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?

Blind Rage.

I just read this yesterday. DS is almost 17 and has once-in-a-while "rage" issues - typically he tends to show his anger on himself and bites his arm.

http://www.myaspergerschild.com/2013/10/blind-rage-in-children-on-autism.html

I thought the article was good and thought provoking and provides some ideas. I read the article aloud to my son/wife and we discussed on how he could identify the "beginnings of his rage" and what is that we could do. He shared that when he is melting-down, we not answering his (repetitive) questions and remaining silent really angers him. 

And we were thinking answering will exacerbate the situation!

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.

Using Movies for teachable moments (or teachable hours !)

(As written by DM

From an email she wrote to another mother on how she uses movies to help DS).

DS too was and is interested in Tamil movies.

In 2008 DS was hardly interested in anything only movies and cars (Indian). So I decided to use movies as a medium for learning. He would not understand anything. I tell him the story before hand, give the central story. I was not sure how much he understood. He used to dream while watching, only enjoy the stunts and car crashes. Two years back we have watched a movie everyday during summer holidays, some movies again and for him to comprehend better, which will be at the end of the day after he finishes his daily plan.

These are other things I worked on
1. Feelings
2 .Predicting what will happen
3. Teach  new terms as we encounter
4. Read the review of the movie before watching
5. Ask him the central story
6. Tell which parts he liked and did not like and why
7. Connect some incidents to our life as well while reading. Highlight how son shares things to his parents, I choose the movie I want to talk something about.
8. Now we watch movies, I ask him to choose by reading reviews and check with me. Which he does. He doesn't understand the review but he look at the picture or some words and learning to figure out if it is a good movie or if he will enjoy.

After five years I would say he comprehends the movie better.  I consider the following incidents to be highlights which happened recently.
1. He watched the Hindi movie "Black". He told it is similar to his life - the girl has challenges but tries hard to overcome those.
2. Watched a song video where a boy fights for his girl friend, pictured as a battle. DS told the boy is fighting all the obstacles that comes in the way of his goal. I too wanted to fight my obstacles. This is only realization right now, which I hope we will find ways to put it to practice.

Small Mercies - Photospos Free !

DS had a dream, not like Martin Luther King's but nevertheless something that made him extremely happy and excited. When he shared that with us, he was so delighted that we could see his eyes sparkling and twinkling !

The dream was this: He had dreamt that when he was an adult, he was doing the job of technology repairman - where he is fixing computers, printers, TVs etc. And he was driving his favourite Maruti Esteem car to the houses where he goes for his repair-calls. He added, that he will be first ever repairman who will be driving a car to his work !!

In any case, of late, he has also been saying he wants to do GED... we subtly motivate him that GED kind of education will be helpful for him to achieve his dreams, and it isn't going to be easy to do GED... In any case, as another motivation took, I downloaded a picture of Esteem from the net and super imposed his picture, with a sign of his future company in the car ! We hope this would continue to motivate him; we printed a wallet size photo of this, laminated it for him to keep in his wallet !

Thanks to Photopos application - http://www.photopos.com ; its a free app that helps us to play around with the photos; and in this case, extremely helpful !! The app itself is comparable to Photoshop that we pay big bucks for !

Above is (identity blurred :-)) picture that the app helped me create after merging two separate photos !

Organization...

One of the things that we are wondering that would help kids such as DS is "organization" :-) Let me explain - when there is a constant flow of information, their senses tend to get overwhelmed that it shuts down. For us, in a busy/stressful situation, we tend to organize and structure the situation/environment so that we can manage it. Also, even in a normal situation, when we have information coming at us, I believe, we tend to structure/slot/organize the data so that we make it easy to recall or even understand.

For example, if someone talks to me about how decisions are made my the Japanese PM after discussion at Diet, I can relate it to being a gathering of decision makers rather than to food - it is so, since I'm exposed to Indian parliament model. Also, I make some educated guess about Diet now. I dont really need to read about Diet immediately and I dont feel anymore that lack of knowledge of the word "Diet" to be stressful.

So this summer, we are looking to work with DS on some small micro-exercises.

The intent here is to train the brain to think so. So we are looking at a 5-10min  three step micro-exercises that we would work with DS.

The Step-1 is to get the brain-trained on a very physical thing that he can touch, see and can really relate to. So, for example we will take something like a table and see how is it structured. Just talk about why it is that way - why four legs, why not three legs, why flat top etc etc. At Step-1, my supposition is that his brain is tuned to see a structure/organization in something.

As step-2, we give him something physical and ask him to assemble or organize. Takes about 2-3 minute; Ask him why he organized that in the way he did and why not some other way. He typically responds to with his past experience of what he has seen or done or heard. The intent of step-2 is to take the training in step-1 that is still fresh in his mind and apply that thought process to the problem at hand. The brain is at organize mode now.

As Step-3, we want to give him an abstract data; and follow-up with some question. For example, I gave him "Obama is the president of US and lives in the White-house". The key-indices are President, US, White-house. So, my question is what does he recall when he heard that - i prompted him similarities - US with India, Obama with Pranab M, White-house with Rashtrapati Bhavan...

We are hoping with this training, based on organization/structure,  he would be able to convert data into information and then into insight. An example would be - if we tell him
Data = that tomorrow's going to be 95'F
Information = he should get that it will very hot
Insight = and that he will wear cotton clothes and  hydrate himself...

