Skip to main content
Submitted by PatientsEngage on 16 June 2017

Mr. R.B. Krishnan, 68 has a 27-year-old son Vivek B.K on the Autism Spectrum and has been a hands-on father, along with his wife. He shares with us his difficult and joyous moments with his son and also offers a few tips for parents in similar situations

The pic above is of Vivek, Mr. Krishnan and his entire family. 

When was your son diagnosed and what were the early symptoms?

Vivek was diagnosed with Autism when he was around 1 ½ years old. He couldn’t stay in play school with the other boys. He avoided company and preferred to be alone. When all the kids were in class, he was out playing and when they were out, he was in. He was difficult to control. He would weep for a long time and the teacher wouldn’t know what to do with him.

My son is 27 now and lives in a home being run by Maithree.

Please describe your experience of managing your child.

It was very tough to manage him as he would swiftly run away here and there. On several occasions we had lost him but he would always come back home. Interestingly, he remembers places, roads, shops, etc. even if he sees them only once.

It was very difficult to teach him self-help skills in daily life. For example, while normal children are eager to copy elders in eating with a spoon, he would resist if we attempted to teach him to use one. We had to be very patient.

Due to his inadequacy in speech and communication skills, he would get frustrated when he couldn’t get his thought through and would start beating us or destroying things. It required a lot of understanding and patience to deal with him.

He always resisted change and we had to struggle to change our plans with him around. If we had mentioned rice and sambar for dinner, he wouldn’t  later accept chapathis and dhal if we happened to change the menu.

He also never liked to touch sticky things with his fingers.

How much do you share caregiver responsibilities with your wife?

In the early years, until my son turned 12, my wife had to struggle a lot with him. She was the one who took him to school every day, stayed there with the teacher and learnt to teach him the skills. When the teacher taught him to wear the buttons of his shirt top down, we had to follow the same at home too. If we tried to button up from the bottom, he would get confused and give up all efforts to button up. My wife would carefully note down all these and teach everyone at home to follow the same methods. We had taken up more than 250 skills to teach him, and my wife did most of the teaching, and we only followed her instructions.

Do you think there is any qualitative difference between you and your wife as caregivers? If so, how do the roles differ?

Yes. My wife is more emotionally involved and more dedicated to the purpose of helping him to live a better life, while I focus more on providing the other necessities like money, materials and cooperation.

Due to the nature and quantum of time and effort I spend with him, he is more obedient to me but tends to take liberties with his mother. This results in tension and exhaustion for her. As a father I only provide support and so the stress is not so high.

Is there a stigma attached to this condition? If so, how did you deal with it?

There could be, in the eyes of others. But we parents feel that we are privileged. We steer clear of people who shun the company of our son due to fear, discomfort or even hatred.

What were some of the challenges you faced and what is your advice to caregivers who face similar challenges?

Toilet training and bathing were the most difficult things we faced. We had to split the toilet training into several smaller tasks and lure him into doing them. We first offered a chocolate even if he showed any sign of having to go to the toilet. Then we gave it only when he stepped into the bathroom. The next step was that he had to sit on the closed toilet seat to win the chocolate. After each step, he would happily open the wrapper and eat it immediately.

At this stage, there was a funny experience. We had gone to someone’s house for a function and they offered the kids chocolates. Our son took them, searched for a toilet, closed the lid, sat on it and started eating them. The lesson he had learnt was to eat chocolates only sitting on a toilet seat. So, we had to devise another way. Such frustrations were many when we went through the teaching process of every skill.

Have you learnt anything in being a caregiver that you wish you knew before?

To pay attention to communication from others. Not to impose only one method of doing things. Sometimes, these kids think out of the box and come up with extraordinary and simple solutions to problems, if only we allowed them to.

How has this been a learning process and what changes have you had to make to your lifestyle because of this?

This is certainly a learning process for us, too. While dealing with our son and training him, we had to look deep into our own attitudes and work constantly on our ego. A lot of soul searching was involved and I feel that we have emerged as better persons due to all these. Compassion, understanding and empathy have crept into our characters without us realising it.. We have also learnt to apply these attitudes to our spouses and all others as well.

Has it been difficult emotionally to cope with your condition?

Yes, absolutely. When we learnt about his condition, we were so innocent that we thought he was ‘artistic’ and wondered why the psychologist had put up a sad face to tell us this! As the real meaning of ‘Autism’ started unfolding, I became so depressed that I lost all interest in my business. And I lost a lot of money, too. I became so obsessed with the question ‘why me?’ that life came to a standstill and I had a heart attack!  

Fortunately, we managed to receive good counselling from a research institute,  Madhuram Narayanan Center, where we learnt to live with the situation and improve on it. My wife even did a short term course on special education.

How much support did you get from your family and friends?

On this count, we were very lucky. Family and friends pitched in and we received monetary, emotional and physical support from all of them.

What was the hardest part of being a caregiver?

We had to deal with our emotional attachment as father and son or mother and son on one hand and a teacher- pupil role on the other. Sometimes both the roles got mixed up and confusion prevailed. It took some counselling and introspection to get some clarity. But each time this happened, our son was the one who was most affected.

How do you take a break and recharge yourself?

Working for Maithree gives us the required attitude and periodic outstation visits give us the recharge required.

Do you have any future plans for settling your child?

We have already left him in the group home run by Maithree at Vembakkam, a small agricultural village. This home is situated in the heart of an agricultural land and is a home away from home for the boys, all of whom are above 26 years of age.

What are the two or three most important advices you would give other parents like you, drawn from your experiences?

1. Train your child from a very early age for self-help in toileting and bathing. It is very difficult to get diligent caregivers for this purpose. After your time, many homes would take your son or daughter in if they have been taught these, but very few would consider it if it is otherwise. So put in all your efforts and never give up this training.

2. Start building a corpus for them as early as possible. Many parents spend crores of rupees to get their normal children into medical college or other institutions abroad, but hesitate to spend on children who have a condition.  This attitude must change, as good care giving for them after the parents are gone would only come at a heavy price. So, please build a corpus for your ward.

3. Build a strong relation with an association of parents in a similar situation and collectively work to educate, train and protect your children. Form groups to work on various aspects of their life. You won’t trust any stranger with your child after you are gone , even if you leave a big corpus for him, will you? So form or join an association with like-minded people and contribute. This will give you the confidence and trust required to leave your ward with them.

Condition