Leeza Bajracharya is my daughter who has cerebral palsy. Leeza was born on 2044 BS and has no body balance and she needs constant support to sit, walk; eat to do all daily activities. Except few facial expression and right hand movement she cannot use verbal communication. When she was born, her color was totally blue and shaking. Her life was saved with artificial respiration but she could not be like other babies. Treatment was continued in the hospital, water taken from vertebra was checked as suspected of meningitis yet the cause could be not diagnosis. Doctor mentioned her growth will be slow comparatively with that of other children. She was kept under the supervision for seventeen days. Then we came to know that she has cerebral palsy and physiotherapy, speech therapy was started. Now she can express little bit in her own way like, ama to mother, anti, alu, ani for pani (water) ga for father. She uses her eye and finger to indicate things. She tries to eat, brush teeth, turn pages of a book, and play carom- board, key-board with others help if she is positioned in a comfortable position. She likes to watch television, listen radio; play key-board, drawing and travelling.
I was dedicated to make her normal and able to walk like other children but when I got to know that it is a condition and not a disease I was shocked. From that time I decided to do something for those children like Leeza. Even after that I am worried thinking what about Leeza’s life after me. This is not only her problem but represent the voice of many other mothers’ of similar children. Who is there to respond to this?
What every mother wishes for:
Cruel comments, satires are common for the disabled people in the society. Cerebral palsy is a condition in which a child cannot sit, walk, speak or can do nothing. It lasts for the whole life. A mother takes care of them each and every moment. It is not so easy. Furthermore they are worried about the children’s future. After me who will take care of my child? This question always tortures them. There are some NGOs which are related with the activities of disabled children. Unless the right of disables is not fixed mothers cannot have comfortable time.
Now our country is on the journey of transformation. New constitution is being made in which provision should be made for the right of disables and intellectual disable person. Mothers wish their disable child should have human rights and live with dignity.
Difficulties faced by parents of Children with disabilities:
Children with disabilities are always in need of others’ help to do anything. Their survival is full of complications for self and family:
- Slow and incomplete physical development cause problem in walking, sitting; eating, movement and even to drink water.
- Communication problem- such child cannot express own opinion clearly then parents and other persons cannot understand which makes them irritated and depressed.
- Excluded from social life – they rarely get chance to participate in social functions like marriage, bratabandh and other festivals so feel disheartened.
- Deprived from education and intellectuality- they need special education which is not available everywhere so there is slim chance for education.
- High dependency- these children can do nothing for self purpose. They are helpless to do as per own wish and need. In the absence of helper they cannot even drink water if they are thirsty. Compelled to depend on others for each and everything.
Parent and family problem:
- Caring problem- parents have to look after them twenty four hours seven days a week. Just like a newly born baby they need to be cared throughout their life. Such responsibility is not easily transferable thus working women face hard time to balance between work and duty. Need to continue job for financial support but difficult even to reach office on time.
- Transportation and communication problem- taking them from one place to another place is difficult, specially managing vehicle to take them hospital when they are sick. If children like to communicate with parents they cannot easily understand and it makes them feel helpless. Sometime they have to cover many things and scold their child after which they feel frustrated.
- Need to be dependent- a mother can take care of a small child as they grow in size their problems also grow and become complicated. For grown child at least two helper require to take care. Toileting is the most complicated problem for a mother as well as the child. Feeding everybody can easily do but this one most people dislike. For this someone understanding is supposed to be there, who understands the feelings.
- Relatives hesitate to invite you to social gatherings.
- Family problems- many of time families face problems in relationships and some parents even get divorced. It is difficult for the whole family to understand the problems and bring practical solutions to the problems being faced.
So what can be done?
By family members
- These children are neglected because they can do nothing so generally they are provided a small corner somewhere. Instead of that it is necessary to know their likeness and provide appropriate training, and medical help. If placed them in an appropriate position with required therapy they can also do many things show their Making drawings holding pencil with lips, writing poems with the help of foot and participating in the S.L.C. exam are few examples of what children can do if provided with some opprtunities. We can mention the name of Jhamak Kumari in this relation. Helping them to be in proper and comfortable position support to play with key board, eat solid things and even operate computer with a single hand.
By country and other service providers
Government has to make clear provision in this regard in the law and constitution according to the treaty declared by UNO regarding disable right. Beside that some other points necessary to be looked into are as follows:
- Establish rehabilitation centre for children with disabilities in every district with joint management responsibility with parents and government.
- Develop required physical infrastructure, skilled man power and improve technology for proper health care of severely disabled children. Free or minimum charge for their treatment.
- Children with physical disability have right to survive which should not end with the end of their parents. Thus government has to make safe lodging and caring provision for them.
- Medical negligence and inappropriate practices should be punishable and compensations for victims should be sought for
- Organizing public awareness workshops in different districts to make them aware about the causes and result of disability.
- Effective and convenient distribution of allowance for people with disabilities should be practiced.