How do you know?
It’s a question I’ve been asked more than once. It’s an answer I’ve tripped over, struggled to articulate. One I’ve clumsily tried to explain, usually ending with a shrug and a resigned ‘I just do.’
It’s a valid question, usually from doctors. It has an impossible answer. How do I know when my non verbal, disabled child is in pain? How do I know he isn’t sad, or angry, or just….well, being five?
But I know. I really know. And I have a responsibility to get it right.
It’s a responsibility that haunts me, scares me. Keeps me awake at night. Because I know that the older he gets, the more important getting the answer right will be. That my child is no longer a baby. That the day of angel faced cuteness are slipping away, giving way to a surprisingly robust, but endearingly fabulous little boy. When he arches, kick and screams, the implications of wrongly classing pain as ‘behavioural’ will become more significant. Getting it wrong is just too heartbreaking to even consider. I need to be ready to explain.
And I have reason to worry about pain making an unwelcome appearance. Intermitted episodes of pain have been a recurring theme. They have peppered our little boy’s generally happy and cheerful existence with moments of darkness. As a baby, we knew. He cried non-stop. His little body would tense, his face would turn red. The cry was different, panicked. But we were first time parents, caught in the non-specific catch all world of ‘colic’. We hoped it would change over time. Hoped it was something simple that would ease the older he got.
It didn’t. It became significantly worse, at six months old turning to full body, painful dystonic spasms. His arms would twist, contort and lock. His body would shake. We would watch, helpless. Google, fearful. With the help of an amazing neurologist, we finally gained control. But at night, the pain still lingered.
But I admit, I started to wonder. We could be wrong. His development had halted, with emerging sensory processing issues. What if these were actually ‘behaviours?’ What if I didn’t understand my own child? Then at 2 and a half, everything changed. A doctor intervened with a ‘worth a try’ medication to control gastric spasms. The crying stopped. The behaviours stopped.
I can’t overstate the impact of that change. On every single aspect of our lives. We owe a huge debt of gratitude to the doctors involved. For listening, supporting and not giving up.
But now, when I meet someone new. How do I explain? How can I be clear that whilst, yes, we have control, there are occasional moments when those days start to creep back. That, yes it may just be an ‘episode’ of pain every few days, but that we need to recognise it for what it is and pre-empt it. Because we can’t go back there. We just can’t. We won’t.
I am also coming at this from a fairly simple position. I don’t have that much to unpick. My son doesn’t have significant behavioural issues. He just isn’t there yet. He hasn’t hit that developmental stage. He doesn’t know how to throw a tantrum over the wrong shape of pasta, or because the rain isn’t wet enough. Bar a minor grumble and unintentionally cute ‘sad face’, he doesn’t object to stopping an activity or letting go of a toy. In fact, having recently learned to pass objects, he is an obsessive sharer. He’ll give you everything he has and throw you a smile and clap at the process.
I know there will be families out there coming from a more complex standpoint. Having to explain the difference between behavioural distress and painful symptoms. I am also not naïve to reality. This may well be us in the future. My son has a undiagnosed genetic condition and an unknown prognosis, but thanks to the right medications and interventions, he is making forward progress. Objection is part of learning. Part of developing a sense of self. He will find his own ways to communicate his displeasure. One day the rain simply won’t be wet enough – and I’ll need to recognise it for what it is.
But to those asking the question, be it doctors, other professionals. I would ask just one thing – use me as to your advantage. Feel free to ask the questions. Because parents of complex,non-verbal children are your greatest ally. We are translators. We have more experience in this role than in anything else we have ever done. We have completed lengthy emersion training, with some particularly challenging advanced night time modules.
I used to bristle when I was asked ‘How do you know?’, or when it was implied. Because of course I think ‘I know’. But I have now come to realise there is something much worse – not being asked. Not having that conversation, or working together to understand the child at the heart of it.
The single greatest thing any doctor or professional can do for us is to ask the right questions and listen to the answers. To treat us as partners in this journey. To ask for our interpretations and translations; because learning to communicate with this funny, endearing, loving little boy is both my greatest challenge and most enriching achievement. We don’t have words, or signs. We have nuances, expressions and subtleties that are crystal clear to those in the know. I’m still working, but like most parents of disabled children, I’m learning more every day.