inch by inch, row by row

“inch by inch, row by row

gonna make this garden grow”

-David Mallett

Out of nowhere I found myself humming this song to myself recently, listening to the rain fall on Cape Town.

(This is particularly random, because the song that’s currently stuck in my head is “Somebody That I Used to Know”: I dare you to get that one out of your head)

As I wondered where that particular song had come from, I realized that it’s a fitting metaphor for where I am in the work with Sibongile. (Thanks, subconscious!)

I haven’t written here in a while, in part because I tend to shy away from sharing the obvious, the day-to-day, the mundane. I don’t post to Facebook what I ate for breakfast, that I’m sweeping the floors (which seems to be an almost constant effort here), that it’s beautiful here in Cape Town. I usually post when it’s out of the ordinary. Otherwise it’s just lost in the noise.

Which is why this metaphor is so apt. Somewhere along the way, the work at Sibongile has turned from making the exciting changes that come when bigger things happen, to the day-to-day work where the slower, more lasting changes come. Continuing the garden metaphor: my time at Sibongile began at harvest time, when you get to pick the fruits and veggies, and small amounts of effort get you big rewards. Now it’s the middle of the summer: I’ve planted everything I will be able to plant, I’ve even gotten to have the excitement of watching the new plants sprout, seemingly from nothing. I’ve had rainstorms wash away some seedlings. Now there are (I hope!) some well-established plants, and they need tending, simple weeding and watering. Nothing I do will make them grow significantly faster, there will be no ripe fruit to pluck and enjoy, at least not for a while. It’s entirely likely that I will not be here in South Africa when most of these plants mature and someone gets to eat the corn on the cob.

At the beginning of my time here at Sibongile, I could just reach up and pick the fruit: in one week, I labeled every custom-fit stroller and attachable table with the name of the child to whom it belongs. Suddenly, it was easy for the care workers to put each child in their own stroller, not whichever one seemed to fit, and they began doing so. (mmmm, those strawberries were delicious!)

Now, the growth is steady, but slow, and needs constant reinforcement. For example, every child has two or three custom-designed positions to keep them properly aligned.

(Yes, three for the whole day. How many times did you adjust your sitting position while you read the beginning of this post? Don’t know? Fine, pay attention for the rest of the post.) Imagine you have cerebral palsy, and can’t adjust your position. And a well-meaning someone just put you on a mat in a position in which your spine is twisted. You can’t move. You stay there until you are moved by someone else. That’s uncomfortable, right? Now imagine you are in that same position, day in and day out, because that’s where your body tends to lie. Your spine gets gradually tighter and tighter in that twisted position, until you can’t untwist, and you have scoliosis, which decreases your lung capacity, and it’s easier to get pneumonia. And it’s really hard to cough, to clear that pneumonia. This specific sequence is just one of the ways that people with CP can decline significantly through poor positioning.   

Senecio, a group of Occupational Therapists who work here in Cape Town, visited Sibongile for three weeks to design appropriate positions, fabricate and buy the equipment for those positions, and train the carers in how to put the children in the positions. These positions are very specific, and many are quite complicated. Many positions require sandbags, small tables, foam wedges, or other equipment to keep the child in alignment. So all the carers were trained in the positions for the children at the house they work. They have detailed photos of each position, to help with recall, but it’s a significant amount of work to position 12 children, three or more times per day. And these carers have a lot of other work to do: they are responsible for feeding and cleaning the children, cooking the food, cleaning the house, washing the clothes, etc.

So the long term work, the tending and weeding, is to help the carers use these positions day in and day out. To be there to answer questions, to encourage, to cajole, to remind, to make the positions part of the everyday routine, instead of that thing that Johan makes us do. To talk with the carers, to help them notice how much more alert that particular child is since we’ve been doing the positions consistently, how much less that other child cries. The other day I told two carers the medical history of B.O., trying to help them understand her, why she’s so needy and has to get so much more calories than the other children. It took half an hour, didn’t get anyone positioned or fed or stretched… but as I told her story, how difficult it must be for her to be completely dependent, when she functioned normally as little as five years ago; the look in their eyes told me that the next time they had to deal with this challenging child, they might understand a little more.

One plant tended.

