Lack of Awareness
Everyone in the family is happy, as today Kiran is going to deliver a baby. She is experiencing severe labor pain. Still she is fighting for it, as she knows this darkness will followed by sunshine. But what happened to the doctors???They seem to be worried as the cord is tucked around the neck of the baby. However, they still managed to deliver the baby. Baby took a few minutes to cry. Everybody in the family is happy as she was the first child in the family. They even decided the name of the child, Ujalla. As Ujalla grows up, her mother starts worrying about her, as she is not doing any appropriate movement which a normal child does. Kiran went to a pediatric doctor with her baby. The doctor told her that her child is suffering from Cerebral palsy. Cerebral Palsy??? What kind of disease is this??? Is it dangerous?? Will my child survive??? Kiran started crying & questioned the doctor with a hope on her face .
Doctor made her calm & sit quietly and asked to call her husband. Dinesh(Kiran’s husband)ran to the doctor and was also surprised with this new term Cerebral palsy. Does lack of oxygen in the very first breathe of a child after birth leads to dead brain cells resulting to developmental delay? Few minutes delay in the first cry leads to disability in her life??
Disability?? Dinesh asked. Doctor: But there is a good thing that it does not progress further.
Kiran and Dinesh reached home with Ujalla. They are unable to understand how to convey this scenario to their parents at home. Dadi was curious about Ujalla. What did the doctor say? Kiran started crying, took her baby and went to her room. Dinesh started explaining about Ujalla’s disorder to his parents. Kiran heard all the conversation from her room. Dadi stated it as a curse on their family. First of all she is a girl, above which this disability which will haunt her lifetime is so devastating. Who will take care of her for the rest of her life? It would have been better if she had died before birth. Now it was a break point for Kiran. But, she gathered strength from within & decided that her child will also become independent and will achieve name and fame in her life. She knows it well that this may be very difficult or may be impossible dream. But she becomes strong..more strong. She also doesn’t know from where this strength is coming. Whole of that night was spent on internet, studying about cerebral palsy. She came to know that cerebral palsy in the country is three per thousand live births and there are different types of cerebral palsy. Each child is different but many of them show similar symptoms. Let’s check how these are being treated. After spending couples of hours she came to know about occupational therapists treat this disorder to integrate the reflexes existing in C.P. child, normalize tone, strengthening the muscles, enhances their functional skills, maximizing their independence. Here comes the smile on her face. Now next challenge is to find occupational therapist nearby. She finally googled someone and also the special school where children with cerebral palsy can study. She slept with peace. But this is not an achievement; actual difficulties are still on a way. First fight of Kiran starts from her home itself. We are in 21st century but still attitude of people isn’t positive & hasn’t changed. Priority for me is to go to the therapist first as my child is small to take admission in school. How to convince everyone is very difficult. Somehow she managed to convince her husband. But in laws? Kiran laid her thought in front of them. And same thing happened as expected. Dadi screamed. “Daily therapy??? & commented…These therapies are useless & cannot heal anyone. There is no improvement & children with such disabilities make everybody suffer.”
Their relatives also came to know about her disorder. Everyone empathized about her and the problems. Do we really require any sympathy, or any help from them?? For everyone my child has become disabled. They are not even ready to give her a chance to grow and develop. Each and every word from people are pinching my heart like someone is stabbing me. But it’s enough now, I have decided. My child will develop and won’t be dependent on anyone. She started going to occupational therapist for her sessions. After a couple of weeks she is able to see many changes in Ujalla. Now she is moving her arms and legs more frequently. As time passes by, she starts achieving her developmental milestones. Now her family also started to support her. While going continuously to O.T. she came across many other parents having children with cerebral palsy.
She asked one of the lady about her baby. Why is the baby so stiff?? The lady told that they knew about the disorder did not go to therapist.They went to temples, baba’s and many more places to get rid of this curse from our baby. As we belong to small town in India, no one is aware that such kind of treatments available. Now my child is so stiff that he feels difficulty in bed mobility too. A big task for us is to bring my child to therapeutic center. Carrying an aged disabled child & travelling places is a challenge for us everyday. We can’t afford a private car or a therapist at home. People call us as “bechara”. Sometimes even my spirit cries. Government is also not doing anything for us. We are poor and helpless people. Kiran compared her pain & felt very sad for this lady. She is at-least satisfied that she brought her child to therapist without wasting her time. As soon as a disabled child starts getting therapy, they starts to develop swiftly. There are many questions coming in her mind. Why isn’t that the government is not taking appropriate steps for this section of society? Shall the disabled be left with their condition? If someone can improve or is good from his/her mind, can’t he be given a chance to earn enough for his survival. What about the intellect of the people in our country? Will their attitude change for people with disabilities. What?? What should we do?? We can’t leave disabled children with their problems.
Now her second fight starts, during day time she is with her child and works towards her development and at night she explores about government policies for disabled, benefits they provide. After few days she is ready with all the policies and benefits provided by government. She checked it with all the parents who visit therapists & was shocked that none of the parents had awareness about it. Not even the therapists. The government has made such policies and is providing benefits, however due to lack of awareness many of us are not availing these benefits. Then why are these policies made?? If a company is making products without marketing it, who’s gonna buy it.