Peaks and Valleys

My middle school teacher Mrs. C used to make us write “Peaks and Valleys” every Wednesday – highlights and low points from the previous week. Here are mine for this week:

Peaks:

• I took my first ambulance ride– escorting one of my residents to a Botox appointment. I got to help do the Botox, and she was very brave. I felt proud.
• Getting to know my residents better. I see many of my clients alone now. It’s amazing how animated each one becomes once you know how to read them better. 
• Feeling confident enough to start thinking creatively about new treatments for my residents.
• I am seeing a girl in the short term unit who needs all new equipment, which means sewing for me!
• Mealtime group on the behavioral unit. This is the highlight of every week. We cook with the residents as an assessment tool. More on this in a future post. 
• A new roommate! One of the girls finished her internship and moved out and a new intern moved in. She’s more social than my previous roommates. We’ve been cooking together, and last night we started a puzzle. It’s quite nice to have someone to talk to. 
• Weekends free to enjoy the beautiful weather: Saturday I hiked around Devil’s Lake and did a little swimming and boating with a friend. Sunday morning I rode 23 mi around Lake Mendota.
• The fire flies are already out in the meadow across the street from my house.
• I’m anticipating a trip to Chicago this weekend – it’s my birthday!

Valleys:

• 91 degree weather is muggy is miserable. Thank god for the air conditioning in our house!
• Mounting paperwork. I go in early, I stay late, and it still doesn’t get finished. 
• I have a new evaluation – a 6-year-old boy with severe Autism. In my first session, I learned how little I know about autism and how clumsy I am. I pushed too far and got myself hit. I wanted a behavioral eval and I’m excited for the opportunity, but I’m worried I won’t learn to handle him well fast enough to get the info I need. I also don’t want to make him miserable.
• My Friday morning schedule – I have three back-to-back treatments, each at opposite ends of the center. It’s a 15 minute walk each way. I’m always late for all of them. I hate running late.
• A week of being just sick enough to feel miserable but not sick enough to go home.
• Lack of internet in the house, lack of ability to get on FB at the center, and a breaking computer has left me feeling very out of touch with the rest of the world.
• Weekends alone in the house as the only intern not from Wisconsin. The alone time is nice, but the house gets creepy at night. 

Grateful

I have never appreciated my own body. Kinesiology class trained me to analyze my movements by muscle and bone. Neuroscience taught me appreciation for the profound complexity of the synapses involved in each movement. Nothing comes close to what I feel now that I understand how fragile those synapses are and how easily muscle and bone can atrophy and deform.

As I hike back and forth to my appointments each day (1/3 of a mile adds up after a few trips), I marvel at the way I move. My legs, both the same length, swing effortlessly forward from straight hips. My feet strike the ground, mold to the concrete, and propel me forward without a conscious thought.

I look down at my hands. Strong and smooth, I am struck by their beauty.  I flex and extend my wrists. Skin stretches over smoothly gliding tendons. Straight fingers open and close with clean fluidity. In response to my slightest thought my arm extends, palm opens, and my fingers wrap around a door handle. I am strong enough to pull the door open, automatically shifting my weight to balance out the new force.

Most of the time I’m not aware of each tiny movement, let alone the muscles and synapses which must all work correctly for these subconscious actions to flow together into a simple task.

I watch my residents focusing all their energy to isolate a single finger to press a switch. Some days the pathway is there, other days, it just won’t come. Day after day, I stretch wrists tightly contracted past normal flexion or extension. A resident turns her head and her body throws one arm out straight while the other hand drifts slowly but surely up toward her ear. Sometimes, 15 degrees of flexion is all the movement a person has available. My residents work hard, and sometimes it looks so painful to be in their bodies. I respect their perseverance. And I am grateful for the brain that forms these words and signals these fingers to type.

Week 3

Three weeks down! Time for another post.

I haven't been sure what to write about this week, so I guess I will describe a typical day.

6:50 am - I walk across the lawn from my house to CWC. Down in the basement of Murphy Hall, I unlock the  OT/PT room and check my e-mail quickly before heading back upstairs to pick up my first resident.

