I’ve been back in South Africa for about a month, after a trip back to the US. This trip has been markedly different than my last stint here – mostly in that nothing traumatic has happened. When I think back to my last stay in South Africa, from February through June, the three-day sequence below is what stands out most in my mind. It came on the heels of the crisis with Ndumiso, the little non-verbal boy who went missing on 25 March (and still hasn’t been found). Many of the volunteers, including me, were in a heightened emotional state after that ordeal. Because I work with children with autism, which is probably the diagnosis Ndumiso would have been given if he had been given one, I was feeling especially sensitive to all the kids with special needs who seemed to be being placed in our path since his disappearance. I’m leaving this entry in its original format – as three separate blog entries I posted when the events described took place.
4 June, 2014 – A Day
Today has already gotten the best of me and it’s only half over.
On the way to Mariannhill this morning I had the thought, “I wonder what crazy thing will happen today.”
First of all, a little boy sliced his toe and had a flap the size of my fingernail connected just on one side. The odds of him actually being able to go to a doctor to get stitches were low, so I cleaned and bandaged it as best I could, and told the sister who runs the crèche to tell his mother to keep it clean.
Then I went in to work with Samkelo, a boy with autism who I was told about last week. He screamed most of the time. My nerves were frayed and I felt like throwing up from dealing with the bloody toe, and I’m sure I accomplished nothing of value in that session.
While I was working with him, Sis. Vester came in and said there was another lady to see me. Word had gotten around (because of discussions about Ndumiso) that I worked with nonverbal children.
A young lady named Promise showed me her son. He’s two years old and severely brain-damaged. She said he was fine when he was born, but a nurse took him to bathe him and she hit his head on the sink. It made a big lump but she was told he would be fine. Two weeks later she brought him back, and again two weeks after that. She was assured that it would pass.
Now he’s two, and can’t sit up or speak; his eyes roll around without focusing and his limbs shake. He made small choking sounds constantly. The lump on his head is still there.
There’s nothing I can do for him. There’s no behavior to shape. I told her I’ll do some research and try to figure out who she can talk to. I don’t even know where to start.
His mother laid him on the bed so I could take his picture and a video to send to a friend in America who’s a physical therapist.
His name is Khwezi, which means “star.” She looked at him lovingly, and said, “He’s my star.” I asked if I could hold him and she said I could. I picked him up, expecting him to feel like a two-year-old. His head immediately fell to the side. He has the muscle tone of a day-old baby.
I asked who she lives with and she said her step-mother. She’s trying to go to school, which is a huge challenge in itself. She has to have her attention on her child 24 hours a day. I told her it sounds like she’s a good mother and is doing a good job, and that what happened to him wasn’t right and the hospital should be paying for everything he needs. I told her to come back next week and I’ll try to have some information for her – a place to start.
I went back in the other room to work with Samkelo, but ended up walking right back out of the room and asking one of the volunteers to tell Sis. Vester that I needed a minute.
I’ve always been capable of keeping somewhat of a clinical distance from kids I work with. You have therapists who are in it because their heart breaks for every child they meet, and you have therapists who like the analytical nature of the work. I’m definitely the latter. I end up loving the kids I work with, but it comes from a different direction somehow.
This place has flipped that on its head. I’ve never walked out of the room before and cried for a child I’ve just met, but feeling this limp, lifeless baby in my arms – knowing there’s absolutely no way to help and having to somehow tell that to the mother without dashing her hope completely…
I came home, still on the verge of throwing up for a million different reasons, and I texted Sonya: “I met the saddest kid I’ve ever met at Mariannhill, and there’s nothing I can do for him. I hate this and I wanna go home.”
But instead of going home, I’ll cry for ten minutes and then drive to Clermont, where I’m teaching the first lesson of my Proverbs 31 class to the cooking school ladies. I’ll think of all those things I should be thinking about: don’t get emotionally attached, don’t take other people’s problems as your own…
And then I’ll remember that Christ did all those things, and that’s the example he left for me – and I’ll keep trying to follow it somehow.
5 June, 2014 – What A Difference A Day Makes
I’ve been thinking lately about “God Moments.” At the beginning of our Friday morning COPT meetings we go around the room and share them. I don’t think I’ve ever had one. I’m not sure exactly what they are. My analytical nature leads me to want a precise definition before labelling something as “A God Moment.”
Today that didn’t matter. Tomorrow morning I have a million God moments to share.
