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The adage that you don’t appreciate what you’ve got until it’s gone is so true. Every day, we perform many tasks subconsciously--and take them all for granted.
Matthew had motor apraxia. Motor apraxia is difficulty with motor planning, an inability to perform a requested task or movement, even when the individual understands the task and is willing to try. Matt wanted to, but his compromised short-term memory and comprehension further restricted his ability to comply. It didn’t matter how often we explained step-by-step what he needed to do; Matt struggled to perform the task. Until then, I did not fully realize how many steps were involved in the most basic activities, such as brushing one’s teeth or taking a shower, things we do automatically.
When our children were young, I sometimes felt exasperated when one of them didn’t catch on or gain proficiency doing x, y, and z as quickly as I thought reasonable--activities that should have been no-brainers. As a small child, two particular activities did not come intuitively to Matt. The first was, “Matt, you need to raise your arms overhead so Mommy can help take your shirt off.” The second was, “If you want me to open the car door to get in, you can’t stand in front of it.” Now, in comparison, faced with relearning every aspect of life— the process back then was easy-peasy and the learning curve relatively short. I longed for it to be that simple again!
Activities of daily living, such as self-care, are a finely tuned synchronization of big and small movements, those in the direction of the intended task, and those behind the scenes that offer counterpressure and stabilization. Much like in an orchestra, if the background accompaniment is behind the beat or flat, the slightest change in a movement sequence can alter its quality or cause it to fail altogether. Matt’s motor apraxia felt like a hidden prankster bent on foiling best intentions.
When he started feeding himself, it often took him an hour to finish a meal. Matt would put the fork down on the plate, may or may not have put food on it, and may or may not have attempted even to put it in his mouth. The fork made many empty trips to his mouth or stopped midway only to return to the plate. Because of his poor peripheral vision on the right side, he often missed food or inadvertently pushed pieces off that side of the plate. Early on, his meals were precut, but eventually, he had to do this himself. It wasn't easy to manipulate and coordinate the sawing motion of the knife using his right hand while simultaneously stabilizing the food with the fork in the other hand.
When he first came home, we did much of his self-care. It was tricky to shave his face or brush his teeth. Matt’s head moved away from our pressure—so much so that we had to stabilize his head and his body to prevent him from falling backward. His body did not remember that he had to apply counterpressure equal and opposite to the force we used. Likewise, when donning pants or putting on socks, instead of pushing his foot into the item as we pulled up, our efforts lifted his leg.
I naively set a six-week goal that Matt would be able to perform what I thought was the simple task of brushing his teeth—wrong! Did you know that there are 25 steps involved in brushing your teeth? Find the electric toothbrush (oh my gosh, you would have thought we moved it on him every day), find the toothpaste, open and squirt it on the brush . . . wet the brush . . . raise the electric toothbrush, open your mouth, brush teeth in all directions, hold your chin up . . .spit into the sink, turn on the water . . . rinse your mouth . . . wipe your face clean, rinse the toothbrush, and finally, put the toothbrush away. It was a long time before Matt could do this without supervision--and more so before he didn’t wear toothpaste drool down the front of his shirt.
For some time, taking a shower was an experience. Standing outside the curtain, Mike and I did our best to reach inside and squirt liquid soap or shampoo into his palm. It wasn’t as simple as one might think. It was like chasing a moving target as his hand moved into or away from the squirt bottle--forcing us to hold his hand still with one hand while squirting with the other. It was almost impossible to stay dry. Octopus arms would have helped to coral all the moving parts.
Just as with brushing teeth, there are many steps to showering. We broke this task into subgroups: undressing, starting the shower, bathing, drying off, getting dressed, and putting everything away. As he gained some proficiency in one sequence of steps, we moved on to the next set of tasks. The last step was wiping the shower down, draping the shower mat over a rail, and the terrycloth mat over the tub edge. Matt's shower time gradually decreased from an hour to 30 minutes and finally to 20 minutes without help, and I, for one, was glad to regain that chunk of time.
Scooting Matt’s chair under a table was another major ordeal, especially on the carpet. His job was to place his elbows on the table and lean forward. Standing behind him, I grabbed both sides of the seat and lifted while simultaneously using my torso to force his weight forward over his feet long enough to push the chair underneath him. It took repeated efforts to get him close enough to the table.
Unlike in normal childhood development, the strategies and abilities Matt learned in one situation did not transfer to the next task. Each task had to be learned from scratch. There was no sequential learning. Everything took verbal or physical cueing, practice, repetition, repetition, and more repetition. At last, on June 8, 2019, 16 months after his injury, I journaled, “Matt can get in and out of bed, walk, climb stairs, scoot his chair under the table, shower, dress, brush his teeth, shave, get ready for bed, load/empty the dishwasher, make a salad, and operate the TV control, all by himself.” Simultaneously, as we celebrated each acquisition and checked them off the list, we were already queueing up another skill to address. There was just so much for Matt to onboard, and no end was in sight.
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