The Rainbow Child !

Leveraging the Ecosystem...

2012-01-27T15:43:00.000-08:00

As every other parent of a special child, we too leverage the ecosystem of our support, whichever way we can. We have encouraged our DS's grandparents, cousins and my (DD) friends to write to DD via email. Early on, we needed to sit with DD for him to go through his gmail account and prompt him to respond. The framework DW used to teach DS, was that of a train - it has an engine (greetings, how are you, etc), the carriages (body of the mail with content) and caboose (the final byes, etc etc). The train analogy was used, since DS is a vehicle lover.

Now-a-days, no one needs to sit with DS - every saturday, he logs on to his gmail account and starts responding to emails.

Now that he was on auto-pilot on this, we had asked my (DD) dad, 6-8m ago, to ask him some math questions, in a way, that it is not overwhelming to DS; but position it as something my dad learned when he was the same age and had trouble learning it. Thus, a little by little, DS had graduated to solving progression etc. Last week, he had solved, 3, 5, 8, ___, 17, 23 progression !! (Yay!!!)

So we decided, it is time to up it, a bit. So we asked my dad to ask DS another question (#2) apart from the Math Q (#1). The math question would be the routine, but the second question would be some fact-finding. The intent of asking the question is NOT for him to find the answer. But discover the process of finding the answer. To get my dad to understand, here are the samples that we provided my dad with:

Who were the presidents of USA before and after Clinton ? DS will not know - but the knowledge/resolution process could be:

DS asks us (or)
he asks his teacher at school (or)
he googles
...

How many 100s/centuries Sachin Tendulkar has made in his international cricket career ? DS wont know this; again, his options would be:

he can ask me (or)
he can google (or)
he will figure out just like cars sites (that he loves to go and visit), there are cricket sites too...

So, the intent is, to make him discover the process of learning by himself (functional) rather than finding the answer (skill/knowledge). The belief is, if the process is set, the learning would be a resultant.

The first installment of questions have come through to his mailbox. We'll know how DS handles it soon !

Making of a cheese cake...

2011-11-25T12:19:00.001-08:00

We are in the process of going through a 4d off, as a part of Thanksgiving holiday.

We had decided that we would make a cheese-cake on one of those days. The process to make was to go find a recipe (from book, net or ipad), get the ingredients by going to the store and then come home and make it.

I've this habit of picking up some odd books during garage sales - one such book was a big recipe book that details all kinds of cakes and dessert. So, it was the turn of DS to go through the book to find one. His DM gave him a start page to look at - he looked through it and zeroed on one of the recipe - my suspicion being he just pattern matched 'cheese cake' with one the first title he saw ! :-) But he is not supposed to get off that easy, right ? So I took him to index and told him to look for recipes under cheesecake, and page #s. He found several and kind of understood the difference between contents and index page of a book - we think so. Next is to look for recipes in iPad with the all-recipes and epicurious app. Found several again - the key learning here was the reviews - he understood the number of stars made a difference... In any case, we finally, rejected all the recipes and went back to a simple one from the recipe book.

Next step, go to the store and get all the ingredients. Shopping list - check ! But, both DW and I were pretty much clueless about where to find the ingredients - most of them. For example, the recipe list said 'softened cheese' - so how is it different from other cheese. Implies that we need to ask around at the store with the employees there - as we did this, we gave running commentary that we didn't know and hence we are asking around. Finally got all the ingredients and it was now time to make it.

I've probably stated this earlier in these chronicles. DS, although, doesn't like the sound of blender, has adjusted well with it at school during their cooking classes. But at home, he still has that - so typically, we work that when he is at the bath or out taking out the garbage. Yesterday, it was cold and I didn't want him to go out simply. So I told him the option of staying in a room behind closed doors; he didn't like it, got angry and said, he'd actually operate the blender himself ! He did so (and a day later, he believes that sometimes good things can come out of anger :-)). It was pretty good experience then on - he wanted to operate the egg-beater, to mix the egg, cheese, sour-cream etc... He was completely involved in the whole exercise, helping out, doing (or more than) his part, cleaning up, switching pots and pans etc...

Here is the photo of the end product...

Later on during the night, we went to the movie Real Steel across the street. He enjoyed the movie - also he broke a "rule" for that. He doesn't like to go to a movie after dinner, because it would imply a late-night movie, which he doesn't want to go to. Yesterday, we had dinner and then went to the movie - he really enjoyed it... the only question he asks these days is this - how long is the movie - he has had the Avatar experience - not a 3-hr boring movie ! :-) How true !!! I wouldn't want to subject my greatest enemy to that experience (in fact, not to any of James Cameron experience ! :-))

Type of Questions...

2011-11-23T12:22:00.000-08:00

DS doesn't like to be asked questions. I believe it stems from the fact that he doesn't like to be tested, because he could be wrong. The same reason he is a not a big Math-liker. Because Math has only rights and wrongs and he doesn't like to be wrong...

...similarly questions are the same for him.

A few days ago, I had asked him a question as to why he likes Indian cars more than US cars. That put him in a spin. He started talking through his thinking and was not really clear why I had asked him that question. Did I mean that he should not like Indian cars ? Did I mean that he should know more about US cars ?

We actually discussed through that like part of it - what could be the reason; he had spent more parts of his life in India ? There were new cars every year in India and he could incrementally learn ? Always the first like is a lasting like ? etc etc...

But to us, it gave us a model... There are three types of questions:

Learning Questions - the questions people ask him, when they do not know something. Like when he is asked directions
Thought Questions - the questions people ask him, when they want to get his opinion or his reasoning - things that make him think about the topic or himself. There are no right and wrong, but its very subjective
Test Questions - the questions people ask him, when they want to know what he knows.

of course, the #3 is the one he hates. But, this is the first onslaught :-) He now is aware that these three types exist. The awareness if the first step of internalization... Lets see where it goes.

Non-Expression is not same as non-emotion !

2011-10-07T09:21:00.001-07:00

We had an incident that happened two days ago closer to home. Summary: A guy who got stressed out at work, got a gun, shot around 10 people at his work place (3 fatalities), and then drove his get-a-way car, abandoned it ~4miles from the incident spot, got into the parking lot of our (DD) company, shot a woman wounding her in attempt to car-jack that failed. He was at large for about 24hrs after which he was found and shot dead.

The thing about this was, the suspect's work-place is about 1.5mi west of our home, and my work-place (where the attempted car-jack happened) is about 4mi south-east of our home and DS's school is about 2mi south. When the incident happened and the police were trying to find him, we were all stuck in limbo...

- DS was in the school-bus that got stuck in traffic near school and turned around. We (DW and I) weren't sure how to bring him back, since I had taken the car to work. But, fortunately, the bus itself dropped DS in an hour

- I could not get out of work, since there was a lock-down, since our company wanted us not to get out until the suspect was caught or the perimeter was safe enough to get to the car.

- 5hrs later, we were all evacuated since the police wanted to search our premises if the suspect was able to get in.

so, all in all a stressful day for all of us.

DS was quite worried about the safety of me, car when I was at work, and then as a family when we were all home. He was watching to the TV news to see if the suspect was getting caught.

I was quite concerned about DS's reaction and the stress. I had sent a note to his school asking if they'd have some counselling facilities and how they'd manage student's stress. I had talked to his class teacher about it. He had said that at school, they will talk about it as a class and see if any further counselling is required.

This is what I got from the class teacher today.

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Just wanted to let you know that DS did fine today. He was a bit wound up but we expected it. We did have a class discussion about yesterday and he shared with his class how scared he was about being close to the first situation and then your being at He told us that he cried when he heard you call on the phone as were alright. He thought it was special time for the two of you being together last night as well. I think you know, he loves you deeply!

---

Was so touched and overwhelmed ! Yet another proof that debunks the fallacy. Definitely, the inability is around expression; not love.

2011: DS' Summer of Content & Contentment !

2011-08-22T14:53:00.001-07:00

This summer has been one of the most satisfying ones for us. Something clicked, and it is as if everything was in sync and in rhythm... not just routine, but rhythm.

(To me

Routine = a set of activities done in a similar order, where as

Rhythm = a set of activities done in a similar order, but with great mental engagement and mind-share; where there is an emotional investment).

Here is what we did with DS during this summer:

We worked on the comprehension. We have a guide who comes home for 2hrs/week and works on stories with him. Try to structure his imagination to a cogent set of thoughts. Some of the key words we have used are: "What is the central idea" ? "Central theme" ? "What is peripheral ?" etc.
We worked on "structured Chaos" - Take an unknown situation, like assembling railway-model and then "try" it. The key-words we used were: "Lets try", "Lets make a guess, even if it is wrong", "lets take 3 guesses"
Focus on the "effort" and not "result". I believe this has resonated with DS. Basically, in any thing, we want him to try; and we rated him on his "effort" in the scale of 1 to 10; and not made a big deal of result. So, when he does something, we used to say, "your effort today was "10", and the result was "7", but when you did the same thing a week ago, your effort was "10", but result was only "3". The intent being, if he puts in an honest effort, the results would improve. I think he has understood this.
We focused on physical activity (with a physical trainer - Master Jay - see the link here - the write-up on the last para); Master Jay comes home and trains with DS twice a week - not just physical exercise that helps him in his posture, but also inter-hemispheric integration and proprioceptive awareness. We believe it has helped DS stay with a conversation, make him more perseverant and be present to the situation. Needless to say, when I work with him on rest of the days, I always have used the 'effort' and 'result' grading !
We worked on his independence - ability to plan his time, calendar and finish per calendar. This is in rudimentary stage :-).

We will continue to work on the above 5... We feel very good about his progress and how DS has let us to work with him, this summer. He has started seeing with increasing regularity, within himself, the ability to be self-aware and self-regulate more and more. There are fewer non-negotiables for him these days...

Self Regulation in distress situation...

2011-08-10T11:03:00.001-07:00

Major breakthrough yesterday. Usually, we talk about self-regulation for DS while he is acting silly; Yesterday was the incident about self-regulation in distress. This is the first step towards problem-solving in distress conditions...

Here is the incident:

He has this favourite you-tube video. It is called - "Fiat vanishing from Bombay'. This is a video about phasing out Fiat cars out of Bombay that someone has posted in you-tube. I believe he likes this because, he doesn't like the Fiat car; and it was something that is deep in his psyche. The first time he went to Bombay (aged around 2) to meet our sisters family, they had brought their Fiat to pick us up from the airport and the noise of the car perhaps scared him a lot.

The poster/owner of the youtube video, had removed the clipping yesterday. The usual DS would go ahead and cry and melt-down leading to tangential statements like not wanting the computer yesterday. However, yesterday, once he found that out, he went to the room on his own to "handle" it. DW and I were still unaware of all these, since we were watching TV. Appears after about 10 min he came and told his DM that his favourite video is gone, but he will go calm himself and come back. We could see he was struggling to keep calm and keep his tears off. Then he went away for another 5min and came back much calmer...

He is still disappointed, but we believe he handled it extremely well and is handling it well now. He has thought about alternate way to save some of his favourite videos.

I hope he is able to generalize this experience and apply to others too... Although its a 'proud moment' for us, we (particularly I) need to realize its a still grieving moment for him. And not talk to him about how proud are we, as to how he handled the lost of the video... because any such talk probably reminds him more of the loss ! DM has intuitively understood this and kept away from him and taken the pressure of usual routine off today.

Our belief is that his physical exercises (the training we started with a private trainer) along with DM's internalization of Pace's approach is helping the inflection.

How to extend the motivation ?

2011-03-28T19:56:00.001-07:00

DS, we believe, is quite bright and understand things well. In our opinion, his two main areas, where he lacks are these: (1) Motivation and lack of it (2) Communication effectively what he understands.

We would love to find some "magic" on the motivation part. When he likes something, he goes all the way - not just with the cars (surprise !), but also his learning comes through clearly, in areas when he wants to apply. For example, he doesn't like math very much - my view is that, that is because, in math one is either right or wrong; and he doesn't like being wrong. So learning math is always stressful for him; he wants to check-mark it and finish whatever is in front of him in the paper. Thats the background.

His mother has instituted a process with him, where he earns money and spends money. The way he earns money is by doing things faster than the assigned time. So, if he has 20 minutes to do something, he finishes it in 15, he is 5m early - this will earn twice that - so he earns 10c. He uses this money to spend on what he likes - watching movies, taking breaks, chicken etc.

Few days ago, he was short on cash; he owed his mother some 18c, by end of the day. So, before he went to bed, he declared that he would do one of his chores in 14minutes (which has the allocated time of 20min) and will get the another chore done in 7 minutes (assigned time of 10min). That does take care of the 20c he owed. I was really surprised that he worked this out mentally - the equation I saw was 18 = (12 = [20-14] x 2) + (6 = [10 - 7] x 2)... This has mental addition, multiplication and subtraction...

So where does this motivation come from ? How do we leverage this ? Ideas ?

Anti biotics

2011-03-11T07:36:00.000-08:00

DS was ill few weeks ago - and he was on anti-biotics. As he recovered from his illness (flu), we found him extremely engaged and high self-regulatory behaviour - for example, getting dressed quickly (with no dreaming), finishing his homework quickly with full mental engagement etc etc.

We went back and checked our notes (thanks to DW, who diligently keeps diary of each and every day of his food habits, his behaviour etc for the past several years), and we found similar impact/benefit earlier too.

Talked to the doctor here and he said he has heard similar stories from other parents.

Of course, during illness he is also on a very strict GFCFSF (sugar-free) diet, since he just eats Rice-dosa and rasam-rice... (but because of his dehydration, we did give him salt+sugar water).

Wonder if there is a connection between AB and being in the moment !

The Change

2011-03-05T12:10:00.001-08:00

DS just had a flu and came out of it - He seem to have come out of the chrysalis phase suddenly ! Wonder if this is due to the Antibiotics, but more on that later..

I (DD) had called home from work. Usually DS doesn't pickup the phone at home. This time he picked up the phone and addressed me: "Hi Red" - this is the way he usually calls me. I was very surprised to hear DS speak. I asked him if DW had asked him to talk. DS replied, that he picked the phone on his own, since his mom wasn't available. Then I ask him, but you had said "Hi Red", what if it was somebody else. DS said, "I saw you name in the phone."... And to us, this was cool - this guy not only picked the phone that he usually doesn't like, but was quite engaged in the process and regulated his response accordingly ! Cool...

