By Russell Clarke, Interaction Practitioner
In October of last year, our 16 month old son, Theo, was diagnosed with ulcerative colitis, having 6 weeks previously been rushed to hospital with severe anaemia. He hadn’t been absorbing the nutrients from his food properly, possibly due to some kind of allergy. We lived with Theo for seven weeks in hospital, diligently following a course of treatment that included various medications and formula feeding, through a nasal gastric tube, as we learnt from the nurses what we would need to do on our own at home. We had to suddenly deprive him of all food and breastmilk. We left him on operating tables surrounded by surgeons with tears streaming down our faces. We took pictures of endless bloody nappies and prayed for a reprieve.
Gradually, hospital became home and all the medical paraphernalia necessary for his day-to-day treatment became Theo’s favoured toys. He ‘clicked’ with some of the more regular nurses, having regular verbal to pre-verbal jokey exchanges. He began to yelp with excitement when we returned to hospital at the end of a walk. He learnt to wave goodbye quickly with a constant flow of visitors and shift changes.
Joy and grief lived side by side, often jostling for space as they constantly interrupted each other. Friends and family brought us regular meals and gave us little breaks. We met other parents and siblings of patients, some who were only staying for a night or two, some who had been living in hospital for up to a year!
To keep his nasal gastric tube in his nostril, it had to be taped to his face. At the start, Theo continuously rubbed the tape off his face, sometimes pulling the tube out and needing it replaced caused much distress. Over time, he began to accept the tape and attached appendage as if it was supposed to be there. At the end of the tube was a plastic screw nut that connected with the tube running from the formula machine. Theo had always had a fascination with objects that screwed together and began to hold this like it was part of him, especially at night time when he would go to sleep holding it. And would scream and cry if anyone tampered with it. The equipment that crudely prised him from an intimate connection with his mother had become a source of fascination and reassurance.
Theo’s intimacy with this little object set me thinking about the needs of the people we support, in particular the emotional need they are fulfilling by interacting with an object.
Is this not the start of communication outside of oneself, an effort to interact with the environment? It seems to be an action that says ‘I am not enough on my own, to know I exist I need to affect something outside of myself.’ (For a humbling insight into this, see Amanda Baggs’ film ‘In My Language’ on You Tube). Many of the people we see move with (or without) an object in a seemingly repetitive way, at times throwing in the odd variation. But what this does not take account of is that the object is feeding back continuously. Take S as she walks up and down the corridor, flicking her flannel and at times sucking on it. As often as S flicks the flannel, the flannel flicks back and readily absorbs the smell of her saliva and wafts it back in her face. What a wonderfully responsive and accepting interactive partner! But to have so many of her basic needs met, S needs to come into contact with people, and of course would prefer it if this contact were tolerable, even enjoyable. To do this we need to make ourselves safe and interesting. First of all, looking at what it is about us that S finds threatening, and minimizing it. Then simply doing what S is doing with our own flannel (we don’t need to suck on it), is like an initial ‘Hello’. When the time feels right we can bring another element into the conversation, like singing a melody to complement her movement. We are really only limited by our imagination how we can give S some meaningful feedback that she might enjoy, and we’re still discovering new ideas with people we’ve been visiting for years.
Theo is back at home now, still on medication and formula, but getting stronger all the time, and bleeding only occasionally. Interestingly, Theo held his feeding tube much less when we returned home. It seemed to fulfil a need for him when he was feeling confused about where he was and why he was there. If an object like this can be this important to such a highly social child as Theo, how vital are the objects belonging to the people we support to them? We need continuous reflection on how we can make human interaction at least as if not more fulfilling as interaction with an object, and in our ever more technological society, that goes for all of us.