Daily Times

It has been almost six months but her words keep coming back to me. Every time I sit down for writing something, I remember her words: “Write something for us, mothers of special children. Tell people we need support and encouragement.” I have found it hard to gather enough courage to ink those sorrows, but I think it is about time that I fulfilled this responsibility.

I still have vivid memories of Mrs S sitting in front of me in my office. She had come to attend a parent-teacher meeting for her two sons, students at our institute for special children. I had known her for almost five years. I had always seen her wearing a peaceful smile. That day, I praised her efforts and congratulated her on the good performance of her sons. She suddenly broke into tears saying, “We, mothers of special children, are so exhausted and lonely, we need to hear such words more often.”

She told me that her siblings had stopped inviting her to birthdays and parties because they wanted to avoid her sons with special needs. She lived in a joint family, and was asked to lock her boys in the bedroom to ensure that the family of her brother-in-law remained undisturbed.

Journey as a mother of a special child begins as early as family comes to know that the child has a disability. Even today, when research in medical science can explain etiology of most of the disabilities, it is frequently attributed to sins, bad deeds or bad luck of the parents, especially the mother. Many parents have told me that people were cruel enough to say it to their face that a special child was a punishment for their deeds. On the contrary, I strongly believe that they are the blessed ones who had such golden hearts that these innocent and blessed souls were bestowed upon them as a gift.

Let us develop our potential for empathy, and next time when we come across a mother of a special child, let her know that we are proud of her

Usually fathers are very supportive but acceptance of a child with disability by the father is a challenge that some mothers have to face. In 2009, I met a very confident girl, M, with Crouzon Syndrome. Her mother told me that M’s father divorced her because he could not stand the comments and questions from people on the appearance of the girl. The mother was left alone not only to face society but also to bring up M as a strong and a confident girl. She was able to do that. In the next few years, I saw her get depressed and fight back strong for her daughter.

As the child grows older, another challenge awaits. The mother has to educate its siblings that although their brother/sister with special needs is the same as other children but he/she might need some extra support from the siblings. In most of the cases I have witnessed that siblings do become quite empathetic and understanding. The challenge a mother faces in helping her normal children in reaching their maximum potential and yet teaching them to slow down for their sibling with intellectual impairment is something that can only be felt not translated into words.

I remember an eight-year-old boy entering my office and telling me that he had come to take his brother (who is with autism), while mother sitting in the car downstairs was constantly on the phone with me. She was teaching this eight-year-old child that he had to take care of his bhaiya (big brother) even when the parents were no more around. The mother in me was left speechless.

The family of a special needs child has to face annoying stares and upsetting questions at weddings and public places. Sometimes mothers literally sink into social isolation either because they want to avoid harshness towards them and their children with special needs or because the extended family stops inviting them.

Finding an appropriate school, working for hours on assignments given by speech therapists, learning the Braille along the child to ensure home preparation, and many more such responsibilities primarily fall on the shoulders of the mother. With the passage of time getting the child into appropriate life skills, vocational training or academic programme, and then fighting along him/her for his/her right to employment and respectable living becomes a life-long struggle.

Things can become unbearable when people are reluctant to marry the normal siblings of a special child fearing that they have a higher risk of having a special child. I have a very dear friend who is more like an elder sister. Her eldest son, U, is with cerebral palsy, which is not a genetic disorder. Yet her family had to go through this torture. But she stood tall and was committed to find a family that would accept her son as equally respectable and as a valuable member of the family.

A special child’s mother experiences numerous sleepless nights crying soundlessly on tear-soaked pillows, yet she has to keep on giving positive energy, keeping balance in bringing up all her children, meeting demands of the extended family and standing along her husband as the better half.

I am not denying the positive, caring and supportive role our general population plays at countless moments to sooth children with special needs and their families. I am also not trying to depict a pessimistic picture of our society. Respecting the wish of a mother of two teenagers with special needs, I have just made an effort to share some glimpses of the gloomy side of the picture that I have been introduced to by mothers themselves.

Let us develop our potential for empathy, and next time when we come across a mother of a special child, let her know that we are so proud of her. Tell her that she is great, we are there to support her and that she is not alone.

The writer is programs and projects director at the Rising Sun Education and Welfare Society