Another incident: usually he goes to Gym in the morning with his mom. Few days ago, he was holding the door for DW and her friend to come out. The friend of surprised at the chivalry - his response: I was holding the door for both of you like a gentleman. Additionally, he also remembered and thanked our friend for a very good chicken curry when he met her at the gym - the curry, the friend had shared the day before. He told her that the food was very good !

To crown this all (can there be anything more ?), DS is very scared of the vacuum cleaner noise, such that we use it at home when he is not around. At DS's school, they were trying to make the kids learn to use vacuum, but DS was so scared of it. However, in a class discussion, he had set a goal for himself that he'd use the vacuum and will overcome the fear of vacuum cleaner noise. Two days after that resolution, he spilled cheese by mistake. When the teacher asked" how are we going to clean", expecting DS to say, "I will pickup". To the teacher's surprise, DS said, "I will use the vacuum to clean" and went ahead to do so. His teacher was blown away...he immediately called home to let us know. Now DS feels very proud about overcoming his fear!!!

DS seemed very focused the past two weeks. A few days ago, I tried to teach him frisbee, by breaking down into micro-steps; last weekend, when we went to a picnic with his cousin, he very diligently tried throwing the frisbee and did so successfully !

We are crossing our fingers and toes. DS seems to have gone to the next level of self-awareness and self-regulation. He understands what could offend and is building concentric circles of social behaviour - what is acceptable within home isn't acceptable with his cousins; and what is with them will not be acceptable outside of them.

Will keep you all posted.

Transition Pains... ... and gains...

2011-01-21T20:47:00.000-08:00

Have not posted for a long time. There were quite a few things happening at work and at home. Has been a year of tough transitions all across. It has been frustrating and uninspiring; not much motivation to blog... not only on this blog but on the other one too.

Regarding DS, he has moved on from the middle school (where he had really settled and doing well) into high school. In US, going to high school implies, one physically shifts school. For both, DW and I, this was one of trepidation. As expected, DS had enormous challenges in settling in the school. We started with resource classes and special day classes. He seemed to have hard time coping with difficulty quotient that he had become disruptive in the class; and we had complaints frequently. So we had to pull him off these resource class (and replace it with work at home - more of that later). Also, the school resource specialist have worked with the class teacher for certain techniques. Since the past couple of months, DS seems to have settled down very well at school and he now says he loves the school and the teachers in his class* (* see note at the end of this post).

Re his development, physically he has grown very tall - taller than 5'10" (and just hit 14) and stronger, helps me carry grocery bags from the car, including 20-25 pound rice bags. He continues to go to Karate & Tennis class. Over the summer, he has learned to swim the breadth of the pool without keeping his foot down and breathing between strokes. He now goes to once a week swim class, where the teacher says he is quite a natural in his back-stroke. As the soccer season got over, the basket ball started. He wants and is very excited to go to the basket-ball practices.

On the emotional intelligence side: he has become quite flexible - the techniques we learned at Pace Place has helped in getting him to break most of his inflexible rules - so much so that his mother can drive a car (but he would not sit with her - knowing how she drives, even I dont :-) ). He has learned to be in the grey area - or the understanding of it. He has begun rating his experience from 0 to 10 - so its always not black or white as it was before. It was a moment of revelation for us, when he rated two bad experience in negative. And articulated that -3 was worser than -1. He has pretty much on his own on the computer these days - surfing to check for cars, researching about maruti and see helicopter crashes... Sometime, I do wish he surfs the normal ;-) sites that teenagers of his age do !!

Socially, he is more in the group. During our annual winter pilgrimage to India, he was sitting with the group whenever we visited our friends. He also attempted and succeeded quite well in asking return questions to keep the conversation going. The biggest change we saw this time, he didn't try to remove himself from the group setting, but continued to sit with all of us.

On the learning side: His comprehension is improving; we are looking using Linda-Mood Bell of visualizing for reading comprehension. Somehow we believe the time has come where he is ready for higher level of comprehension, that may aid his learning. DW is reading a book on that (link here). We have also effectively used the captive-attention time, via long drives: we typically take a long drive through the suburbs in the sparse weekend traffic, during which we have a very fruitful and productive engagement. Stories (that he makes up) have become an effective way for him to communicate his thoughts and experiences. We believe, through the stories, he is not only getting the intellectual understanding, but also internalizing the message.

In the mindmap model I had posted earlier (link here), I believe, DS has made progress in the flexibility, problem solving, perspective taking, understanding the gray areas and some level of independence. He is also begun to accept failures, which implies he is no longer worried about being wrong and hence not attempting. Simply, DW instituted a simple approach - during the long drives, she will ask a question and DS has to attempt 5 answers including 4 wrong answers. Being ok with wrong, we believe, will in turn reduce some of his anxiety.

So, here we go ! 2011 will be the year of 20++ :-) That is how I want to look at this after the 2010...
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* After all the tribulations of settling down in the high school, DS was one of the 3 students awarded for making the greatest progress since joining ! P....r....o....u.....d !! Of the effort he has made to get here.

Reading and Comprehension

2010-05-25T08:37:00.001-07:00

A friend of ours had asked DW re some of what she does with DS on Reading comprehension and if she had tips on those.

Here's her response.

It is better to start with reading comprehension with simple stories which are direct, doesn't involve tricks, actions/reactions of a character based on their feelings. (Theory of mind skills...intentions/perspectives etc)
Make use small strips of paper where both (DM/DS) draws the characters, places/objects. sometimes when they find drawing to be difficult they just write the words. As DM reads, DS moves around these papers. for eg..a bird flies up in the sky and sat on branch of the tree... he takes the bird makes flying action....make it go up till the sky, make it sit on the branch of the tree..This kind of worked for DS.
If the kid is good in drawing, then the parent can read the sentences the kid can draw ..starting with 2-3 sentences per day. These kids have difficulty to make pictures in their mind or imagine as they are reading. This is a concept from Lindamood Bell where they have methods/strategies to make movies in the head as they are reading.
Comprehension is better when DS reads some passage where he could relate/understand the experience. since he could connect with his own experience. He could understand a book about visit to supermarket than a book about aliens in space.
DW first tells the story for him to understand and then read the story.
DS/DW act out the stories and read it again. The character names in the story would be DS's favourite movie characters (Ashok etc from Agni Natchithiram)
Other strategies which we use subconsciously: DW has to explicitly work with him: When they come across a new word..finding the meaning...how it relates or connects to something he already knows or experienced......Some abstract terms, idioms and phrase needs to be worked on separately

Hope this helps...

Keep on Rockin' the free world !

2010-05-08T08:49:00.000-07:00

Yesterday DS and I were watching a Tamil movie - "Sachin" - a தயிர் சாதம் uncle movie, that DS likes. In the end of the movie, the heroine professes her love for the hero. Watching that, I asked DS what would he do, if he a girl comes and tells him that she loves him.

DS face lit up and all smiles (with lot of shyness etc) and said that he will feel proud about it. And "I will also love her" :) Then for some reason, he said that a girl in his school tells "hi" to him. I wonder if he likes her. He is the one, who usually doesn't talk about girls and runs away if he bring up the subject. He was all lit-up when he talked about the girl. But he didn't know her name, but she knew his. I told him maybe the next time she says Hi he could introduce himself and ask her for her name and be her friend.

Btw, I also told him that particular girl just might be very friendly - just to make sure that he doesn't take it any other way. She would say hi to a few of his class friends too; and its common for girls and boys to be friends with each other (and gave a lot of examples). My point was to tell him that not every girl who says Hi, are the ones you fall in love with !! :-) Although, I believe for a 9-year old (which is where i think he is emotionally), its perfectly normal to believe so !!! So we had this talk for a while and I was glad he shared that with me instantly in that conversation. It was funny to me (and insightful) that he related the girl saying "hi" to him when I asked him the first question... Probably, its his first crush !

In any case, it brought back some of my own mind-set to the fore. When he first diagnosed, I had this Neil Young's (Rockin' the free world) that seemed apt for DS:

"...
There's one more kid
that will never go to school
Never get to fall in love,
never get to be cool"

Now, with the journey we have come with him (a great deal of credit goes to his DM), maybe, he would just be another average and yet another kid who goes to school, will fall in love and gets to be cool !

Which comes first - Right brain or left brain ?

2010-04-24T18:41:00.000-07:00

This has been something on my mind since our last week at Pace Place. The power of right brain (Revolution, inspiration etc etc) versus the left brain (evolution, perspiration etc etc)...

It is quite known that kids in the spectrum have quite a bit of "rules" that governs their day to day life - that kind of shows up as inflexibility and lack of willingness to change and adherence to the sameness. Although DS has made great progress around flexibility over last year; however, there are some few places where he is still inflexible and would not want to change. That stems from a certain of set of rules that he has in his mind. So, we always think these kids are highly logical and analytical and are primarily left brained !

However, there was always an hole in this theory... Because we have seen DS to be highly perceptive; and we have seen that our emotional highs/lows do impact some of DS' thinking and his own moods. Particularly, that of his, DM's. And stepping back, we have found that most of his rules comes from situational incidents that happened at that time.

This was around in our thinking and more so, since we came back from Pace Place. And today morning, something happened that kind of made the light bulb go on for me. DS was typing an email to his grand-parents; and DW was behind him, guiding him. When DS made an error, instead of moving the cursor back to where the error was, he started hitting the back-space, that started erasing all that he had typed. DW who was behind him, seeing him hit back-space, reacted (as is wont with any one), with a bit in higher decibel, that he'd lose all that he had typed. DS who heard it (but wasn't seeing his mom), reacted to the voice (probably, a bit startled at the decibel) with an impromptu "rule" - said he'd start afresh and erased all that he had typed, even beyond the error... Post-that, DW did try and get to the mode in describing the mistake as "small-mistake" (vs medium vs large)... But by that time, DS had "rule" in place...

This actually made me think. In the incident above, it looks like an emotional response has led to the logical action. The first emotion (from his mom) was something he wasn't able to handle; His emotional regulation got him to the comfort zone; that was to have a "logical rule" to that emotion; discard/disown and put a distance between himself and the actions/surroundings that had led to that emotion. And there, birth of the rule.

So, is the spectrum primarily right brained (or inability to handle emotions stemming from right brain) or left brained ? [rhetorical question, btw :-) ]

So from our own perspective, it is clear that we need to do couple of things:

Meet the eye when talking to the DS; and touch is very important for that emotional equilibrium.
Get the positive emotion first, before explaining the logic behind

The other key observation for me was this - the crucial conversations had to happen with him, face to face, with some kind of touch involved. Any conversation with him, sitting side-ways or across rooms aren't going to help and becomes counter-productive. Thinking about it, this is where the RDI principle of "referencing' could really help...

Easier said than done !! :-)

At a Fast Pace !

2010-04-17T08:49:00.000-07:00

Based on a friend's recommendation and talking to another parent who had been through this, we decided to go for the Immersion experience at the PACE Place. [Leave a comment to this blog post with your email id if you need more information on it].

It was a great experience. DW feels very happy about the experience and its as if all the pieces of puzzles are falling in place for her. I'm (DD) more intrigued and I'm in between Storming and Norming phase of Forming-Storming-Norming-Performing phase. I have intellectually understood the concept and have internalized some of them. Its now to get back and do it and make it part of our lives. In any case, our experience has been great and of course, very tiring on all of us. We took some of the challenges with DS head-on (those non-negotiable inflexibility he had). He seems to have come through it. Now the key part of it, is to take that experience and encode it in a way, it becomes repeatable for him. I believe we have some tools for it.

Here is the my list of 13 ! (a bit disparate, but its my list !! :-) )

1. Appeal to the emotional/feeling side before you go the thinking/logical side.
I kind of equated Feeling/thinking ~= Revolutionary/Evolutionary.
Revolutionary changes are quantum leap, where as evolutionary are incremental.
A strong Emotion always trumps thinking.
Do this in the envelope of Bigger-Stronger-Wiser-Kinder

2. Touch, Touch, Touch,
Use Touch to convey emotions/feelings. Silently.
Engage touch while talking.
Disengage touch to communicate disapproval.

3. Anger, Bossy, Irritation (on the DS) countered by higher +ve emotion - push envelope to seek help
(DS base emotion -> safety, fear; ask him to ask questions)

4. Have purposeful motion.
Create obstacles and going around them and create need for purposeful motion (vs Ruminating Emotion)

5. Be conscious of Frequency - Duration - Intensity of any reaction

6. The quantum thing - about preparation and post-summary - Small, Medium, Large (Silliness, anxiety, worry, fun) - The transition between pre and post is the experience. Encode it

7 Use -10 to 0 to +10 to grade silliness, anxiety, worry, fun etc. Do prediction before the event and assess after the event. The difference is again the experience. Through this, look to build anticipation. Anticipation will trump anxiety, which will trump DS's own rules

8. "ASK ME"

9. When throwing a tantrum - "Go to your room" - No anger on our faces - done w/smile (BWSK), as we (DD/DM) continue talking. If 'go to your room' needs to be backed up by a physical push, DD should do it.
Safety is the key" ; can push the envelope up to that point, unless feel safety is threatened
"Ask me 'am i calm'" ?
Hold on to higher positive emotion. Its ok to add edge to the voice.

10. Map the -10 to 0 to +10 scale to Threat (Danger) to Reward (Interest) scale. The key again is the experience. The Fun and the anxiety lines in the graph cross over somewhere during the experience

11. Hand on shoulder or start stop speech to get attention. Eyes follow where the hand goes

12. Baby Brain (makes rules, worries, ruminates, avoids, reacts by being bossy or whiny) Vs Big Kid Brain ( Regulates, organizes, makes sense, deals with the moment)

13. Connector Rx

Here we go - that is my 13 encodes. Now, onward we go !!!

ps: I believe that Eric, Kathi and Steve are perfect complement of each other - this is where the whole was much greater than the sum of the parts...

Progress...

2010-03-27T08:31:00.000-07:00

Trying to restart the chronicles again...

There has been significant progress with the DS. He has also grown a lot - believe he is in the cusp of puberty and we have all our fingers and toes crossed as to what would happen when it hits him ! He is very tall for his age - about 5.9" and quite slender - result of which no pants or shirt fit him !!! For that height, he is expected to be a little more plumper than what he is now. So we go to a shop asking for a 28x32 (waist x length), the girl at the shop goes, Hmmmm... (and I take a glance at DS as to see if he stealing surreptitious glance at the girl) !

