How do you explain unrelated grief ?

Recently, there was a tragedy in the cricket world; As with every Indian male, DD is also a cricket lover, whose once claim to fame has been associated with Cricinfo in its early days.

The death of the Australian cricketer Phil Hughes has left an unfathomable lien of grief in me (DD). For some reason, I believed that the death has transcended culture, country and people. I really dont know if it is due to the fact that PH died so young (25), or that the game that gave us so much joy for me personally in my life, could be so cruel and if the game is a villain of the whole piece or the fact that something that is so innocuous (a normal bouncer) could create such a tragedy, just due to the fact that perfect storm of several unlikely events co-occurred...

In any case, as a part of overcoming the grief and to be able to express the grief, I also took part in the #putoutyourbats with the cricket bat outside the home.

DS wanted to know what this meant and why are we doing this. I had to explain that grief comes in many ways and this is something that isn't logical. My wife started explaining with a past experience that DS went through a long time ago. When we were at a fast-food restaurant, there was this old man, who was driving a car, but had kind of crash-parked on the lawn of the restaurant and we had paramedics with all sirens blaring treating him. At that time, DS had indicated that he had felt sad for the "thatha" although he wasn't related to us.

That was the parallel we had used to explain what I feel. I'm sure that DS would have a lot more questions, but I hope and am sure that he will understand and also feels sadness and joy in equal measures as he goes through his life.

Conserved !

So we had our first brush with the courts in the US.

As the DS turned 18, we had applied for the limited conservatorship for the kid and had got it secured. It was pretty simple and straight forward process, costed a packet (with lawers :-)), but got it done, as we stood in front of the judge; who ready out the docket # and the case name and said "the court accepts the plaintiff's request"... And we are done !

We still continue to be in charge of our kids finance, medical treatment, his choice of living location et al...

Personally, I had mixed emotion - while one part of me was relieved that we have safeguarded DS' risk and exposure; while the other part explored the what-if scenario - isn't the 18 the time that parent's look forward as their child(ren) step bravely in to the world as independent adults?

Chasing (away) the Dreams

When did DS get his first dream? I'm not sure though DS expressed his dream experiences to DD when he was kindergartner, “picture comes while sleeping.” DD explained all of us gets pictures while sleeping called 

We would talk about our dreams, mostly DS got good dreams. It would be as simple as he went in his favorite car or met a favorite person etc., very rarely DS got a bad dream that made him anxious, like the buildings near our house were destroyed. DS would go on and on to check if it would happen. It took time for DS to understand dreams won’t become 

Since last year, DS gets both good and bad dreams equally, affecting his morning routines. If DS gets a good dream he would not want to get up because he did not want to let go of those feelings. If he gets a bad dream he would not want to get up as he was feeling very sad and anxious the whole day repeatedly saying, “my memory is all mixed up; I have only bad memories, all my good memories are gone.”

I was wondering if his increased awareness causing more bad dreams or if he is having difficulty in regulating his feelings or is his memory going blank because he is stressed or his emotional state connecting to all similar experiences.

DS was having hard time to articulate his dreams especially the bad ones DS would share the good ones towards the end of the day, gradually DS started sharing the bad dreams when he was relaxed. Explaining the dreams are not real was not helping 

As DS started sharing more of his bad dreams, I figured those were related to very unpleasant situations, which DS want to avoid completely (made rules DS expressed the thought or talking about those makes him feel very shaky. I explained when he experiences unpleasant situation in dream, he considers it bad dreams. He can have neutral vibes for those experiences if he can associate the emotional memory to have a positive base memory ( If he has a positive base memory for those experiences it will neither be a good nor bad dream. 

This struck a chord with DS, since then DS seemed to have learnt to chase away his bad dreams.

AT-EASE Guiding and Learning Monopoly.

(Written by DM, 4years ago AT-EASE model from

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/ 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.

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.


(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,, 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 [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...

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. 



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 -

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,

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.