Here is another success story about conquering the challenges of autism… about a family whose unflinching dedication has helped a bright young girl truly enjoy his life. These Autism Success Stories celebrate the development and achievements of our young stars and their families. Through these experiences, we want you to know how beautiful living with someone with autism is, and that there is always hope and support for you (as a parent and as a professional).
Featuring in February’s autism journal is Manoj Nair, who is a business professional. When Jyo, his wife, took the first real vacation of her life, their daughter, Sam, was left in his care for 14 days. These 2 weeks were a revelation for him. They made him realize why Sam truly deserves being called special for reasons that we can barely think of. Here is Manoj sharing his thoughts and experiences:
The word “surprise” has many synonyms when used in different contexts. The one I would choose to sum up my experience with my very special daughter would be “revelation”. I would also choose another synonym, the “source of amazement” in some context as I articulate the moments that me as a father and my darling daughter Sam (or Sashu as we call her with lots of love) shared in that wonderful fortnight of March 2016.
At the outset, I would like to express my gratitude and heartfelt appreciation to my better-half, my wife Jyo, a very special Mom indeed! What Sam is today, from what she was back in 2007, when we first felt something isn‟t going right, is the determination, commitment, love and care, all packaged into one, of a calm human being, Sam’s Mom – Jyo.
Someone said “special children are meant for special Moms”. How true! Many books and articles on parenting teach us various facets of upbringing. Theory is different from practice, and a special Mom knows what (and how much) it takes to bring that something out of a special child. I am not the right person to write about that complicated journey that transformed – rather ‘continues to transform’ – Sam into a personality of her own. As a management professional, I probably only tried to be a supportive husband and a caring father of two lovely children. For me, these 14 days were reflections of the past and the experience of the present.
What I write is probably the tip of the iceberg. Jyo has braved through many challenging moments. I am fortunate to have seen the easier, yet worth jotting down, ones! Jyo is determined to make Sam a “responsible person who can live on her own like any other woman” on this planet.
It was the second Friday of March 2007 in Dubai. Sam was difficult to manage, stubborn and threw tantrums that were tough to cope with. Two months earlier to that day, we had seen a glimpse of this on a vacation to Singapore. We had to make a decision – a decision that would separate me from Jyo and the children. We decided that our son, who was in the 5th grade, would move back to India to complete his school education. Jyo and Sam would relocate to India and settle down. I had to continue to work in Dubai to ensure I could support the objective behind this decision i.e. give the best possible treatment options for Sam. The aim was to give Jyo the support system with her parents and the social surrounding, something that Dubai lacked. We believed that this step would help Sam calm down and allow us to consider all workable options for her betterment – medical interventions, various therapies, special educator support and so on. It was one hell of a journey, I must admit, that Jyo embarked on. Most times, I was a mere spectator. Here, I want to specially mention of Sanket, our son. He was around 10 years old then. He also needed attention at that age like any child. However, by the grace of God, he was a smart boy who showed remarkable maturity. He coped, supported his mom and ensured he managed most of his daily routine on his own. Yes, he also needed special love and caring moments from his mom. But then, like I mentioned, Jyo was meant to be special. She ensured that Sanket also received his share of care, though I am sure that she would have wanted to give him more than that. He went through all tough moments as well, and had a calming influence on Jyo. He completed another 7 years of high school education and is now doing his undergrad program in Engineering in a prestigious engineering school in India and lives in the college Hostel.
Trust me, only Jyo can describe her 9 years of this journey. I have only made an attempt to summarize in this one paragraph.
Life with a special child is never easy. It’s full of sacrifices! Jyo has never missed out to celebrate the symbolism of Autism Blue on every 2nd day of April with her friends. We are proud to have a special child in Sam!
Sam has transformed on a scale of 1-10, from a 2 in mid-2008 to an 8+ in 2016! This is a father’s assessment, as I have seen the tough moments. At times they were unbearable, irritable to the point of moving away from the scene to avoid losing my temper. This transformation was led by Jyo and we have not left any stone unturned till date. Every possible solution accessible to us in India was tried. Sam’s transformation started off through biomedical interventions under the guidance and consultation of Dr. Kenneth Bock, who, along with his team in New York, have a very special place in our family and our hearts. Had his book been not on the shelf of a book store in Pune, we wonder how far we would have reached today! God has set a destiny for all; he had something for Sam and us too.
