Wishing you all a perfect 2020s !

We have been absent from this blog, not writing as much as we should have. The usual litany of excuses hold - busy, fatigue, daily lives, struggles, successes and just lack of will. However, hopefully, we are able to restart this again and hopefully  continue to chrnoicle the journey.

As I look back on the decades of 10s, I can only wish the decade of 20s will be as kind to me/us at the 10s were. 2010s is where we went through the tough road arriving at a very good destination in our lives. We settled;  thankfully got through the really tough times in early 2010s and settled – settled in the new culture, new jobs, new macro routines and new home. It was not (it still isn’t without) conflicts within our minds – there are times, when we feel we are where we shouldn’t be; and we aren’t where we should be, but, the guiding north star has always been one goal. And the 2010s were kind to us towards that goal - that is DS's independent living - We believe now, we are in the vicinity of the goal; and I don’t have any doubt in my mind, that the goal is still afar and the difficulty multiplies as we get closer and closer. And all of us, particularly both of us, have to be in best health and wellness to be able to get there. 

2010s is the decade that we will remember where DS got through the school program, part of post-secondary, got selected to the Project Search a year ahead, for an intense one year training, at the end of which he had motivation/inspiration to look for a job in craiglist, find one, apply for one, go to the interview (with the support of a coach), get the job, but could not join due to procedural gaps. Eventually, it turned out to be good, since he now works in Google cafeteria part-time, but continues to learn through the strugges to be independent. We are cautiously optimistic, but still a long way to go 

As we get into 2020s, our guiding star still remains – hopefully, we continue on our true north; we are going to be more deeply and intensely conflicted, with priorities, doubts and what is right and wrong. I just pray/hope that we continue to have that invisible hand that gently prods us to walk towards true north.

Wish you all a great 2020 and wonderful decade of 2020 !

Different kind of usual December Holidays !

This December our holidays started out different - we went to visit our friend  in his beautiful hill-top house in Solan (near Simla). This was a lovely place, with hills all-around, far away from maddening noise/bustle, beautifully architected home and great hosts. Somehow DS was a bit off - not very sure if it was due to the height, the very narrow path leading to the hill-top, or due the fact that it was very cold in there. He was a bit anxious and we could see that he was not totally into it.

After a week there, we decided to deviate from our typical december holidays - which would be a week in Bangalore and then rest of time (multiple weeks) in Chennai - this was driven due to the flood situation in Chennai. So, we decided to stay 2+ additional weeks in Bangalore and then stay just 4d in Chennai and exit Chennai to the US.

It is in Bangalore he totally blossomed - not sure if it was the familiarity of the place, or he had time to think through things. He was completely present 100% of times - there were no  visibble "coping mechanisms". It is as if, he was a completely different person altogether. He was patient, perseverant and at the same time very communicative of his doubt, if he had one and was unable to understand. His favorite grand parents were also with him. Here are some examples:

1. When we met the ex-Indian fast bowler Srinath, they got talking - Srinath asked DS, that if Dravid is still DS' #1 favorite and what would it take for Srinath to get the #1 spot in DS's all-time favorite list. Pat came the reply - "Mr. Srinath, you come home for Dinner or Lunch - you will be #1 in my books" :-)
2. He was very concerned about his grand-dad - who had difficult in wearing his shoes - DS would immediately, bend down, strap the shoes for him and help him out.
3. Every morning, DS would wake up, and on his own, go out for his exercise walk around the apartment (5-6 laps, and finish his 100x jumping rope) - no reminders required.
4. Since the home is locked through the year, the rooms were dusty, so we used to sleep in the living room at the night - he'd bring the mattresses (carry them on his won - "I will ask for your help if I need them"), bedsheets, pillows and blankets; the next day morning, he'd do the reverse, fold all of them and take them away for storage. He even invented a new way of laying down the pillows - he'd carry them on his back, and would do a somersault, leave the pillows down on the somersault and get up for this next load.
5. He was quite engaged and present when we visited our friends; and even if they were to talk topics that used to freak him out (about cars that he doesn't like). In a family re-union, he enthusiastically participated in playing Tennis and Badminton. We could clearly see, that in Tennis, he remembered and tried to follow his coach's past instruction (hitting over the ball, follow-through). Leaving their home, he made sure that he had collected all the Gym shirts (including DDs), folded them into a bag for carrying them; and made sure we brought it home.
6. He had told his grand-dad that he'd take math lessons from him; and at the outset asked for patience from his grand-dad in teaching him. For a few days, he took out his own laptop to study whatever his tutor had taught him back in the US.
7. DM, DS' aunt had gone dress-shopping along with DS. At the shop, while they were seated and looking around options, an old man walked on - DS immediately stood up and offered his seat to the old man. The old man, who turned out to be the owner of the shop, was so impressed with DS. Later DS told us that working in the Senior Center had taught him to do this.

All of these, in spite, of having exceptions regarding his diet - both on sugar, wheat and dairy, much more frequently. This has made us think on two dimensions:

1. Do we really need this strict a diet ? We are planning to re-introduce dairy in his diet and see what it does. But still keep it gluten free and sugar free
2. Maybe coming to India and staying at our home in Bangalore is a good thing - we need to explore options around in India.

