Carry On

Each day is a story. Inside each day there exists a plot, as well as a sub-plot or two by the end of it. Each has a cast of characters, a beginning, middle and end. Somewhere in the rising action, a conflict presents itself, or perhaps a question is asked, and the author of the day attempts to resolve the conflict or to answer the question as best she can. On this day, the story is about how and if I can finesse a happy ending.

The main character is twenty-eight-year-old Cliff, my son, who is mostly like every other human being God made. He has preferences, opinions, people he loves and people he tolerates. His list of favorites includes egg sandwiches, music, dancing, his room, his family and his best friend Seth. He has routines, a full life, and the best laugh I've ever heard. He was born with a third copy of the number twenty-one chromosome, a condition that has rendered him...amazing. But he depends greatly on others and is unable to speak more than a few words. Unless he's singing.

 
As the story begins, I sit next to Cliff with my notes in front of me at his yearly ISP meeting, mangling my cuticles under the table as I smile at the four women assembled there to discuss his progress. My younger son accompanied me today at my request. With my husband busy at his office, Max is the logical stand-in.  Max is twenty-two and the second of my three children. The four women are people who spend many hours with Cliff during the week or have an official capacity within the organization. They are kind people, and they maintain a fondness for him. But they will talk about Cliff as if he isn’t there, as will I. It can’t be helped-- he is not capable of entering into the conversation, except for the occasional yes or no answer to questions with obvious answers. “Cliff, you like to go swimming, right? Cliff, it’s fun to come to work, isn’t it?”

I would prefer it if he wasn’t sitting in this small office, captive and bored. But he is legally an adult and it’s his right to be here. Therefore, no one has asked my opinion despite the fact I am his mother and legal guardian. The vans have already left to bring the others to their respective jobs or activities. If they had given Cliff the choice, which is also his right, he would most surely have chosen to be anywhere but here. I pat Cliff’s hand and make funny faces at him to make him laugh. There is no good reason for him to sit here with nothing to do when he should be off somewhere with his co-workers.  He and I are both tired of the rules. If you happen to be born with one more chromosome than most other people have, the rules can become tiresome.

Until the meeting gets underway, everyone indulges in small talk, prompting Max to sit still in his chair hoping he won't attract attention. I had promised he wouldn’t have to say anything; I meant that he would be an observer,  because I want him to learn what occurs at an Individual Support Plan meeting.  Try as he might  to make himself unobtrusive, the women are curious about where he went to school, what he studied, how he feels about being invited here by his mom. I feel his discomfort—we are very much alike—but I love to watch him good-naturedly respond to their questions; like his big brother, he is handsome and charming.

I don’t have to pay full attention in these first moments, and my thoughts drift off. I rearrange my notes and I think about being thirty-nine.  At thirty-nine, I made the decision to become a runner. I wanted to lose weight. Though I was initially motivated by vanity, I became addicted to the way it felt to become lost in thought, immersed in the calming nature of  sunbeams streaming through the breaks in a canopy of trees overhead, It felt peaceful to watch the way Autumn breezes moved leaves around in circles in the road, to catch the scent of freshly-mown grass, feel the chill in the air, even the pelting rain. Running made me happy. When my knee gave out last year, there followed months of physical therapy, then knee surgery followed by more therapy, and the pain moved beyond the physical. The reality was I was no longer a runner. It prompted periods of deep sadness that crept in like fog, and I didn't feel strong. I felt old. It felt a little like someone snatched the seat I was heading for during a game of musical chairs. Celia... you…are…out.

Cliff has been in this program since 2007 when he aged out of the Franklin Public School system. Two days a week he works for a small paycheck; three days a week is spent at a day habilitation where he does volunteer work, gets occupational and speech therapy and plays games. The two programs complement each other, but today our story centers around the two days a week he is here with the friends he made while he was still in school. Until two years ago, his paycheck came from a job he had in a high school cafeteria. When his position as a cafeteria worker was eliminated, the program coordinator had a difficult time finding him other work for which he was skilled. It hasn't been easy, due in part to the lousy economy. It affects the program as well as businesses who are unable to hire extra people. No one is immune. This is why each meeting since he lost his job has an elephant in the room. They dance around the topic because they know I want them to keep trying. It would be easier on them if Cliff went full time to the day hab. Cliff and I are against that plan.

Today, the director tells me, “Cliff is in a 1:4 staff to client ratio, but staff reports it’s difficult to keep him on task. We can’t provide him a one-to-one job coach due to budget cuts. (” Cliff is a “client”, which is program- speak for a person who gets services from the state. If I had the money, I would create my own business, hire Cliff and his friends, call him an employee and give him all the one-to-one he needs. But I don’t have the money.) Under the table, my knee twinges. 

Sometimes these “grown-up” meetings remind me of his school days, particularly those during which I had to endure the endless “can’t-won’t” statements. “Cliff can’t walk independently to the classroom; Cliff can’t focus on a task for longer than a minute or two; Cliff won’t look both ways when he’s crossing the street.” The statements would be delivered as if they were news flashes I wasn't already aware of. Despite my pre-meeting resolve to remain calm and strong, my voice would shake and I had to hold back tears.  I already know his limitations, of course; hearing them spoken out loud is like listening to the news in a looping news cycle-- just at the point of saturation it goes away for a time, only to return with new developments. Just when life has returned to a happy normal, someone reminds you it ain't over. And though you already knew that,some nuance makes it feel fresh again. It becomes magnified—Cliff’s main identity as our son, as Max and Olivia’s big brother, as a friend, a cousin, grandson, is usurped by his student- self or his program- participant-self. News cycles are notorious that way-- just when you think you’ve heard enough, suddenly we’re remembering the anniversary of this or that, and once again we’re struck by its significance.

As if the elephant isn't enough of a conflict, a second one enters. It’s an additional bone of contention lately each time we assemble for these meetings. “What we've noticed here at the program is the friends he followed from school to work--Alex, Meg, Molly, Matthew,--aren’t close with him anymore”, she begins, “so it’s not like they socialize together when they’re here.”  I think about running and my bum knee and the absence of leafy trees overhead.  Though I want to slap the table, I don’t slap the table. I pat Cliff’s hand instead, meeting his eyes, the part of this story in which the climax occurs. From somewhere outside myself, I find my voice. I am running down the road, my breath in measured huffs in sync with my footfalls.   

“Cliff may not socialize with them here," I begin, "but they are still important to him. They care about each other and I don’t think any of us is in the position to assume which people mean something to a person and which ones don’t. He has deep connections to both programs and he benefits from both. Please. It will be terribly disruptive to have him transition away from here completely.”

Everyone nods in assent. No one speaks. Max listens intently and I half expect him to say something in the silence. "Ok, then," says the case worker, "let's reconvene in six months."

Meeting over, my body seems to replicate the cool-down after a three-mile run, slower breaths, exhilaration. For now, nothing will change in Cliff's life.

This day's story has a satisfying denouement.  Cliff goes off to eat his lunch with the staff.  Max is mostly quiet as we leave in our respective cars; I wonder what he thought of his first advocacy experience. I hope he has begun to develop an understanding about the importance of speaking up for what his brother needs, wants, and deserves.

When I get home, I change into my workout clothes. Today I reject any propensity for weakness. My favorite route is flat and long, and a beautiful day stretches out before me. I walk until I can run, careful, short- burst distances at first, just enough to remember how it feels to be thirty-nine again.

 That’s how you do it—one story, one day, one step at a time.

 

 

 

 

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