DS is going to Tennis and Karate classes. The great thing about these two classes are the teachers have broken them up into simple parts and have been teaching him. So DS, feels highly competent and at the same time in that zone of edge-of-competency, that allows him to make progress. He is very keen to attend karate tournaments and showcase (parts of the) Katha ! One goal for summer, this year is to focus on his physical development a bit - because of height (and possibly weak hara, as we call in Karate), he is hunched... Should work on his middle-body strength this summber.

In any case, we are continuing to do RDI, although not officially - due to work and otherwise, we have taken a 6 month break from it. We are continuing on the Teach Social classes (Erstwhile Michelle Garcia Winner's Social thinking) - that is once a week with another boy. That has been helpful in teaching techniques. He is getting some "organization" (but left brained) concept behind it. One interesting development has been 'story-telling' (linked). DW and I have been using story telling for imagining the future for him and he has been using it to convey his difficulties and experience. While we use Rahul as the central character, he uses two - Anil and Balan. He has been very effectively conveying his experiences in school, through those proxies - his punishment (of teasing and getting to stand outside the class etc etc :) ). We are keeping to that agenda and over-joyed...

Some other snippets

The class teacher tells us he is very social these days. When he gets to the class, before the bell, instead of sitting in the class, he gets his friends out of the class and hangs outside
He is quite bright in the class and comprehends the concepts - once he understands the concepts its easier for him - but is also quite playful and continues to push the boundaries
One night, as I was sitting in the couch, he came and hovered around me a bit, and then said "Dad, I want to talk to you". And asked me about my day and how my office was... My two weeks of stress flew away.
He is beginning to understand relationships are compromises. He is talking about the compromises I've (DD) made and his mother have made. Its like talking about it makes him internalize it a bit more. Now, we can see he is adjusting a lot for our changes. And we have swooped in and taken advantage and make a lot of flexibility changes.
There are still a few core things that he is non-negotiable on (which is why we decided to go to the PACE Place (link here) for their immersion program. Drop us a note, if you want to know more.

I hope we'd be a bit more consistent in posting from now on. And most importantly, the trajectory of the development graph for DS is consistently upward !!

For the newcomers...

2010-02-15T21:12:00.000-08:00

I do not really feel like welcoming you to the blog, since discovering that you have a child with special needs is not something very easy to start with. The intent of this post is to make it a bit easier on you...

You would find a tremendous amount of resources, help and support in many forums on the net (some of the resources on the net are listed on the side). For us, this has been (and still is) a journey, for the past ~10 years... Based on our experience here are a few things you may want to look at first:

This is a journey, its never one and done - there is no magic cure. Its very much like looking for a best possible life for a Neuro-typical child. There is work that needs to be put in both cases; its just a bit different for our children.
For special children, the intervention is (my strong belief) "parent driven, specialist aided" (specialist also encompasses teachers at school). Read as much as possible yourself; ask questions, never be "shy" to propose what you need from school, your aid, intervention specialists etc. Take your time to read without stress.
Share your situation with your family and friends. Once people are aware, the amount of help or how much they'd do is tremendous. What we learned is, if we don't share, then our friends suspect something is different, but are polite enough not to pry or offer help (so that they don't offend you)
There is ENOUGH TIME. Do not rush. It just needs adjustment of your outlook -eventually, be it a normal child or special child, the parents want the child to live independently after them. So, you do not need to rush - there is enough time for the child to develop. Maybe your child would not pass 12th at 17, but would do it at 23 - so what? (and possibly, for independent living, passing 12th may not be required!!)
Set out clear goals for yourself and the child - the goals could be split into micro-goals over a period of 3m. Take it one at a time - remember you have enough time ! :-)
Start your financial planning - plan as if you'd have to support your children beyond you. Look for some annuity based income that starts later in the life for yourself and the child. Plan as if you have to support his/her life span too.
As a family, spend time together - although its easy to say this, this has been one of the areas that has been tough for us too, given that we all have our own needs, distractions and interests.
Finally, stay very very positive. One thing about our kids are that they are very perceptive. It always appears that they sense negativity and it affects them. Once you are positive, you will see doors open and pathways appear. Expect the lows from your kids, and enjoy the highs ! Expecting the lows helps you to stay positive.

I didn't talk much about intervention, since there are so many of them out there; all of them aren't great for all - you just need to research and see which (or a combination of what) would work for your child. We have listed some of what we do on the links on the side... and some of our own thoughts and actions in the blog.

I also would advise the parents to figure out a technique for themselves to be able to sort out the information flood coming at them and organize it in a way that they can implement it with their child, stay plugged in, watch the result and modify/drop as appropriate. There are several complexity methods to it - you could google cynefin framework, DSRP framework etc for that.

Good luck and all the very best...

Absence...

2010-01-05T10:22:00.000-08:00

Hello all !! Its been a long time since I posted anything (infact, anywhere). Things have not been really hectic - i.e., it has not been that hectic that I could not find time to post... I think its a lack of inspiration :-), or mental fatigue, if you will...

Lots have been happening, mainly due to DW's efforts - DS has been growing (literally, he is as tall as me now and he is only 13) and has been enjoying life a lot. There has been great improvement in several areas (of note: flexibility, which is one of the core deficit). Story-telling has been a great success: DW uses it to message across; DS uses it to convey his thinking and why he did/does certain things through characters in his story. I will post something in detail soon.

Our focus for next year (beyond flexibility) - is "anxiety reduction".

Will post more about it.

In the meantime - Wish you all a great 2010 - Have a wonderful, peaceful and successful year ahead.

Summer of '09

2009-08-10T17:40:00.000-07:00

We talked about the Summer of '69, jokingly... This summer has been really good for all of us, including the DS.

Here are some updates on how the summer went... What I've written down is very specific, but there are several abstract that we cannot put our finger on and explain it descriptively...

1. DS has gotten (or is getting) comfortable with numbers and word problems. He is now playing monopoly, getting a roll of quarters from Whole foods checking (counting by stack of 4s), playing a card game (counting by stacking in 10s) - we have begun using the Whole Movement template for that (the fractals and whole concept) and touch wood, it seems to have worked well.

2. He is getting motivated to get rewards for his efforts; black tape for learning in karate class, star in tennis class, ice cream on Fridays post week-in-review, if his weekly schedule is complete, surprise reward is the plan is followed in Teach Social. The funny thing is this - His karate classmate was on leave one week. DS was happy that he could get the black tape while the other boy misses out (since they started the same and the other boy had overtaken DS due to similar reasons)... The key thing about Karate class is this: DS has realized that there are hundreds of things to learn in karate (and extended it to Tennis). We are now hoping that he realizes that about other things in life and is no longer that anxious about new things.

3. DS has started playing games that he doesn't like with his friends (pretend and otherwise). He has started coming up with different ideas to play with few objects like cars, bean bags.

4. He has definitely shown signs of reading non verbal clues, in non-RDI-lab environment. Reading facial expression, he had asked, "why are you scared" ? The other day, while he was searching for something, he self-talk with his DM, let me see where your eyes are looking and follwo the path of her vision.

5. He is more aware of others and their needs. DW had made ragi aaloo rotis. He likes them... As he was eating and finishing those, he asked DW, "Is this for appa too ?" and then left two of them for me. He has started helping his DM with cutting vegetables; and agreed to watch an English movie at the theater (Ice-Age 3), with us.

6. He has shown higher order of thinking and problem solving and coming with alternate ideas - he had a lot of different size of boxes to junk... He came up with by stacking them one inside the other to make sure it was at manageable size to carry... Another time, when the door of the bedroom came off, he had safely taken the screws and kept them aside, calling parents for help.

7. Improved story reading comprehension. DW is using drawn pictures of the character and places, one of us read the story, other moves around the papers like puppet show. He has shown full engagement, not shutting off which used to happen when reading...

Has been a good summer... The DS is also growing up physically - he is taller than his mom and is almost as tall as me - just about two inches shorter than me.

Just keeping our fingers crossed and hands together for the trajectory to continue !

Awakenings !

2009-07-18T21:35:00.000-07:00

Some nice anecdotes that happened in the past two weeks:

DW and I were tired on one weekend afternoon and crashed out - sometimes during weekends we take an afternoon nap as a family - get together talk for a while and then doze off. That particular day, it appears DS didn't feel like sleeping, so perhaps knowing that he could disturb us, he left the room... The funny thing was he came in after about 1.5hrs and woke both of us up, saying, "Appa, amma wake up - its 4.15PM - its already evening...".
DS sleeps in a separate room during nights - however, he still finds it hard to sleep through the night alone. So he comes into our room around 2-3AM and crashes in with us. Its likely he would also use the bath room at that time. However, he isn't very quiet with the door and most times it is very loud - as the door is shut, the automatic bolt makes lot of noise as it slots in. So, one day I showed him how to close it, so that the noise can be minimized - ie turn the handle down and carefully release the bolt gently. Next day, at night, when he came into sleep, he actually followed it ! It was an indicator to us that he is "in the moment" most of the time !! He is also getting aware and stays very conscious about it... I told him then that I'm very proud of him that he remembered and cared for others...he responded by snuggling up close ! :)
Tonight, he and I went out for a walk. We were playing a scenario - where he played the role of himself and I played multiple roles - myself, DW, his friends, my mother and a stranger. During the role-play, my conversation was to get him to disclose his gmail password; he didn't reveal it; but once he slipped up and then we thought and talked through that. Then I was stranger asking him to reveal the password and making (sexual) advances (the one thing we are told that we need to be safe in this country)... He didn't budge from his stand. All this was good; and then came the icing on the cake - after the role-play, he commented that people could say anything and try to trick him !! and he needed to careful !! Cool !!! I like his recognition of the possibility of trickery !!!

Btw, we do find role-play and socio-dramatic play is helping him internalize a few things. He also loves acting scenes... particularly assigning his own life experiences to movie characters' names.

Priceless...

2009-07-09T12:34:00.000-07:00

DS had his tennis lessons yesterday. In addition to the forehand, the coach also introduced backhand and overhead serve. We can see DS was trying hard to learn and focus. I had, on the side, told the coach to follow what they do in Karate - a stripe on the belt for a good class - do something similar. The coach drew a star on a ball and gave it to DS; the DS was very proud and he has kept it safely and will have to take the ball next week too, to see if he can get another star...

...but I'm digressing. After the class, we had gone to a local shop to look for a tennis racquet for my friend. DS was obviously very tired and wanted to get back home - i think the shoes were also bothering him. So he sat on one of the empty shelves...

...and then commented, "I'm on sale, will I get bought by someone ?" :-) Even without a discount we would ! And there was severe sale going on ! Its a bargain !!!

Summer of '69...

2009-07-03T23:05:00.000-07:00

DS has reprised Bryan Adams 40 years later... DS has said this summer are the best of his life so far... and we are only into 3rd week of his summer holidays - its another matter that 3 weeks have flown by !

It has been a long time since we had updated the blog. Touch wood, things are going ok and well. More importantly, DW is happy and DS is happy with DM and both are happy together... This itself implies that the situation is positive :-).

DS has finished his schooling year - the first in the US of A. The school report says he has done well. And he has said that he likes the school, very specifically the class room that he goes to. He is getting a lot social cues at class and is beginning to talk to his class-mates about his likes and dislikes and share those stories. I also believe he feels more comfortable with the school here, since he goes to a special day class and does not feel the pressure as much as it is in normal classes. Although this is probably slowing down his academic progress, we believe it is helping him develop is EQ and functional thinking..

Re summer activities - this summer has been labelled as "physical summer" - He has suddenly found interest in Tennis and we have put him in a Tennis class - the coach who has taught special kids before seems very patient with him. His swimming classes start next week. Additionally, he continues to go the Karate class which he seems to enjoy. I believe these are all providing the neccessary sensory inputs to him and that is the reason he relishes it himself. And my own belief is that physical activities help in high level of mental engagement.

On others, this summer, he has got into group session at Michelle Garcia Winner center of Social thinking - this is now known as Teach Social. This is in addition to the individual classes. All of this is helping significantly. We have also started using Connector Rx. It has helped us (ie DW/I with DS) to be "in the moment" - he has shown some initiation skills when we have strapped this on. We are continuing with RDI , Impulse creations, aura healing, whole movement... we believe each on its own is not the sole reason that contributes to the development. To me this is like, solving the a problem in the "complex" quadrant of the Cynefin framework. This framework is a good way to look at PDD - we apply "Emergent Practices" approach, where the Cause and Effect are not immediately seen and aren't close to each other. One probes, senses and then responds. So these multi-dimensional practices helps us to probe different possibilities - for example, Impulse creation helps learning with the body; Whole movement is a tool that I believe helps DS to look at the way one can organize information and to be able to address a larger problem, but starting from fractals. RDI helps in developing functional thinking, Teach Social helps him in the intersection of functional and skills. His regular school is where he is learning specific skills. To us, function is the thinking part (why, what) and skills is the doing part (how, when). Each of them separately isn't that helpful.

And with all this, DS has said this summer has been the best for him ! So, something is working for him - like they say, dont fix it, if it ain't broke...

In spite of all the uncertainty in my job front, things are looking up... Hopefully, the trajectory continues to remain true North. Touch Wood. Thank God.

Shot through the heart...

2009-05-11T21:13:00.001-07:00

Blogging after a long time...

We want to treat DS as a grown up and he oscillates being a big boy to a small kid. Sometime he resents being told something (just like any other boy in the cusp of teen-age) and sometime he is just a baby... So I was telling him that day that we talk about all these things, because he is growing up and he is no longer a baby and there are social expectations of him (not in so many words though)... Also, we told him that he would live far beyond us and at that time there may not be much help available to him; as my parents have outlived their parents etc etc. He heard that and asked some questions around that... Later on, that night, while in bed, he asked me couple of times as to what I told and why I told those (ie we, as his parents would die earlier than him)... We can see it was playing in his mind.

The very next day this event happened. He has a very favourite pillow - its his imaginary everything - friend, confidante etc. There was some damage to it and he was really broken. He cried for long and during that time, he told me that neither of us are important for him and his pillow was important; and we could leave the house or he would with the pillow...

It was quite rending to hear those words... But after a while, thinking about it, I wonder if his reaction was based on the talk we had the night before - on impermanence of us...

Penumbral Motivation...

2009-04-07T19:11:00.001-07:00

Somehow I've always emagined/presenced that DS will become a good doctor or something to do in the field of medicine/life-sciences - his ability to remember things, to be able to co-relate facts to several degrees deeper and masked, and his sensitivity to people would render himself to be effective - I'm hopeful that is his calling !