Thursdays are the days we hand out sandwiches at Kwa-Dabeka Clinic. There’s another clinic in Clermont that we discovered while we were searching for Ndumiso – there were supposed-sightings of him there and then we found out he even attended a special needs school at the clinic for a while. It was one of those things that seemed perfect but never materialized. This post is not about Ndumiso, but in some ways it is.
This morning Rick phoned Matt saying not to leave without him because he wanted to go with us. The Szabos sometimes go but weren’t planning to today. Rick showed up with flyers about the new cooking course starting at the Clermont Good News Centre, and a general flyer with updated information on Bible studies and other programs we have running. He suggested we go to the new clinic instead, since it’s closer to our centre. That way our advertising might be more effective. Sonya had mentioned this idea the other day as a way to get our local Clermont brothers/sisters/attendees involved in a project, because it would be within walking distance for them. We decided to give it a trial run.
As soon as we got there I noticed a room that I hadn’t seen before – OT, Speech, and Physio. There was an umlungu (white person) inside – a woman wearing scrubs. After handing out my portion of sandwiches, I knocked on the door. She looked as surprised to see me as I was to see her.
I told her about the little boy in Mariannhill and described him. We discussed whether he might have Cerebral Palsy – which is a bit of a catch-all diagnosis that can have many causes. I showed her the video I took of him and she said he was missing some of the hallmark movements of CP, and that his eye movements indicated he just had weak control over them but not that he was blind. She said he would most likely just be considered stuck in the baby phase – developmentally-delayed – and that a lot can be done in a short amount of time.
I asked her where I could take him, and she talked a little about jurisdictions of clinics and how there probably weren’t many quality places near him. Then she said, “If they can come here, we can see him.” All the stuff about jurisdictions went out the window. She explained lots of technicalities about how things were set up, but that since they’re the only clinic of their kind between Durban and Pietermaritzburg, they’re not too fussy and will help anyone.
I told her the family mentioned wanting a wheelchair, and she opened a door and showed me a room full of them.
“Seriously?!” I said. Yep.
I struggled not to cry. Even the hospitals don’t have access to this many wheelchairs, and she explained the way they got around that too – meaning that when people come to see her they go home with a wheelchair, instead of waiting 4-6 months. This lady was amazing! Then she said they design their programs so that the parents do the exercises at home and this clinic goes into the townships sometimes to follow up. She seemed to think this kid could make significant progress with some simple exercises. She asked if the mother seems invested and whether she interacts with the child. I told her this mother is all-in – I’m convinced she’ll follow through. Not to mention the community at the Mariannhill Good News Centre who I believe will help however they can.
At this point Matt tracked me down and motioned that they were ready to leave. I told him I would be there soon. A few minutes later Rick came in, having told Matt to go ahead and set up Mobile BEC and we would walk over. I briefly summarized to Rick and then said to the lady, “Can you show him what’s behind the magic door?” We had the wheelchair discussion again.
I asked Rick to explain what we’re doing at Happy’s (forgetting that that’s just a nickname; once we called it by its proper name she was familiar with it). He told her about our fundraising efforts and trying to do OT with the kids. If we can get some of the Happy’s kids to her, she can show us how to help them more. This would be a great short-term measure until they’re able to hire an OT.
We continued talking about ways our two organizations could work together. She said she’s trying to put together a database of all the things going on in Clermont, so that everyone’s not reinventing the wheel.
Then I asked her if they have kids with autism. She said since it’s considered a learning disability (as opposed to medical) they only work with them unofficially – if they have a comorbid condition such as CP or Down Syndrome. I asked if they have ABA here (the therapy I do in the US) and she had barely heard of it, but thinks it’s coming to Jo’burg first and isn’t really in Durban yet. I gave her my number and told her about my plan to do a special needs clinic at our centre one afternoon a week. She was excited to have a contact.
Then she told us that one problem they have – which exists everywhere really – is that older teens or young adults with high-functioning autism, but who can’t read or write, end up never working. She mentioned the need for skills classes like baking or cleaning. Hmm.
“Our cooking course starts Tuesday,” said Rick. The lady laughed out loud. This was all too weird. She took down the info and was going to contact the family of a 17-year-old girl who might be a good candidate.
After we left I called Sis. Vester, who got me the number of Khwezi’s father. I got to make one of the best phone calls ever – “I think we found a wheelchair for Khwezi.” I’m planning to pick them up tomorrow and take them to get him evaluated. They’ll also be able to give better information about what’s wrong and whether he needs any other medical attention.