And there are the setbacks, the flash floods that wash away some of the growing plants: a little while ago we had the grand opening party for the newly renovated Sibongile Daycare/Office building. It was wonderful, with every child, every carer, and probably 100 community members there celebrating Sibongile. Everyone had their new Sibongile shirt on, and the place looked great. The buggies (individually custom-fit supportive strollers, a critical part of the positioning program) looked great… a little too great. With the best intentions, the carers had taken all the cushions off the buggies, removed the covers, and cleaned them. So now all the cushions (5-10 per buggy) are jumbled, some on the wrong buggy, some in the wrong cover, some without covers. So we shore up the soil, replant what we can, keep tending. We try to match up as many of the cushions as we can, refit to the best of our abilities, generally do temporary fixes until the seating experts can do their work: thank goodness they’re coming soon! And I’m working on some protection for the plants: after the upcoming fitting, we will write the name of the child on every piece of every buggy, so we can match up the pieces, when this happens again, as we know it will.

And there are the promising, hopeful things, the hint of fall in the air for a moment in July that reminds you that the harvest will come, the hope that your work will bear fruit. The little things, like the other day when I was positioning one of the children, and the carer next to me tossed me a piece of positioning equipment, unasked, as she positioned another child. In that moment I knew that she knows both children’s positions well enough that she anticipated I was about to need those arm gaiters. Another thing, not so small: we got word that there will be a new long-term volunteer PT to continue the work, that she can overlap with me, so there will be continuity. Becky Molinini, PT will be volunteering at Sibongile for one year, starting three weeks before I leave for the States! She is the newest Tremendous Hearts volunteer, and I can’t wait for her to get here.

Sadly, as I will return to the US at the end of June, it’s unlikely that I will see much of the harvest from all that I’ve planted. But I will continue to be involved in Sibongile, consulting in some way, even if it is from afar.

So I’ll get to see the harvest on Skype.

DI’s going to school!!

When I started working at Sibongile, I immediately noticed that some of the children should be going to school. Cerebral palsy’s effects on cognitive function are widely varied, and many children with CP have full or near full cognitive function. DI (one of the few children at Sibongile for whom we have full permission to use photos) was at the top of the list.

I asked everyone I could think of: how do we get these kids in school? What’s the process? No one knew. I asked social workers, OTs, PTs, facilities managers, everyone.

In October, I went to an OT appointment with DI, and out of the blue the OT mentioned that DI had a letter from his Doctor recommending him for school!! The process had begun, but nothing had happened: the school had called the number on the form, gotten no response (we think it was DI’s parents number), and given up.

I asked the OT if there was anything I could do, could I just drive him to the school for the assessment?!? She got on the phone, and before I knew it we had an appointment for DI at the school. Nomasango and I went with him for Psychological, OT, and PT assessments, and they told us we’d hear soon. (We didn’t) After many calls, we finally heard that decisions were now in the hands of the Department of Education, and we wouldn’t hear until February. Bureaucracy!! I called in my last card and got in touch with a psychologist from the Department of Education who had visited Sibongile recently, and pleaded with him to do anything he could to move the process along.

Today we heard that DI has been accepted to Tembaletu school in Guguletu (a neighboring township) and he starts February 2nd!!  Congratulations DI!

My neck hurts.

My neck hurts.

I could write it off to a bad pillow, or stress, or living in a new country.

But really, I know my body well enough to know that for me, this
particular kind of muscle spasm is the physical manifestation of some
unresolved thought process.

And I know just what this one is.

This neck pain is all the stuff that I have told myself I’ve come to
terms with about being here in South Africa. And my neck is telling me
that “come to terms with” is really just a nice way of saying “not
dealt with yet.”

In Niebuhr’s overused but still useful words, I feel I have been
granted some serenity, courage and wisdom. Unlike the first few weeks
working at Sibongile, now I can mostly deal with:
-the pain of seeing severely disabled children and knowing how much
discomfort some of them must be in
-the difficulty of waiting for the slow progress with the carers,
knowing that the slow kind is the one that will last
-seeing the basic inequity that abounds in Khayelitsha, and in South
Africa in general, the enormous imbalances in economics and
opportunity and health care and in so many other areas. And knowing
that I’m on the ‘have’ side of that imbalance. (And yes, I know there
is this kind of inequity everywhere, but there is so very much here:
one major ranking of disparity between rich and poor puts South Africa
at first in the world)

So I’ve gained some wisdom; I feel like I can identify those things
that are bothering me so much, and that helps with the courage thing.
Really, I feel like I’m doing pretty well on the courage front; I’m
changing what I have the skills and capacity to change, and doing it
in a way that I believe is the right way, the respectful way, the way
that has the best chance for sustainability.

And the fact that I don’t think about the iniquities and the painful
things all the time, the way I did when I first arrived, I guess that
means I have gained some modicum of serenity.

