Sorry I haven’t written anything in so long. I have been staying really busy. On Monday, I got the chance to do some home visits with Sharon, the OT, and two physical therapists from Switzerland who were here for about a week. We visited two children. The first was a girl about 14 who has Rett Syndrome. The second was a 8 year old boy who is undiagnosed but the parents reported that when he was younger he had seizures and may still occasionally have seizures. We made some suggestions about positioning, weight bearing activities, stimulation and transfers. It was interesting to see how the entire family was involved. Everyone come into the bedroom where we were treating, including the grandmother, grandfather, siblings, mom and dad and maid that cares for the girl.
On Tuesday, Sharon was out sick, so I worked on some projects in the office. I completed a summary of the observations and recommendations we had the one of the children we had visited. I also started making a sensory board for the girl with Rett Syndrome. For those of you who don’t know, a sensory board has several different kinds of materials, textures, colors, etc. in order to provide stimulation. Sharon has a trunk full of materials that she has saved or have been given to her. On my sensory board, I put some old ankle-length stockings, straws, velcro, some small bells, felt, and some soft shapes that Sharon had. I also made some other activities out of film canisters to be used for children to practice counting and identifying numbers.
On Wednesday, I visited the two other learning center that is in smaller villages close by. They are much smaller and have less children than the main learning center. I was really impressed by these two centers because one started last April and the other in October. They are planning to open three more soon.
Today I got the chance to help with an initial eval of a child and then participated in giving treatment to a child in the early intervention group. The early intervention group are kids under age 5 (I think) and they come to the center twice a week. Their mothers bring them and also help with the treatment. Basically all of the children recieved individual treatment, but in the same room, at the same time. They did alot of stretching, weightbearing and activities in the standing frame. They also have some fine motor activities.
I have already learned so much from Sharon, the OT. She graduated only 1 1/2 years ago from an OT school in south India. This is her first job right out of school. She has a huge number of responsibilities. She rarely provides individual treatment, but her main job is administrative. She is basically in charge of the entire main intervention center. She trains all of the workers and helps them to assess the children, develop goals and make sure that they are providing quality treatment. She also is in charge of writing grant proposes for their donors and reporting to them every three months. She takes care of all the financial responsibilities. In addition, she often spends alot of time making activities that can be used in the learning centers and intervention center. It seems like a hard job to do directly out of school. But, she does a great job.
Sharon told me that her view of OT has changed so much since she has been here. She said that in school, they greatly emphasized following a certain protocols and not much freedom to make treatment client-centered. They basically are taught the mindset to have a plan and to implement it despite client factors. But, she has learned that this approach often does not work in this setting. If your attitude is not client-centered and holistic, you can’t be effective at all. You can, for example, give a family a home program, but if they believe that their child is cursed in this setting. If your attitude is not client-centered and holistic, you can’t be effective at all. You can, for example, give a family a home program, but if they believe that their child is cursed and will never improve, they will never do the home program. Also, Sharon has a lot more freedom to be client-centered and holistic. She does not have to worry about being denied reimbursement from insurance companies or making sure that everything she is does is considered “skilled” or within OT framework or even within a certain timeframe. She said that one time a family brought their child for the initial assessment and she spent 2 hours just talking to the parents and addressing all of their concerns. The parents had the misconception thought that the child had a disability because he was not breastfeed at birth. Sharon spent along time explaining about the child’s deficits and the physiology behind the child’s disability. She then rescheduled the initial assessment with the family. In a hospital setting, or a more traditional OT setting, she would not have the freedom to reschedule and in her documentation, she would at the very least have to be very creative in her wording to make it sound like skilled therapy was administered.
The overall concept and drive on this organization is to transform the communities view of disability. They developed these two new learning centers recently because they found it to be more effective if they keep the children in their natural environment. Before, they were busing kids to the main intervention center. Children were improving, but the people in the communities were they lived still viewed them the same. In India, (especially in rural areas) people believe that if you have a disability, you must have done something wrong in your past life to deserve it. So, often they let the child die and don’t care for him/her. Or they may just hide the child so that no one else will know. There is also the belief that if you get close to someone with a disability, then you will also “catch” that disability. So, there is alot of stigma around the disabled and the Anugrah project is trying to change those attitudes. They are slowly changing communities by building relationships with the community leaders, educating people about disability, meeting people and talking with them and advocating for the disabled. I’m so amazed by all that they are doing!
I have learned so much even though I have only been here a week. I look forward to sharing more with you!