In a very real way, all of this is happening because of Ndumiso’s story – and I need to sit down with his parents and share this all with them. I hope his personal story isn’t over yet, but the story of his impact is just beginning.
6 June, 2014 – It Just Keeps Getting Weirder
Today was another day in the Twilight Zone. Wednesday we found a child whose case seemed very bleak, Thursday we found the place most-capable of helping us in a sea of seeming-incompetence, and today the two came together – with a twist at the end I couldn’t have predicted.
At this morning’s COPT meeting, I was able to tell about two exciting things that happened over the week – the race that’s coming together nicely and getting donations, and the up and down of finding the Mariannhill boy and then the next day happening upon the clinic. I told them how mentally fried I was after Wednesday, and that I had just wanted to go home. Thursday was the boost I needed.
I told them I was going to pick the boy and his mother up right after the meeting. Sonya asked if I was going alone and offered to join. It was a good idea for two reasons – because going into townships alone is discouraged, and because these strange experiences we have should be shared. We went back to the Szabos’, and after some finagling of cars and kids, took the oldest (kid) with us and headed off.
Thirty minutes later we were in Mariannhill collecting stares. Jude had spotted the tiniest puppy and shouted for us to stop. He and I chased it down the road and Sonya followed in the car. It finally went up to a guy’s fence and he came out to see what these white people were doing. Jude asked if it was his dog and he said yes. I almost asked if it was a pet or a nuisance, because most of our interactions with dogs or cats in the townships go something like this:
“Aww, look, a kitty.” As you turn your back from who you’re talking to in order to go see the animal, you have to be careful to dodge the rock that flies past your head. Pets don’t exist in the townships. Dogs and cats are just more mouths to feed. The most predominant animals are chickens and goats (which roam freely, causing lots of traffic jams) because they earn their keep and can be eaten.
A few minutes later we picked up Promise and Khwezi, and headed to the clinic. On the way I looked over his medical records, which included mostly just basic check-ups; and saw that he has epilepsy. She said he has 3-5 seizures a day even on medication, though the meds do seem to be decreasing them.
When we got to the clinic the lady I talked to yesterday wasn’t there, but three other ladies – a Physio, an OT, and a Speech therapist – evaluated him. They were a little perplexed because some symptoms (like a high palate) seemed congenital – meaning the problem might have existed from birth; but it didn’t completely add up because his medical records said his APGAR scores (a test they do right after birth and again 5 minutes later) were 9 and 10. The odds of him having a perfect score would have been extremely low if his difficulties were congenital. His mother says he was fine at birth and she actually witnessed the nurse bang his head. They gave us a referral to a hospital for an official diagnosis (which should have happened months ago but the hospital didn’t actually do it).
In the meantime, we talked for a couple of hours about exercises his mother can do with him. They were very encouraged to see that his arms and hands are fine, and his feet – though a little inflexible – don’t seem to be permanently damaged yet at this stage. They also showed her how to properly prop him up on his tummy so that his head hangs forward a little – so that he can get used to using his neck muscles.
They oohed and awwed over his adorableness…
…and told her about a clinic they visit twice a month that’s close to her.
I asked about a wheelchair. They said what he needs is a stroller (buggy, they call them here) that has adaptations to hold him in place. They didn’t have one exactly the size he needed. They brainstormed and said there was one that was a possibility but, according to one, it was “the ugliest thing I’ve ever seen.” They tried him in a bigger one but said that it could do more harm than good. “What about the ugly one?” I asked, but they said they can order the right size and get it within 2-3 weeks. That’s a huge improvement over the 4-6 months they said it usually takes other places.
They were very concerned about his choking sounds. It turns out that he does that every time he eats (he drinks formula and eats soft baby food), which means he’s aspirating some into his lungs. He doesn’t have much of a coughing reflex to spit it up, so it’s potentially very bad. One of the therapists watched the long process of feeding him and told his mother that she really admired her patience. She said she would have gotten really irritated by that point.
They added to the referral that we needed to see an ear, nose, and throat doctor to check on the aspirating. I was told the way it works is that you have to take the referral in person and they tell you if they can see you.
Since the rest of the plans for the day were tentative, I said we should go ahead and do that. In the car we talked a little more. She’ll be finished with her schooling in December, which is a huge accomplishment with all she’s got going. She’ll have an agriculture degree and said she’s already working in the field (the field of interest, not a literal field) with Khwezi’s father. I asked if they’re still together and she said yes.