But the pain in my neck, the one I have trouble not seeing as thoughts
leaking out my head and sliding slowly down my neck and freezing
there, that seems like a rather poor approximation of serenity.

So I’ll impose on Sara to rub my neck, and I’ll take more ibuprofen,
and I’ll get that Groupon massage.

But mostly, I’ll try to find some way to be at peace with these things.

I don’t know if I ever will, and I’m not certain that I think I should.

I just hope they don’t always manifest as major neck pain.

A different sort of day at Sibongile

Many days at Sibongile are similar to what I wrote about in my last entry. On the other hand, some of my days are spent off-site. 

 

Caring for children with cerebral palsy is a complicated process that requires the skills of MDs, occupational therapists, speech language pathologists, seating specialists, nurses, social workers, and many other medical and therapeutic professionals. And in order to be effective, this process requires coordination. So I frequently go to Red Cross Hospital (the local children’s hospital) to help the carers get to the right appointments, to make sure a child doesn’t eat before a swallowing study CAT scan, or to hold the hand of a child who’s having her feeding tube replaced and the skin around it cauterized. Recently I went to a PT appointment with one of the children and was about to leave, when the Sibongile administrator called me to tell me that one of the Sibongile children was being discharged from the hospital. To make a long story short, I spoke to the discharge nurse, who said “You’re from Sibongile, right?”, I signed in two places, and they handed me the child. It felt very strange to walk out of the hospital alone with an African child.

 

Sometimes I go off campus for trainings or networking. Last Wednesday was one of those days: I visited the great folks at Woodside Special Care Center, who provide day and night care for 87 children and adults with CP and intellectual deficits. They hosted an OT Week event with a facility tour, equipment tryouts for the carers, and activities to help the carers understand what it’s like to use only one hand or to have visual deficits.

 

All of that was wonderful, and clearly made a big impression on the two carers I brought with me: the looks on their faces of excitement and understanding were positively inspirational.

 

On top of that, I got to network with their wonderful OT, who is a fount of knowledge about Cape Town resources for children with disabilities. When I mentioned that funding is an ongoing challenge, she introduced me to Woodside’s General Manager. We talked about Sibongile, and the GM literally said “What? You’re not getting funding from the government? I’m going to a meeting with the Department of Health this afternoon, and I’m going to tell them that Sibongile doesn’t get funding from the government, and that’s a big problem!” She’s going to meet with Marco, our chairman and fundraiser and my wife Sara, to help move Sibongile closer to receiving the government funding that the children are entitled to.

 

So Wednesday was a day of driving around the city, showing my driver’s license at a routine police checkpoint (went very smoothly, they didn’t even mention that it’s a US license!), making vital connections with wonderful, generous people, and opening the eyes of some of the carers.

 

The icing on the cake was when the OT mentioned she had visited Sibongile a year ago, and had loved the place, but wondered if we still had the children lying on mats all day long (an unsupported, unhealthy position for children with CP). I got to tell her that that’s my first big push, to have all the children in their buggies from 9:00am through lunch. And it is going very well; the carers are now doing this without (too many) reminders from me!

 

It was a good day.

 

A day at Sibongile

My schedule at Sibongile is different every day, but often it goes something like this.

 

8:00 – 9:00 Meet with Marco Spalke, Chairman of Sibongile: outstanding fundraiser, volunteer coordinator, five-year volunteer at Sibongile, and already a valued friend. We discuss the week to come, long term plans, and upcoming events. We meet at Marco’s apartment, since he’s our neighbor.

 

9:00 – 9:30 Drive to Sibongile. This is a 25 kilometers drive along the edge of the ocean south of Cape Town, mostly parklands, all beautiful.

 

9:30 – 9:45 Deliver diapers to one of the other Sibongile houses: they were out, and the guy who usually does driving and deliveries was away.

 

9:30 – 12:30 Physiotherapy (what they call physical therapy [PT] around here) at Sibongile House 4. This house opened the week we arrived, and cares for most of the older children who live at Sibongile. Five children live there, unlike the other two houses where 12 children live (the process of re-assigning children is ongoing). Two of the children attend Sibongile’s school on weekdays 8:00 – 3:30, so there are three children there during the day on weekdays, I’ll call them MV, TH and QI.  MV and TH can stand and walk with assistance, QI can sit with assistance.

 

In the future at Sibongile, PT will mean stretching and strengthening, work on balance and walking. Right now, we are working on the many precursors to all that, the things that need to happen every day, mostly done by the carers, not even by the PT.

