There he was – swirling on a rope swing over a gentle stream, sploshing through the water with laughter and abandon. Throwing rocks as far as he could (twice as far as me). Talking with me about yesterday, about how when he feels like he needs to throw things hard, we can always come here. Here it doesn’t matter. Here it’s ok to want to smash and throw. Here is a place where it’s ok. We’re ok, my child. Yesterday was hard, these weeks have been hard. But we are okay. We can find the laughter. We can re-center ourselves. There is always another time, another chance.
How I wish he could see forward in those moments when his world just seizes into the here-and-now-frenzy of “NOT!” Not hearing. Not reasoning. Not stopping. Just riding out that intensity of the NOT! in the only way he knows how as of now – the knock-down, smash-it-out, take-no-prisoners meltdown. Maybe you know it – the one that leaves you stunned, drained, bewildered…standing outside a door you can’t open but can’t leave. The one that makes you feel so small in the face of the tangled neural networks that work against the peace you hope to achieve. The tsunami of emotions that must play out. The one you can’t let drown you even as you find yourself choking on despair in the face of your loved one’s torment.
FASD is cruel at times. It’s bald and raw and fierce.
Trapped inside always trying to conform, sometimes it breaks free and just lets fly.
I get it. I have in my own life wished at times for such abandon. I have at times wanted to throw, scream, shout my truth whether or not it hurt others or myself. And I don’t have to squeeze myself every day into rooms that are not made for me, trying to mold my mind to tiny boxes others want me to tick because it’s easier for them, no matter how hard it is for me. I don’t spend my days clashing against others’ expectations that few people untangle for me so I can actually understand them. I don’t have to live my life always feeling like I am just not allowed to be who I am. I have empathy in boatloads. I get it, I do.
Even as the worst of it flies, I get it.
Or at least, I can try to imagine it. I know I will never really understand it, because I don’t live it. How very important it is to listen to those adults with FASD who can give voice to what the littles ones can’t yet find the words to say. How lucky we are that there are those willing to help us understand. I try, try, try. To support. To do better. To protect.
But “getting it” (or trying to) still doesn’t make it easy. That doesn’t mean sometimes I don’t want to cry. The big cosmic stinking situation that left this person facing such challenges through no fault of their own. It’s not just. It isn’t. Sometimes i am discouraged to the core, worn down to the bones from trying and never feeling I have done enough. No, it’s not easy.
But even still, I am unbudge-able on one thought – there is hope.
I am learning. I too am growing. I know I need to be patient. This is a long game.
These frenzied horrible moments eventually pass. Sometimes it seems the episodes are shorter. Less frequent. Glimmers of the strategies we practice shine through. I notice tiny progress – or maybe it’s huge? Maybe the destruction wasn’t as great as it might have been–was there a dawning awareness, a guiding hand, an emerging instinct helping to avoid the worst of it? It’s hard to know sometimes. We are improving our ability to speak about it after – we really are learning the shared language of this disability, its dysregulation, and the lingo of how FASD affects brains. We find peace again sooner – between us, and as a family. We have learned how to ask for external help when we need it, and we have done the legwork to be sure when we send up the bat signal, as I did yesterday, people know how to help. They knock on the door. Like the first responders they are, they rush in when others might run in the opposite direction.
I have learned to shed the resentment, the hurt. When the moment passes, as it always does – I am ready for the reset. It always comes. (May it always come. If I were a praying person, that would be my prayer. May we always be ready to repair the space between us.) That moment after, when we can start again. Start stronger. Move forward. Grow. I am ready. And he too is learning to trust that better moment will come.
I am there. I wait for the tiny “sorry mummy.” I am ready with the lotion for a foot rub, close by to tuck the covers just so. There to say for the gazillionth time (because that’s how we measure things around here), “It’s okay. I love you. I’m good. Are you good?” Good. We’re good.
For further information: FASD meltdowns are due to the brain-based issues related to FASD. They are not tantrums, they are not intentional. They are not always avoidable. Anecdotally, we hear from adults with FASD that sometimes they are necessary. It is essential to try to better understand these if you are trying to support someone with FASD – or if you yourself have FASD and don’t understand why you might have a meltdown. Not everyone has the violent outbursts, but nearly everyone has that moment of brain overload that leads to an inability to move forward.
NOFAS-UK has a poster (originally from this blog) and some links to resources about meltdowns here.
Some earlier posts on this blog explored meltdowns from different perspectives: