Vara Prasad was almost a Cinderella Story. Here are some of his baby pictures.
To recap, the grand strategy of the Rainbow School is "Education for All." Even special needs children are asked to come and the staff will work to find the proper doctors, proper physiotherapy, or even a special school for them.
I first saw little Vara Prasad in April. He was severely afflicted by cerebral palsy, but sharp-eyed. He lived about half a mile from the school. He would look around and fix right on whoever was talking to him. The teachers and I asked him to come with his mother once a week to school, and definitely come see the government hospital doctors for assessment and physiotherapy. Vara Prasad comes from an unusual family. All of his siblings have slight mental retardation, his oldest sister is particularly slow. It turns out his parents had their own problems, as well. While they had seen doctors for Vara Prasad again and again, they were looking for a “cure.” In April, he was seen by a doctor associated with our school. During that visit, something changed his mother’s mind. She stayed away from the school.
In June, Vara Prasad came back. It seems his parents had accepted their little boy’s specialness, that there was no "cure," then they tried to starve him to death. I’d never seen a child so thin still alive. Immediately, I contacted our partner organization, the Institute of Rural Health Studies to find out where to take him. We went to Nilofer Government Hospital with the IRHS caseworker, Malati. She set up the whole strategy to manage his care. Oddly, very oddly, his mother seemed to regret her neglect and jumped in to help at the hospital wearing the look of a martyr’s tortured face.
I kept asking my friend Dr. Pat who runs IRHS – why had the mother brought him to me. Why? He was so close to death? Clearly, the family had abandoned him. All the other children in the family were healthy, even fat. Vara Prasad had taken to eating his fingers on his left hand, the skin was rubbed off and dark red patches were showing. At one point, I picked him up and had to put him back down and he started crying, quietly, and shaking his whole body. He was desperate not to be left alone. Ismail noticed how shaken the family seemed. He served as translator and motivator during the whole effort, visiting him with me and going alone when I could not be there. Here is a picture of Vara mid-way through treatment.
The good doctors at Nilofer quickly packed several pounds on Vara Prasad with a high protein diet of dal, eggs, milk, and rice mixed with cream and ghee. They moved him out of the emergency ward after on week and into the long-term nutrition ward. He was due to stay there one month, which turned into two months. The same diet was given, he was watched over by rather beautiful young student nurses, all from Kerala, who taught his mother how to really feed him. After two more weeks, he started physiotherapy. He stopped his mechanical habit of eating on his fingers. After three more weeks, he was trying to turn over, holding his head, laughing when I spun around while holding him, grabbing at objects placed anywhere nearby, grabbing and holding his feet and clapping his hands. He had gained over 15 pounds. All this time, his mother stayed by his side and nursed him, somewhat attentively when people were watching. She was in heaven having the attention a special needs child gave her at this hospital.
Then she decided the show was over. On August 25, she packed him up and received a discharge from the nutrition ward doctor. Malati got a hold of this, and stopped her from leaving the hospital until I could get there. I needed more back-up, so I took Shushelia, the IRHS head of all the caseworkers. When she and I got there, we read the riot act – trusting her to take care of this child was NOT an option. Shushelia and I were working on finding him a long-term nursing home. (There are several good ones in Andhra Pradesh.) Vara Prasad’s mother decided to come back for another stay. Now I had to find one quick. The next day, I found Sre Keerthala Home for Mentally Retarded Children through several friends, all who are running incredible programs for special needs children. Sre Keerthala Home was eager to take Vara Prasad. They already had Nancy, a nine-year-old girl with the same severe form of cerebral palsy. Now they would have a good friend for her.
Still, Shushelia and I had to convince the mother. The first few weeks Vara Prasad was in the hospital, his mother was in total agreement he needed to go to a new home. Now, she had changed her mind. Also, she had decided to take her entire family to stay in her native village, far away, (about two hours). Despite all the pleading, she was determined to take him with her. Even her husband, who was usually drunk, showed up the final day at the hospital to make sure we didn’t barricade the doors. She took him on August 28. The next day, I walked from the Rainbow School to their home, and they were gone. Here is his, the last day I saw him.
Other than filing a police report, there is not much I can do. I know she cannot properly care for him and I will make sure the police around this village take care to look in on him. I thank the heavens for my friends in the Andhra Pradesh police force for the dozens of ways they have helped in these past two months.
Observing Vara Prasad’s mother, it is clear she suffers from severe depression and possible other mental illnesses. I imagine as a girl she was intelligent, clear-eyed, and beautiful. Vara Prasad has her eyes, and he is so handsome. But her marriage to an alcoholic, much older man, who – in a Wagnerian twist – is also her uncle (her mother’s brother) has shut her mind down. All her children are mentally retarded, her youngest one is completely dependent on her, and the culture here below the poverty-line is to blame the mother for this. Her mind has just shut down, she just does not function like a sane person. All last week, I wished and wished for all Indians to rush into modernity and throw off these old ideas about special needs children.
Vara Prasad’s fate is in such sharp contract to little Eliya, seen here with his great mommy, Laxmi. Eliya saw a doctor for the first time this April, he started physiotherapy and regular medicines for seizures (common in CP kids). His parents couldn't be better at parenting this special little guy. They are special, too.
To recap, the grand strategy of the Rainbow School is "Education for All." Even special needs children are asked to come and the staff will work to find the proper doctors, proper physiotherapy, or even a special school for them.
I first saw little Vara Prasad in April. He was severely afflicted by cerebral palsy, but sharp-eyed. He lived about half a mile from the school. He would look around and fix right on whoever was talking to him. The teachers and I asked him to come with his mother once a week to school, and definitely come see the government hospital doctors for assessment and physiotherapy. Vara Prasad comes from an unusual family. All of his siblings have slight mental retardation, his oldest sister is particularly slow. It turns out his parents had their own problems, as well. While they had seen doctors for Vara Prasad again and again, they were looking for a “cure.” In April, he was seen by a doctor associated with our school. During that visit, something changed his mother’s mind. She stayed away from the school.
In June, Vara Prasad came back. It seems his parents had accepted their little boy’s specialness, that there was no "cure," then they tried to starve him to death. I’d never seen a child so thin still alive. Immediately, I contacted our partner organization, the Institute of Rural Health Studies to find out where to take him. We went to Nilofer Government Hospital with the IRHS caseworker, Malati. She set up the whole strategy to manage his care. Oddly, very oddly, his mother seemed to regret her neglect and jumped in to help at the hospital wearing the look of a martyr’s tortured face.
I kept asking my friend Dr. Pat who runs IRHS – why had the mother brought him to me. Why? He was so close to death? Clearly, the family had abandoned him. All the other children in the family were healthy, even fat. Vara Prasad had taken to eating his fingers on his left hand, the skin was rubbed off and dark red patches were showing. At one point, I picked him up and had to put him back down and he started crying, quietly, and shaking his whole body. He was desperate not to be left alone. Ismail noticed how shaken the family seemed. He served as translator and motivator during the whole effort, visiting him with me and going alone when I could not be there. Here is a picture of Vara mid-way through treatment.
The good doctors at Nilofer quickly packed several pounds on Vara Prasad with a high protein diet of dal, eggs, milk, and rice mixed with cream and ghee. They moved him out of the emergency ward after on week and into the long-term nutrition ward. He was due to stay there one month, which turned into two months. The same diet was given, he was watched over by rather beautiful young student nurses, all from Kerala, who taught his mother how to really feed him. After two more weeks, he started physiotherapy. He stopped his mechanical habit of eating on his fingers. After three more weeks, he was trying to turn over, holding his head, laughing when I spun around while holding him, grabbing at objects placed anywhere nearby, grabbing and holding his feet and clapping his hands. He had gained over 15 pounds. All this time, his mother stayed by his side and nursed him, somewhat attentively when people were watching. She was in heaven having the attention a special needs child gave her at this hospital.
Then she decided the show was over. On August 25, she packed him up and received a discharge from the nutrition ward doctor. Malati got a hold of this, and stopped her from leaving the hospital until I could get there. I needed more back-up, so I took Shushelia, the IRHS head of all the caseworkers. When she and I got there, we read the riot act – trusting her to take care of this child was NOT an option. Shushelia and I were working on finding him a long-term nursing home. (There are several good ones in Andhra Pradesh.) Vara Prasad’s mother decided to come back for another stay. Now I had to find one quick. The next day, I found Sre Keerthala Home for Mentally Retarded Children through several friends, all who are running incredible programs for special needs children. Sre Keerthala Home was eager to take Vara Prasad. They already had Nancy, a nine-year-old girl with the same severe form of cerebral palsy. Now they would have a good friend for her.
Still, Shushelia and I had to convince the mother. The first few weeks Vara Prasad was in the hospital, his mother was in total agreement he needed to go to a new home. Now, she had changed her mind. Also, she had decided to take her entire family to stay in her native village, far away, (about two hours). Despite all the pleading, she was determined to take him with her. Even her husband, who was usually drunk, showed up the final day at the hospital to make sure we didn’t barricade the doors. She took him on August 28. The next day, I walked from the Rainbow School to their home, and they were gone. Here is his, the last day I saw him.
Other than filing a police report, there is not much I can do. I know she cannot properly care for him and I will make sure the police around this village take care to look in on him. I thank the heavens for my friends in the Andhra Pradesh police force for the dozens of ways they have helped in these past two months.
Observing Vara Prasad’s mother, it is clear she suffers from severe depression and possible other mental illnesses. I imagine as a girl she was intelligent, clear-eyed, and beautiful. Vara Prasad has her eyes, and he is so handsome. But her marriage to an alcoholic, much older man, who – in a Wagnerian twist – is also her uncle (her mother’s brother) has shut her mind down. All her children are mentally retarded, her youngest one is completely dependent on her, and the culture here below the poverty-line is to blame the mother for this. Her mind has just shut down, she just does not function like a sane person. All last week, I wished and wished for all Indians to rush into modernity and throw off these old ideas about special needs children.
Vara Prasad’s fate is in such sharp contract to little Eliya, seen here with his great mommy, Laxmi. Eliya saw a doctor for the first time this April, he started physiotherapy and regular medicines for seizures (common in CP kids). His parents couldn't be better at parenting this special little guy. They are special, too.
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