 

So today PT looks something like this:

• Teach the carers the proper way to seat QI in his custom-fitted buggy (imagine a heavy-duty stroller with special cushioning to keep the child in the appropriate position).
• Discuss with the carers the importance of standing and walking for the two children who can do so, explaining the benefits for bones, muscles, joints, balance, etc etc. Show how the children will be able to stand and walk better if their pants are rolled up. Explain that standing and walking every day is PT for these children.
• Walk with MV, holding his hands, back and forth in the hallway of the house. He smiles and smiles. MV has ataxic cerebral palsy, which makes him unsteady and shaky, but without the high muscle tone of spastic CP, so with assistance he can walk very functionally.
• Work with the carers and QI, who spends most of his time in the buggy. He is visually impaired, cannot speak or otherwise communicate, and is assumed to have cognitive deficits. He bangs on the tray of his buggy, and screams often and loudly, although without discernable emotion. I asked the carers, wouldn’t they like it if he yelled less? They agreed heartily. I asked, and they could not think of a time or situation that he doesn’t yell. We discussed my SLP friends’ contention that all behavior is communication, and I wondered to them if this child might be trying to tell us something with his behavior. I got QI out of his buggy, and positioned him in prone (on his stomach) with good alignment (no small feat, because of his contractures). He was comfortable, happy, and relaxed . . . and quiet. One of the carers has just completed a training that includes positioning, so I asked her to check my positioning, to see if it followed the guidelines she learned in her training.
• Discuss TH, who cries when his meals are done, and was sad while watching the carers eat a snack. I explained how the muscles of children with high muscle tone (like TH) are working constantly . . . and the carer finished the sentence, understanding that that meant he was using more energy and needs more food. She then suggested that maybe the children should have snacks between meals, and I heartily agreed. As I left, she told the other carer that they are starting snacks every day.

 

At 12:30 the children are eating lunch, and will then have a rest, so my hands-on time with the children is done for the day (I’m still working on finding a way to spend more time with the children every day)

 

So I go to the Sibongile office, where I can do some paperwork.

 

12:30 – 1:00 Work on positioning with one of the children at the Sibongile school, where they are having their rest too. Discuss with the carers how to do this and why it’s important to do this every day.

 

1:00 – 2:30 Paperwork, emails, notes. I find this time to assess what I’ve done and how it went is extremely important, given the range of things I’m trying to balance (concerns around language, culture, race, gender, economic background, education, literacy and disability, just to name a few). It’s given me space to begin to identify and express the ideas that support my approach, and of course the more I can express them for myself, the more I can put them into action.

 

2:30 – 4:00 Shopping for PT materials. While stores generally have what I expect them to, some things just aren’t in the same kinds of stores that I would find them in the US. So shopping for specialized or hard-to-find things is time-consuming.

 

This was a good day. I had meaningful conversations with the carers, and felt that I got my ideas across without simply telling them what to do. I was able to engage them in the work, helping them to apply their knowledge (of daily life and what they’d learned in the training) to the care of the children. The carers came up with half of the ideas that we tried today.

 

Working this way is time-consuming, challenging, even risky: today I made a comment about how TH might need more food, given how thin he is and how he cries when his food is gone. The carer bristled immediately, and I had to hurriedly explain that I didn’t mean that she wasn’t giving him not enough food. This was the conversation that ended with her idea about between-meal snacks, so that possible misunderstanding was successfully avoided.

 

I feel so strongly that this kind of individual work is the right approach here at Sibongile. It reinforces the training the carers are getting, it involves the children in applying and reinforcing the basics of good cerebral palsy care, and it helps the carers to begin the process of problem-solving. It’s a long road ahead of me, and not all the days are as good as today, but I do feel encouraged by days like these.

The Learning Center for the Deaf, Randolph

I completed physical therapy graduate school in 1998. I had a one-year internship at Children’s Hospital Boston, then began looking for a job. Through a series of connections, I heard that there was a part-time position for a PT at the Randolph, Massachusetts campus of the Learning Center for the Deaf (If you’re out there, thank you Faryl Norris!). I ended up taking that position, and I still count it among the best decisions I’ve ever made.

Working at TLC Randolph was a long commute, it was an old building, I was the only PT, it was (initially) part time when I needed more hours, I was doing PT in a different language, I was walking into deaf culture, about which I knew little.

With so many challenges, working at TLC Randolph might have been a chore. No, working at TLC was joyful, an incredible learning experience, full of amazing friends & wonderful children, challenging and rewarding and … now it’s done.