7:00 am - I try to get to Amanda's apartment early because her caretaker Susan is usually running late. I help  get her settled in her chair and wait for Susan to finish brushing her teeth before we go downstairs to get her ready for work. Amanda blinks yes and no, but we're working on finding a more consistent means of communication. We work with switches and eye gaze while we do her hair, put on lip gloss, or look at hot men in People Magazine. By 8:10 I have her out on the sidewalk, where she catches a bus to work.

8:10-8:50: Paperwork.

9:00 am - Pick up Cassie. Because Cassie has so little function, we present different sensory stimulation and look for a response. We work on feeding or listen to music.She sleeps through most of therapy.

10:00 am - Splinting! CWC has a program where kids from the community come for short stays to address problems or concerns. We do a full assessment, make any gear they need, and present recommendations for their care. Today, my supervising OT, the OTA and I are making splints for one of these kids. We have two hours to make an elbow splint, two resting hand splints, and co-contraction bands. Even though this girl is young, she has deformities in her hands which make creating a splint that will hold her in a good position very difficult. It takes all three of us to hold her in the correct position while the splint hardens. We end up working through lunch, finally finishing at almost 1:00. I rush off to get my next client.

1:00 pm - I mentioned Clarissa last week. Every Thursday we work for an hour on eating. She's had a surgery, so she can't choke on the pudding I feed her, but it's stressful for her. We go slowly. For Clarissa, we think that eating will improve her quality of life. It will also strengthen her neck muscles so she can hold her head up more easily.

2:00 pm - Lecture. One of the OT's presents on a skill we need to know to work with the residents here.

3:00 pm - paperwork. I work on my reports until it's time to go at 3:30.

Week One

Week one of my first Level II fieldwork: could it have been anything but overwhelming? I confess that when I read “Developmental Disabilities” on the description for the Central Wisconsin Center (CWC), I imagined a range of diagnoses; autism, mild to moderate mental retardation, and maybe Down syndrome or Cerebral Palsy. I should have realized that in 2012 the only people who still live in institutions are those so disabled and medically complicated that they cannot live in a community setting. Most of our residents don't walk or speak. Many have little control over their bodies due movement disorders. The term we use to describe them is "profound." Profoundly disabled.

Monday morning at 7:30am, my fellow student and I walked into a sunny day room looking out onto a lush green lawn. The resident we were to observe for breakfast sat in her chair, not moving. Her neighbor’s head lolled to the side, and something that looked like green peas slid in thick rivers down his chin and onto his vest. My immediate reaction - ‘I’m glad I don’t have to feed him!’ disgusted me. I'm entering into a helping profession. The repulsion I felt in that moment is not appropriate for someone who claims to honor life in all of its forms.

I realized later that this response is probably normal. We are all afraid of difference, and the residents at CWC are very different. Their bodies are twisted and move in strange patterns. An article we read this year on Mirror Neurons found that difference is most unsettling when it is unfamiliar. With exposure, the brain reacts less strongly over time. Remembering this, I spent the week watching the residents closely, trying to read their faces and bodies to determine when movement was expressive and when it was simply a dystonic pattern. The residents are like packages, wrapped up in clothes and blankets, lap trays, thoracic pads and head supports. Who knows what’s really inside? It’s hard to tell when watching for a person's eye blinks is your only means of communication with them.

CWC is like history lesson. Build in the 1950’s, it’s an old-school institution – straight out of a Ken Kesey novel. Underground tunnels connect the out buildings. These tunnels also house a pool, therapy rooms, splinting clinics, a wheelchair seating workshop, and all of the odd cubbies, spare rooms and passageways that would make the place terrifying if you were there alone at night.

It is also is huge. The tunnel from one end of campus to the other is 1/3 mile long. At one time, 650 residents with a range of impairments walked these halls. Legislation requiring that people be placed in the least restrictive environment possible has left only those with the most severe impairments in the center.

This will be an interesting summer. There are peaceful moments – an oral feeding session with a resident learning to eat. Her eyes fill with tears and her body arches as she tries to swallow the pudding I feed her. I stroke her face and talk to her to calm her. She smiles, and her muscles relax. A few hours later I sit in the back hall of the behavioral wing reading charts. A resident screams and screams because she can’t go with her parents to a meeting. She begins to lash out physically and is restrained. Three minutes later, she’s ping ponging around the back hall, talking to me about how she is losing weight and looks so different from her picture in the chart I’m reading. There's a lot to learn. I hope I am able to absorb it all.