Sashank's Story

We can never anticipate the cards that are dealt to us in life. This came to my mind when I saw Viji walking past Soi 15 Sukumvit and thought I should talk to her about the 'Challenge' life had presented to them.

On my return from India, I met Murthy at a function and spoke to him about my idea to write a blog about their different experience in bringing up Sashank. Murthy said he would be happy to share their experiences and would also talk to Viji about it. He added that Viji has worked with Sashank for the last fifteen years. Murthy suggested that we see the movie Taare Zameen Par, as this movie is also on the same lines and might interest us. I told him we had seen the movie and it was very good.

We have known Murthy and Viji from almost since we came to Bangkok. We were always happy to meet them. Murthy has a good mannered and pleasant disposition. Viji is equally friendly and is a person who exudes energy and enthusiasm.

Finally we met them a fortnight back to set a date to meet. Viji came home and as we got talking, she began recalling her life the last 15 years. How she had just delivered Sashank and Murthy had just left for work after the delivery.

In her words “I was just beginning to feel relieved of the nine months wait (weight), when the pediatrician walked in to my room and announced ‘your baby is abnormal’, but you can train him to do everything. My sister and a dear friend were with me and we were all shocked and could not comprehend what the doctor was telling me. I immediately pulled myself up and asked the doctor if anything could be done like a blood transfusion or something to make him normal. She said that nothing was possible."

"Murthy rushed back to talk to the doctor about the child’s condition. He first went to see the child. Then he came to the room and told us that everything seems to be fine as he had seen the child. He said that 'I have confirmed that the child had two eyes, ears, ten toes and fingers and looked really cute'."

" The doctor had told us a blood test would confirm their diagnosis in two weeks time. The next two weeks went in hope and prayer. Two weeks later it was confirmed that Sashank had Down syndrome. Murthy advised me 'Don’t discuss Sashank’s condition with anybody, for the simple reason people’s sympathy would lead to apathy and instead of moving ahead we might be forced to move back in life'. He also told me that I have to remain my old lively self and treat life and Sashank very normal. I also had to put up a brave front with my mother who was 73 years old (she also had come with my sister to Bangkok) and my older son Vaibhav.”

As we started talking I realised that all I could do was to put her 'the very normal' questions, which come to our minds about the events that has shaped their lives the last fifteen years and request her to answer them in her and Murthy's words .

I asked her how she had coped with the first few days:

She said "The first few days went in denial. My feelings were really mixed. One part of me said the baby is cute and other part of me was worried about how he will grow up to be. Murthy was and is my pillar of support. Vaibhav my older son was 5 years old then and he was a 'wonder baby' and always assured me that life was worth living. Then my sisters' army decided to take turns coming over to Bangkok and spend time with me. They were very encouraging and taught me how to compartmentalize my life in chunks. As Murthy’s family were in midst of their own problems Murthy decided to keep the news from them for a while. He was also worried and concerned and didn’t want to break the news from Bangkok as it would be hard for them to comprehend. He felt that at that point of time they could not have contributed or improved the situation. I still remember the term Down syndrome and how I associated it with the T.V. serial Life Goes On. Those days this serial was very popular on Television and the hero Chris Burke was a Down syndrome boy. I told my mother maybe Sashank will be like him to look at."

"The pediatrician had suggested that we meet the genetic doctor when Sashank was two months old in 'Theptarin Hospital' on Rama 4 road. I had not heard of any other hospitals but for Bumrungrad, Samitivej, Bangkok Nursing Home and Bangkok General Hospital. So before I took Sashank to Theptarin Hospital I wanted to make sure I was not going to an asylum or a sanatorium to meet this doctor."

" The doctor was a very matter of fact lady and stern. She drew a big circle and prescribed for all the major tests to be done and every single body part had to be tested, to rule out any further hidden complications. She also suggested that we go to the 6th floor for Stimulation for the baby to tone up his muscles. We had to take Sashank every Saturday for the stimulation and later speech therapy classes and follow this routine everyday at home and then go back the following week. We did see a lot of improvement in Sashank and this made us want to continue with the programme till Sashank was 6 years old. I used to look forward to meet parents in similar situation and their word of advice and encouragement meant a lot to me."

" I would like to mention here about two ladies that have contributed to what I could achieve with Sashank till today. Both had Down syndrome sons two years older than Sashank. Initially when I went to the hospital I was very dejected and low and it was this Thai lady who came up to me one day and said 'Metong Kangwan' ( don’t worry) these children are going to be with us for our life time. You must learn to enjoy life, do your best and treat them normal. It was these words of wisdom that has kept me going till date. The smart disposition and the smiling faces of Thais will always be remembered. I also took him to the Siriraj Hospital every Tuesday at 12oclock for group activity. They organized a show once year and gave the children platform to exhibit their talents."

"We also owe so much to the Australian lady and her family who got me all the resources of Australia in Bangkok. I really mean it. She shared every little detail with me. The way she showered the best and treated her son was seen to be believed. She taught me to be assertive, organized and plan life in the Down syndrome context.”

She anticipated my question about whether she could have been tested during pregnancy for any complication:

“I had a happy and an uncomplicated pregnancy. There was no call for any tests. Although I have met a couple from Australia who decided to continue the pregnancy even after it was confirmed that their unborn child had Down syndrome. I feel that the amniocentesis test must be a part of the routine tests. ”

I asked her about her thoughts as she faced her situation:

“All this effort took a big portion of my life and time. I had to read a lot for Sashank. I had to weave my life intricately without disturbing the normalcy of life with an abnormal situation. I had decided not to let home crises reach Murthy’s workplace. I had to be frank with both Murthy and Vaibhav about exposing Sashank to their colleagues and friends. I still remember their faces when they said yes with a smile. I had to balance our lives in the real sense. Sashank’s birth has given us a different perspective in life. We have made conscious effort to be good role models as parents. Our weekend was and has always been very special and full of fun. We have learnt to live life king-size. Murthy told me never to compare Sashank with his age group.”