Last week, there was a reading comprehension lesson given to DS. This was about the heart-beat - there were several sentences given about heart and he had to find what the central theme as about (which he did); but the offshoot of that is what was that made us more happy. He was really really unhappy to know that heart beats stops and all of us would die - including us; i think he is internalizing that himself, although we have talked about death to him sometime ago. His DM has also talked about Hindu philosophy of the soul and body (there was another correlation that he made - that in a different post later)... Back to the story, hearing about the heart-beat he was very disturbed and said that he wanted to have the same body (hmmm, what was that about not being in control of their body and sensory integration issues - do they really have that or is that our perception ?) even after he dies ! But then he wanted to know how to live forever !

He then went ahead and googled "live forever" and found out some work done by this researcher, Aubrey de Grey. He has now started reading about Aubrey de Grey and still shown interest to know more about what this researcher is doing; the only challenge is the words are high flying and a lot complexer !

One idea we had was to use Whole-movement Tetrahedron to explain different biological system within the body and then build it from there... Again, the worry here for me is, is this the right approach - in system vs details ? do we build the system as a whole and get him to see the details ? Or build he details and let the system emerge ?

Where Amazing Happens !

2009-03-29T21:26:00.001-07:00

Btw, thats the tag-line for the "National Basketball Association" (Professional Basket ball league here)...

Where Amazing happens is also in our lives ! Day to day, where DS amazes us with his repertoire. As springs sets in, there is a lot more sun and today DS and I decided to take a walk to the park nearby and then walk around the apartment. And here is the story...

Today:

As we were walking past the tennis courts, there was a kid with his dad going home after their games. The kid was munching an organic bar. As we went past them, I told DS that the kid was eating the energy bar, just like the one we bought him (organic, gfcf, sugar-free)... DS appeared not to hear, but after few steps, slowly turned his head and looked at the kid, looked elsewhere and then turned his head back... I looked at him puzzled and asked, "Kid..."

4 months ago, during Thanksgiving Holiday (late Nov):

DS wanted to go on a local train and we went on the locals. As we were going across town, a family of three got on the train and took a seat in front of us - mom, older child about 7 and a baby. DS, not so socially aware, stared at the baby and his antics. I told him that its not ok to stare like that; and btw, if you know DS, he doesn't like two things - when the voice is raised and if we correct him unexpectedly. And he felt silent after that in that ride. Later on, I kind of explained to him about the whole thing and told him sorry that I had to correct him unexpectedly.

Back to Today:

...I looked at him puzzled and asked, "Kid... what did you do ? Did you see that ?". He said, "yes I did, but you told me long time ago not to look at strangers "straight on their face", which is why I did that slowly after looking somewhere else"...

My heart swelled with pride !!!

------

ps: Rest of the walk, we talked about social rules vs police laws; what a society is, what are unwritten rules etc, and how he behaves differently when there are guests at home and that is nothing but he following some "social" rules himself... etc etc etc etc...

Movie Magic

2009-03-29T21:20:00.001-07:00

I had posted on this line, in one of the parent support forum, where there was some discussion re ails of visual media (TV).

We have used the visual medium effectively to develop (and in the process of doing it) some key skills in DS.

We have movie days every friday - where we bring in known Tamil movies. Ahead of time, we tell DS the story of the movie. While he is watching, we try to work on his comprehension and see if that could be improved; we also freeze the movie at certain place and ask S to identify what the character feels and why does s/he think so ("he is happy because he got a job and i can see from his face, since he is smiling; He is angry, because the other person cheated him and I can find out because he shouted" etc)... Also, it is helping him look at the story-level rather than details ( which would earlier be - "he opened the left door of the car, drove through trees to go to the shop and on the way he crossed a dog and an auto" vs "he went shopping for his wife")... The movies has become a tool for us to teach Emotional Intelligence !!!

DS has now begun to want to dance as the heroes do - it gives him a good SI input. We have also seen some of the SI exercises prescribed for him form some portions of the dance-moves in the songs. So, its easy to get him to do those SI moves. He now wants to tape his dances and watch them - I believe they improve his self-awareness and his own view of his body and balance. I'm hoping the recording would help him see the differences between what the movie actor does versus what he does (in terms of performance/moves)... I hope that would lead to DS's better understanding himself.

Additionally, for him to watch movies on Friday, he needs to pay out "3 Poker chips" - so he earns those throughout the week doing work. And he is learning some basic accounting. Also, some negotiations, since he wanted us to make movies a bit more in-expensive, particularly when he doesn't have enough poker chips (or happy sticks)...

We have also used his favourite movies (he has seen) to teach the concept of history, based on their release date and the timeline on a white-board and what else did happen in that specific year. We plan to teach the "history of movies" now... We use the upper-half of the timeline for movie-history and the bottom-half for some other history (like cricket, India etc).

Growing some Non-chalance

2009-03-19T21:45:00.001-07:00

DS and I used to have some standard exchanges.

He would want to know as to where we (DW & I) went or what we did, in his absence (particularly his mom, since he doesn't like her to do something that he too likes when he is not around). To his question, I would ask him why - as to why he wants to know. He'd say something that is quite standard - "I'd like to know", to which my standard response would be, "thats not the real why, so tell me why do you like...". After couple of repetitions of such back and forth, it would get to him and he'd show his stress in his face and by his "stimming behaviour" - ie clasping his palms tightly...

Yesterday, after a couple of "you tell - no you tell - no you tell first" between us, he said, "ok, don't tell" and walked away... There is a Buddha lurking in that DS :)

Yay !

Mental Fortitude...

2009-03-04T21:04:00.001-08:00

Yep, those are big words ... Lets just call it mental strength...

I'm discovering that DS has great mental strength. Once he decides, its pretty much easy for him to stick to it. I know folks would say thats typical of such kids. Somehow, I think everyone has their temptation and would want to do things that is forbidden :) Here are couple of examples.

I had written about DS sleeping alone. However, he sleeps in the living room; and in there, the sound of the rain on the roof and the wall mounted AC is pretty high. So. he does get scared of that sound (and it has been raining quite incessantly for the past few days). So, I had asked him last night that since its raining, would he want to sleep with us, partly due to my own issues. But he was quite clear. Nope, like last night, I'll sleep in "Thatha's room" (the room, that my parent's used when they visited us). For the past two nights he has been sleeping there soundly...
Last weekend he had an invite from one of his class-mates for a birthday celebration at a bowling alley, that he really loves to go to and bowl. But he hadn't told us about it at all; the invite was amongst his books in his bags. When DW saw that on Monday morning and asked him, he said he didn't want to go, but didn't really explain really well. However, later on during the evening, when DW talked to him using the "Rahul story" (which DS has taken to, with his own version of character called "Red Thala"), DS had explained that he didn't go to the party because he had several dietary exceptions already in the recent past - 'boys day out' with me (at Chinese joint), eating out the local Komal Vilas, eating at a friend's place; and he simply didn't want to eat cake at the party which they would ask him to. And to avoid the temptation he simply decided he would not go !!!! Amazing !!!!!!!!!!!

Given this, I believe he has great mental strength. So, I believe this was a good time to talk to him about "melt-downs" (or temper tantrums)... So both of us talked to him about "meltdowns" and why its normal for people to have it and how people react to it differently when they have one. For the past few days, we are playing the "True/False" games around a few melt-down 'facts". Eventually, I want to lead it to a point where he does know melt-downs are pretty normal and he will need to find a way to handle it in a way it does not perturb people around him...

Like Floyd says, "the Child is grown, the dream is gone...", only in this instance, the dream is still out there and it might very much come true !

Clarification Please ?

2009-03-04T13:03:00.000-08:00

Ok, I'd like to know... The funda about sleep-place. What was it, again ?

Is it that, DS should not be sleeping with us ? Would that mean that I can go sleep with him, in the room where he sleeps !?!

Ah ! Thank you !

(and yes, I know about the letting go, funda !)

Red day !

2009-02-22T09:52:00.000-08:00

We met DS's psychologist during our visit to India in Dec-Jan. She was very pleased with DS's progress and said that the next step for us to get him do things independently. Since then we have been modeling some stories via his alter-ego. We bought a mobile for him and also seeing if he can describe the sorroundings around him. He now can say right-ahead, right-adjacent, right-behind, left-ahead etc, in describing what he sees...

In any case, one of the things we have been thinking about, given his age, that he needs to sleep alone. He has slept with one of us all the time, and lately sleeping in the same room but not in the same bed. He had agreed to sleep in a different room recently... However, I think I was the one who was resisting the idea, perhaps given his fear of darkness and general anxiety. DW was saying it was not DS, but me who was making all the excuses as to why he cant sleep alone. DW was cool, she just moved on quickly... I was the one who wasn't letting go easily. I felt as though I wasn't looking after his safety, although intellectually, I know by doing this, i probably look after his safety more... Stepping back, I think DS is really growing up in his own mind and perhaps really wants to be treated so.

Anyways, as I had said earlier, there is a time to hold on to and there is a time let go - not just mentally, but also physically !

Directional Sense !

2009-02-20T16:48:00.000-08:00

DS just amazed us yesterday.

DW was going for a lecture last night and us boys were to have a night-out on our own (which we did and a bit of that in the 'ps').

As we get out of our residential area, in a complex maze of roads, we need to hit a freeway to head to the destination. From Steven's Creek, we get on to the ramp as an entry into free-way for 3 of them - 85 North, I-280 North and I-280 South. That entrance is quite complex and you kind of go around, that its easy to lose your bearings directionally (atleast for someone like me who is directionally challenged).

So the two key roads to this post are, Steven's Creek Boulevard and I-280. We had to get of SCB and then enter I-280 and travel South.

As soon as we said thats the way we are going, DS remarked that Steven's Creek boulevard goes in the same direction as I-280; but SCB is called SCB east and SCB West; where I-280 is called North and South. If you see the picture below you'd see what he means (although I-280 takes a turn towards South-East, much further out)... I was quite amazed that he got it - he is not into maps much. I thought it was a remarkable observation or mapping in his own mind !! The two roads are circled in red in the map...

We later on tested if he understood the directions - and asked him what happens if we travel North and take a right-turn or travel west and take a left turn. He got those... jujeebee !

____________

ps: After dropping DW off at the venue, we went to a mall covering the 1.5miles in about 4miles (I did tell you I'm directionally challenged and I'm the only person on the face of the earth, who could lose the way with GPS showing you the way !!). At the foodcourt, DS was all eager to eat McDonald stuff and fries. As we went to the food court, he saw Panda Express (Chinese fast food) and switched over. A few years ago, such a change could not have been imagined !

History, Geography and Comprehension !

2009-02-18T20:37:00.000-08:00

We somehow think that DS would do well in descriptive subjects because of his memory retention. The belief is that he would do well in history, geography, life sciences and not that well in math.

So we are setting out to teach him history. But we are starting small. We have a white-board where, we have drawn a timeline. Starting from 1950 (when Rajnikanth was born and for some reason he is a big fan of Rajnikanth - if you ask him, he'd say because Rajnikanth ate Chillies in the movie Sivaji and he finds that funny), we drew a timeline uptil 2009. And started

mapping out various events, as to who were born at what date etc and other events. And

then we told him, if we are at 2009, looking back uptil 1950 is history. Then we drew the map of South India and mapped where each of those events took place - i.e the name of places - and termed it Geography. The picture that you see on the whiteboard on the left top corner is that of Rajnikanth (in the movie Sivaji - thats yet another way of getting him to accept the white-board)...

So far good; so we knew he would retain the information. But because of the articulation challenges, I was doubtful if he comprehended the "history" part.

Two days later, he was talking to DW. He has been struggling with the fact as to what would happen to the HAL airport since the new airport in Bangalore had come up ! In his talk to DW, he said, "Amma, I know what they can do with the old HAL airport. We could leave it as is. It would be the history for Bangalore"...

Comprehended. Articulated. QED.

Questions, questions...

2009-02-15T13:19:00.000-08:00

DS has been asking tons of questions these days ! Here are some of them:

1) Why do we sleep at night and be awake during the day ? What happens to people in the night shift ?

2) Why can't we eat breakfast, lunch and dinner together ?

3) Did the fruit "orange" get the name from the color (orange) or did the color orange come from the fruit ?

Emotional Intelligence... (or whatever) !

2009-02-11T13:01:00.000-08:00

DS has been throwing up surprises as usual.

That day, DW was cutting vegetables and DS was elsewhere. He heard DW gasp and came and asked her what happened. DW told him that she had cut

herself in a very very small way. Immediately, he wanted to fix it. DW told him that it was ok, but he looked up the "injury" and wanted to "take care of it". He asked for the "first aid" box (his words - schooling process, I guess), picked it up; looked for a band-aid and then asked DW if she wanted a big one or a smaller one.

On the choice, picked one himself, peeled it off and put it on DW's fingers. DW was over the moon. She said it was her "appalam" experience !

(DS has been a fount of such suprises of late and he has been asking so many other things too... Would blog that a bit later)

Raining Jokes !

2009-01-23T06:01:00.000-08:00

This morning, when DS left for the class, there was a slight drizzle. Since he doesn't like wearing caps, I had told him that if it rains heavily when he reaches school, he may want to run quickly from the bus stop into the class room, so that he does not get wet.

Later in the day, during the evening, I had asked him if he got wet in the rain this morning. He said no, he did not get wet. He got only half percent wet. Then added in a serious tone, but "that day, I got completely wet..., fully 100% wet..." (He is also getting the percentage concept these days!)

I was naturally worried (cold, cough, fever and all that flashed through my mind), and asked, "really, when was that ?"...

He responded with suppressed laugh and twinkle in his eyes, "I was standing under the shower !!!".

Joker !!!

Telling him...

2009-01-21T17:45:00.000-08:00

We have been thinking for a while now. When do we talk about two things (1) death... I.e., we will not live forever and he would be living on his own without appa and amma, but perhaps with his wife and children and his cousins (2) the 2nd point being that he is special.

On the first one, we have been kind of talking about it... We talked about my grand-parent's passing away when he grew old. His athai-patti (my favourite aunt, if I may add), who he has seen, had passed away. So, we had talked about death... But didn't think he had internalized it...

The second point was that he is 'different'... We have been kind of talking about it in generalities... That people are different, I am different, I like so and so, DW is different... Etc and you are different. You like Thayir-sadam uncle (tamil actor Vijay) and amma like (yet another tamil actor) Surya etc...