We are so proud of DS of how well he has re-wired himself on this visit and how he has been "present" all the time. I wish we can find that magic potion that has transformed DS during this visit.

AT-EASE Guiding and Learning Monopoly.

(Written by DM, 4years ago AT-EASE model from www.paceplace.org)

I wanted create an experience of playing Monopoly with DS. We deiced to spend couple of minutes playing the game almost every day. At first DS has to be open and accept the novelty of the game which has many numerical operations (DS has lot of resistance to math), I just allowed DS to be part of the game, just rolling the dice & moving his coins. Once DS is at ease, I slow down, allow DS to take initiative to set up the game, wait for him to tell it is my turn, pick a card, giving the money. 

We play Indian version, US version, and credit card version to bring in flexibility, talk about how they are all similar. I talk aloud how DS can do the calculations, sharing that calculating and managing money are hard, encourage DS to use the calculator, nudging him to do the calculations mentally. It took a while for DS to do oral calculations and I reflect on how oral calculations are no longer difficult.  DS is now empowered to do the calculations orally, distribute money, enjoy playing Monopoly game.

There are still lot more to learn about the game and the concepts of mortgage, making money by building houses and hotels, winning/losing etc, which will bring another dimension of experience.

Feedback from the expert:

This is a wonderful breakdown of playing monopoly...however you are creating a complete experience on every level by maintaining your awareness of the AT-EASE model while guiding DS' experience... There is always more to learn the goal is to stay At-ease through the process of acquiring experience/knowledge...so often parents and professionals are concerned with trying to get the child to catch up with their peers or obtain a left brain cognitive skill that the experience is linear; thus lacking the emotionally rich experience associated with at ease learning resulting in tedium, and the lack of motivation to return to the activity for everyone, which reduces frequency of experience and thereby adversely impacting a child's ability to practice trying in order to achieve mastery...the way you are going about guiding monopoly you are not only creating a positive experience in the moment while ensuring DS' interest in future trying!  Well done!

Relating to Circles of Relationships

(written by DM)

DS had the opportunity of attending couple of family celebrations last summer, where he met most of our relatives (close to extended), was involved mostly by observing what is happening, taking part in his way by welcoming everyone. DS takes pride in being open and welcoming, as kid he had meltdowns when either guest comes home or if he was a guest at someone’s place, sure he has come a long way!

DS likes to be connected with family, friends and relatives, but his lack of social skills and inability to understand the subtle and underlying messages has always posed a challenge. DS was very excited at the thought of relatives will never change unlike the acquaintances, friends who keeps changing. DS had difficulty understanding why some buddies keep in touch, others don’t. We had hard time explaining. We did have concentric circles to represent acquaintances, emerging friends, close friends, best friends moving outer to innermost connecting with examples from our experiences. Courtesy Social Thinking. https://www.socialthinking.com/

DS likes to go for long drives especially to airport and is very excited when we have guests. DD came with the idea of role playing picking up family member(s), building a scenario why they are coming, having a small conversation. We came with idea of concentric circles 0, 1, 2, 3 to represent close to distant family, what we share with each circle is different- we share everything with circle 0 and only central information as they become distant, who falls in which circle. DS was very excited and thrilled about the whole process, which triggered lot of questions from him as we continued. Why they are in that circle, why we share only central message to distant people, what makes family members close, why we feel like crying when someone leaves, if a person is in once circle can they move to a different circle in either direction - what could be the reasons, how do we call each relations in our native language and why etc. All these discussions have enabled DS in relating to different circles of relationships and also expanded his thinking in the area of friends/acquaintance as he began relating and connecting to the instances that happened with buddies, who are good friends, why some avoided, why some sent or did not send mail, who are friendly but not friends, who belongs to which circle & why. DS is articulating every relationship starts at circle 3, takes time to evolve to circle 0 where both have to reciprocate, which is tip of the iceberg.

Expressing and Experiencing Nostalgia

(Written by DM)

DS school has a buddies club where group of NT children spends time with all the children in special day class.  DS eagerly looks forward to buddies club meetings. DS enjoys engaging in all the buddies’ activities. DS has connected with few of them also keeps in touch even after they have moved to college. Each year the School District conducts Special Games, where all the special needs children from all the schools gets to participate. A buddy from the Buddies club accompanies DS and each of his classmates, who will encourage, motivate, and support their buddy to try various games. Their buddies cheer them all the way while taking part. The buddies club had planning session for special games this year, as part of the discussion shared the photos from previous year. DS came home excited, saying “I got to see the special games photos of previous years. It brought back all the good memories and good time. I feel very happy and good”.  DS was checking with me and DD if our memories too will be triggered like this. I explained this is natural for everyone, this experience is called Nostalgia.

DS practices math in IXL. At the end of the day, he would want to try the word problems with familiar names instead of names given, we take turns to replace the names. I started saying names from different categories, from his earlier schools, places we stayed. DS responded, “Once you told the names from the old apartment/school it brought back all the good memories of that place, I feel happy and good” DS has begun to express his Nostalgia or is he only articulating now? Not sure about it but DS has been encoding episodic (emotional) memories of his life experiences in his system in spite of being extremely anxious.

Graduations!!!