Around the same time, Dr. Sunil Anand, a practicing classical Homeopath based in Pune, India, diagnosed Sam closely and helped us with his support in this journey. Both doctors are actively involved even today and have seen Sam’s health and immunity condition improve. Alongside come special educators and physiotherapists, who played a significant role. They were patient and firm when needed. Sam recalls each one of them and has fond memories associated with them. Day in, day out, Sam was involved with something or the other since 2007, when she was around 5. Sam has been a sport; she took it in her stride. Jyo was always on her feet, running around from one therapy to other. Life for her was Sam. Everything revolved around Sam. At times, I too felt, Sam also managed her mood fluctuations in her own way. Special children have a mind of their own like anyone else. But they can surprise you at any moment and leave you in awe. No wonder we call them Special.
Since past two years, Sam has been going through the RDI Program under an able consultant Ms. Jasvinder Kaur Bhatia aka Jassi. Jyo has worked very closely on this program. This program has had a significant impact in the behavior management and life skills in Sam. The transformation of Sam’s behavior, coordination skills, exhibiting self-confidence, being able to comprehend and reason out things, being accommodating, staying calm and composed, having a view of her own are probably the changes that made the 14 days experience even more cherishing for me.
Sam has never stayed without Jyo ever since she was born. To sum up in one line from where Sam came from under the care and watch of Jyo – “People who saw Sam then in 2007 always asked us what her problem was; the people who see her or get to know her now tell us, what is the problem you guys talking about, we don’t see a problem in this child.”
I relocated back to India from Dubai in the middle of 2015. Though my new workplace is not in my home city, it is just 3 hours away. It helps me spend more time and participate in most family events and celebrations with the family. This is where my 14 days of experience begins!
Jyo is a nature loving person. With her fitness schedule- yes, she does find time to ensure she wishes the Sun a very good morning, almost every day of the week. Her morning brisk walks, running schedule towards her dream to participate in a half marathon are some of the challenges she has on her things to-do list. Over our morning tea sessions, I have seen her admire vacation places that are pristine. Her adventurous friends visiting these locations, sharing pictures on the social media and her comments and desire to be part of such a trip came out during our discussions. We too go on vacations, but I sensed that trips like the one she had in mind is better done with her friends and not as a family. I being in India, and being able to spend more family time, and with Sam in particular, suggested to Jyo that she must undertake a trip that she desired. Though she was reluctant, it was Sam who approved. This is when Jyo made her decision to travel to Bhutan on a fourteen days trip. The trip was indeed planned a month earlier, and that helped Jyo to prepare Sam to be with her Papa and explore. I was to work from home for these two weeks while Jyo traveled. That was sorted out as well.
I was also on a business trip, and arrived home on the same day Jyo was to leave for Bhutan. So, no consoling talks between us. Jyo had to handover the schedule of supplements that Sam has to be administered both in the morning and in the evening. Good Lord! the number of supplements in the form of capsules alone is around 32 in the morning! Probably, 80% of the same quantities are administered in the evening. Jyo had them clearly written and stuck on the refrigerator. While she did mention, “in doubt reach me,” I wanted to let Jyo feel that it would be fine and we will manage it out. Sam, for one, never showed discomfort, but I am sure she was anxious, probably more than me. However, she comforted herself by saying “we are gonna have fun”. Luckily, it was a beginning of a weekend, when Jyo left for Bhutan. Sam and I had Saturday and Sunday to us, so we decided we would follow all schedules that mom set up and not waste time.
At this point in time, I have to highlight the importance of yet another person- the home help, Goki. Like they say, you always need a good bunch of people around you to give you that extra bit of confidence and help you sail. Goki has been working at our home since 2007- so is well trained and is versed with the day to day happenings at home with Sam. The food preparation and timing of food for Sam, all was taken care by her. All Sam had to suggest was her preference for food, and Goki would prepare it.
I will articulate my experience under four high key headings for ease of explaining the changes that I have seen in my darling daughter Sam and the lessons learnt or reinforced through them:
After Jyo left, Sam’s first day at school was not a good one. This is in spite of Sam having had a fantastic weekend time with me and her grandparents. She did not have her Mom seeing her off to the school, and probably the fact that Mom wasn’t around hit her for the first time. She understandably threw tantrums at the school, to the point that the Teacher had to explain me about her behavior in front of Sam. I knew that would make Sam nervous. We got into the car, and the music buff Sam is, she immediately asked for the music to be turned on. I had to politely let her know “I am not going to play the music until we reach home”. She simply asked “why?” And, all I said was “I am also upset”. She went quiet, no conversation for the next 10 minutes until we got home.
