OT visits

When Alvin was assessed by the local Early Intervention team and qualified for Occupational Therapy, I felt a shift in how we were approaching his care. Instead of only palliative care, we were introducing therapy. Up until this point, our goals were to keep Alvin comfortable and stabilize his health as best we could. Now, we were expecting him to gain skills, to actually see positive changes instead of simply delaying negative changes. I was both nervous and grateful for this new approach.

Wednesday afternoon at 2 o’clock was our weekly OT session. I would put Henry down for his nap after lunch, and the house would quiet and the afternoon seemed to slow. Alvin would usually be resting on a blanket on the floor, watching me as I put away the lunch dishes, swept the floor, and vacuumed the rugs. When the house was clean, I would settle down on the floor next to Alvin, to hold him or feed him his bottle as we waited for Erica to arrive. I would dim the living room lights, pull up the shades on the front two windows to let the afternoon sun warm the room.

Erica always spoke in a lowered voice when she arrived, sensing the quiet stillness that Alvin and I were enjoying. She was both warm and professional, friendly but calm, happy to speak and happy to be silent. Alvin adored her. He was quick to smile at anyone, and loved when the conversation was directed towards him. But with Erica, there was something else. He could be restless and fussy during the day, but when she arrived he would be all smiles. He chattered and squeaked and hummed more when she was around. At the end of the session, his eyes would often be fixed on her as she sat nearby, writing out a visit summary of our afternoon.

Erica and I sat, cross legged, on either side of Alvin on his blanket on the floor. I would support Alvin’s back as he sat in front of me, while Erica enticed him with a rattle or ball, holding it above his head, moving it from side to side, or placing it on the floor in front of him. Alvin was eager to reach for his toy, stretching his arms and twisting his fingers around the edges. Erica made note of and praised all his small improvements; moving a toy from his left hand to his right, shaking a rattle up and down, holding a block with both hands. She taught me to look beyond Alvin’s obvious physical weakness, to study each movement and gesture, to delight in his nimble fingers and flexible wrists.

I learned to guide Alvin to the floor, to cheer him on as he strained to roll over, to give him just enough support on his lower back to help him be successful without taking away his sense of accomplishment at the ability to move his own body. Alvin seemed to be getting stronger, and he was able to hold his head up for longer periods as he lay on his stomach. Then, in November, after a prolonged cough, his progress plateaued. He could still roll over, but he was reluctant to, and instead of straining for the toys outside of his reach he would squawk in frustration, and give up. I was disappointed, and Erica didn’t deny that he didn’t seem as strong as he used to. She shifted her focus to his fine motor skills, encouraging me to guide Alvin’s hands as he hit two blocks against each other, or slapped at a book as I read to him, learning about cause and effect and his own power to create sound. Erica assured me that all these developments were precursors to waving and clapping.

I started to tell Erica observations about what Alvin had done that week. His little croaky voice saying “mama” while I sat eating breakfast. The way he shook jingle bells in time with the guitar chords that the hospice music therapist played for him. How he seemed to be doing better with eating the pureed peas I fed him. And Erica was always interested and delighted. She called Alvin “sweetheart” and laughed at him for always chewing on the toys she was trying to get him to reach for.

Those Wednesday afternoons, I didn’t think about entertaining Henry or cleaning the house or what I was going to make for dinner. All I thought about was Alvin, and how good it was to sit with him and be in his company. I studied him more closely than simply assessing whether he was happy or hungry or cold or tired. I noticed every movement and gesture, I calibrated each challenge to just beyond his comfort level, I praised every success and comforted him when he became too frustrated. And Alvin loved it. Under Erica’s coaching, that hour each week was completely our time together. It is one of the experiences I will miss sharing with him the most.



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