(Reflections of DM)

DS will be finishing school, in couple of weeks, he will be earning certification of attendance, which does not mean nor has great value in the world right now, but it is great deal of accomplishment for DS and us. As a kid DS, gets very anxious even for the small changes, he used to be upset and have meltdowns for the moon changing it shape every day, flowers wilting, sun not to be seen on cloudy days, trees being cut for widening the roads…All these helped him to understand about phases of moon, life of flower, water cycle etc.,.

When DS is usually in a situations when he is unable to cope/handle/regulate his emotions, makes rules, which gave him a great sense of security, when DS has to face a situation if he has to do against or not follow the rule, DS will be in fight/flight mode, comes with maladaptive practices. For example, DS may not like when we share one of our beans bags to a friend,  he makes a rule in his mind, “I will never use beans bags.” suppressing all his emotions though DS is a pretty verbal. Someday, we may casually say “Let’s sit in bean bag.” the beanbag becomes a big source of anxiety and will trigger a meltdown. We will all be puzzled what is happening and why. DS had built a many walls around him and has shut many things out of his world. We knew DS had difficulty when suddenly something happens he had difficulty in accepting. We were able to get him do few things. Few very good therapist who have worked with DS, tried to help him carry a back pack, took him to a book store, buying gift for him etc., have all mentioned “The day he happily accepts gift with a smile will be his graduation day”; “The day he will buy a book from Barnes and Nobles will be his graduation day.” We went to PACE place, at Oregon, http://www.paceplace.org/, they figured out about DS makes sense of the world and copes by making rules. Their immersion program made DS aware of him making rules, it was yet another journey for us in facilitating DS with rules he made and in overcoming them, over a period of time, DS was able to tell why he made those rules also was able to make connections to the previous rules, who and how we helped him. DS now happily accepts gifts, carries backpack, buys books etc… DS story about his rules http://www.vibgyorchild.blogspot.com/2014/05/rules-that-ruled.html [Middle school graduation]

DS brain is wired to avoid unpleasant situations by making rules, one of the rule, I consider mother of all the rules was made when he was 3, Colorado (not diagnosed), I usually walk to the school, and one day I picked him up in car later we moved back to India and I never drove, when we have to shift to US in 2008, DS condition to move, “Mom should not drive in US because unexpectedly she drove to playschool.” DS has grown up to where I can drive but not with him. The idea/thought of me driving him has becomes the big barrier for him to plan an outing with his friends, to talk when anyone talk about cars/mom driving, shift the house etc. DS is now in awareness stage that this rule is not helping him, makes him feel nervous, anxious and it affects other things. DS finally said, “One day I will eventually get used to mom driving the car with me. Right now I will not let it affect shifting house or my outing with my friends or anyone talking about cars.” There is lot of underlying unresolved emotions associated with the rules, which needs to be released and negative memories to be replaced with positive ones [High School Graduation]

The day I will drive the car with him to all the places happily will be his College Bachelor’s Degree Graduation!!! Mom driving car with DS will be end result, what he learns during the process of reaching the dream will becomes his lessons for life! A dream yet to be and will be conquered!!!

Rules that Ruled

DS used to tell stories about his experience as a third person. This is a story which DS wrote in August 2010, 3 months after visiting Pace Place at Oregon.

Once there was a boy called Anil he had so many rules. So his parents taught how to work on them.

One time he went to Chennai to his thatha's (grandpa’s) house there was a lift he had a rule that he won't go in the lift so his driver said now we will go in the lift so he took Anil by the lift down so he broke that rule. Then his driver said I am going to ask your appa (dad) to take in the lift in his office he said I worked on lift rule. And he broke that rule.  This is the lift here you did not go in appa's office.

Then his appa took him in lift in his office. Then he enjoyed it.

Then he had a rule that he won't go in bike so his driver had a bike then his driver said we will go for a round. So he broke the bike ride rule

Then he had a rule that he will not go in train so his driver and his amma (mom) took him in from one

Station to another station and he broke that rule.

Next he had a rule of going in auto (a three wheeler) so his amma said we will go in auto for a round so he broke that rule.

Next he had a rule of his uncle coming to Bangalore then his appa said uncle sold his fiat car and he is going to buy Uno car for you and his amma said uncle is coming to tell you that he sold his fiat car and he is buying Uno car. Then he broke that rule.

Next while he came to U.S. Then he had a rule that he won't sleep on long pillow and he will sleep on

Short pillow. Then he hugged long pillow and he broke that rule.

Then he had a rule about U.S. School then he went to the school and broke that rule. Then he had a rule about U.S. School bus then he went on the school bus and broke that rule. Then new had a rule that he won't go in U.S. buses then he went on the bus broke that rule. Then he had a rule about U.S. Trains then he went on the train broke that rule.

Then he had a rule about Chennai train then he went on the train in Chennai and broke that rule.

The he had a rule about Bombay then he went to Bombay.  In Bombay one time he went in bus to hotel in Bombay and he talked to his uncle next day he went to temple , gate way of India and to a garden and he saw Ashok pillar in Bombay and his uncle taught him nice exercise then he broke Bombay rule.

He had a rule about books then he read Tom Sawyer and King Ashoka. 

DS experiences at Pace Place,

Then he went to a place where 3 people came their names were Sam, Tom and Edward.