"The journey with Sashank has made me a very strong person. It was a new learning process and I feel it has transformed us totally."

What was brother Vaibhav's reaction, I asked:

“Vaibhav has always been a very mature boy, able to deal with any situation very calmly, even before Sashank was born. We have always included Vaibhav in Sashank’s upbringing. Even the most difficult situation was projected positively at home. For e.g. when Sashank had to wear hearing aid we were worried about Vaibhavs reaction. We explained to him that just as you wear glasses to see better, Sashank had to wear hearing aid to listen and talk better. Both Murthy and I decided to give just enough information about Sashank to Vaibhav for him to deal at that point of time. So Vaibhav grew up learning about Sashank gradually and adjusted to the situation very well. Vaibhav knows each and every move of Sashank, his likes and dislikes, the way to tackle him and also understands and analyses Sashank’s behavior. Vaibhav has never been embarrassed of Sashank with his friend in all stages of his life. He brings gifts for his brother, especially things which his brother loves and is hard to find in Bangkok. I can only say that Sashank is very lucky to have a wonderful brother like him."

I asked her about the support she got from others:

“ People are very unassuming and welcoming. Our immediate family, friends and community around us are very supportive. We took Sashank to wherever we went. We decided to enroll Sashank into a preschool at 2 yrs and 9 months (the same age Vaibhav started school). Murthy’s only concern was the vicinity of the school with home and hospital. Luckily the first school we went to was so informed about his condition and they accepted him immediately. Little did we realize that Sashank got into the best pre-school. The school just about gave Sashank the best in life from environment, teachers and friends to a great family. It was truly an international school. I owe a lot to the support I have got so far from all of them. We have a support group here and try to meet once in two months. We take two priority questions from the list that need immediate attention and try to come to a solution from other parent’s experiences. I moved to India for two years in 2004 and Sashank was in an integrated school. We had a support group of parents from the same socio economic background.”

How is it to deal with it day after day:

“Sashank is extremely sweet and affectionate and Murthy is always telling that we will end up having diabetes with him. In fact we always wonder the number of kisses he must have got from us in the last 10 years. His upbringing was neither very easy nor very hard, but we had to work towards it. There has been a constant battle and negotiation to achieve something. He has to be reminded on what to do next? This way he has to think and move on. There is focus on his independent skills. There is also a need for a lot of rewards as in stickers, food treats, going out etc. to get him to do things. We have to work towards a written goal. The school and home have to work closely together. If we go on a holiday we have to educate the family we visit and their helpers to some extent. We have never blamed him for not being able to do something. I have always told Shashank where I went.”

When I asked Viji if she knew anybody who was struggling to deal with this problem:

“It is sad to see some families who decided to keep their children indoors due to embarrassment and the face of these unfortunate children said it all. I also noticed that many were not as strong as Sashank because of lack of stimulation exercises. Most of them were not aware of this at all. These children were very wobbly due to poor muscle tone.”

I wondered about the future challenges:

“We have tried out to see if Sashank had any special qualities or talent. We had put him in basketball and football. Then we tried swimming, Taekwondo, swimming and music classes. He still continues to swim. Play Taekwondo and learn Indian dancing. He loves to listen to music and watch T.V. in his leisure time. Sashank has a great sense of direction and remembers names very well. He is very efficient in routines and handling things. He is also good at following instructions. We have to see how we can use his strength. He is a very pushy child by nature and does not take things lying down and is quite demanding till his work is accomplished. So we don’t have to worry about Sashank as he has a survival instinct in him."

"We are trying to get him to take decisions and handle situations. We are also planning to start a trust in India for our children whereby the younger down syndrome children’s parent will take charge. This is still under consideration and we are working towards shaping it. Our future plan is to get him into some small business with the family and to involve him in a routine.”

“We have achieved many milestones with Sashank and there are and will be further milestones to achieve. We feel we have achieved all this but it is 'the super being' who gives us strength and good health.”

“My message to every family with their special child would be to take the decision to break the ice and bring out your special child into the world and then there will be no turning back. This kind of acceptance and exposure help these children to develop into capable individuals and we parents can work towards all the behaviour expectations to survive in the society. We must never under estimate these children and always keep them informed and make them a part of whatever we are doing."

"They pretend not to understand but they need respect and are very sensitive. Chinese families believe that having a special child in the family is a symbol of luck, wealth and prosperity and having Sashank has proved it. He has never had any hurdles in life so far and hope has none in the future."

"I once happened to meet a Guru and asked him about Sashank. He explained that Saints are so tired of doing things for everyone all their life that they ask god to give them one last birth as a human being where they have to be taken care of by others and this last birth they get in the form of a special child. We take this challenge as a blessed challenge.”

I was very moved when I saw their very sincere and heart felt replies to my questions, which were rather easy to frame. Their answers gives us an understanding about dealing with special children and we derive many valuable lessons that we can apply in our lives.

Their story is truly inspiring. It is not only for those who may have children who are special and challenged. It is even for those who have 'not so challenged' children. It may sound like a cliche' but it is very certain that every child is a challenge to their parents. Especially in these times when the amount of information that is available on the internet and in the media can misguide and confuse children and even adults.

I also speak with experience when I say that parents too can become a challenge to their children!

(When I spoke to Murthy to clarify a few points, he said there is a lot of information avaialble on the down syndrome on the web and there a number of doctors who are really capable in dealing with such issues. They are also too happy to talk to anyone who is desirous of speaking to them directly.)