The Learning Center for the Deaf operated for 17 years on two campuses, Framingham and Randolph (The Framingham campus has been around for 41 years, and continues today). In January 2011 it was decided that there were not enough students in the foreseeable future to maintain a critical mass sufficient to maintain the school in Randolph. So on July 28, The Randolph Campus closed for good. The final months were a challenging mix of packing, finding placements for students we care about so much, packing, saying goodbye to students, packing, and saying goodbye to friends.

Words cannot express how much I learned from the staff (and children) of TLC Randolph. I miss them so much. My last two months of extraordinary transitions have been colored by an undertone of sadness, that I will not work at TLC Randolph again, that students will not benefit from the combined excellence of the wonderful team there. Many of the TLC Randolph staff now work at TLC Framingham, and many have moved on to different schools and different pursuits.

If you find yourself working with a former staff member or student of TLC Randolph, consider yourself very lucky: I know I do.

First week.

Last week I started working/volunteering at Sibongile.

I found it very difficult to write anything here during that time, and I wasn’t sure why… starting to have some insight on that, more about that next time.

Last week I set what I thought was a simple task: focus on relationships.

I am working with 27 women who care for the children, and one of the medium-term goals (both for me and for Nomasango, the founder of Sibongile) is to have these women, the carers or mammas, do most of the day-to-day PT exercises. They fill the role of parent for the children of Sibongile; they feed them, clothe them, change their diapers (nappies! love that word), play with them. In a situation where the child lived at home, we would ask the parent to do PT exercises with the child, so likewise we ask the carers to do the exercises. The staff at Sibongile has told me that this has been tried in the past, with varying results. These carers are women from the Khayelitsha community, some young and some middle-aged, many of whom have children of their own, some originally from the Cape Town area, some from elsewhere in South Africa, who speak Xhosa or Zulu or Afrikaans and some English (thankfully for me, some of the carers are pretty much fluent in English. My Xhosa classes start soon!). The carers work six days per week, 12 hours per day. They are paid $140/month. Sibongile simply can’t pay them more (Sibongile gets little to no funding from the government, in spite of laws that provide for significant per-child support for situations like this one. More on Sibongile’s funding later).

So I know I will be training these carers, asking them to do exercises, asking them to learn and apply new things. I have to have a relationship with them, before I start asking things of them. So last week I decided to simply go to each of (then) three Sibongile houses and spend a day at each one, to see how things work, to begin forging relationships. I decided I had to not correct or train or instruct for that whole week. Simple? Hah!!

There are many things that need improvement here at Sibongile, not only in the PT realm, (and Nomasango and the rest of the folks in charge at Sibongile agree) and it was mentally taxing to spend whole days not working to improve them. What did I do? I played with the children, I did PT with them, I helped the carers with things around the house, I didn’t tell them what to do. I made more connections; Occupational Therapists (OTs) from Senecio, an organization that provides OT services to organizations like Sibongile, came on Wednesday, and led the second session of a great training on cerebral palsy for some of the carers. I hadn’t heard this was happening, and after watching the trainer at work and she showed me the curriculum, I immediately went to Marco (who runs financial things here at Sibongile) and told him that all the carers need to have this training as soon as possible (and it looks good for that to happen!). I got to talk specifics about some of the children with these OTs, since they had set up exercise programs for the children at one house. In talking with them, I had a small taste of the wonderful collaboration I enjoyed with the therapies team at TLC Randolph: miss you guys!

One truly wonderful thing happened last week. At Sibongile 2, there is a 14 year-old girl who I will call BA. She only started coming to Sibongile in 2010, and her file (like many of the children’s) is quite thin on her history. She has athetoid cerebral palsy, a type that doesn’t make a person tight (high tone) as one sees with the majority of CP, but instead makes for writhing, difficult to control movements. This type often has little to no effect on the cognitive areas of the brain. As I interacted with BA, I noticed her penetrating, steady gaze, and that she was aware of many things: while I was there, she made the carers aware that one of the other children was doing something not allowed. She pointed very clearly, and even indicated with gestures that she wanted a drink. So as I was doing PT with her, I began signing and speaking with her, telling her that I knew some signs, and maybe I could teach her some, and she could communicate better.

Then she signed back at me: “I sign” over and over.

I’ve been signing with her for a week, and it seems that she does know many signs, and when she doesn’t know a specific sign, is very adept at making her wants and needs known, if one is looking for visual communication.

I don’t know what your belief systems are, but to my way of thinking, for me – a PT with sign skills – to be here to communicate with BA seems like more than luck. And certainly makes all my worries about incremental gains leap into perspective. However you want to express it, I am meant to be here.