First day Sam came first and played with him Egyptian war. Tom came and played with him monster game he enjoyed the game. Edward came and played police robber game and he said come we will go to book store and stop at Movie Theater then he went to the book store and enjoyed.

Second day Tom came and talked about backpack he was crying and Tom said calm down.  Then he came out and he said I want a wheel backpack and Tom said if you are crying you need to calm down and he asked tom am I ready he said yes then he said I'll throw the backpack Tom said if you are being so bossy you need to calm down. Then he calmed down then he played monster game. Then Sam came took him to tennis court and Sam said let’s not talk about back pack.

Third day Sam came and said we will buy pant and his appa said what we are going to do is we are going to shop and buy a pant for you. Then Edward came and said let’s play police robber and play horse shoes and go in bridge. Then he taught him rating.

Fourth next day Tom came and said let’s buy a backpack and he bought a backpack. He was talking to his amma about Cupertino that he won't carry backpack and Tom said let’s not talk about Cupertino. Then Tom played monster and played giant swing. Edward played bowling and police robber.

Fifth day Tom came and played monster and he wear connector with him and Sam came and took him for movie Anil cried very badly.

After some time Sam came to California and took a class. Anil, his appa and his amma decided to meet

Sam and he was worried will Sam work on his rules then Anil's appa said he won't break your rules

Once when they came to the hall Sam was working then his appa showed Tom in the camera.

Then he saw Edward's name was there then his appa said one boy had a rule about rides they broke that rule.

And Sam’s name was there one boy had a rule about car container truck the broke that rule.

Once the class was over Anil talked to Sam and his appa said to Sam that he was worried that you will work on his rules then Anil shared that he had rasam (south Indian soup) and when my brother came I played Wii. Then I watched Iron man 2 .Then Sam said you don't need those rules come on.

Challenges ? What is that?

In one of the discussions at work, we were talking about challenges - basically the question was what were the challenges that each one of us faced in our past that made us feel good... I had to think quite deeply about it to even come up with one. I really could not pick one - the reason is its not that I had too many or something like that - but I do have a different perspective of "challenge"... I see every day DS making a great effort, struggle with himself in trying alter his 'DNA' - trying to reprogram himself and re-wire himself; getting over the core-deficits that he has - compared to what he is going through and making a very conscious, honest and tremendous effort to change something that is fundamental to his being, is bring a new perspective to me - More and more,  I realize how blessed rest of us are - we assume stuff and take on stuff to think those are "problems to solve" - really? Let us try rewiring ourselves, like becoming ambidexterous, an introvert becoming an extrovert, a right-hander becoming left-hander !

In any case, DS' struggle and his effort are bearing fruit... See attached email exchange between a doctor and us. We sent an email to the doctor asking for some advice, and this is how she responded back with... It is so heart-warming !!!
(bit modified)

------------------- Forwarded message --------------------------
From: a doctor
Date: Thu, Jan 23, 2014 at 9:33 AM
Subject: Re: Quick Question...
To: DD/DM

Thank you and wish you all a very Happy New Year too. 

I find it very fascinating that you have come up with this model and your own little strategy to help DS. 

Now let's assume that for a minute that DS didn't have core-deficits. He was a regular kid with regular friends and all else. He would still have problems with his peers, issues as a teen, perhaps girl issues etc. Going through all of that could be very enriching, but at times painful and sometimes even taxing. But that's all part of the process of growing up. And one must go through it to emerge whole and complete. It's like a caterpillar- the metamorphosis is not easy, but worth the wait. 

So I'm sure as parents you want to make this ride as bump less and easy as possible, but that might not help with his growth. So in my opinion you are already doing the best for him- letting him learn on his own. Yes- he will lean on you in trying times, and he should know you will always be there for him. It is important to always keep the communication open no matter how trivial the matter.

So as parents sometime it is imperative to let your child fall, just so he knows he can get up, dust off his hands and run on his own again. This gives the child a tremendous boost of self worth and confidence. 

Of course you will tell me that DS isn't like others, so shouldn't we be more cautious with him? This is where I find it fascinating that every time you write to me I see him leaning more and more towards so called 'normal'; and you with normal parental anxieties and worries. 

So it's really great that you are doing so much and relax. He'll be fine. He's a great kid!

Good luck always. 

Warmly,

Doc

--------

On 22-Jan-2014, at 9:57, DD; wrote:

Dear Dr,

First, wish you and your family a very healthy/happy 2014 ! I hope you are doing well.

We wanted to write to you on a quick question... We have come up a model called CARS and base memory. 

CARS implying - Challenge, Awareness, Regulate and Sustain

and Base Memory - A way that he can replace and unpleasant base memory that led him to make some rules about certain things (for example, he didn't like Ambassador car, since when he was a kid, I scolded him and smacked him in his bottom for something)

So now that he is aware of his challenge of the Amby cars, he is trying to regulate it, by going changing the base memory - by traveling in that car; thats one example.

The other one is that - he doesn't like his mom wearing baseball caps - so when she wore it, he took a photo of it on his iPhone and said he'd look at it to sustain his awareness and tolerance of the caps.

