The Other Half of Caregiving

Caregiving splits into two halves — the physical labor the field has built infrastructure for, and the continuous, present-tense knowledge of who this person is that no instrument has ever held. These pieces are about the second half.

Essays in development.

The Convenient Myths

Three myths the industry and the broader culture propagate — each of which harms parents while appearing to honor them. These pieces name the cost.

I'm Not Allowed to Die First

Parents of loved ones with lifelong support needs often carry a private, unspoken belief: that they are not allowed to die first. This essay traces where that belief comes from, and why no field has ever named it.

Is There a Better Way to Write Down Everything About Your Child?

The Letter of Intent is the most universally recommended IDD planning tool and the least validated. 84% of parents never finish one. No study has shown it improves outcomes. The knowledge parents carry deserves a better format.

What Planning Is Actually For

The IDD field has been planning for the wrong event — preparing families for the parent's absence when what was needed was the reduction of the parent's irreplaceability while she was still present. The first work is contingency. The second is the plan.

Succession Was the Wrong Frame

The IDD field borrowed "succession" from trusts and estates law and built its long-term planning around a word that named the wrong moment. What families actually live is a transition — a multi-year transfer of judgment, knowledge, and relationship that cannot happen at a moment.

The Silo Problem

Silos are permanent structural features of the IDD service ecosystem, not defects waiting to be repaired. These pieces examine what actually holds instead of what the field keeps trying to fix.

The Silo Problem Is Not the Problem

The IDD field organized its services into silos and spent decades trying to connect them. The connection was never the problem — no silo held the whole person. Only the parent did. What was missing was not interoperability but a human continuity operating system.

Dual-Dream Advocacy

Parents are asked to hold two futures at once — their loved one's and their own — and told, implicitly, to plan as if only one is real. These pieces examine what it looks like to advocate for both.

The Parent Is Not the Plan

The IDD field built its planning instruments around a single unspoken assumption — that the parent would always be there. This essay names what the field never did: the parent was not the planner; the parent was the plan.