There is a certain sound when something hollow gives way in the face of force. A crunch and a silence that leaves us a bit stunned for a moment. We sit there, frozen, as the knowledge sinks in that there’s no going back. There’s only forward from this spot.
Parents with children with Foetal Alcohol Spectrum Disorders and other disabilities are often familiar with this sound. Doors, walls, toys, electronics. Spirits. Dreams. Hopes. Things cave in when under enough pressure – whether its quick and impulsive or constant and unrelenting.
We are faced with big and small moments where realities compress down into one critical instant. And we are left with a choice of what do to when we realise something has broken – around us, within us.
I was standing in that space last night. It has been a difficult few days. It’s a school holiday. It’s never easy when we go off-schedule, especially when combined with other family and work pressures. Resilience is low.
England’s relentless gloomy weather lifted for just a while. We were trying to be outside, active. Maybe we tried too much. It doesn’t matter how we got there, it happened. It will happen again.
I had a choice. I said something unkind. I could lay out the reasons – how after hours and hours of our son teetering on dysregulation my own tensions had ratcheted up to the point where I lost my filter. I think you’d understand. It even involved a dog with digestive issues. A certain person with sensory issues trod through the results and spread it across two floors and onto his bed. It ended up with the duvet being thrown down stairs, panic from too many bubbles in a bath and my inability when personally exhausted to handle multiple crises on multiple levels in one moment. It was fairly spectacular in retrospect.
I don’t even know for certain that my son registered my unkind comment. We certainly were back on solid ground not long after, once the dog was outside, the bubbles were tamed and the bedding changed. The floors cleaned. But that is not the point. I know what I said.
Maybe others have those things they have said in those moments. Words we cannot recover. There is no going back, only going forward.
So much is written about children with ‘violent’ behaviours. Our schools and our culture focus on stamping out ‘rudeness’ and ‘aggression.’ There is a great pressure on parents to raise children who conform, who ‘fit in.’ But some children don’t conform to societal rules because they cannot due to the way their brains are wired – at least not unless significant accommodations are made. It’s not because they are naughty.
I am pretty on top of this ‘alternative parenting’ concept and yet I still feel the weight of that external pressure every single day. Someone gives a funny look when we are out and our son – who is trying his hardest but is struggling – might use choice language. Someone frowns in disgust when they see our guy on a path, wearing some pink lipstick that was a give-away on a pop magazine, ignoring his joy while projecting her disdain. A relative who otherwise gets it writes in capital letters on Facebook that it’s time to cut our son’s hair that he has proudly been growing for a year. We watch TV shows full of happy families, see pictures in social media of friends on idyllic family holidays. Never mind exotic beaches, we can’t manage a meal out without a server having to bring us five extra forks because the ones at the table were all ‘bent’ – and by then it’s too late as our son is just not going to eat the sausage and mash we just paid for, no matter how hard the parents at the adjacent table stare at us. Yes, that was all part of our yesterday. Pressure comes at us from every direction as parents of a child who is different. Teflon skin apparently has its breaking point too.
Once something has given way under such pressure, there is no going back. You can sometimes patch things up, but not everything can be ‘fixed.’
It doesn’t always happen with an explosive jolt – like a kick landing on an already damaged bedroom door, snapping off its lower hinge yet again (that was two days ago). It doesn’t always happen with a swift snap – as when a new beloved hairdressing doll gets shattered when thrown down the stairs after a pretty amazing attempt at a fishtail braid gets muddled at the end (also two days ago). Sometimes the pressure just builds and builds outside us – like a diver going deeper and deeper. Even when they surface they just can’t breathe. The body has dealt with so much pressure for so long, they need help to function again in the ’normal’ (whatever that is).
Yes. There are pressures and forces outside us, within us that sometimes we cannot control.
Yes. There is no going back, only going forward.
We each have a choice. What do we do when ‘perfect’ is no longer attainable? The door is broken. The words were said. We are here, now. Where do we go next?
A friend who is an adult with FASD has the answer for those who are lost, confused, who don’t know what to do when the big emotions flow. Where there are no textbook answers for what to do next, she says, “Ask yourself what would love do?”*
Love would forgive – others, ourselves, society. Love would hold close and not push away. Love would embrace and find peace. Love would forget about perfection and revel in the joy that can be found in the here and now.
There is always a way forward. In that space after something has broken, there is always a choice. Accept the reality. Breathe deeply in that pause. And then? Choose love.
———— This post originally appeared on FASD: Learning With Hope.
*With thanks as always to Savanna Pietrantonio, Hamilton (Ontario, Canada) FASD Parent & Caregiver Support GroupandFASD: Flying with Broken Wings Facebook Support Group.