The first thing she told me after getting home was “I am sorry”. “Was it right thing to do, Sashu?” I quipped. She simply said “I won’t do it again.” I had to be firm, but yet with measured emotions not to make her feel that I am going to be damn angry. I let her know that “if you are upset or something, simply tell the teachers that you be left alone for a while, and that you would be fine after that. You don’t have to disturb other children or misbehave with the teachers”. I also reminded her that it was she and me who gave permission to mom to travel and that Mom also needs a break. She nodded in agreement, and I let the discussion stop right there. However, I was anxious how it would pan out the following days, as we had 10 more school days ahead of us to go before Jyo got back home. I also realized that Sam needed to settle down; as it was the first time she was away from her mom. Just before I saw her off at the school the following day, she looked back and said “I will be good, today”. Wow! Trust me, we shared a hi-five. When I was there to pick her up at the school later in the afternoon, she made it a point from that day and on all the following days by asking the Teaching Staff to let me know she was good at the school! She just floored me. She realized she had to be responsible, she had to behave well and did just that.
Lesson learnt: Be firm, but don’t get worked up. It will spoil the environment and will disturb the otherwise good harmony around us. It is important for us to allow time to accommodate to the Change.
Sam is no different. However, knowing Sam, she adapted well, fast and had the confidence that she would maintain herself well.
Sam is an anxious child. Sam has her own sense of timing, at times fast with stuff she enjoys, at times slower. Being a little short on temper, I could have easily lost my cool many times. However, I was composed and made sure I gave her enough time in hand to accommodate and do her stuff. Be it time to get ready for thee school, or an outing or to eat her breakfast or dinner. I reminded Sam of the schedule of events for the day that mom had prepared and how important it was for us to follow that. Mom is her idol – so the schedule Mom prepared was a motivator of sorts. She couldn’t change what Mom had scripted for her. That formed a good reference for her all the time.
As every other child would do in the Indian context, it is with moms that the children try every trick in the book including throwing tantrums. At the same time, a mom is the best friend to the child as well, as she gets to know most of the good news from them first. Sam knew that she wouldn’t be able to have much flexibility with me. This is a fair representation of my personality. 15 minutes is 15 minutes and she used to be done with that activity. She knew it well. I made it a point to send her subtle messages with extreme softness like Sam is getting delayed for the breakfast and she would be late to school OR the teacher would complain again about the late coming to school etc. She made sure we leave for school in time, except for one of two days when we got delayed but just in time when the school started.
One of Sam’s activities as per the schedule before the day wound up was “story reading with papa”. She was diligent in ensuring that a story is read, with the right emotions. It was so much fun. She would enjoy every bit of it and importantly relate it to her experience and talk about it. There were days, when she chose to watch television (TV) for a while that delayed her sleep time. She herself felt that the story reading time has passed and would suggest that we skip the story for the evening. A self-realization of this nature by Sam was impressive. Instead, I suggested why not she tells me about the program she watched on the TV. She was happy to describe that. That was a story telling of sorts too and she enjoyed that. Next time, she herself asked if I wanted to hear the story from the program she watched on the TV.
Lesson learnt: As long as we have a schedule that sets the order for the day, and are able to stick to that, day starts off with less of pulls and pushes. It is good to know consequence of delay, so children would reason it as well. If you are going to a cinema, a simple statement like “we need to leave by 2.30PM to make sure we don‟t miss the beginning of the movie” does make someone like Sam to adapt differently. But then, after 2.30PM, Sam would take you on by reminding “we are getting late for the movie”. Now, you can’t delay!
The power of conversation with Sam is amazing. Sometimes, when we see a child occupied and indulged with something e.g. maybe a game on the tablet or listening to music of her choice, we tend to not interfere and seek calm moments for ourselves. I am not suggesting we change that. However, if you prod and indulge in a conversation on what is being played, how does it work etc. – it can throw up more about the inner self of the person. Sam has stories of her own. I never experienced the imaginary side of her mind. She would play a game on the tablet and then relate places in the game to the places that we drive past. This is not it, she actually comes up with the names of the places in the order they appear when you drive. Application of sub-conscious memory is not always common when you think where Sam transformed from. However, to comprehend and put it out as thoughts is amazing. It also depicts presence of mind, showcases her likes and preferences. A conversation with Sam is intriguing. Sam has many questions that are wandering in her mind, some light humor and jovial moments to cherish. Unknowingly, Sam comes up with that one liner that tickles you. Wish she also understood what she said was witty! She hasn’t got there yet.
