Jane Days (a day in the life #29)

It’s Thursday morning and the coffee is on. The clock reads ten to nine, time to kick it in to high gear. I whip in and out of the shower, give four medications thru the tube, start a new tube feeding, pour Cheerios (just one spoon of sugar, Noah!), comb the wet mop on top and clean the clutter in the living room. Just in time. Familiar knocking sounds at the door. It’s Jane and it’s exactly nine. Looking like she walked right out of the Talbot’s catalog she cheerily says hello to our gang while I grab a few gulps of coffee and try to look bright and fresh.

Jane walked into our home over a year ago as a home community educator with the Grand Rapids Public Schools. I wasn’t very excited to meet her. We’d just moved, the house was a mess and I was frustrated by the hours I’d poured into therapy with Calvin with almost no results. The first few weekly visits were hard. I was exhausted and wrung out, emotionally and physically. Calvin was unstable and I was more concerned about him surviving the next week than doing any sort of therapy to “move forward”. In my mind there was going to be no moving forward. After a year and a half of nothing I had come to grips that Calvin was never going to do anything. Anything. No rolling, no sitting, no head lifts, no hand movements, in summary no intentional movement. Looking for improvement was more agonizing than settling.

“Hello Calvin,” Jane leaned in close to Calvin. His head turned to her and his voice let out a long “aaaaaaaahhhh”. “You’re happy to see me, aren’t you?” she laughed and picked him up. “How are you today?” she’d say and then pause, always waiting for his response. “What do you say, how about we start with swinging?”

It always surprised me how purposeful and expectant she was towards Calvin. It was as if she completely ignored the ugly diagnosis on his progress sheet: Severely Multiply Impaired. To her it was just a boy, Calvin, with unknown abilities and desires. And she was determined to tap into those. I started to tune into the Thursday morning sessions a bit more seriously. The respect she gave Calvin demanded it.

Her entire demeanor was so different than anybody else that had interacted with Calvin. There was no pity but there was kindness. There was no settling but there was looking for more. There was no assumption that he couldn’t but an open air of expectancy that maybe, quite possibly, he could. She treated him with as much respect as you would treat a professional colleague. I gave Calvin love but I wasn’t sure even I gave him that level of respect, of dignity. It was beautiful and completely transformed the way we interacted with Calvin.

We began to implement the different ideas of exploration Jane opened for Calvin. We asked him questions and waited for responses. He answered. We began to see him as a child, locked in a body with no ability to express himself. We began to take his signals seriously, looking for patterns, tone changes, arm movements. We’d read books to Calvin and put his arm up to count the fish. Then ask, “Do you want to do that again?” His little wrist would rise up an inch off his lap and we’d finish the movement, assuming he was trying to communicate, “Okay, you told us, we’ll do it again!”

It is easy to become used to “what is” and never press for more. Never raise the bar of expectation. Jane shattered that idea in our house. One day she pulled out a cushion that vibrated attached to a switch. Every time you pushed the switch the cushion vibrated, Calvin loved it and would stare dreamily into space with his head tipped back as his feet were tickled by the cushion. There was no way he was going to push the button, I was sure. Over and over and over Jane would bring his arm and press the button. Calvin showed no response except for the smile on his face. We tried this for three weeks.

On the fourth week I was ready to pack the thing in and give it back. It was too hard, we were expecting too much. Fruitless work. Jane set him up again and repeated the same thing over. Bringing his hand, touching the switch, bringing the hand again. It was getting painful to watch, that lack of response, and I was thinking of suggesting some more profitable things to do. Then I saw it. Calvin’s eyes crossed in deep concentration, his brow furroughed, and lips pursed. With all the effort he could muster his arm rotated in a stiff circle and landed directly on the switch. I stared at Jane, she stared at me. “Let’s try it again,” she said. Calvin activated the switch again. He did it over and over again. I think we both wanted to cry.

These Thursdays or Jane-days, are coming to an end. Calvin will be starting school in September, boarding the bus in his wheelchair at the wee age of 2 (nearly 3). And that means no more Jane. I wish every child like Calvin had someone fighting for them, someone like Jane. Someone to take up the reigns when parents feel unable to do one more therapy session, try one new technique or carrying on with one. more. day. I wish every child had a therapist like Jane that gave them dignity and respect, an attitude so contagious it affects everyone’s actions around them. I wish every therapist would open doors of possibility no matter how many times the child hasn’t responded. It might just take one more time.

Programs do not change lives. It takes a person, a person with heart to make it real, to affect change. It takes a person who believes a child is worth everything and has intrinsic value, no matter how severe the disability. It takes a passionate and dedicated heart that uses knowledge to affect lives in real ways. These are the real helpers to families with disabled children. Thank you, Jane. Thank you for teaching us to get up and open the door one more time.