The three and a half years since we were told that Sacha had a rare genetic disorder have been an intense ride, from the incredible wave of solidarity we felt when we first told friends, family, colleagues and comrades, through rounds of intensive therapy, breakthroughs and set-backs. Covid intervened along the way, sending Sacha spiralling…
Author: Rob Lucas
Let’s get Sacha’s therapy going again!
It’s been a hard year and a half—our hardest so far with Sacha. Covid-19 brought his main therapy programme to a halt and we had to cancel one block of intensive therapy after another. As we entered the winter months, and through lockdown, Sacha withdrew into himself. He grew increasingly anxious and apparently frustrated at…
Speech Therapist Wanted
We are looking for a dedicated and passionate speech and language therapist who can commit to working with our 4-year-old son Sacha for one hour every morning, Monday to Friday, for the next year at our home in Hanover, Brighton. Sacha has a rare chromosome condition—2q37 deletion syndrome—which affects him in many ways. While he…
Notes on oromotor control
If I had the detachment of another person who wasn’t Sacha’s dad, I would probably find something fascinating in what his difficulties might reveal. There is a lot that is profound in child development, and one sees that all the more clearly when it cannot proceed along the typical paths. One can see why Piaget…
On “developmental delay”
These days the word “retarded” is a simple term of abuse. Not so long ago it was a relatively “politically correct” term for intellectual disability, which replaced another set of nominally scientific categorisations, which themselves had become terms of abuse: idiot, imbecile, moron. These terms of course persist to this day as acceptable language, rather…
Sacha fund 