We got an opportunity, to (again, kinda) bring them together. A slight by-story. We travelled from India + we have been told that DW should not be lifting heavy objects. So, I told him that he is a big boy and he need to help me more. Since then he has been stepping up... Even being flexible, to carry the two galon milk carton (that he does not like)... So we have been using the fact that he is 12 and he needs to help out at home much more... he needs to "listen to himself" (his own term - there is another story there)..

With that introduction... a couple of days ago, he had that laughing thing going for a while. He had done that in the Winner's class (now called Teach Social), but I did not know about it. On return, he also laughed a bit at home. We plunged head-on... We told him that laughter is ok and if he feels like laughing he should. Particularly when he is with us it is not a big deal, since we are all different and he is different too. And then we told him that once he is big enough to be on his own and when we aren't there any more, others around may not understand why he laughs and may find it strange. He said right off - that he doesn't like talking about it (ie death); we did tell him that there is still a long way to go; that we will live upto 75 years old, by which time he'd be my age etc etc...

The crux of the story is yet to come :-). During later part of that evening, while we were walking, he was thoughtful. And he said in a very serious and quiet tone that he laughed during the Winner's class...

We started with something in mind and it has lead some where else. He is reflecting more on his own actions...

Our Intentions for DS

2008-12-09T14:49:00.001-08:00

I had been to a seminar two weeks ago, run by an long-time educator, by name Dr.Jean Schweitzer. Her blog is at this place. Her email is also available there. She has also written couple of books around how movement is neccessary for children to learn. There is something that Dr.Jean asked me during the seminar, that continued to stay in my mind. "What do we intend for our son ?" - So DM and I thought about it. We thought it might be good for us to do the 9 codes (movement) talking through the following (not verbatim but something like that):

1. Heart Code: The possibilities are endless for what DS could become. He has great sense of humor, highly sensitive, cares for people and enjoys company of people who can reflect him. He likes to be happy and keep people around him happy.

2. Focus: He could have been like every other kid or he could have been very different - but he is what he is today

3. Express: We enjoy him for what he is and love him very deeply. He is our healer. He give us joy with his actions and his care. He is loved by his extended family. As he is fortunate to have all of this, we are fortunate to have him.

4. Expand: We can worry about several what ifs. But we will work on one 'what if': on visioning that DS would have a happy life ahead of him. Regardless of what he is, he will live independently, will have a family on his own that would be supportive of him and sensitive to him as he would be to them.

5. Align: He would be happy and at peace at himself, like that indelible image in my (DD) mind of his flips inside the water; or the image of his peaceful face in the swing with the soft instrumental in teh background.

6. Eliminate: We are not going to let fear cloud our intentions

7. Create: We will create environment for him to learn on skills and knowledge that will help him in his journey and live a life beyond us.

8. Transform: In this environment and with the intentions of being an enabler for DS, we will look to change our lives, working with DS in a positive way.

9. Integrate: We are certain that we will have Providence in our corner, showing us the way and give us the fortitude to bring the intentions and actions together, at end of which our intentions for DS bears fruit.

DM and I plan to do the 9 codes ourselves saying those words.

The Tastiest bite ever !

2008-10-31T21:13:00.000-07:00

DS did an amazing thing today !!!

He usually likes to eat Appalam (pappad)

after food - sometimes before food and sometimes during food - basically he loves appalam. Since he knows how to operate the microwave, he just opens the shelf, picks 2-4 (he likes even numbers too :) ), microwaves it on his own and eats it.

Today he did the same, but he did something beyond.

He took 5 pieces, microwaved them, then brought one to me... He has seen me eating appalam a few times too. He told me that since he has seen me eating appalam often, he thought he'd make me one !!! No prompting, none. He just did that on his own !!!

I was over the moon ! If I could kept the appalam

forever, I would have !! However, here it is - one the other form that I could preserve and enjoy it !!

Parallel World...

2008-10-28T19:08:00.000-07:00

DW and I hit upon an idea... We want to create a parallel world, where there is a boy named Rahul, who is 4 years older to DS... We were wondering if we keep talking to DS about Rahul 4 years from now as he goes through his life... everyday (or once in two days, but few times a week), about 4-5 sentences about Rahul's day or week...

Here is a bit of intro about Rahul:

Rahul is a wonderful boy (of +4 years of DS' age)... He is highly sensitive, humorous and very affectionate. He cares about people's feelings but cannot express it well. He likes to have people around him and they have to be happy. Although Rahul likes people, he is very shy and finds it tough to make social conversations.

Rahul likes to listen to music; Although he could discern music well and repeat the notes, he is just learning to play the keyboard. Rahul also likes to watch movies and likes Kirigami/Origami - he likes to see various forms and structures with paper. Rahul loves to understand the details of certain things, particularly that of things that locomote - cars, buses, aeroplanes, trains; but not so much about ships or helicopters! Rahul likes to understand directions and roads; although he can visualize the map so clearly in his head, he will have trouble articulating it. He once brought his grandparents home when he was 11 from a walk, when they were a bit confused about the way. Rahul is extremely organized and he could plan a trip to the minutest details.

Regarding school, Rahuk likes descriptive subjects. He does not like Math so much, since he could be either right or wrong; and he hates to be wrong, not just in Math but anywhere. Although, he is not very academically oriented, he can comprehend some of the subjects well. He can remember things that he hears and see very well, although he does not like to read visually. He is good in Life-sciences, history and Geography. He is also very good in English vocabulary.

Rahul likes to cook and eat some good food. He loves chicken and ice-cream; although he cannot eat the latter very much, except on "exception days".

Rahul has some trouble with certain noises and a sense of overwhelm sometimes. But he has found defense mechanisms for those. Rahul also has challenges with unexpected changes in once in a while, but he can talk it through himself. He finds parallel within his mind from the past and draws upon those experiences...

In this story, Rahul goes to school as every other boy of his age, finds a friend, finds his mojo and his own space in the world...

We also want to see how DS reacts to the story and if it gets him into introspection…

Periodic Inspiration...

2008-10-03T21:10:00.001-07:00

I talked about a response to the article I wrote in the Hindu (newspaper)... This is a response that a dear friend of mine sent me when he read the article. In times of confusion and sometimes despair, I read this response... It does inspire to believe in a greater message/cause that is in store for us; and refresh the journey !!

Here is that response:

-------

Read your article in The Hindu, today. Great to know you are supporting your son with all you can. God has made each one of us different, and special in His own way. It is all about how we make use of what He has given us. Kurai ontrum ille, Kanna. Thank you for sharing your experience with a world that is conducting crawling race for babies of few months.

I strongly believe He has given me a lot of talent, and a healthy body. He has blessed me so much that I am very likely to live to see my retirement age, and far beyond unless He chooses to cancel my visa in His own way. I believe He has blessed me with a "normal mind" that passed though all the required academic exams and job selections with flying colors. So what?!!

I envy Dr.Hawking. Born 1942, Dr.Hawking's doctors predicted his early death in 1963 from the incurable neuromuscular disorder--he couldn't use his arms and legs; he cannot feed himself; an an operation by experts in 1985 to assist his breathing cost him what little remaining use of his vocal cords. Out of that crumpled, voiceless body in a wheelchair, the mind of Dr.Hawking is able to perceive the whole universe and how it works. So, what is normal, and who is special?

I am sure your son is blessed by Him. With your help for a short while, he will discover himself. Help him discover his space--his karma-bhoomi. Support him to stay there. Give him emotional support that he can pursue the space for which He gave him all those talents and specialities. May be mathematics, pure science, literature, art-- what is he meant for? Help him discover; most important, support him to live there. In a way, He is blessed. He will get a special life partner (wife?) for him--someone whose parameters of life will be very different from that of normal people. He will be blessed with the support from someone who will be willing to make great sacrifices to help him blossom with his special skills. He will be blessed with low expectations on him from the society and relatives. He will be blessed with parents who would make enough money so that he will not have to distract himself from His course for making a living. He is blessed, your son, to have parents like you are. He is blessed with talents that will make him known far longer in this world than we all will be. May be your fame would be for being his father. May be I can narrate your story to my grand-children as I am awaiting in the station to leave this world. While your son will be busy with God's charter, other normal people will be busy with the charters from their bosses and wives.

God bless!

Affectionately,

xyz

---------------------------------

A time to Heal, a time to let go...

2008-10-03T20:46:00.000-07:00

This is not a note about they Byrds' Turn, Turn, Turn...

Due to some thought provoking discussion in a forum, facilitated by one of the brightest brains I've seen, I've been stepping back and giving a very serious thought. Have also discussed it with DW a lot. I went back to re-read a specific response to my article that got published in a newspaper for inspiration... (I will post that response as a separate post)...

I was talking this morning with DW. I think, when DS was young I was thinking more with my heart and trust his potential; and ignorance was bliss too...but as he became older, we've become more informed and that had lead to being more analytical and logical. About two-three years ago, I recall DS's psychologist saying that our work with him and not bounding his potential has helped him develop faster than the doc's own expectation. Perhaps as DS grows older, my fear for his future is coloring our possibilities for the present. There could be a possibility that I've started looking at him from "independent living" lens and that alone - have become too analytical about it.

The challenge of being analytical/logical is it constrains the results and not lend itself to discovery of another plane. Yesterday, as I was watching the US VP debate, I had my ear on how DW and DS were interacting and playing in another room. I think DW engages at the level of potential and not possibilities - with being purely invitational (heart) rather than evaluative (brain). I can sense DS more comfortable with her and opening up to her more.

There was this theory that was pointed out to us by this lady who facilitates the forum - called the Presencing. I'm getting the "top of the U" part - to be more invitational - I tried it out yesterday - i just went with DS and cut the papers with him. No words absolutely. He seemed tense first, but I just didn't say anything, just cut with him and he relaxed. I will do this through this week. I'm also going to let DW take the lead in creating the moment and tools. I'll engage with DW offline to design it, but not in front of DS... The thing is I believe he has immense potential; just want to make sure, the roadblock in realizing that aren't us. To be just be "invitational" and not "evaluative". Re his potential, I've a gut feel that he could become one of the best (non-surgical) doctor, because of his memory, observation, attention to details, ability to correlate facts, "sensing" people and ability to connect with them with humor and sensitivity. Yes, he would have his idiosyncrasies more pronounced than someone else, perhaps.

The other breakthrough I got was that - being invitational and being with him, creates an "episodic memory" prior to the fact - the one that he can recall more easily than trying to encode after the event. I think the tools like RDI, Enki etc would be more effective, being in with him.

So would I completely withdraw from all the theorizing and mixing/matching ? Hell no !! :-) but definitely, I strive to reduce the complexity for him and make it simple for him, simple enough for him to enjoy without anxiety - take the complexity away from his presence - he has enough already at the school and otherwise...

Influence of Thought...

2008-09-11T20:24:00.000-07:00

I was on travel, when DW sent me a note of note ! :-) I'll get to that a bit later. This was about how to get DS thinking differently (as we had written about making the connections) - as to how we get him from abstract scientific thinking to abstract emotional thinking. Any opening that he provides for us is good here...

My belief is, if you take NT developmental line, its kind of "linear" - when I say linear its not as linear in mathematical term, but it has a pre-determined milestones - both mentally and physically... for our kids, its not that linear, its haphazard, to some extent...

Now to get to the incident - DS was unwell when I was traveling - But he gets very disturbed when he is unwell and talks about it a lot and then it becomes a self-fulfilling prophecy (particularly coughing). DW distracts him by playing some of his favourite movies. But yesterday he made a big leap. He had asked DW - "Why do I get more cough when I talk about cough ? Does cough think I like him, since I talk about him and stays with me; if I dont talk about him, he will think I dont like him and go away". I know the articulation is not how a NT kid would do - but for me this is his first realization of how mental thinking can influence the physical. Since he has moved to that point in this developmental vector (when resolved its more true north), I believe we should try and make a link between those various stages, I had written about in "connections".

We believe this perhaps is where he is moving to abstract/emotional part of thought.

We want to use it to see how we can encode his learning... Would thinkblocks be of help ?

Connections, again.

2008-08-27T22:37:00.000-07:00

I had written about "Making the connections" more than a year ago...

Much water has flown under the bridge and we have hopefully better understanding of the situation now. As DS grows (which is in itself scary) and evolves in his thinking and showing "normal" thinking in certain areas, I believe that our model of "making the connections" have changed a bit. Earlier I had thought the progression was
1) Physical/Factual to (2) Emotions to (3) Abstract to (4) Connections to self.

However, now I believe the order is changed... Its
1) Physical/Factual [senses] to (2) Abstract [thinking] (3) Emotions [feeling] to (4) Experiencing Self...[sync and sink]

The 4th one is tough one to explain. This is something that the whole body feels - its like feeling happy, when one sees a bright sun-shine reflecting off the pool with crisp cool air enveloping you. That is where the body+mind are in sync, I believe. I think this level is required for to be able to develop empathy and sympathy...

Re-Schooling !

2008-08-25T20:59:00.000-07:00

DS started school last Thursday (21-Aug-08) in a public school. We were quite apprehensive. We decided to put him in the public school, for two reasons - the whole IEP process looked quite good for us (after having heard horror stories about it) and secondly, it would be a good good break for DW. Also, looking around at private schools here, I was very particularly impressed - they seemed to serve at either end of the spectrum and not someone in the middle. Let us see how the experience goes. One thing we are doing consciously this time, is NOT to ask DS as to how his school was - strictly "no" questions regarding school. Secondly, we have also sensitized him that people outside the house would ask questions about School (and also of things that he does not like) and because they do not know about his thinking and its quite normal for them to ask such questions. So, now DS has learned not to freak out when such questions are asked of him. So the Winner classes seemed to have helped him. He has the idea of "others" thoughts and his own thoughts and can make a distinction between them... Touch wood...

Anyways, in the meantime, his class teacher wrote to us: "... was totally fine last week. He participated in every class, had comments on all the work and actually did a lot of work. He seemed to be having a very good time, but every time I asked him if he was having fun, he quickly changed his expression and said “NO”! I have given him easy work so as not to stress him out..."

We have also requested the teacher not to 'test' DS for the first few weeks, so that his experience and episodic memory of the school is pleasant to start with.

Oh, btw, he liked the bus trip to the school - he likes to read the road names and find out where they are located vis-a-vis directions... He was telling his friend in India over the phone about his bus trip to the school and back...

Oh, btw^2, DW does not know what to do with all the time she has in her hands !! :-)

Mirror stories... (1)

2008-08-10T20:52:00.000-07:00

I had written about the Mirror stories earlier. Here are some that we wrote that made DS bring out his own version of Mirror stories (Bala the bus, the helpful one and Bicky the ball, the sad one).