We have written about this approach in our blog - http://vibgyorchild.blogspot.com/2014/01/the-good-carbs-model.html

Now the new problem - He is actually going ahead of "challenge" phase in the above model. Earlier, when he wasn't able to handle something emotionally, he used to manage it mentally by making rules in his mind, that later shows up as challenge. Now he is trying hard not to make those rules. For example, he doesn't like his mom driving cars - but now he has understood that and has made a plan for his mom to drive the car - but we can see that he is really struggling with that concept - it is as if he is trying hard to re-write his own DNA and his core that is signature of his deficits... We can see he is going through a lot of "pain", in trying very hard not to make rules to manage an emotional situation. Loss of his imaginary friends and recent expulsion of one of his friend from school has also set him back without having much of friends at school. We believe, he is also "discovering" himself vis-a-vis others that he interacts with.

Although, from a macro view, we think it is really good for him as he understands some of these situations and handles himself, but at a micro view it is really tough to see him go through this phase; we'd like to see if there is anything we can do help him and ease him through this phase.

Anything that you can think of that you think will help, please do let us know !

Thank you very much, in advance,

DD/DM

The "good CARBS" :-) Model..

Sometime ago, we talked about this model of four stages of development here.

This winter holiday, we made a break through on two fronts.

First one on the model above. We made a small change. Challenge -> Aware -> Regulate -> Sustain - this acronyms to CARS - guess what, that are DS's favorite topic. Now he has adopted this model really well. Several times, he has pointed to one of his problem areas and have said, I'm "challenged" here, how do I become aware of it? And on bad dreams over night impacting his motivation next day - he asked us, I'm aware that this happening, how do I regulate it? How do I sustain it? He has used this model on several occasions to ask us questions on how he could handle a situation. We are so glad !!!

The other one we introduced this is the "base memory". The principle is, DS has certain associations he has made due to certain circumstances. For example, he'd not like a blue dress of his mom, since she had scolded him wearing blue dress when he was a kid - such emotions are deep rooted in him. When we introduced the base-memory to him, he now is exploring the reason for certain base memories (that plays right into "Challenge" of CARS). We've revisited some of his base memories and created better experiences for him; and that we (including him) call replacing base memory! 

So CARS and Base-memory anagrams to CARBS :-) But this seems to be good CARBS.

Questions, questions...

As I had mentioned in the previous post on how he has lucidity when he is engaged and not anxious - here are some of the questions he has asked us.......

1. Before mixer and grinder what  did people use ?

2. Before electricity was there how were the dosai made ?

3. Why factory smoke comes?

4. Why does his teacher ask DS, in recycle factory to stay close to him (the teacher) always?

5. Why if someone comes to SSA they will have a car?

6. Why poor people also go to foreign countries?

7. why earlier transportation was slow, now it is fast - what makes is faster and faster?

8. Why population gets more?

9. Why family gets bigger and bigger?

10. why we cant give up one person for another person?

Big Boy, big thoughts !

When we go to wholesale store (Costco), we buy quite a bit of stuff. It fits into two large bags (about 15-20 pounds of stuff) and 2 small bags (5lbs each) and then miscellaneous jars. Usually I carry two large bags in either of my arm from car park to home and DS and DM carry smaller ones (and milk cartons). Yesterday, I had a right shoulder pain and DM forgot the smaller bags to the store. So we had to fill the stuff in three large bags. On coming home, DS insisted that I carry only one (in my left hand) and he'd carry two large bags. I was not certain and told him that I can come back again or he can come back again. But he insisted that I should not carry and he carried two large bags in either of his hands and walked up the stairs too. Quite a feat ! :-) Made me proud !

In his lucid situations, like carrying the bags yesterday, and when he and I go for a walk, he is just too normal! He related how he got "punished" yesterday at school and didn't go to the outing with rest of the class (forget the reason for now). But he shared with me that instead of sitting in the class, he was open and went out to the school quad and there he got to meet his friends and talk with them. And how his friend shared that he is going to be 18 etc. DS said, because he was open in spite of bad thing (that he couldn't go with rest of the class for a community outing) that happened, he saw more good things happening. I told him about the 'when a door closes another opens'. 

We feel that he is going through some severe thought process. There are highs and there are lows. Lows are tough, but I somehow feel, through this stage he will come out better on the other side of deal. We also decided to talk to an expert  once a month, just to bounce off ideas; costs us money, but I think its worth it.

Loss of a friend... sad, but...

DS had a very good friend (lets call him Vish). Apparently, at school, they eat lunch together and go on walks together etc etc. However, recently, he got into a problem with him - apparently, when they were running together he bumped into him and his friend was hurt; got angry, words escalated and the friend stopped being a friend. DS was devastated - for two days he just couldn't sleep and at school, he was fighting back tears all the time; he sought permission from his teachers, stepped out of the class room and called us a couple of times, sometimes telling us bravely that he was fine. We can really feel how he was hurting and how much struggle he was going through - he said earlier I saw him so many times now, I cannot see him.. We were really sad ourselves as to why God chooses certain path... but...

The kicker is this - it was a pretend friend. And DS knew it is an imaginary friend and he is not real. In fact, he didn't talk about his predicament with anyone else (teachers, his class friends) except us (parents). So he is very well aware that friend was a pretend one. We thought of many ideas to explain, but just hit upon one. About an year ago, he had a real friend in school (lets call him George). They were pretty close, but then George started telling DS to get rid of his other friends that DS didn't like. So he stopped being friends with George. We used that to tell DS that sub-consciously he also let Vish have his space so that Vish can go make other friends...And that Vish may have gone to India to meet his family and friends and he should be back at a later date. That seemed to click with him and he settled a lot...We now are past that "date of return" and DS still seems ok.