One of the days just before the festival of colors (Holi) was to come up, I was letting Sam know of a villainous character (Gabbar Singh) in a 1975 Indian Movie (Sholay). I was explaining to her how bad the character is and how the Mom‟s protected their children by asking them to go to bed and avoid making noise that would draw the attention of this character to their house. Sam heard me out, took a pause. I thought the conversation is over, and she took it as another story. Innocent as always the special children are, Sam got her primary doubt clarified from me by asking “Papa, this is an imaginary character and not real, right?” I burst out laughing and she was assured that there was nothing to be concerned about. She ended that conversation by saying “he won’t come here”.
Lesson learnt: I had to only practice what we learnt growing up as parents- talk to children; they are full of surprises, full of joy. I felt so happy that Jyo gave me this opportunity, probably a perfect setting for me to cherish.
Sam missed her mom, though she never talked about it openly, except for that reaction on the first day at school after Jyo left. To spice up her mood, I started to show her pictures of Jyo that she sent me regularly from Bhutan. I realized that watching her pictures made Sam miss her Mom more. With consent from Jyo I decided not to show her the pictures anymore. This worked, and Sam was fine. All, that was left for Sam was an opportunity of talking to Mom on phone whenever Jyo called us back. But she never asked for a phone call to be made. She enjoyed the phone conversation lot more, as she could narrate how she is feeling back home and an update of what all she did so far! However, a child‟s love for her mom was always evident with that innocent question from Sam to her Mom “where are you, what will you do now”- that’s her way of asking “what are you guys planning to do now.”
Lesson learnt: Small measures, however tough, if they can create a distraction and if beneficial- go for it. In this case, Sam was at ease. The distraction by watching Mom‟s pictures was off the radar.
What we did together in those 14 days was full of joy! Sheer Joy! I too learnt small wonders of life. Let me share some of the nice moments that will live with me forever:
1. I had to adjust my sleeping time to Sam’s schedule. She made me feel like a child when I had to also hit bed by 9.30PM. Though I used to be up early, a good 8 hours of sleep just makes you more fresh and energetic. The last time I probably experienced that was when I was as old as Sam is now, 13! Thanks Sam for those 13 nights!
2. Summer was picking up, couple of times I felt like grabbing a glass of beer. I once casually asked Sam if I could have a glass of beer and she looked at me and replied “it is not good, but it is ok once in a while”. That one liner probably was picked up by Sam from hear-say, but she used at the right time. A advise of sorts too.
3. Usually, whatever we did is planned. Sam likes things to be planned, so she knows what could be expected. She decided to have Pizza as her lunch on a day. Being a weekend, we had a delayed breakfast. We went to a Mall and Sam chose to play at the games zone and we spent some good time there. It was still a little early for lunch. We decided to walk around in the Mall and passed by the Cinemas. We checked out the movies that were playing and decided to watch one of them. This was unplanned, spontaneous and Sam was pleased too. She reassured herself by validating the reason/logic “we aren’t hungry yet, so this movie is a surprise”. On another day, watching a movie is all about planning in advance. Going forward, Jyo can change plans at will, I would think so!
4. Sam and I ensured that her medication and supplement schedules are never missed out. We participated together in sorting out the medication/supplements. Enjoyed the discipline to follow on the schedule Mom had made. It was fantastic. Sam can work to a timeline! Amazing indeed!
And, finally among all the moments, the last one that that I am going to share will sum up the wonderful experience that Sam had with her papa:
5. One day before Jyo was to arrive back from her vacation, and knowing that Sam has always been with her mom, never ever separated for more than a day without seeing each other, I said to Sam “tomorrow mom is coming back, everything mom will start doing for you, she will give you medicines, supplements, drop you off to school… and Papa won‟t be needed”! Without wasting a moment, she immediately budged in and replied “I need both of you, mama and papa, I like both of you” and she ended by telling me “You will go to office, I will miss you”. The emotions I had then flowing in me is the same that I have as I put this down to words.
We are so privileged to be parent to Sam. Special in many ways! Sam is a bounty of joy. She is full of love. All those who come in contact with her end up loving her! She is a friend to many. If you meet her the first time ever, be assured you would be invited to her next birthday party! That is the innocence personified in Sam.
Once again, I must thank Jyo for giving me this wonderful opportunity! To Sanket, my son, for making me feel how he coped up those moments of hardship in Sam‟s journey. To Sam‟s grandparents and her Aunt Jaya who have special place in Sam‟s heart. They did not need to fill in, because Sam surprised us all. Thanks to the two nice human beings- Sam‟s Doctors and finally to her RDI consultant Jassi- who has worked very closely with Jyo over the past 2 years and we are seeing results from that process coming through.