UNFAMILIAR

Often people who don’t know Isaac mistake his grimacing angry sounds for smiling and happy vocalisations. For the people who know him well this can be frustrating – why don’t people understand him like we do!? Isn’t it clear that when his forehead has that slight crease and his eyes look that little bit more strained than usual, he is unhappy? Can’t they tell that when his excited humming reaches just that bit too excited, he is overstimulated and possibly even in pain? Isn’t it obvious when he is zoning out of an experience as opposed to actually being sleepy?

Okay, so maybe it’s not fair to expect someone who doesn’t know Isaac personally to recognise these things. So, we explain and try our best to give people interested in Isaac thorough explanations of his behaviour and communication so that they can understand him better.

Sometimes people are put off by our (probably overly extensive) explanations. I can feel people thinking that I’m being overbearing. But it’s so hard to be succinct when Isaac’s behaviour can be so complex! And we never want to generalise an explanation which may not be true in all contexts. I used to go with ‘high pitched sounds tend to be negative, low pitched sounds tend to be positive.’ But recently Isaac has developed a low-pitched sound relating to pain. Would this go unnoticed with people who don’t know him well? I’d like to think not because the sound seems so obvious. But if I’ve told someone unfamiliar that low pitched sounds are good then who could blame them?

Don’t get me wrong – I’ve been on the other end. I remember working with a young lady in a day service setting. One day she suddenly became what looked to me like agitated, hands and arms flailing, breathing heavily and jostling herself forwards and backwards. I tried my best to use a soothing voice, to help to calm her down and let her know I was with her, worried that this was possible seizure activity. Only to find out from her home carers later that this was her way of expressing joy and excitement! And there I was shushing her, stopping the activity and just generally killing her vibe. I felt awful and relieved. And then more awful when I realised, I’d been working with her for months and this was the first time I’d seen her that happy. And then even more awful thinking about what the home carers must have thought of how she spent her time with us if that was her first joyful outburst.

Similarly, I remember Isaac attending a day centre for a number of weeks, when the staff were suddenly concerned and asking Isaac if he was okay. Maybe he’d finally adjusted to the environment or something exciting or interesting had happened and he’d let out a loud bellowing ‘hmmaaaaaahhhhmmm’ beating his chest in glee. I realised that these people had never really heard Isaac happy and content before. They thought that his screamy, angry, noisy demeaner was his normal. How sad! He is such a wonderful person to be around and that representation did not do him justice! But it’s also scary for us. Most of those staff would have read a communication passport for Isaac, but without one of his home team they seemed to have assumed his upset was his normal. Would he have been comforted, offered familiar entertainment or communicated with to try and help him adjust to this new environment by people who didn’t know him? It seemed more likely that people became accustomed to hearing his distressed sounds.

I guess my point is that you can’t learn familiarity with someone, it takes time and patience and understanding. We can never assume familiarity before meaningfully developing it and it is always better to discuss and question our interpretations. Most importantly I think about how familiarity is a two-way concept. Generally speaking, staff in this field have the best of intentions. But all Isaac knows is that he doesn’t know you yet. He doesn’t know what to expect from a new person, and sometimes the rules that apply to the people that know him well don’t apply in wider scenarios, which must be very confusing and distressing for him. We need to value the insight of those most familiar with the people we support, whether that is family or staff. The most valuable thing you can do for Isaac is genuinely try to understand him.

Rebecca Downey

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