However, we suddenly see a upsurge in his social behaviour; and he wanting to connect back to real people. When talked to couple of specialist, they believe, developmentally he could be at that phase, where he really wants to make friends and is realizing that is far more rewarding to have friends. He has become socially "present" in a group and very consciously making effort to reach out and engage in a conversation.

A few examples in the past month:

• My cousin and his family were visiting us - during the dinner (last day before they left), on his own, he invited them to a function we are going to have in August; and expressing it was pleasure them all visiting, asking to keep in touch via skype.
• He genuinely seemed interested in following French open tennis - not just watching without engaged, but really following the scores on the net and figuring out who is winning and who is losing (His favourite players are Federer and Nadal. He believed that knowing the scores would help him have a conversation with a friend of his (a tennis fan) in the field of his (friend's) interest.
• In his teach social class, there was a new student from Philippines - who had baked some cookies; DS had tasted it. However, on his return, without telling us, he had mailed his "session-mate" complimenting on the taste of the cookies and how he enjoyed those and thanking him. 

And much more in the past month... We really hope this is another inflection point in his growth and hopefully it continues through the summer and during our upcoming India visit too. To us (particularly me, DF) this is yet another reiteration of what I've realized before - Every challenge is an opportunity provided my Him that our simple minds are yet to fathom !!!

Thank God !

Ideas at the intersection of white space !

Here is a new one from DS.

In high school he needs to take electives - in the 9th grade, he took 3D design, in the 10th std Art-work and currently in the 11th (junior year)  he is doing computer applications. For next year (12th) he did not choose any of these but has opted for "choir singing".

When I asked him why he didn't choose computer applications again, he said that he has already experienced that and he wants to have new experiences. And added the kicker - 'only if I have more experiences, I will have more ideas on what to do"...

Whoever said ideas exist in the white-space between various faculties !!! :-)

{Btw, we ourselves are not sure - should we be ok with him taking Choir-singing or ask him to continue with Computer application; while Computer applications may make him more employable, we are wondering if singing could be his calling - since of late, he has shown interest in learning movies songs and singing along with them... When talking to another friend of mine, he pointed out to a very relevant fact too - thus far the electives has been individual, where as the Choir singing is a team activity - may be there is an internal method to why DS chose singing to other individual stuff... Thoughts ? }

The Future, Imagined (by self !)...

DS is doing a project for the school - he needs to prepare 10 slides on when he grows up, what job would he want...

Here is his list that he came up with:

1. He wants to stuff cotton in a pillow factory (this has been his dream since a kid - i.e., to have a pillow factory, now I think he realizes he cannot be a "manager", so he wants to be "stuffer", because he has done that at home). And of course, he wants to drive cars helping people to go from one place to another.
2. He wants to help old people. He pointed out that,  "I help thatha (his grand-dad), I would like to help old people"
3. He wants to teach kids - on what is right and what is wrong. "I want to teach young kids"
4. "I want to help kids who have no parents. I want to work in the orphanage, where kids dont have parents and help those kids"

Somewhere, he has a great, and importantly kind, heart ! I hope his kindness gets rewarded by the Gods.

Owned !!!!!

I had earlier talked about Master Jay (a  private instructor /therapist) coming in and working with DS twice a week for about 45 minutes.

As he was works DS out, the master typically takes a micro-break or three, to explain or let us know his approach and why he is doing a specific exercise. Once during such micro-breaks, he was talking to us, explaining about a specific kind of massage that helps anxiety or hyper-activity in these kids.  The massage was to roll a small squeeze-ball (soft ball) between the DS's back with our flat palms. He demonstrated it, by rolling the ball on DS's back. Our conversation continued. He then said it helps the kids settle, calm down and sleep better. We responded saying, "touch wood, thats one thing we didn't have to worry about DS since his kid-days, since he was always a good sleeper". blah, blah...

As we were talking, DS who probably was tired due to the exercises, lay down on the exercise mat. We noticed that, stopped our discussion and asked him - "hey, what are you doing ?"

DS responded, "I'm just showing it works !!"...


O W N E D !!!!!

To sweat or not to sweat

[Written by DM]

Sunday morning, DS rushed to kitchen told his sweater is dirty; requested me to wash it today so he could wear it for School. I washed and kept it ready. Monday DS was getting ready for school wore the sweater and felt it was tight. DS was very disappointed and upset. DS liked the sweater very much and doesn't like to change what he has been doing for many months. That too it was a sweater that his dad used to wear.

DS now have to regulate his emotions, find what to wear; his emotions should not come in the way of him getting ready which sometimes is a challenge for him. DS came with ideas, that he will wear the jacket which he used to wear to other places, he was not happy as those jackets were old. DS did ask me what he can wear to keep himself warm. I asked him to wear the other old sweater and wear a jacket on top. He wasn't very happy. I was wondering if he will miss the bus, if we will find another sweater/jacket to wear, will his emotion affect his eating and many other thoughts came to me. As these thoughts coming to me, I was getting irritated, realized that my thoughts and feelings is not going to help DS. I decided I should not let my emotions come in the way, tried my best to be calm, though I could feel few times getting annoyed, managed not to show it to DS and help him to solve this problem and let him feel good about it as DS is very much aware big reactions are unexpected for small problems.

