James needs substantial support in daily life. Support helps him stay safe and take part in things he enjoys. But I have begun asking another question alongside “How much help does he need?”: Does the way we help leave room for him to choose, learn and influence what happens?
Agency is not the same as doing everything independently. A person may need help to move through the community, communicate or complete a daily task and still have preferences that matter. Dignity also lives in small moments: being given time, having a refusal noticed, being offered a choice, receiving help without having every action taken over.
These decisions are not always easy. Safety matters. So do exhaustion, limited resources and the realities of high support needs. I do not want to pretend there is a simple answer to every situation. I want us—including me—to stay curious about the effects of what we do.
Research on everyday harm has helped me ask these questions more carefully. The researchers studied young people with cognitive disability and paid support workers, finding that ordinary actions and missed opportunities can affect a person even when harm was not intended. I use their work as a prompt to reflect on our own decisions; it is not a verdict on James’ life.
I also wonder about learned helplessness—whether repeated experiences of having things done for James, or too few chances to try, may have reduced his opportunities to act for himself. It is a question that asks me to offer appropriate support while noticing where he might take a part, make a choice or learn a step.
I recognise something similar in myself. Over time, I became less confident in my own parenting judgement and leaned heavily on professional support. I needed help, and much of that help taught James valuable skills. But I also want to regain the confidence to try things with him, observe what happens and make thoughtful decisions as his mum. James’ agency and mine are connected; both of us need support that helps us act, rather than leaving us waiting for somebody else to know the answer.
In Reframing, rewiring and repair, I wrote about moving away from battles over behaviour and towards presence, autonomy and connection. I am still learning what that looks like when James also needs clear boundaries and practical help.
My aim is to offer the support James needs in ways that make more of his life available to him. That includes safety, communication, privacy, relationships, learning, pleasure and the possibility of making a different choice tomorrow.
