| September 20, 2017 |
– From August 18, 2017 in Tanzania, Africa –
Well, it was an interesting start to the day to say the least. I blew a fuse at L’Oasis lodge, sending the entire place into a light-flickering buzz, with sparks flying from the nearby electrical post. I figured it was a good idea to heat Bryson’s braces at the lodge and cut them with the EMT shears I had in my possession (heating makes it easier), but the embossing gun I had apparently couldn’t handle the voltage in Tanzanian outlets. I plugged the embossing heat gun into my transformer with what I THOUGHT was the appropriate voltage, turned it on, and–within 8 seconds–it sounded like the heat gun was going to takeoff like a rocket when a spark when flying out of the gun and I heard a *POP* at the same time the lights went out.
I opened the door to see that ALL the lights in the huts surrounding mine were flickering, in addition to the breakfast area. The nearby electrical pole didn’t look so happy, either… and I shamefully found an employee to let them know I was to blame. Fortunately, it was quickly resolved… but I was left with a broken heat gun, and no cut braces. Whoopsie. I’d have to muscle through cutting with the EMT shears once we got to SSLC.
I promise the day got better after my little incident. Today was our last day with the students at SSLC because tomorrow we’ll be with the teachers all day.
What We Taught
While the Stony Brook girls brought a group outside to play in the parachute… (photo credit Sarah)
…I headed into the Sensory Room with Azariah and his parents to use the hammock. Today was his father’s first day at SSLC in this session, but not his first time involved with programming. Both of Azariah’s parents were involved in April 2016, and they’ve been hoping to learn ways to ease the stress of caring for a child with special needs when cultural norms don’t leave many opportunities for community support. Once Azariah was in the hammock, swinging rhythmically back and forth, he began making vocalizations and even cracked a few smiles. You could tell he’s somewhat trapped inside of his body—aching for movement, but with no avenue or ability to initiate functional mobility. Hopefully, with the new stretches his parents learned, he can begin to get into a more neutral position, and start initiating movements. Today, we also taught his family other ways to hold him when sitting and initiate head control. Azariah even pushed through his legs up to a standing position, despite being limited by his hamstring and hip flexor muscle contractures. The glimmer of hope these exercises provided were just what Azariah’s family needed to jump-start the home exercise program he requires to progress and prevent further muscle/joint contractures.
Additionally, Sarah and I put on our engineering hats to make some necessary adaptations to Azariah’s wheelchair. With his current presentation, Azariah needed more support at his hips and legs to decrease hip adduction and promote a neutral spine position. Using pool noodles and duct tape, we created an adductor block and added adaptations under the carseat cover to maximize positioning. Since Azariah also liked to keep his head rotated and sidebent left, we even added an improved head support.
For the more active kiddos, Meaghan and Lo worked on setting up a hopscotch board using the colorful duct tape! The kids were having a BLAST trying it over and over… repetitive practice being one of the BEST ways for progress in pediatrics! We didn’t even have to TELL the kids to do it this way, they were constantly motivated to try difficult activities many times. They’re such fighters. (Photo credit L0)
We were able to do the final fitting of braces on Bryson, despite not having access to a heat gun (oops). I supplied an extra set of the softy liner, and we discussed the wearing schedule. While making the last adjustments, Bryson said “God Bless You” to me, and I truly felt blessed. Looking at his older brother discuss the wearing schedule, answering applicable questions, and seeing the new opportunities Bryson will have for functional mobility was overwhelmingly inspiring. We were even able to get Bryson set up with night braces, though I didn’t recommend he begin wearing them for some time since he’s never had AFO’s before! (Photo credit Lo and Sarah, respectively)
What We Learned
Caring for a child with special needs is challenging no matter how many resources are available. With Tanzania’s cultural context, we discussed how a mother’s role to care for her children makes it more natural to give the needed attention to these children, whereas it’s much more difficult for fathers. It’s especially stressful when they have special needs because they’re not typically involved at all. When a child is born with a disability, it’s not uncommon for the father to leave entirely. However, in some rare cases (such as Azariah’s), the father stays around and absorbs some of the stress. In some cultures, such as with the Maasai tribe, men are not able to touch women at all, so if a little girl is born with a disability, the father cannot even handle her. Even further, Maasai and other tribes have traditionally killed a child with born with a special need, as they are not able to contribute to the family unit/community as expected. Being that Maasai culture is based around raising cows/goats, and the tribe travels to find food/water for their livestock, boys as young as 5 or 6 are expected to play a role in raising livestock. With this cultural context, perhaps it’s easier to understand the immense stress a child with a disability will place on the family unit. However, the cultural context behind abandoning and neglecting to care for individuals with disabilities is (slowly) lifting in Tanzania. Accessibility and adaptability are in the future, and SSLC is already embracing the idea of inclusion for these individuals.