Mani the Mountain (the patient one)

Mani, the huge mountain (near Simla) has been alive for a long time, many thousand years. He was large, strong and importantly, very patient. He had a strong inner strength that helped him to live through all the troubles patiently, knowing it would be better at the end. Many times, he has buffeted with strong rains, heavy snow and hot sun. But Mani was strong and patient. He was burdened with lot of trees, buildings, people but he was patiently carrying them. People bore holes through him to build tunnels. During heavy rains, part of his skin fell in a land-slide. But Mani stayed patient relying on his physical and mental strength. Whatever happened to him, he continued to remain patient and calm, since he knew his inside very solid and very well grounded.

Vasavi, the waves (the angry one)

Vasavi was the daughter of the sea. She had a brother, named Vasan. When young, Vasavi lived with her father, the ocean, farther into the ocean. As she grew up, Vasavi became curious and wanted to go near the shore and she did so. As she peeked at the shore far-away, she found a nice fruit that was very tasty. She saw a mango tree at the shore and she flowed towards the shore. As she reached the shore, she found that she could not reach the mango tree. Then she stepped back and rushed to the shore with a great cry (sssshhhhhhhhhhhhhssshhhhhhhhhhhhhhhhhh) and she found that she still could not reach the tree. Since then she has been trying, greatly angry at times and rushing in more strongly as tides and sometimes Tsunamis, but her anger wasn’t taking her close to the tree and to reach the mango. She still tries to do that to this very day angrily.

Vinoo the wind (the mischievous one)

Vinoo was the wind. He was the cool one. Depending on his mood, he blows hard or gently. But mostly he is the mischievous one. He like to play small jokes on people and have fun and laughter. Sometimes he would blow so hard that people would stay indoors and hold on tight to their things. Sometimes he would stop blowing, that people would start sweating and start complaining. Vinoo would hear all this and have fun. Sometimes, when he blows, he would move their things from one place to another. He had particularly more fun when he would blow papers from someone’s hand suprising them with a sudden gust. As people would reach the paper, he would let go another gust and move the paper to a bit more. After indulging in some mischief like this, he would finally let people have the paper.

Mirror stories...

2008-08-06T14:20:00.001-07:00

Thanks to Harvest Mom's (and Enki backgrounder), we have some understanding of mirror stories. The intent of it being tell a story (on nature) and let the story be the trigger for reflection; and not have the story be prescriptive (like a social story)...

I've modeled my concept of mirror stories around the above and wrote about:
Mani, the mountain (the patient one)
Vasavi, the waves (the angry one)
Saami, the sands (the lazy one)
Manju, the (mango) tree (the kind one)
Vinoo, the wind (the mischievous one)

Since these are made-up, i'm trying to correlate these with certain things that he likes and has good episodic memory on... (like Mountains would be Simla; Waves would beach in Chennai, Mauritius etc)

I did Mani, the mountain and Vasavi the waves yesterday again - end of the day setting, most relaxed etc...

DS came back with his own last night - Bala the Bus (eventually, Bala the bus, the helpful): the essence was Bala, the bus (he has gotten the alliterative concept :) ) is a bus that goes from here to there; in his story, a car breaks down and the bus comes along and take the people in the car... at this point in time, we named it as "Bala, the bus, the helpful one".

My question, since last night has been, if mirror stories are reflective in nature, does his story on Bala, mean one of the two ?

1) He is seeing himself as Bala the bus who wants to help others or
2) he is the car and when he breaks down he is expecting Bala, the bus to come and help him ?

If he thinks he is the car... then may be he is scared/lost... not knowing what to do...

I plan to enact Bala, the bus with TBs and lets see what comes out of it; I'm also wondering if its a good idea (in the RDI approach) to encode this in some-way - that if he is the car, he should look for Bala...

Perspective Taking and Flexible Thinking...

2008-07-20T11:45:00.000-07:00

I've been thinking hard as DS is growing up. He amazes us with certain way of thinking and acceptance and extreme flexibility and sometimes in an exact opposite way, that is quite frustrating. For instance, we had a guest, a distant relative of ours staying with us today. DS has a set routine in the morning - he wakes to two tamil songs and keeps his piece of paper and brings out his "Chuck" (favourite pillow outside the room). Today, since the guest was at home, he forewent all these things very voluntarily, since he did not want the guest to wonder!! So, looks like DS has an understanding of what is appropriate and what is inappropriate in changing cirumstances.

Anyways, since the 3rd RDA was done, we have been thinking about what is really required that would aid his independent living later on. I figure, there are two arms to it - one on the skills side and the other on the thinking side of it (loosely, Skills and functions). I've a belief that once the thinking side develops, the skills side would come.

I decided to do a mindmap of deriving it down further on how it could be broken down. The green-leaf indicates the action (RDI-Labs and encoding?) that would be required. There is another discussion we are having with a friend of ours, who is pretty much a pioneer in "thinking" in this area... How would Think-blocks help here ? (please click on the picture to see it better)

Of Winner and Unforced Errors !

2008-07-13T15:07:00.000-07:00

Title has to be keeping in spirit of the Wimbledon finals :) - its been a roller-coaster ride for us. Some ups and some downs

Had enrolled DS at the Michelle Garcia Winner Center for Social Thinkin g for summer classes. Fortunately, DS got enrolled in what we've heard to be a tough list to get in to. This was one planned input that we were looking while we moved here - structured social thinking. So, we were glad that he got into it. A week later or so, we were asked if we were be ready to enroll him for the individual classes too. Even though it was expensive, we said ok, as a safe-guard. The first day at the group class, DS was disruptive enough to be asked that he moved out of the group program. Fortunately we had him in the individual class. And later on got an additional class in lieu of group. So, although not our best choice, it could have been worse. DS has been going to the individual Social Thinking class. Lets see how it helps.

After all the searches here for private schooling, we were not totally convinced of several private schooling that we saw. In the US, it looked like there are facilities to address children on the severe side of the spectrum and on the lighter side of the spectrum, but not for someone who is in the middle ! So, we went to the public school and the charter school. After several months of IEP process, we got our IEP done. The IEP proposes the special day class, with speech therapy (for speech semantics, we were told), OT assessment, full-day aid etc. We are told that its a good thing. DS doesn't want to go to school here - we need to figure out how to make this work; we are not sure if a full-day class is good for DS. We do want to focus on other things for him. So thats on wait and seel and then re-assess the progress he is making at school here in 3m time. If not, the alternative would be is to switch back to home-schooling.

On the charter school, the directory of Special ed, called me up and said that public school IEP is quite good and they cannot offer something similar to that. So thats done.

The other down we were facing, till about 2weeks ago, was DS behaviour was getting worse - he seemed more irritable and quick on the trigger. We racked our brains to find out what had been different from before when he was more calmer to now. We could not really put a finger on anything. We decided to do something (thats explained in the next para). As with many other signs :), we were in the pool with another dad-son. The dad was talking to me about another pool in the vicinity - and he said it was an organic pool ! That kind of triggered something in my head... So we started him on probiotics immediately after the pool session...

We are also trying to simplify things for DS - sometimes we believe there are so many things to be done, that we start doing all of them that we do none of them very well - I also think that ends up stressing the DS's system. So, it was time to step back and re-evaluate. We have decided through this summer, we would only focus on 3 main things - do the Math (which DS does not like at all - basically the math, that would support his independent living), RDI and physical activities (swimming, navel radiation etc).

Not sure if its the pro-biotic or simplifying things have helped him - he seemed to have calmed a bit more now; also have started asking as to why he cannot do a few things - like cooking or cutting or ...

We have another 5 weeks to go, before the school starts and we need to break the news about school to DS. Will update how that goes !!!

Sign from Above - II

2008-06-12T21:31:00.000-07:00

I wrote about the sign from above about 3-4 months.

Sometime ago, on travel, I was driving about 80 miles from the airport to the destination. Pretty much flat-lands with nice scenery on the rear view and up ahead. Somehow, it made me think of our life with DS. There are some great days of hope and there are some days of despair - always goes back to the fact how would DS do when he grows up and how independent he could or would be. So when we (or I) think about the latter, its always one that of trepidation and fear of unknown on what future would hold. So, i thought aloud, at such times, there is nothing much one could do, but just say a prayer...

...So that incident was over; as I was dressing up in an hotel room the next day, I was thinking about the previous day incident/mind-set. As I was thinking about this, this song was played on the radio... This is a song I always identified with and that was even before DS was born. I kind of thought that was my credo... Here is that song:

I wont back down - Tom Petty

Well I wont back down, no I wont back down
You can stand me up at the gates of hell
But I wont back down

Gonna stand my ground, wont be turned around
And Ill keep this world from draggin me down
Gonna stand my ground and I wont back down

Hey baby, there aint no easy way out
Hey I will stand my ground
And I wont back down.

Well I know whats right, I got just one life
In a world that keeps on pushin me around
But Ill stand my ground and I wont back down

Hey baby there aint no easy way out
Hey I will stand my ground
And I wont back down
No, I wont back down

Another sign from above... (or mere coincidence - the concept I was explaining to DS today!)

Come Together, Right now !!!

2008-05-30T21:49:00.000-07:00

This is not the John Lennon song !

As I've written earlier, we are practicing various things with DS. We know its helping, however,my biggest thing is to have clarity on how these things work together. As a person, if I fit things into a framework (or the big picture), it typically helps me to execute better (even at work); and at the same time the framework allows for continuous improvement, which is what we want for our DS...

So been thinking, been thinking... Here is where we are at this moment in fitting everything we do into a framework.

As with any development, there are two variants at play - inhibitors and enablers. To me "inhibitors" are those that does not allow that something to get to the state of "normal and acceptable baseline". Enablers are those that helps push development above the baseline. So we need to eliminate the inhibitors and introduce the enablers in the mix.

So applying that to DS, I see thus:

Inhibitors – that does not allow the body to function in a certain way, due to some chemical hormonal imbalances
Enablers – That takes a steady-state being and then adds capability to it to make the being better and/or move towards the goal (in our case normal, independent living)

With that, this is how I think all that we do come together:

GFCF – takes away the inhibitors, sets the body free of yeast, sugar etc that induces certain behaviour. The body is more ready to receive input
SI – Sensory integration – eliminates the noise in the head and the body; does away with the sensory overload. The body and the mind is more ready to receive input
RDI – Enabler – Once the body is ready to receive input, it enables the pathways – develops functional thinking; ability to abstract a specific occurrence/observation to a generality/principle
Academics – Enabler – As the functions are established, provides the content and the skills. Teaches the basics that is required to live independently in the world – like arithmetic; also beyond the basics, provides an opportunity to shine in one specific area

However, there was the 3^rd element/variant beyond body and mind – I believe that is the spiritual part of it – that eliminates inhibitors and introduces enablers at the same time

Spiritual: The Link between the body and the mind

This is where I believe movements such as Enki (or the ones we went to) help; it abstract both the body/brain to the spirit. It is more than taking away physical/intellect inhibitors or enabling those – it is spiritual – makes the “chi” flow well and distribute the energy.
I believe this is where we need to go with a leap of faith – is the link proven? Not sure, but I know when I was practicing Karate and Tai-Chi actively, my learning and ability to work in an uncertain areas was much greater than ever before. I also know when DS went for aura healing, he was looking forward to the sessions – he said he felt good in those sessions...

(click to on the picture to see it better)

Yet another RDA done...

2008-05-17T13:39:00.000-07:00

We are back from a visit having done another RDA and lightened our purse significantly :). We had actually gotten off the RDI bandwagon due to the transition and transfer to the new country; but continue to have faith that its appropriate for DS. We believe RDI is an essential piece of the puzzle for the overall development (will write about that model in another post).

The RDA itself was uneventful; but we do work with a consultant who is pretty resourceful and think of actions outside the box; she is quite good with her perspectives and also look at our actions from a dimension that we aren't even aware of; and also have very subtle variations that helps DS to overcome some of the (mental) inhibitions.

So in our RDA, we ended up having two categories of things that we internalized. One is a set of child objectives that we need to work with - designing labs for that. The other is the set of actions and behaviours (kind of parent objectives) that we need to be aware of - these are things that needs to be woven into each of the labs. I call these as foundations. So, the RDI labs has to be a cross between Foundation x Objectives. The model is as below:
(Click on the picture to see it better)

Given the above framework that we have decided to adopt, we also decided that we need to design the labs prior to their deployment with DS. Here is a template that we plan to use as a part of lab-design and also document our video-reviews.
Ok, framework's done - now to actual work !!

Entering his world !

2008-05-08T21:28:00.000-07:00

DS would usually take two pieces of paper, fold it in strip of paper, fold the strips at angles and make several polygonal shape. That was something that completely absorbs him and he hates to be disturbed during that time. Also, to limit him to slip into his world, we have given certain times when he could do the "suruttu" (as we call in our native language)...

A few weeks ago, he allowed me to enter his world. I feigned incompetence and asked him if he'd teach me the suruttu techniques. He said yes, and proceeded to show me three of various things that he does:

He showed me that he made two "e" (but at not smooth curves, but at angles), then he changed one of the "e"s to be the mirror image of the other and brought them together and showed that its (an house with) windows
The second technique was: Made a Square box of one and the "e" with the other. He said that the "e" entered the box and the box became the space-ship and flies away
Then the third was a (once again an angled) "C". Two "C"s. But once again, one is inverted as a mirror image of the other. They come close together and one gets into the other, then the overall imagery is that of a box. So there is a new box !

It was interesting to see that how he has chosen to convert the imageries in his mind into shapes in this "suruttu" game. We did try Origami with him, but he has some issues with it (arising out of basic core deficits). Nevertheless, the interesting aspect for me is two things (1) He allowed me to enter his world and explain what is happening there and (2) The seemingly nonsensical activity that he does is not so - it does seem to have a method and a meaning.

I'm hoping that he'd continue to expose me to more of his imagination.

Stories and RDI...

2008-04-12T09:01:00.000-07:00

I had written about the approach that we intended to use (and are kind of bungling through it) in making connections across multiple scenarios within the DS's head.

Of late I've been thinking more about the efficacy of RDI - or rather how to make it more useful in our own way for the kid. We intuitively know that RDI labs, encoding and highlighting helps DS in someway and set him out in the thinking zone of drawing parallels.