DS was asking if the sweater shrinked because we washed it, or he is outgrown it. DS upset saw me making dosas rolled with cauliflower curry; he wanted dosas without cauliflower, wanted podi. When I told I made cauliflower as you complained of stomach upset, DS said, OK I will have dosas with Sambar. I had some sambar in the fridge, which I heated. DS said he would like to have cauliflower curry. I know all these back forth talking about what he wants to have with dosa is because he was upset about the sweater. I just reflected his feelings that he is upset as the sweater is tight. I told let me stretch it and iron it. DS was very happy and relieved, hoping the sweater would fit. DS started having his dosas, I appreciated DS as his eating not getting affected because he is upset, also coming with good ideas of what to wear. I told this is the way to solve a problem, we try one way if it does not work, we have to come with another one, till we find a way which works. Once I finished ironing he wanted to try the sweater out immediatly and then eat. I encouraged him to eat fast and then try. It was a double sided sweater. DS said he will try both sides and see, again he was coming with what he can do. He tried both the sides, till felt it was tight. He wanted me to come with some ideas.

I told if you can manage bit uneasiness today, you will feel comfortable tomorrow. I asked him to wear one sweatshirt and jacket, he was still not happy, asking me give him more options. I was getting annoyed, but calmly told I am thinking about it. You too can also think what to wear. After a while DS said he can wear a sleeveless jacket and a full jacket. I was soooo happy that he found what he can wear, I could feel he was happy to have solved the problem. This experience ended with a positive note for DS that he can solve the problem and feel good. It was a learning experience for me not to get carried away with my emotions/thoughts but to stay calm and be AT-EASE. We should now label it the "sweater problem" to use it as an example for other similar issues.

The Emerging Future, Imagined...

We had a blog called "The Emerging Future, Imagined...". The intent of the blog was imagine a future for DS and talk to him about that through stories. The character in those stories were Rahul, who is always four years older than DS; and the stories would be out Rahul's experience through life. The intent was to provide a picture to DS about what his life in the future could be.

We started on this about 4-5 years ago, but it kind of fell through, since the stories were hijacked by DS, who used those to recall his experiences. We didn't try to push him back on the Rahul line, since we found that when DS tells stories, he is making connections between disparate set of data and his life experiences and making sense out of it and internalize the learnings.

However... ;-) However, a few weeks ago, in one of our long drives, DS imagined his future and told the story. The character Dev, is a 28 year old young man, who has bought a Maruti Esteem (his dream) and he has gone from the dealership to his parent's house to pick his parents up and they are going to the temple to do the puja for the car.

Oh yes, Dev lives alone on his own and has just asked his parents to look for a girl for him to be a wife !!!

Summer 2012 (a late post though) !

This Summer we wanted our goal to "create a sense of wonder  and  curiosity while learning" as DS is very open to accept novelty and face uncertainty, which evolved to a great experience where both myself and DS are learning continuously, which I believe will be the stepping stone, to be a curious learner.

1. We decided to start each day with something new or fresh, and revise what we have done previously, so information overload is less.
2. Guiding DS to wonder, with all the wonder questions, when, where, who, which, what, etc., resulting in understanding the underlying things.  The same principle for life situations, movies, reading 
3. Breaking a concept to many simple things, explaining each, relating to some experience what DS knows or 
4. Be aware of DS emotions, when overwhelmed guiding him to take a break. DS initially did not want to take break as he thought time out or break is a punishment, DS understands the purpose of time out to calm ourselves so we get back on 
5. Guiding him to do a work at lower level, when he finds the higher level difficult, which gives DS self-confidence.
6. Exploring – trying different ways to finish, like train model, figuring how to play a new game, shopping, finding a place using maps 
7. Independent – During summer school, guiding him to make his own breakfast, lunch etc, plan his time, calendar and follow 
8. Responsible – Encouraging him to take initiative, to do any family work in daily routine on his 
9. His Physical activity with Master Jay gone to next level, which is getting more challenging, which is similar to going to next grade.
10. DS is now getting, it takes more time to understand certain things, but he is more aware that the time taken these days is getting less!!! DS is motivated to learn and try his best.

This was a good summer; although there wasn't a sense of euphoria amongst both of us (DD & DM) like the summer of 2011, we realized, this was the summer of building. Like in a cricket match, once you have a great start to the innings, we need the middle order to build on it - more diligently, deliberately and consciously. Without Dravid's workman-like hard work, Sehwag's top of the order flamboyance would be of naught ! ;-) This summer was the middle-order work. We are sure, it will set him up for the win !

Tipping point, 7 years thence ...

I'm not a big proponent of Father's day or mother's day or day. IMO, its not consistent with our eastern culture, but is very relevant in a western culture, that encourages so much of independence and individuality. In any case, given that we too have become nuclear and removed from joint family, the sentiments of day is becoming more relevant...