Using materials that are available locally and easily adjustable is critical when servicing developing countries. With this being a short-term mission trip, we thought a lot about how to make the progress and recommendations sustainable after we leave. For example, we left SSLC with duct tape to adjust Azariah’s wheelchair and remake the hopscotch boards. All the exercises we taught require MINIMAL equipment, and we thought of ways to integrate them into the school day. Some of the children have time to do exercises 1:1 with SSLC staff, but a group of them do balance and motor activity training 2x/week. In order to make the interventions successful, we figured we’d ADD to what SSLC already had in place. Today, we also spent time finalizing student documents alongside SSLC staff to make sure they’re understandable. (We will do more of this with SSLC staff tomorrow during our wrap-up session!)
Children are (and will ALWAYS be) my favorite people to be around. The kids at SSLC are full of smiles and laughs, each with their own personality shining through. Despite their physical disabilities, they’re constantly overcoming obstacles through creative compensations. They don’t give up when something is hard, and they support each other in and out of the classroom. It simply makes my heart smile to be surrounded by such supportive, innocent, and joyful individuals.
The Stony Brook students definitely made lasting relationships with each of the children, and may have learned more from the children than we taught. Seeing the world through the eye of a child is refreshing. Their focus on the simple things in life and playfulness is something I try to embrace in my life, and a big reason why I’ve chosen to focus on pediatrics in my work as a Physical Therapist. I saw the mutual joy between the Stony Brook and SSLC students. As Lo said,
“[Kids] don’t care about your degree, the places you’ve worked, what clothes you’re wearing, or how much money you have. They care if you can talk to them for two hours about their favorite colors or how much they like to ride the bike. They care if you can make them laugh and make them feel safe and loved. It was a nice (and much needed) change of perspective.”
Nasra and Jamie formed such a beautiful relationship that they simply couldn’t separate at the end of the day! Jamie hopped on the motorcycle with Nasra and her mother… and they rode away, together!
Photo of the Day
Playing with my camera and the GoPro Hero 4 with Arnold during chai time was priceless. He’s not shy when it comes to photos, always saying “cheese” and requesting “picture!”
Swahili Lesson of the Day
“Rafiki milele” is “friend forever,” which is representative of the lasting relationships we formed with the SSLC students. I can’t think of any more fitting Swahili phrase to represent today : )
Laugh of the Day
Tonight, we headed to the Ibuka Dance Foundation for a sweaty and dizzying African dance lesson! It was our first time driving at night on the bumpy city roads and, as Sarah noticed, ”You really can’t drive around here without headlights!” We headed up a huge hill to Ibuka, which felt like riding the bumpy cranks to the first drop of a rollercoaster, to arrive at the gate. The gate swung open and we expected to see someone walk from behind it, but instead… a dog wandered out! The little dog just strutted nonchalantly out of the gate, and we all equated it to visiting Oz. The dance lesson tested our coordination (which was hilariously lacking at times) and gave us quite a few laughs…!