One effective way I think could be the stories. Based on my online discussion with another parent (who I acknowledge as one of the best thinker-parent), here is where my head is - re story-telling. Story-telling or apocryhpal/anecdotal are most powerful. I wonder thats one of the reasons that our forefathers wrote Ramayanam and Mahabharatam, to ensure the values are taught through stories.

I do think at some levels, RDI labs do come across 'manipulative' :); I do give the benefit of the doubt and will call it 'role modeling'. On a different plane, stories could also be 'manipulative'. One of my colleagues said this - "the thing about analogies, stories and anecdotes is that you can use a specific story to drive the message you want with your audience; and at the same time, you can pick a different story altogether to drive a completely opposite message".

However, I do think Stories are most powerful, since they don't get overtly prescriptive and proscribe a solution. They let the theory hang (like the methodology to solve complex problem in cynefin framework); then yet another story let another snippet hang - it should help stimulate thinking makes connection between those various puzzle pieces and form one's basis for ethical/morals. This is where RDI could come in - it could help "simulate" that thinking - create/manipulate ourselves into a situation/lab that creates a live scenario for the kid to connect those dots. At the same time I also believe a 1st person's "personal experiences" abstracted to a 3rd person and stewed over a century :) is one form of story... RDI perhaps deals it in 1st person.

Anyways, believing this theory, we've invested some in Amar chitra Katha and monthly magic pot ! The next step is to find time !!!

Comprehension!

2008-04-06T21:23:00.000-07:00

DW is implementing the home-schooling with DS.

One nice thing, I think, she has come up with is this - DS has the Friday off - but its not completely off; what DW does is this - she tells a story about a movie (in our local language) through the week to some extent; and on Friday, the movie is played and DS watches it and tries to relate the story to the visual story that he watches.

It looks a good exercise on comprehension and trying to relate some emotions on the screen to an extent. Also, it seemed a good use for the day-off !!
______________________________
Btw, on a tangent, here is a good article to read; its strange that a online tech mag like wired has this article, but I guess its the awareness thing !
http://www.wired.com/medtech/health/magazine/16-03/ff_autism?currentPage=all

Hormones - Anger and otherwise.

2008-04-06T21:16:00.000-07:00

I had written about growing up earlier.

As its quite normal in the culture we grow up, DS is still sharing the same room at night with us. A few days ago, we had this "fight" and he got angry and staged a walk-out. He took his pilllows, blanket and his security-blanket and walked out of room; he marched out of the room and decided to sleep on the couch in the living room. This was a big deal for us - he was always scared of couple of things - the darkness and being alone. Doing this was a break-through for us. He actually, slept most of the night on his own, with night-lamp on. The next day we high-lighted it. We keep telling him that this was a sad and happy day for us; sad that we had a fight; but we are more happy than sad, since he became very brave that night.

Definite Signs of growing up !!!

Yesterday, as we were talking we were recalling the names of his friends from India. He was quite ok, until one name came up. This was the name of a girl his age; and who was his friend in India, for about two years. She was the one who was friendly with him and knew his condition but was very sensitive towards him. As soon that name was said, DS became extremely shy, shouted out the noise-word to mask out the name and ran away from the room, with smiles lighting up his face big time !!

For us, its going to definite sighs of growing up !! :) :)

Mindfulness

2008-03-14T18:59:00.000-07:00

Last week we had gone to a ware-house store around here. As is the norm, I was cruising and was looking for a parking space in a pretty crowded parking lot (at least seems so, in this part of the US). DS, fully engaged, told me to stop and said a parking spot is becoming free. His reasoning was that a man had his trunk open and was “setting things in the trunk”. From then, he pretty much had a play-by-play commentary going – “he has closed the trunk, has gotten into the car, reversing (since the rear-reverse lights came on) and then away and now you could park there…”. We thought it was a quite a good catch – basically drawing a logical consequence of what could happen based on symptoms, that one sees.

Today, we had another fun incident. DS wanted something bad – let us say, choice A (over B). And we wanted B. Since we had a conflict, we decided that we will use the time-tested Indian way of “writing it down in a piece of paper and roll it and pick one” method of choosing. DS was all excited and picked the first time – disappointing – it was B. Then again – B. He started to notice the patterns on the paper. Then after 3-4 times, it was B all the time, by which time he was pretty much figured out. He said – “Appa, you have written B on both and you are cheating”… That again, was a good catch. Actually, prior to writing on the piece of paper, I had sent him to another room on the pretext that he should not be peeking and had told DW that I’m going to write “B” on both bits of paper. DW commented, it would be great if he could catch the cheating. And he did… Again, drawing a conclusion based on patterns of events he sees.

Good logical sequencing !

Practicals - Trying it out !!

2008-02-26T21:37:00.000-08:00

We are kind of on pause mode for RDI - will restart it in May after our assessment with our consultant. In the meantime, we are also looking at what other things would be required for DS to be relatively independent.

Two weeks ago, i was assembling something - looking at the instructions. I was thinking it would be key for DS to develop that ability; even if were to keep a job later on. He reading the map kind of strengthened my belief that DS is ready for smaller "instruction manuals". DW and I are working on possibilities of giving out "instruction sheet" kind of thing to him. For e.g., cooking something would be the title and the 2-3 instructions around it; For eg, it would look like:
(1) cut vegetables
(2) heat wet vegetable
I call each one of the above as compound instruction which has sub-instructions in it (or micro instructions, if you are hardware engineer) - cut vegetables would break down to take out the vegetables he likes, possibly clean it, take the cutting board and cut them; and so on. So, it would help him not only to learn about instructions and also pause and make him think.

The other one is fractions. We are tending to use that more at home; give him a bunch of discrete and countable things (eats generally - like pistachio etc and tell him to give half to others; or 2/3rd to others, when there is 3 of it etc. The hope is that he gets the concept after which the learning could be easier.

Jokes a part ?

2008-02-23T15:35:00.000-08:00

We were on car, riding out, during a weekend. I was saying something; and DS remarked "I'm confused". I responded "No 'kan'fusion or 'kaadhu'fusion" (kan in our language implies eyes and kaadhu is ears). He stopped for a couple of seconds and laughed out loud. So, did he really get the "joke" ?

Second incident: again in the car - since I was new to the place, I had the GPS in my car; so he started to mimic the instructions; more like reiterating; if the GPS tells me to take a right in 0.5 miles (there ! decimals and fractions again), he'd tell me to take a right. Once I had switched the GPS off and was driving; he asked me to take a right and grandly announced that "I'm the GPS" and had a laugh !

Learning...

2008-02-20T22:31:00.000-08:00

DS did a couple of good things in the past two weeks.

The toilet seat is an issue for him. He hardly watches if its down or up. Last week, I showed him the seat (slightly soiled) and had the conversation around that being a guest-room toilet and guests visiting our house and how they would feel when they see such soiled seats. I think he understood it; for a day later, he called us and said, that he had taken the toilet paper and cleaned the sides of the toilet and he wanted to ensure it was clean. Of course, we were quite happy and the next thing is to get him use the anti-bacterial soap to wash his hands, which isn't as tough; since the time we introduced the diet ("due to germs in his tummy"), he pretty much ensures that he is clean.

The other good stuff was that he had found a car-wash in our apartment map. DW and I had not given that any attention; and he had twice talked to me about a car-wash in the apartment complex; i did not pay specific heed to it. Last week, I had to travel; apparently, when I was away, he tool the apartment map and figured out where the car-wash was and went to spot the place; along the way he had also used the maps-on-the-board ("you are here" kind of thing) to find where the car-wash was. When I returned back from my travel, he told me that he did find the car-wash and told me where it was !

This is good; so when motivated, he could actually read maps, which means he is able to map the abstract (maps) to the physical (locations)...

That kind of gave me an idea on something else.

Status update from here !

2008-02-18T20:33:00.000-08:00

We have been here for more than 5 weeks now. DS has been slowly getting on the other side of the fence. From where he started with (in India) that he would not enjoy the US at all, he has slowly transitioning. He likes the parks, likes the food, likes the walk, likes the drives etc. he loves the fact that he gets organic chicken and choclates with organic sugar - now he wants to go to the beach in summer and swimming pools and ride bicycles in the park.

Our experience with DS has been that he doesn't want to try something new - because its unexpected on him. So we kind of modelled a few unexpected things that he likes - like suddenly springing a surprise by going to an Indian restaurant to eat his favourite dish; or eating chicken at KFC (we made exception to his diet). And we are trying to encode that 'unexpected like' vs "unexpected dont-like'; and those two balances out and he gets more 'likes' than dislikes. He likes stuff, once he experiences it; The challenge is to get him experience it and take that first step !! But then, thats the core deficit, right ? Resistance to change...

[Also, this kind of reiterates that we need to continue on the RDI bandwagon!]

On the schooling front, we are looking at a complete mish-mash. Since he is quite receptive to descriptive (science, geography, english) knowledge, we do not want under-achieve on his learning. Whereas, in Math, due to white & black nature of the subject (he could either be right or wrong with the answer and he hates to be wrong), we are taking it a bit slow - so we are looking at a combo of curriculum. Part of california curriculum for his subjects, a bit of Enki movement, continue with RDI (restart formally with our consultant from April). We are also looking to follow-up our science lessons with a visit to the zoo etc. Last week we were at the Monterey aquarium and although it started off badly (due to a faux pas I made), he seemed to have gotten into some of it. Same needs to be done with Math/fractions - may be pizza would help (and an excuse for me to gorge some !)...

Growing up !

2008-01-28T06:09:00.000-08:00

Last night was a good bad.

For something I said (albeit wrong "accusation" if you will, as said by DS and attested by my DW), DS threw his hand-kerchief away - Now DS has a habit of throwing things (or asking it to be thrown away) if he is annoyed with something else. Since he threw his hanky, I called out his name a bit "loudly". He then threw another of his "minor" tantrum. I, in anger, turned my face away and did not talk to him. Then started the tug-of-war.

I then decided to stand my ground (stupid or wise, not sure at that time). I told him that every action has a consequence and he will need to face that - I used the word punishment once, but then on DW's prompt stopped it and used the word consequence. I also slipped in that 'in life, every action, good or bad, has a consequence" and he will need to face it. The consequence of it is for him to our bed-configuration will be different from every-day. He even stated that he never did anything wrong in the first place when I raised my voice; however, I told him, I'm angry about his reaction. He stood his ground for a while, and staged a walk-out to go to a different room alone and then caught our attention by sobbing aloud. Then when called in, he wanted status-quo (on his comfort-zone of every-day practice). I refused to give in and said that he will need to face the consequence.

DS was angry and declared that he "was angry and will not hug you" while sleeping and he carried his threat through. Usually, when sleeping next he snuggles up, but last night he did not; and I did not either. And through the night, he took care that not to hug in sleep.

At one level, it was very wrenching to watch him go through this and I almost gave up a couple of times. At another level, I also thought he became strong - where he made his assertions at several levels:
1) That he was accused wrongly at the first instance and did explain that one more time under stress
2) That he has his own sense of individual emotions and he can carry that through
3) That he is not playful all the time

Although it was painful to go through, I was proud at one level. Somehow, in his anger and his sense of righteous-indignation, he seemed to have grown up !

Settling Down...

2008-01-26T18:14:00.000-08:00

This is a report-out from the new location - which is the bay area in the United States... We have been here for two weeks now (post-relocation) and DS has settled/is settling quite well - better than what we anticipated.

The move itself was uneventful - fortunately I had an upgrade to business class on Singapore Airlines and DS loved the flight, the seat, the food on it. He was quite happy that he can lay down flat and at the same time watch Rajnikanth's latest movie Sivaji. The thing is, DS thinks that we will travel that way everytime... I need to break that to him some other time ! :)

In the house, he is quite ok - back home in India he started with I will not enjoy US; but slowly he is getting into things here - the large shopping experience, the parks, the drive, the cars (some of which are same as in India - which is a big thing). Also, the presence of organic food store has given more food options to him - organic chocolates, organic chicken (that he loves), gluten free cookies and biscuits...

One thing that yet to be settled is his schooling - he doesn't want to go to school here in the US and make new friends (so he says). We also think that would be a big change for him - culturally, language-wise and other-wise too. Although, we did visit couple of private schools, we are looking not to rush him. We are seeing if we can run a private or school district's Independent study program (ISP, as its called here) at home, look at some structured social skills classes and then at the end of this school year, see if he can go to a school. This is the one that still very unclear for us, but we are hoping to go with the gut and eventually hope it would turn out to be the better. Even the choice of housing is based on where we could get him the maximum benefit...

Our fingers crossed and we are waiting and seeing...

Turn the tables !

2007-12-30T08:16:00.000-08:00

Sometimes DS gets confused with English usage and the appropriate use of the word "to" along with the act of speaking...

A few days ago, I overheard DS speaking to DW. He was telling DW, "Amma, I'm suggesting you that you do...". He obviously replaced "telling" with "suggesting"... Having overheard, I then called out to him and told him, that he cannot use "suggesting you", but the appropriate usage is "suggesting to you. There should be a 'to' here except in the usage of 'telling'. Other than 'telling', its always 'saying to you', 'speaking to you', 'suggesting to you'"...etc etc.

DS comeback was, "Appa, what are you suggesting to me ?" :) Smart !!!

Sign from above !

2007-11-17T21:50:00.000-08:00

This is again about the impending move. Since the news was broken to me at work, I tended to second-guess my decision to move; the primary reason, in our minds, was to ensure that it would do good and be better for DS. Or else, I do not see a big need to move jobs, although the recognition is greater. It was always on my mind - and wryly thought like Jim Carrey in "Bruce Almighty" would look for some signs from above to see if this is the right thing for us to do.

Then cut to my travel last week; on the flight, where I tend not to see many movies, decided to see "Evan's Almighty" - which, post-facto, seemed a loose sequel to the Bruce Almighty. The plot for the movie is the God appears and commands Evan Baxter (a congressman ?) to build an ark, in the lines of Noah's - the plot is pretty thin though. So he starts building it, but the whole world and the family thinks he has turned crazy; In one of the scene the wife and the kids are sitting in a restaurant and there is a TV on playing the incident of Evan's ark - the people around make fun of Evan, while the wife squirms in her seat. Then God appears in front of the wife (as a waiter) and talks to her. When the wife tells him, all she wants is the family to be together, God asks her - if you pray for something, does God give it to you as is or provides an opportunity to do so - for eg, if you pray for courage, does God give you courage or provides you an opportunity to show courage ? Or when you want peace, does He give you peace or provide opportunity for peace"...

