While parental expectations for a child's autonomy and independence are lower than those for an older sibling, both children's development is equally recognized and celebrated. Matt was in the early stages of rebooting and integrating his core cognitive functions. Some internal structures were still awaiting parts, wires, and repairs, while others were queued for loading, calibration, and testing. Subsequent steps would include conducting preliminary trials, making necessary modifications, and eventually going fully live as a complete operational framework—at least, that is how I imagined this incredible process unfolding.

Last year, the ability to brush his teeth from start to finish had taken three to four months. A tougher assignment appeared to be the simple steps of gathering items to set the table. This exercise involved multiple steps, and the necessary items were scattered: milk and butter in the refrigerator, salt and pepper in a cupboard, and the silverware and napkins in separate drawers. At best, he could recall the location of a few objects. Beyond that, he required prompts or explicit directions, and the level of support needed varied greatly from day to day. Often, he’d place his hands on either side of his head, commenting, 'I know this…' or simply stand still with a perplexed expression. My heart wept with compassion. Unable to aid him further, I offered patience and time. The final irony was that once Matt finally had everything in hand, he set the table easy-peasy.

Looking from 20,000 feet above, eight years later, and no longer in the fray, it’s easier to understand the nuances of his struggles—yet back then, it was mind-boggling. We noticed that Matt’s internal notification network wasn’t providing vital cues; it no longer told him to sit up straight, to extend his knees as his heel struck the ground, or even to clear his throat. To compensate, we provided external prompts to replace these missing sensory signals. In some cases, we were able to bypass the damaged circuitry by directly nudging his knee into a straightened position—without saying a word. Or, for instance, since Matt couldn't distinguish left from right, simply touching the intended limb was more effective than a verbal instruction.

To correct his gait, we hoped video clips of him walking would provide visual input to help reprogram his malfunctioning circuitry, but it was too much to ask. That kind of extrinsic data required greater capacity than his brain could manage. It involved a gauntlet of complex steps: interpreting audio-visual signals, converting that information into motor commands, and executing a synchronized effort. The hardest part of all was the final step: saving that data for the next occurrence.

As physical therapists, Mike and I understood that no skill is mastered in a vacuum. Therefore, we creatively expanded Matt's daily responsibilities, anchored in consistent routines. These naturally incorporated and challenged basic executive functions. Our labor, undertaken over an extended period, was rewarded with simple signs of growing self-awareness and problem-solving skills.

By June, Matt showed his ability to plan and complete several task sequences without any outside prompts. He established his entire bedtime regime and chose when to go to bed. This self-management quickly spread to his morning care, where he handled showering, dressing, making his bed, tidying the bathroom, and even preparing his own breakfast of cold cereal and juice. In late July, we saw a further shift in Matt’s ability to understand and follow instructions. After his shower, I suggested from the next room that he turn on the exhaust fan and plug in his electric razor—items he completed without a hitch. By September, he was consistently following cues, such as finding items in the kitchen or squeegeeing the shower, without reminders, showing that the instructions were sticking. But even then, it wasn’t foolproof.

But the strategies used to embed these skills into daily habits weren’t always successful or carried over to other situations. It was not intuitive to Matt. Sometimes we had to beat the pavement harder and longer—or, think frequently outside the box. Like scientists, we carefully studied, extrapolated, and experimented. We learned that in some situations, progress came more readily once we found a behavioral trigger. Case in point. For over six weeks, we had tried to find a reliable cue to remind Matt to put his phone in his pocket, such as pairing it with his daily morning medicine, without success. Finally, in January 2020, a simple modification was suggested: have Matt pocket the phone immediately after putting on his watch. This particular, already-established pattern proved the powerful connection that did the trick.

Therefore, Peggy’s revelation about the importance and intensity of home programs is only one part of the equation. This breakthrough encouraged us to think more broadly and explore how to identify a logical sequence of actions that leveraged preexisting behaviors. It's important for everyone to remain open and flexible and add this strategy to their toolbox.

By January, that elusive 'click' finally happened. The phone went into the pocket, the watch was on his wrist, and a new neural connection was forged. It wasn't just about a phone; it was proof that Matt's brain was no longer unresponsive to user input. Using the routines we had painstakingly built, Matt’s brain was methodically finding ways to bypass his injury and take shortcuts. Each hard-won acquisition sidelined his dependence on others, systematically updating his hardware and caches, while teaching him how to navigate and send mental signals again. Together, we are fixing his downed mainframe to reliably handle more complex skills.

© 2026, Sarah Watkins