Not an easy exercise, but we hope to try this out this summer !

ps: Btw, when we go to shops or malls or restaurants, we ask him to tell us how those are organized and why so? When we went to a Indian groceries, he told us how the store was organized - the snacks on the front right, two stacks of shelf with spices, grains and condiments and the vegetables in the back and the freezer along the walls. When I asked him why not mix then, he said it would be tough to find things if the "categories" are mixed. Then I asked him, why not freezer in the middle of the shop, he said then they would need to run the wires down to the center and that would not be easy.

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 !

Aware ?

In managing learning and development at work, I (DD) used to talk about a model with my teams. How we start from "we do not know what we do not know" to 'how we dont realize that we know and do something like a finely tuned machine".

The four stages of development were:

1. Subconscious incompetence (I do not know what I do not know)
2. to Conscious incompetence (I now know what I dont know)
3. to conscious competence (I need to be aware of what I'm doing so that I can do right)
4. to subconscious competence (I just do it, muscle-memory and competence has taken over - just like riding a cycle)

I then applied this to DS's learning and this is where I got to - the labels were simple enough for him to understand and relate to.

1. Subconscious incompetence equates to his core deficits due to his condition - Challenge
2. Conscious incompetence - he develops self awareness about some of his limitations - Awareness
3. Conscious competence - he starts regulating some of his reactions, responses and emotion - Regulation
4. Subconcious competence - he has internalized it and certain things dont faze him any more - Habit

I drew this on his white-board and explained it to him with examples:

In certain cases, he is hovering between 2 and 3.  He is now communicating to us how he has made a lot of r wrong associations when he was young - for example, if he had a bad experience he used to associate that with some other visible symbol - his DM's dress etc; and then he'd start hating that; any references to that visible symbol would bring a bad reaction from him. A few days ago, he went from awareness to regulation. When he was at work (job-training), he said some memory was really bothering him; but since he was at work, he "pushed that memory out" so that he could be professional at work and didn't let that memory affect his work.

It was quite a good progress for us, when he was relating an past experience (through his stories), he used the verbiage in the model - how it was a challenge and how he is aware of it and that behaviour is slowly becoming an habit for him !!!

We need to continue to reiterate this framework to him !

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 !!!

Micro Processes and making connections to macro.

A friend of ours gave a train set a ~year ago. DS had shelved it for a long time not wanting to do anything with it. We have now better counsel to understand that it is not that DS hates those things; he was just feeling inadequate with complexity - DM had very nicely explained what we continue to do with him to develop him in this area in her post.

Last month, DS had looked at the model picture and assembled the train-set. He did so without losing patience or getting tensed.

This was our goal a ~year ago... We believe, one of the aspects of independent living is to able to read clues, find help (instruction) from the eco-system around you - people, books, net etc.  Our micro derivation from that macro was, for example,  he will need to read at instructions (or picture) and be able to do as per instructed. Add to his ability of able to google, assembling from picture is the next step; the future ones would be is read instructions of the manual. He already does some of it, in cooking from a recipe book.

We are focusing more and more on the process and not results - So DM is breaking a lot of stuff into micro-process. Its like the Cynefin problem solving domain in the complex process - when the cause and effect are not directly connected. I kind of explain it as when you put up multiple coloumns, they dont seem to make sense, but at a certain height, a floor appears; then close out the outer coloumns, a building appears. For us the micro-process is like that.

Last summer, DM started on some academics - history, science, using the micro-learning process. In parallel, we also worked on his ability to cook his own food. DS cut veggies at night, and prepared the rice in the morning, he poured idli for his breakfast, DM keeps it int he stove; once cooked, DS need to take out his idlis for his BF; and pack his own lunch - mixing the rice and veggies.

When talking about this to a friend of ours, he said these are things that we did NOT do when we were at DS' age. That is the point of micro-process thing for us. We (as NT) didn't need to, because we had the ability to learn from our surroundings; but for DS it isn't that easy. We need to teach him the process; and the process itself cannot be overwhelming - its needs to micro enough. As he builds a lot of data (or experiences), we see that functional understanding emerging in him, as he suddenly starts to make the connections. Once he makes the connections, the internalization happens.

A simple instance of how he is connecting is this: DS wanted to write an update to his friends. He asked us "why should i repeat the same in multiple mails, why cant i send it to all ?". Then talking aloud,  he himself realized that he is addressing the mail with "name" and some information/data very specific to the person... and also writing something unique for each friend makes each friend special/close. Once he got that, he asked us a lot of questions around family, immediate family, extended family, relatives and distant relatives and how that concentric circle worked !

Not sure, if I've articulated our process clearly :-), but wanted to blog this.

Ah one other thing - the time he starts making connection is this - you'd really find it strange - we go on a long drive - make it a point at least once a week - usually aimlessly drive around back-roads, so that we explore the areas, but importantly, also talk as a family. DS tells us stories during these rides - the stories are basically his own experience fictionalized with different names and settings; and we need to repeat the stories; we've improved the repetition of stories from verbatim to telling the same story from our perspective (mom and dad fictionalized). We too tell stories, where we reiterate some of his journey and how far he has come... These rides are so valuable that this is where these data points come together him cogently; the light comes on !