Sometimes at my places of work/volunteering/learning I have taken entire days of what has been a kind of blissful quietness, observing not only the people we serve but the people who do the serving. There’s something almost sacred about the dynamic between a good support worker and their charge, even if it’s just for that one day. I’ve seen it hundreds of times, now. The support workers can sometimes be a bit underengaged (I presume they’re a bit tired? A bit complacent? Or perhaps not educated on the importance of eye contact, etc?) but most of them are fantastic and I am particularly interested in their communications with their clients. It’s a constant cycle of feedback, not always at a happy equilibrium, sometimes fluctuating with sadness or overwhelmed senses or distress, and then with some clever de-escalation it goes back once more to equilibrium. This fluctuation of course depends on how things are at home, hormones, medication, other participants, weather, noise… it could be anything. Sometimes, we will never know what “sets off” someone’s distress and yet we find a way to manage it as well as we can. There are so many variables and some days are chaotic.
But one thing is always constant: the need for fully engaged senses, minds, bodies, hearts and opportunities. Conversely, people left understimulated and unchallenged and unattended-to will fail to thrive. I’m not happy at work when I see a client being left to sit in his wheelchair without anything to do and nobody to talk to. Not even any sensory input to enjoy. Just in a room watching the other kids. He just needs opportunities to have a bunch of little learning opportunities and interactions every day and our wealthy society “can’t afford” that? He has to be assigned in a 2:1 semi-neglect situation because of MONEY? The more active client will get all the attention to keep them safe, and the client in the wheelchair is forgotten unless they begin to wail from unhappiness. That’s the reality. Actually, I’m not just unhappy about that. Let’s not beat around the bush there. It angers me and it has angered me for a long time now. I’ve cared for this beautiful 18 year old child on a very personal level and observed the state of his little body. Client/worker ratios are a load of crap. It’s about covering the arse of the disability services and making sure nobody dies. Not about what’s best for the clients. But who’s gonna pay for a 1:1 worker for everyone? Whose problem is that to solve? The government? Charities? Families? Millionaire adventure balloonists? Nobody wants to/is able to pay for it. Then the individual’s health goes downhill, their behaviours and care needs escalate and someone’s gotta pay for that secondary problem. Our priorities are all backwards. It’s the same in aged care.
We have to imagine the people we serve having voices:
“If our carers or support workers are disengaged or denying us opportunities to learn skills, push our physical or cognitive ability and experience the full range of our senses, we cannot thrive! We like challenges, too! We don’t know that services are expensive and it’s not our fault we cost money to care for. Just give us our human rights for the mere fact that we are human beings.”
It’s the days I spend volunteering that I am best able to observe as a student, because I haven’t been officially designated a program participant; I can just stick around with someone and do the thing they’re doing with them, or just drift between various people and activities. I’m always amazed at the swift transition taken by both support worker and client as the new day’s activity begins, even when neither have met before. Most of all, I am impressed and humbled by the positivity with which the majority of our clients embrace that day’s new arrangement. It’s such a position of trust that most people wouldn’t usually consider within days of meeting someone, let alone minutes. In a way, the routine of working with respite services has developed an unnatural dynamic between the person needing care and the array of faces they encounter in any given week. They’re expected to trust the person assigned to them by the service. May we all be deserving of that trust.
I dig a little deeper than others in my conversations with our participants with respect to what makes them tick, how they see themselves and their environment, and what they enjoy or wish to experience in the future. Every last one of them loves to have those conversations. I think my boss finds it pretty fascinating, too. Conversations with people with intellectual disabilities can become a “loop” and it helps to have a bit of neuro knowledge to back you up in those situations. Mostly, though, it’s a matter of that one-on-one time, taking time and effort to familiarise yourself with your client and what happens if they’re happy, sad, angry, distressed, bored, or if there’s a problem, such as in the early stages of having a seizure. In any case, it’s always an honour to spend time in their company and be responsible for their care.
By having such conversations I am also carrying out part of our mission; to provide a safe and welcoming environment where participants can exercise their social skills, also exercising things like gross and fine motor skills, speech, vocab, learning potential work-ready skills such as following instructions, working as teams, caring for animals, horticulture and cookery, and then there are distinctly social skills like making and keeping friends, and learning what is and isn’t appropriate behaviour in social settings. The garden is a very “yes” environment. If I see someone wants to have a go at something or learn a skill, I think of all the ways I can to make it happen for them. One day, their parents won’t be there anymore. They need this learning (and sometimes motor/physical strengthening) process to start now.
It’s a really holistic approach, it’s been incredibly successful particularly in the Food For Thought program, and I’m really proud of the work we do. It’s been developed over many years combining a few different disciplines and it’s easily adaptable according to what we know about our visitors. They love it. To be honest, I love it too. I like to crush a kaffir lime leaf or some mint to let a visitor smell the aroma. Their reactions can be hilarious; sometimes horror (as with people on the spectrum) but mostly a kind of silent “wtf was that?” after which they go back for another sniff and possibly grab the leaf from me (that’s my favourite reaction).
I also like to pick up a quiet hen and place a visitor’s hand upon her soft feathers. For one such visitor who comes to see us on her snazzy red scooter, the sensation and perception of the entire scenario brings her to life, and her hand may be initially quite limp in mine, but I see her face transform as she catches her breath and her formerly inactive hand becomes momentarily rigid in places, then her fingers begin to turn downwards and upwards in a slow, shallow kind of wave, and she attempts to stroke the little chicken. Her thumb doesn’t really have a centre between itself and the other four digits so in that way it’s a bit like dyspraxia because the orientation of her hand is unknown to her. But she certainly is perceiving that sensation of the soft feathers, the little warm body beneath, the gentle twitches as she turns her head, the fragility of the life she holds. I know because her entire body is telling me she is filled with joy. She’s participating in that interaction with the animal, and feeling a part of the group experience, because we’re ensuring she’s given an opportunity to sense, touch, participate. And suddenly, for the first time in forty-five minutes, I get some eye contact from her. She can’t tell me with words that she is overjoyed with the contact with the little animal. But she responds to it all the same. She needs no words. The incorporation of all of the senses in the experience – in any experience – adds lasting strength to the cognitive processing of what’s going on and it enriches the moment for anyone, not just specifically people with disabilities. I think we have a lot to learn from our clients about how to really savour any experience. But I had to remember to offer her the chicken to begin with.
May I never forget to offer people the chicken.