...anyways, the above point is orthogonal to what I'm going to write here :-) 7 years ago, I wrote an article - on a whim, i had sent to the newspaper in India, The Hindu. The editor (who has since become a good friend), told me that she will publish it that weekend paper, since it is also father's day weekend. The article was published a day before the father's day.

Through these years, we have made significant progress with DS. One main concern that always stays in back of my mind is if DS would be able to live independent life. That is a constant thing that gnaws at you all the time. But there is a couple of incidents in the past weeks, that I hope is a culmination of all the hard work put in by DW, has the compass pointing true north.

A week ago, we were all going to store to get groceries. As we went out to the car, we heard the music in the air - we realized that it was "concert in the park" day, in the park adjacent to where we stay - during summer, we've 4 weeks of concerts, followed by 4 weeks of movies and end with 4 weeks of play (all weekly once). So we decided to walk to the concert - the DS of old would've felt really uncomfortable about the last minute change; but DS was quite ok - he started asking questions about concert, what it means, and related to the concert he went in middle school; then he asked me if I had been to any concert - I told him I had been to Dire Straits and Pink Floyd concert a long time ago - then came the kicker - he asked me if I had bought the T-Shirt I was wearing at that concert - I was wearing a Pink Floyd T-Shirt; I was quite surprised, that he kept the conversation so contextually relevant and able to connect the dots and have a social conversation. For some unknown reason, at that time, I suddenly felt very very positive that DS can and will possibly lead an independent life.

Then came yesterday - we were all going to a movie in the evening. A movie that DS likes, but in a theater that he hates. But I was not feeling like going to the movie - so asked him if he could change the plan and go for a long drive. He immediately accepted, but then added the icing, by proposing this - "Appa, tomorrrow is father's day - your special day - how about I take you to the movie ? We can go for the drive today and have the movie as a special for you. Also, I'm going to help amma cook your favourite chicken dish; you could have the chicken-leg and I'll just have the small pieces"...

Two  incidents that tells me that he is trending true-north on the awareness, social interactions and also being empathetic ! I dont know, if I'm being right, but on this father' days (2012), seven years since I had asked for pieces of normalcy, we're getting big chunk of those ! I wonder if we have crossed the tipping point !

DS's jokes - compilation !

One would see from DS's jokes that he loves to play on words - he still does... 

1. Changing the rhyme "To market to market:" to  "one market, Two market" (very young age of 3 or 4)
2. Appa kalla grass irrukuthu - Dad has grass in his legs (aged ~5)
3. Mom teaching, Wild animals will be in forest and zoo it will bite. DS said: Mosquito is a wild animal.
4. Dad: If you tell samething daily we will get bored. DS: Appa is going to same office.
5. DS cousins: Do you like Amma or chicken? DS: (Diplomatically) Amma makes chicken.
6. Changing his cousins name "Aishwarya" to "Aish-varadhu" in our language (meaning Aish wont come)
7. While DS taking bath mom saying, "Rub your legs and hands nicley"  - DS laughing "I dont have an eraser here".
8. At school, while playing a teacher asked, "How are you?" DS responded, "Better than you" - dont know what he was really thinking !
9. Changing the song "O Sona O Sona" to  "A Sona, A Sona"
10. VadaPalani – Morphed to dosa palani
11. Egmore station – Morphed to Egg-"less" station
12. Mom: Do you want this MTR pickle, DS: "Give me fullR pickle."
13. What is the difference between butter and butterfly? DS: "butter"
14. Who is the president? "Not me"
15. Dad switches the GPS off, in the car; then DS says"I am the GPS and giving directions" and imitates GPS
16. Mom explaining who a Don is, what he does etc. DS asks, "Do you like don?" Mom: "No"; DS says, "then you should like dusk."
17. DS has his favorite teddy bear, names him Bapu. Dad also calls DS Bapu, at times. Once when Dad called Bapu....DS brought his bear and gives it to dad, saying "take, you asked for Bapu", with all smiles.
18. Making fun of his teachers name Mr.Wan(g) – Mr.Truck
19. Mom talking about helicopters, DS talking about the number of blades in it. DS asking "Will there be an helicopter without blades." Mom thinks; DS says, "A toy broken helicopter!!!"
20. In our friends house there were two side tables, small cube & a medium sized cuboid, DS was curious asked what it is? Our friend explaining about the medium side table, there is a place to keep small stuff like remotes etc., DS asking about the small one, she said "It is solid." DS asking, "Do you call this liquid?"
21. As Ds was going to school, it was drizzling, dad said, "Once you go to school, you run fast to your class, so you don't get wet." Evening when DS came back dad asked,"Did you get wet before going to your class?" DS, "only 1%, but one day I got wet 100%" Dad little worried asked "when was that?" DS,"while taking shower."
22. We wanted to go to our friends place, DS did not want to come, so saying,"I can't come, I have a meeting with my friend."
23. "Appa-Amma have cereals in mornings, thatha-patti watches serials at night"
24. When DS and his friend playing he purposely left 8 while counting. When she asked, "Where is 8?" He said, "It is gone on a leave."
25. Ammavasai – pattivasai (Ammavasai in Tamil is new-moons day; its also a play on the word Amma (meaning mother) - DS changes it to Patti, meaning Grandmom)

(Jokes as compiled around May 2009)