“Just when the caterpillar thought that the world was over, it became a butterfly.”
I use this phrase in my email signature because, in my own work as an occupational therapist, I get to be part of such amazing transformations every day. As a Dominican Sister of Peace, I use my skills and God’s help to help people regain mobility, build their strength, and reach their full potential.
I was recently blessed with the opportunity to spend 5 days in Jamaica visiting young residents at orphanages run by Mustard Seed. Many of the residents – children, teens and young adults – suffer from a combination of illnesses including HIV, mental retardation, Downs Syndrome and physical disabilities including muscle contractions, limited limb mobility, blindness, and deafness. Accompanied by my friend, Tram Bui, a physical therapist, we spent 5 days meeting with the children and their caregivers to try to help them improve their quality of life and quality of care.
We began our trip at Martha’s House, where we met with 10 kids with HIV. Each of these young people has joint deformities in their limbs and/or trunks. It’s heartbreaking to see these young people, who hold so much promise, confined to wheelchairs or having to overcome so many challenges in order to walk. We were there to help the caregivers learn new skills and techniques to reduce the children’s physical limitations or build their strengths and maintain their own physical health.
We spent our first day meeting with each of the kids to determine their needs, then talking to their caregivers about the challenges they faced in caring for them.
In some cases, the obstacles were severe – Sean, who is blind, and Kadian, who is both blind and deaf are both so sensitive to new stimulation that they scream and cry anytime that they are touched, which makes physical therapy, or even basic hygiene care, very difficult. We provided sensory tape, a vibrating pillow, and various texture samples to give the children an opportunity to experience and learn to tolerate new stimuli, and were grateful to see positive results by the second day of our visit.
Whenever possible, we tried to find ways to make the individualized therapy for each young person not just effective and progressive, but fun. Torrie, a very determined young girl, was unable to sit up on her own because of weakened muscles in her core. Her exercises with us involved reaching for treats she likes and giving me “high fives” to incorporate some of the core strengthening exercises in ways she enjoyed. We were able to use similar exercises to help other children like Durandra and Rackeem. It was wonderful to see them encouraging each other, especially when a task was hard and the child wanted to give up.
The second goal of our visit was to help train the caregivers so that through their work with the kids, the kids will be able to move more normally, and the caregivers themselves will avoid injury and fatigue during their workday. Some of the children require total assistance to get out of their wheelchairs, because of their physical challenges and characteristics of their custom wheelchairs, those transfers can be very hard for the caregivers. We worked with the caregivers on techniques to protect themselves and the children during transfers. Other new skills included massage and trigger point release methods that can help them prevent or heal injuries that can occur during work.
Outdated or out-grown equipment was a common problem. We did not have the funds to replace wheelchairs and other therapeutic supplies, but we did fill our bags with cushions, bed pads, splints, foam and other materials for “creative remodeling.” By slicing up the foam we were able to fashion new seat cushions for Kadian, the deaf and blind young lady mentioned earlier. The cushion made her wheelchair more comfortable, and the bed pad provided a safer way for her caregivers to move her on her bed without pulling on her arms and legs.
We were able to replace the old and torn wheelchair that had served as a shower chair in the facility. The shower chair, which can be rolled directly into the shower, is specially designed so the caregivers can give the kids better, more hygienic showers. We also supplied a handheld shower hose, grab bars and non-skid tub mats to make the shower space safer.
It was rewarding to hear the dedicated caregivers talk about how happy they were to have new knowledge we were able to share, and how excited they were to see the differences the new techniques would make for the kids. The responses from the children, however, were the most rewarding. We were humbled to see kids be able to stand more appropriately for the first time despite the deformities in their legs and to see how proud they were at their accomplishment. It was fun to hear the children say that they enjoyed the therapy even though it was hard for them, and sometimes painful because it was fun and they knew they were getting stronger. In the evaluation, all of the children and their caregivers asked us to come back again.
I was constantly struck by the children and caregivers’ joy and care for one another, in spite of their hardships. There is so much more that I wish we could do for these children. Many of them need new wheelchairs or splints, and most of them would benefit greatly from more therapy. I feel very blessed that, through the generosity of the Conrad Hilton Fund and the Dominican Sisters of Peace, we were able to help them develop new ways of managing and even overcoming some of their challenges.