I still can’t forget the shock we got when we entered her home. In her home there were 3 kids with different types of mental disabilities. A girl of about 12 was sitting in a chair staring vacantly. A boy of 8 years who looked like a 3 yr old was lying in bed sucking his fingers. Another girl of about 6 years was moving around in the house endlessly.

As we at Sadhana Village run a residential care centre for mentally challenged adults we immediately felt associated to the family and their problem of mental retardation.

When we asked how they are managing 3 special kids in a family we were told that the kids were simply fed, washed and left alone to themselves.

At this point we realized the grave need of training the rural parents in to parenting of children with mental disabilities.

Sangita's family
Sangita’s is a joint family. Her husband and his brother share house with their mother, wives who happen to be sisters and 5 kids between them.

Sangita has a mentally challenged 12 year old daughter and a normal 2 year old daughter. Her sister, Mangal, has one normal but partially deaf daughter, one 8 year old bedridden son with severe mental retardation. Another daughter is mildly retarded but hyperactive.

So the family needs immense help in training how to coop up with the problem and how to train the children.

Students from abroad
Last year a team of students of Occupational therapy had come to Sadhana village to do a project as part of their course. This year, too, the teacher mailed us to ask if they could send students for project.

We requested to take up project of training of the parents of these kids. Two girl students accepted the challenge.

The two occupational Therapy (OT) students arrived in March, 2009. They immediately started work with the family. One of our colleagues Medha joined the team as interpreter as the family couldn’t understand English. Two other local volunteers also became part of the group as they would be continuing the job after the students left.

The family sort of treated the kids more like pets. Feed them, wash them and let them on their own.

The students first made them aware that these are human beings we are dealing with. Even if they are mentally challenged they are capable of training up to a certain extent, also they are capable of feeling emotions and more importantly feeling love and care.

The girls defined tasks for each of the child—

A. Prajakta—she is the 12 yr old daughter of Sangita. It was planned to teach her eat on her own and collect her clothes from cupboard for wearing.
B. Prasad- he is the bed ridden 8 yr old child of Mangal. Prasad was never made to sit up. He was even fed in sleeping position. OTs planned to give him different massage and teach his mother and grand mother how to make him sit with support.
C. Pragati—Pragati is 6 yr old hyper active daughter of Mangal. It was planned that she will also be trained to eat on her own.

The OTs worked on these lines. Parents and grandmother participated enthusiastically.
Results can be summarized as---
1. Parents started working with Prasad more. Mother learnt to make him sit and feed. Also they gave him different exercises.
2. Prajakta learnt to take food from utensils into her plate and eat with spoon. For that a bowl like plate was used so that she doesn’t spill food.Also she learnt to pick her clothes from cupboard and take them to bathroom.
3. Parents of Pragati were instructed not to give food to her until she feels hungry.so when she was hungry she sat down and ate on her own.

Great changes in family life
The main change was in the mentality of parents and the grandmother. In Sangita’s words, "I never thought that my daughter understands what I tell her. So I never talked to her. But now I talk to her. Tell her things. And now I realized she understands and responds in her own way."
Not only Sangita but other family members also feel the same.

Now we are sure that this activity will be continued by them only. After the OTs left our volunteers visited the family. It was very satisfying to see that they were following the pattern the OTs gave them.

So this is story of one family. There are many of them in rural part of Kolwan valley with mentally challenged children. They are not aware about mental illness, how to handle such kids, how to train them and how to keep them occupied.

Upcoming project
We need to work on these families too. I would like to have this as our project for NABUUR. How to organize such training---
Some facts are—
1. Families are poor and parents illiterates or semiliterates.
2. Mentally challenged children are grossly neglected. Medicines and other medical help cannot be given to them because of lack of money and also because of lack of facilities at village level.
3. Parents don’t know that such kids are trainable.
4. The kids can’t be brought to Sadhana Village because of physical distance. Also villages are not connected directly by public transport.Some of the kids have physical disability too.

These are some of the problems we have to keep in mind while discussing or planning training.

If you have ideas or want to help out with this project, please join us!

Warm regards,

Ranjana