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 !

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 !

Ecosystem Engineering...

I had earlier talked about how we try and use all the resources available to us in DS' learning and development. We've recruited my (DD's) family and friends to send DS mails, talk to him, give him questions, problems etc.


The thing we are asking the extended ecosystem :-) to focus on is to share their emotional experiences in their life (or as they remember me - DD) as they grew up, apart from giving him some simple academic, but real life problems.


My dad has gotten onto a nice cadence with DS - sending him mail once a week - it has been a wildly successful experiment. DS actually spends time with his mail now - opens a sheet of paper, makes key points from my dad's email and responds to that. My dad's email loosely has three parts, apart from the current status of his life - the sections being (1) sharing his life experience (2) asking an unknown question, so that DS needs to use google or otherwise to find answer and (3) giving him a simple math problem...


Here is one such example of the email:
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2.  When I was a young boy  studying in the 10th standard I got poor marks in Algebra test and when the paper was give to me I got 0 out of 25 but in my geometry paper I got 24 out of 25.  So I got 24 out of 50 which is a pass mark.  I did not tell my father about this as I thought he will get angry and scold me.  I was telling lies that the marks did not come out and finally on a day he told me to get the marks on the next day or he will come to the school and find out the matter.  So on the next day I told me but to my surprise he did not scold me but told me to do better in may next examination.  From that day onwards I decided not to tell lies to my parents or to any other person.
3.  Since you are fond of strawberry I will give a sum on that:  You go to a shop to buy some strawberries and shopkeeper tells you that the price of one packet is. 8.50 dollars.  Being satisfied with the price you bought 5 packets  for which you have given a 50 dollar note.  He was impressed by you and gave a discount and paid back one 10 dollar back.  How much profit you had made. ?

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The interesting thing about #2 above is that it serves two purpose - one is that to say everyone is fallible and prone to make mistakes, which is a big thing for DS (since he is loathe to make mistakes and that has been a previous inhibitor in learning) and secondly teaches some of emotions.

Even some of my friends have been sending emails to DS. The unintended consequences of this has been, the DS's emails to his friends are much more cogent and tends to be a lot more normal.

Well, we will take all the help we can get and we are thankful, that we are getting so much help !

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)

Dream Come True (Learning)

(Chronicled by DM)
One day DS came from school very excited, handing me  some brochures and stating, "I get to go in a stretch limo, if I do this". It was a school program for school children to recruit subscribers for magazines; who gets the most, gets to go by stretch Limo for school dance. DS wasn't quiet sure about what needs to be done, but he was filled with enthusiasm and very optimistic that he will sell more so he could enjoy the experience of going in stretch Limo. This is quiet unusual of DS, first sharing about something that happened in school and secondly showing a great motivation!!!


At that time (about 2 years ago), I was very thrilled we have a good external motivator as DS was resisting to learn anything new, we came with an plan of learning to do 16 (his favorite number) new different things; and named it Stretch Limo Project, wrote the list in the white board (9th Jan 2010). DS was very excited at the idea and was eagerly looking forward to go in Stretch Limo. I thought he would learn the 16 things which will create a bank of successful learning memories for him. We planned,  we would start learning from the list during weekends. After initial few weeks,there was resistance and avoidance. It dawned on me that DS is not feeling competent to learn as there were many gaps in his learning process and also negative memories associated with learning, as a result he is shutting down, just finishing that is minimally required or just plain avoidance. 

In order to activate the learning process for DS, the main things were

• ability to accept novelty/new 
• ability to tolerate uncertainty 
• replace old negative memories associated to new positive memories

I wanted to facilitate to regulate his emotions, creating experiences, increase his awareness while learning, gradually reducing the guidance, making him independent. I understood the regulating DS emotions was key to reduce his learning anxiety, which I learnt from PACE place. I spotlighted the following which evolved over a year responding to DS needs.

• Encourage DS to ask for help if he doesn't know. It is ok, if DS doesn't know - it can be learned; but it is also a process which takes time. Somethings can be learnt quickly, something takes hours to days.
• Let him observe, show and share how we learn when we don't know: Experience of looking for unknown things at  Fry's, Best Buy - they were good places to role model.
• Give DS easy work (which he has learnt) Vs New.
• Ask DS to rate how he felt his learning experience from 10-difficult to 10-easy. Every experience starts as 10-difficult, over a period of time becomes 10-easy.
• It is ok to make mistakes, which are part of learning - Share about the mistakes we and others make.
• Make guesses without worrying if the answer is right or wrong.
• Trying again and again, same and different ways.
• Positive learning attitude for learning giving our best; not just finishing.
• Change his ingrained thoughts to positive ones. DS thinks he is not good if he makes mistakes or doesn't know.

DS ability to learn, try new things and tolerate uncertainty had increased to great extent. DS is able to reflect some negative memories, figuring out how to change them to good episodic memories.


One week we decided to work only on Limo Project, which made him realise that if he does everyday, more than one, he could learn faster. During last summer holidays (in 2011), DS decided to work on two things everyday, so he could finish all the 16 which he did (20th Aug 2011).  However, unfortunately, we could not hire the limo soon after for variety of reasons - school, non-availability, time-change etc.


So this year, as DS enjoys when the weather is warm, we planned to hire a stretch-limo during Spring break.  With DD's niece/her husband, we set up an elaborate plan, saying that we were all going out in their car, that was parked in the visitor's parking. Getting to their car, we just walked past the limo ! 

As we did that, DD  surprised DS by revealing we are going in streach limo. A great suprise for DS, and his dream has come true. The Stretch limo project has created a postive learning experience, which I feel is our foundation for future learning.