is here. I have swimming today, do I have swimming?
The pressure his anxiety puts on him is horrible.
So what’s the effect of this? Of living on the edge all day every day? Of worrying about everything around you in such an intense way.
We’re constantly worried about him and his mental health. We are constantly concerned that our son will crack under this pressure, lose what ability he has to cope with life.
What is the long term effect of living with this level of anxiety on the rest of the family? For our family it puts us all on edge. Our elder non-FASD son is a calm boy, but when his mum and I argue, as we sometimes do under the pressure of dealing with yet another meltdown, he cracks and shouts at us to be calm. His worries are just below the surface too.
For us, it means living with uncertainty all the time. Wondering when the happy, smiling little boy in front of us will suddenly flip into a raging little bundle of doubts and fears, unable to process his anxieties and lashing out at those around him.
So we’re trying to give him tools to regulate himself. A mood chart, from a calm, blue sea to a raging storm so he can learn to express how he feels, something he really cannot do very well at the moment. We try to use it with him when he’s happy as well as when his mood is deteriorating, helping him to learn a vocabulary to tell us about himself.
We’re trying to be better about regulating the environment around him. Making sure each day that he knows what will be happening, what we’re doing, what he will do. No surprises is the rule. Over the summer we had stopped using the family white board to write was coming up – and he just asked us to start that again. A small sign of growing self-awareness – he needs to know the routine of the day.
When his mood cracks and the signs of meltdown are obvious we’re improvising on tools the therapists gave us. We use sensory stimulus to distract him from meltdown. Pretending with a variety of pressures that he is in a sandwich, he is cheese that melts; or a piece of hard pasta that gets wiggly when it’s cooked; an ice cube that melts, or an egg that cracks. At the moment this technique has a sometimes remarkable effect. Twice in one day it altered a mood that was darkening, and forestalled the descent into full sensory dysregulation. We have learned some tips to try to head off the meltdowns.
We have to help stop the kettle boiling over, and find a way to take the pressure off so it isn’t ready to blow at any second. It’s tough. But for his sake, we need to find a way.
Disclaimer: The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.