World Autism Awareness Day: ‘Children have to be delighted in’

An excerpt from This Kind of Child: The Disability Story by K. Srilata (Westland, 2022).

Published : Apr 02, 2023 08:00 IST - 6 MINS READ

Music therapist Lakshmi in a session with children on the autism spectrum in Chennai on July 30, 2014.

Music therapist Lakshmi in a session with children on the autism spectrum in Chennai on July 30, 2014. | Photo Credit: M KARUNAKARAN

Swati and Pramath are the parents of 24-year-old Karun, who is on the autism spectrum.

Sixty-two-year-old Waheeda acts as primary caregiver to her daughter, Shameena, who is a thirty-five-year-old woman with an intellectual disability.

This Kind of Child: The Disability Story
By K. Srilata
Westland, 2022
Pages: 336
Price: Rs.599

Sankaravadivelu and Shoba are the parents of Diya, a young woman with a hearing impairment.  

Nimi’s (name changed to protect identity) stepson Aditya (name changed to protect identity) was diagnosed with autism even before she married his father. Nimi was Aditya’s primary caregiver until her divorce from his father some years ago.

What would you tell other parents of children with disabilities, parents in similar situations?

Pramath: Actually, we deal with that a lot. Sometimes it happens that we can see a child has challenges. Sometimes, a parent may even let us know that they have these worries. We tell them then that there are good chances that the child may have autism. Sometimes things turn out well and the child doesn’t really have autism; sometimes they don’t turn out so well.

But when there is a diagnosis, what do I say? The first thing is this: for that parent, somebody has died. There is no point telling him or her these other things. These parents must understand that there is now a real child as opposed to the one they had imagined. There has to be a respectful period of mourning that you allow.

When they reach out to me, I say that this real child is as human and as wonderful as that other child, that there are things to look forward to, that his trajectory may be different but there is one. It is not a flat line—there are ups and downs, you need to be engaged with the child. I say to them, spend time with your child. One of the problems is that you can exhaust yourself running from one point to the other. Everybody knows something that you ought to be doing. Stick to one or two things, available nearby. You need to spend time with your child.

In India, how do you access the second layer of services, somebody who can take your child out for a walk and so on? It is difficult. The school we sent him to in Chennai didn’t work at all. When I would go to fetch him (it was a long commute), he would have his head down on the desk. If he spoke a word or two, they would say he was making progress. Sometimes, we would have just dropped him and on the way home, they would call and say you may have to pick him up because he is very agitated. This is bad for the child and for you.

It is important to find communities of parents and kids right here. We can’t subcontract things to somebody else. It is important for the kids to see people other than their own parents, even if it is canned and contrived. All I am trying to do right now is to take Karun out for long walks, to try to engage him. I think the most important thing is that the focus should be on the child, not on yourself or on other things such as your career.

“It is important to find communities of parents and kids right here. We can’t subcontract things to somebody else.”PramathFather of Karun, 24

Swati: I don’t know how useful this story is to others. I would like to say to other parents, “Accept your children as they are, even as you work towards making them better and stronger. Children have to be delighted in.”

Shoba: I would tell them that there’s hope. Early intervention is the best for the child. Even we were late. We acted on it as soon as we realised and she started talking …

Sankaravadivelu: If the parents are in a remote village, how can they come to Chennai? But we tell them, if you want to educate your children, if you want to get them to talk, bring them to a school like Bala Vidyalaya. Nowadays, many opt for cochlear implants. We consulted a famous ENT for Diya too. He told us very clearly that she didn’t need an implant. She was fine with a hearing aid. Her progress has been exemplary, she is good enough.

Only children who cannot cope with hearing aids need a cochlear implant. Even children with implants have to undergo training in order to talk. But they can hear sounds much better than Diya can. Minute sounds, like birds chirping, she cannot hear. Even with the best of hearing aids, she can’t hear these sounds. I would tell parents, take them to Bala Vidyalaya or other such places, get them to talk, there is life for these kids.

K. Srilata, author of This Kind of Child: The ‘Disability’ Story, at The Hindu Lit For Life Literature Festival in Chennai.

K. Srilata, author of This Kind of Child: The ‘Disability’ Story, at The Hindu Lit For Life Literature Festival in Chennai. | Photo Credit: JOTHI RAMALINGAM B

Shoba: I would advise them to visit the ENT regularly, to upgrade their child’s hearing aids.

Mamtha: At Vidya Sagar, I observed that there are different kinds of parents, parents who have it harder than we do. Some of them are also financially worse off. So, instead of dropping Tarak and coming home, I decided to volunteer at Vidya Sagar. He was in the day centre. Vidya Sagar allows parents to accompany their children until they turn four or four and a half. This is during the period of early intervention. After this period, parents are required to leave the child alone. It was then that I decided to volunteer.

I decided to help other parents. I remember this child called Manikandan. He was from a slum and had multiple disabilities. He only had auditory abilities. So, I thought I could help out by feeding him. Whenever I cooked variety rice, I used to pack one box for him and made sure he always had healthy food. I always kept thinking of ways I could be of help. Even though I was going through a tough time myself, I always had that thought at the back of my mind.

“Consistency in training is important. It is very difficult but you should also be prepared for nothing happening. You have to just accept it.”Nimi,Parent of Aditya

Nimi: It is an emotional thing, parenting a child with a disability. I always believed that your feelings—your worries, your sadness—are transmitted to the child. If you manage to stay calm, that will definitely help the child. Consistency in training is important. It is very difficult but you should also be prepared for nothing happening. You have to just accept it.

We see two types of mothers or parents in general—one lot have totally given up; they have no hope but they still take the child for therapy or whatever though they are so sad and bewildered, and then there’s the other lot who somehow or the other want their children to get better and end up demanding too much of the children, who then become very aggressive. I also feel we should teach these children basic life skills first. Academics and so on come only much later.

Excerpted with permission courtesy Westland Books, 2022.

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