“I was afraid he’d run,” she said laughing and motioning to the baby.
“Yeah,” I agreed. “A lot do even with normal children, eh?”
“Do you think you’ll get married?” I asked.
“Yeah, he’s paying labola right now.”
“Ahh, yeah, labola.”
She laughed and said, “Zulu…”
This labola thing is so damaging to the family structure. We know of many couples who have children but don’t live together and aren’t married because labola (dowry) is so expensive, often $2000-3000 – or, 2-3 cows. They can work for years to accumulate that, and for some it’s never attainable.
Promise said she plans to go to our church in Mariannhill on Sunday. I think she would be a valuable addition and would draw support from them. I hope she follows through.
We talked about the exercises a little. I wanted to make sure she had understood everything – though her English and comprehension seem excellent, sometimes it’s hard to tell what the language barrier muddles. We talked about frequency and how to do them and how exciting it was.
“It seems like maybe there’s hope,” she said, smiling.
“It does,” I nodded. “Were you starting to think there wasn’t?”
“I had given up hope.”
We ended up getting the run-around a little at the hospital. She’s been to that hospital before, and has a general check-up scheduled for later in the month, at which point they say they’ll do the referral process. But apparently they’ve never diagnosed him or offered any practical assistance, so we hoped the referral would get that started. They were condescending to her and one lady told me I don’t understand how their government works. (Nor do I want to, but all I asked was if we could make an appointment for the ENT in advance so she wouldn’t show up for the other appointment just to do scheduling. The answer was no.)
What happened as we left was unrelated, but so strange. We had told Promise the story of how we found the clinic and everything that came from it – passing out flyers for Ndumiso; finding out he went to that school and clinic; finding all the other nonverbal boys and eventually the one at Mariannhill – Samkelo, the one with autism; finding Khwezi because of Samkelo; finding the therapists because we happened to go back to Ndumiso’s clinic. Because of the strangeness of it – and because one of the other missing (now dead) boys was from Mariannhill – I told her a lot about the cases we’ve been hearing about, and specifically about Ndumiso.
As we left the hospital Promise mentioned that she was going to a wedding in Clermont tomorrow. I told her we have a church there too and do work in the community (that’s where we had taken her earlier to the first clinic). After a little discussion, I decided to drop her off in Clermont, because it wasn’t as far as driving back to Mariannhill. I had a brief thought that maybe her cousin lived near the church or someone we know – weird things happen here. I almost asked what part of Clermont but I’m not that familiar with districts or road names, so I didn’t.
As we got on the main road and I knew where I was, she asked, “Do you know where the new bridge is?” I do in fact. The new freeway bridge that goes over the Umgeni River is past the main part of Clermont, about 10 minutes away from our centre.
“Yes,” I told her.
“We’re going right there.”
“Oh, do you mean the little group of temporary houses [while they wait on government housing] right underneath?”
“Yes,” she answered.
It didn’t even surprise me. “It’s where Ndumiso lives.”
“Is this right?” she asked, as I made the last turn.
“So far,” I said. “Is it just past the intersection?”
Sure enough, we pulled right up to the group of houses. Her cousin lives two rows up from Nosipho, Ndumiso’s mother. It seemed like too much of a coincidence not to introduce them, so I did. They chatted in Zulu for a few minutes, and then it was time to go.
As I was writing this I got a text from Promise. Texting is often too expensive for the people we work with, so there’s a way to send a message just asking you to call them. That’s often what we get. There are also a certain number of characters that are free, so if you do get a text it’s usually short and uses abbreviations. This was neither of those.
“Thank you very much Jessica…You’ve made my life easier. Wish you all the best in your life. GOD BLESS YOU. I am so speechless.” I wouldn’t share that if I thought I was in any way responsible for what’s happened the last few days. God is at work – something that I sometimes don’t see clearly, though I try to look.
I replied, “I’m excited to see what God does for Khwezi. I’ll see you again soon.”
Touch and Teach is what we try to do here. God has used tragic situations to touch all these families. Today I was able to introduce two mothers who are going through such different struggles – one getting help as a result of the other’s loss. I can’t wait to see what else comes out of all of this.
Update – October 2014
I am still in frequent contact with Promise and Khwezi. He has his wheelchair and is being seen by therapists. Promise is doing the exercises with him regularly, and is seeing improvements. I saw her feed him the other day and was happy not to hear any aspirating sounds. She said the clinic taught her what consistency his food needs to be, and since then he hasn’t had any problems with choking.