Hmmm... so when we were asking for "well-being" of DS, has God given us this "opportunity for the well-being" ? Perhaps, this is the sign !!!

Cop out ?

2007-11-15T02:44:00.000-08:00

Finally, DS was told about the uproot-and-move. He somehow has a view that moving to the US is not something he wants, although we had lived there earlier. He was around 4 when we left that place. There is something about that experience that he hates. During our normal discussions, DS had said many times that he hates going to the US for some reason that is yet to be excavated from the innards... So telling him about the move was going to be challenge...

But we had to tell him sooner, which we already delayed. So when I was traveling this time, we had decided that he needs to be told; so the plan was just two days before my return from my travel, he would be told. This was the sequence

we will get my current boss (who is also a good friend) to visit our house and tell DS that we are being transferred (DS has this view like the teachers at schools have to be listened to, the bosses at work has to be listened to)
there is bound to be a bit of melt-down; handle it for a while, and then invite his friends from the neighbourhood to come home and play with him.
if he is continued to be disturbed, I return 2d later and take some of the brunt...

In reality, there was some melt-down, then friends coming home helped to limit it. Finally, he has agreed to the transfer for an year (2008 to 2009 :) , no month specified :) ) with some pre-conditions...

I believe that DW handled this extremely well in spite of my absence (or perhaps due to my absence) and it required extra-ordinary amount of bravery and an aptitude of the oak-tree to do so.

So its kind of ended well; but one thought still gnaws at me... Did I cop-out on this and not want to face the kind of reaction that I expected ?

Bad times and bad days...

2007-10-27T23:37:00.001-07:00

Past 6 weeks has been pretty tough on every one. DW and DS have been continuously falling ill, with each's tail-end of the sickness tagging a fresh trigger in the other. I have been very very very busy given the impending change in career and upcoming uproot-and-move. Trying to understand what an unknown business means and at the same time trying to close out things here and finding alternate education for DS in the place we are going to move to has had me completely hooked on to every other thing other than spending time at home.

With all this, RDI has gone down the drain, ENKI too accompanied that. Cold and illness implies morning walks (SI) has been canceled. Add to these my own absence from home due to travel; resulting in the most undesirable situation. Its the worst-case scenario happening!!!

But, I believe things are a-changing for good - the rhythm is being re-established. I also know there is going to be one huge disruption when DS will be told about the move - he will not like it one bit. That would be the worster-case scenario.

What could be the good thing out of this ? That we have seen the worst-case scenarios; one more time ? And we will see more ? Like its said in Hollywood movies, "is this your best shot?"!!! Good, we are still standing and fighting... :) Jokes apart, although its frustrating, mostly for DW, thats the essence - just need to keep standing and be at it... relentlessly; and assume all these dips as minor aberrations thats bound to happen anywhere and in every other lives. But just perhaps, more at a different level of complexity...

__________________________________________

ps: This is a good read on bad-days.

Jokes on you...

2007-10-04T08:49:00.000-07:00

Today DS was asked to hand over the small jar of "Vicks Vaporub" jelly to me. Since DS loves the play of words, he brought it to me said "here's your witch"... I did not react much; then he raised his voice, did the scary-boo-thing and said "Witch !"...

Funny !! :)

The Human Race

2007-09-28T19:45:00.000-07:00

This was sent to me via email sometime in 2005. Not sure how much of it apocryphal; but everytime I read it, there is a small choke up the throat...
____________________________________________

It was a sports stadium. Eight Children were standing on the track to participate in the running event.
* Ready!
* Steady!
* Bang!!!
With the sound of Toy pistol, all eight girls started running. Hardly have they covered ten to fifteen steps, one of the smaller girls slipped and fell down, due to bruises and pain she started crying. When other seven girls heard this sound, stopped running, stood for a while and turned back, they all ran back to the place where the girl fell down. One among them bent, picked and kissed the girl gently and enquired - "Now pain must have reduced".

All seven girls lifted the fallen girl, pacified her, two of them held the girl firmly and they all seven joined hands together and walked together and reached the winning post.

Officials were shocked.
Applause of thousands of spectators filled the stadium.
Many eyes were filled with tears and perhaps it had reached the GOD even!

YES. This happened in Hyderabad, recently! The sport was conducted by National Institute of Mental Health. All these special girls had come to participate in this event and they are spastic children. Yes, they were mentally challenged.

And truly special !!!

____________________________________________
Here is to hope that the world picks up DS, long after we are gone and walks with him to his finish line.

Self Awareness and Regulation

2007-09-22T10:40:00.000-07:00

A neat little incident.

My mom was talking to DS (ofcourse, in his mother tongue). As he was talking, DW called him to tell him some thing. DS turns around and sweetly says "Oru Nimasham amma (one minute, mom), I'm talking to Patti".

That was too good; ofcourse, all of us had the persence of mind not to make a big deal of it. As soon he left the room we did a high-five and a jig (atleast, I did it :) ). The whole point about not making a song and dance about it was that DS seems to be more aware of all of this now and doing that would actually embarrass him...

...which takes to me the next point. DS seems to be more and more aware of himself and his surroundings and situations. That is leading to the next level of thought process - ie regulating himself. He is now talking about what his appropriate behaviour should be. What he could do when he is alone with us and what he would not when he is with someone else or visitors or his friends. He is also talking about the other part - what is inappropriate too. So, we see he is moving towards a bit of regulating his own behaviour.

For instance, some of his interaction with my mom has been stressful for him. He doesn't want to repeat himself and my mom cannot hear well. So, once after I play-acted with him to show about hearing issues with my mom. The next day, when my mother asked to repeat, he started with a loud voice then slowed down and announced "I started to scream, but I did not"...

So, is Self-regulation on the way ?

ps: If awareness and regulation is on the way, how much is he realizing that he is 'different' - probably knows it more now.

Trade !!!

2007-09-13T10:58:00.000-07:00

Recently, there was a "good" thing that happened to us. Recognition came my way at work. One thing that I have consciously done is, in my prayers only ask for something that makes DS progress and make it a conscious point not to ask for anything for ourselves Nothing heroic, it is just that we have clearly internalized what is more important; and I also believe we have been given more than what we really want, compared to so many other unfortunate ones.

...so given that, as I was thanking providence for the recognition, a thought crossed my mind: would I trade any of it or all of it for DS' progress and development, total or incremental. The answer was crystal clear - yes I would. So, I was not clear why that "good" thing did come my way.

Then I realized that, perhaps this is the vehicle He has sent us to make that progress for DS.

I'm more at peace with myself.

Contra Views...

2007-09-02T09:50:00.000-07:00

There was a recently a post on one of the forums on a snippet about a doctor who had declared that kids in the spectrum are doomed for life and cannot recover etc etc. Few parents were rightly indignant and reacted angrily wanting to the out the name of the doctor. Although sometimes it is depressing to hear such things from the learned community - somewhere I recall reading that Medicine is not about just curing, its about curing with caring sensitivity - my reaction is thus:
--
As a "practicing parent" for the past ~7 years, let me give a contra view here. Lot of folks here have condemned the doc who had talked Autism being a lifelong condition and cannot be cured.

Do I agree, No. But am I outraged ? No. Doctors are professional, he has given his professional/informed (to what extent, is very subjective) views. We just have to take it as one more point of view. Personally, I don't mind diverse opinions, since it provides us with the worst case scenario that I can start preparing for. Providentially, in reality and in life, if the best case (or even average case) scenario happens, I'm better prepared and well covered.

So, I'm personally against naming the doctor. He has provided his view at a completely non-emotional level. And in his life time, data would him prove him wrong; and right. I think he was merely giving his professional opinion, even though its not what we want to hear. If we want someone to tell us what we want to hear, we should just go to our own parents/support-groups :) !!

Having said all of this, do I think there is going to be a cure (whatever that implies) - I don't know, don't care. All I know is that its possible for my son to have a close to normal life with obvious idiosyncrasies (like every other human being is). As parents, we will (and should) focus/continue to do things that raises the probability level of that result.
---

Subjectivity Cycle - Part 2

2007-08-25T23:43:00.000-07:00

Earlier had written about Subjectivity Cycle. Posting about this and discussing it in some other forum I have a bit more clarity on it.

RDI for us is still very key, since I believe its the one that does set-ups the structure (or functions) or lays the first foundation of "myelination", ie the first "conscious" way of creating pathways for the brain to recognize a function. And then comes the connections with various other methods (Enki, art forms etc) and elimination of inhibitors through SI.

The Subjectivity cycle is to give him a view through labs, that different perspectives exists for different people. Although there exists specific description of a baseball (contour, color, size - basically quantitative/objective), there is another subjective view to the same ball by different people (the color is not my choice, the ball is too small for my hand, the stitches are too obvious for me - basically qualitative/subjective).

That is what we are trying through those RDI-objectives in the Subjectivity cycle; ie:
=> A ball can be perceived differently
=> I've an emotional answer to my perception (like, don't like, don't care)
=> The emotion, however can subside/change over a period
=> based on that change, i can re-draw my subjectivity (able to live with the issues, start liking it etc)
=> and the change could drive a new perception

The intent is to see if lay a foundation to an appropriate appraisal function, rather than inappropriate ones (like fear, need to have things static etc). Hopefully this would lead to the causal analysis. We are figuring out the RDI labs around those "phases"; and then (hopefully) use the Making-the-connections thing with Enki, stories, playacting etc to further make the connections.

Hope I'm making sense !

ps: We are finding it tough to have the "don't care" emotion come through.

War of the Roses !

2007-08-24T22:17:00.000-07:00

This is not about the famous Danny De Vito's movie. Sometimes, both DW and DS will get into a tiff. DW will have reached a tether's end and DS would simply not want to do what the day's plan was. DW, usually patient (unusually patient for normal parents, if I may add) on a certain day would be on a short fuse.

As a DD/DH, I mostly would be without a clue - if its right to intervene and go with the flow or if I should help one of them to get out of that space, so that constructive dialog could start again. Last week, there was one such day. So after all the "fight", DS very tired crashed early on our bed. Later on, when I woke him up to move him to his bed, he went seeking his Mom, half-asleep to tell her "Sorry" and told her so. Further, he explained he is apologizing to his mom, since he had troubled her throughout the day !! This I believe, was such a moment of joy in a day of despair for DW.

It is one another proof of that there is normal emotional thought running through these kids, inspite of such behaviour tantrums. Leads me to believe more so, those behaviour are due to some overloads on their senses resulting from some eco-system "noises". Their need to react at an emotional level is getting submerged within the noises. Why would he resurface his emotional thought, after a brief calming ?

In any case and perhaps on a tangent, there is a news article recently, that confirms what is perhaps already know. That the IQ of these kids cannot be measured using the normal IQ tests administered to NT kids.

"Investment" explained...

2007-08-16T06:10:00.000-07:00

Earlier in this post, I had talked about securing DS's financial future to some extent. I had gone ahead with the Tata-AIG Mahalife plan for him last month with first premium payment on the right day, where the stars and planets were aligned !

Cut to the past. Whenever we talked to DS about buying some real estate, he always used to get perturbed about it to an extent. His worry was that he likes the current place that we are staying and buying real estate implies we will shift to that and he did not want it. We did not have much success in trying to explain that it was for "investment".

Cut to two days ago. I had told him that I have done something for him and he would get a certain amount of money monthly and wondered what he would do with it. He said, when he does not need it, he would give it to "amma" and when he needs it he would take it back from her. I had to pounce on the opportunity and told him that exactly what we do with the money; when we don't need it we "put" money either in bank or real-estate etc. And when we need it, we ask the bank to give it back or give the real-estate away and get the money back.

"Investment explained - QED" :-)

Bracing for Braces...

2007-07-30T08:48:00.000-07:00

Last friday, we went in for braces for DS. We have slowly gotten him to this part with some preparation:

Do massage of his teeth and gums (with fingers)
Some dental clean-up taking him to the dentist and photographing those
Prep for braces by the Orthodontist - by having an elastic band tied to his teeth four weeks ago and then some metal rings three weeks ago.

I also had to tell him that I wore braces when I was a kid. Also, had pointers to three people that he knows that have worn or wearing braces. And also how tough it was for me and them to cope up with the pain, whereas he has been brave.

So far, not much issues - he has complained of some pain - have applied the gel that the doc had given him and also crocin. He has been settling down. Due to grace from the one up above, we are not having much of an issue (touch wood); I tend to believe that there is some enduring (and endearing) fortitude in these kids that we cannot really fathom !

He is also looking forward to the fact that after September (when he believes the braces would be off), he is going to be much more handsome ! We have told him that !! And he feels shy about that !!! (That should be a good sign :)) !

Subjectivity Cycle !

2007-07-23T09:15:00.000-07:00

Using the various RDI objectives that our consultant has given us, DW and I have abstracted it out to various phases of "Subjectivity development" - ie start with the concept of subjectivity and then the way forward on it. This would, hopefully, increase the DS's awareness of Subjectivity in others: how different people (and self) can perceive different based on situation, people, ecosystem, one's own experience and learning and so on and so forth.

Here is our take on how to increase subjectivity levels; moving from one to another and adding complexity as we move and model labs for each of it.
(click on the image below for higher resolution)

Time for Physics ?! :)

2007-07-21T23:25:00.001-07:00

DS had made a couple of observations in the past week.

When looking through the peep-hole on the main-door, the people and objects look smaller and distant
When looked into the mirror, the (digital) 2 looks like 5. This observation was inside an elevator

I wonder if its time for us to teach him some basic physics concept ! ;) :). Seriously !! So, yesterday, DW and I brought up that peep-hole thing; and one of us explained to the other about the concave and convex lens. I'm pretty certain he did not understand the concept, but was sure he would have stored away the words. Atleast, the next time he is talked to about it, he would not be stressed by the unfamiliarity.

On mirror, DW and I played the "mirror game". That is - face each other; one be the mirror image of the other. DS intently watched this - again not sure, if he got it, but DW and I had a bit of fun playing that game !!!! :)

On Stage

2007-07-11T08:38:00.000-07:00

About 10d ago, we had our "Apartment day" - Basically it is an annual celebration of formation of our apartment. Typically we have sports and cultural events. The sporting event starts couple of weeks earlier to the cultural.

DS was very keen that he participate in everything. He participated in sports (cycling and swimming). Of course, it was fun to watch him get onto the cycling race; and cycle normally (400m) around the apartment, completely ignoring that in the race that you need to be cycle faster. It, was in a way, sweet to watch him to do that. Then the same pattern on the swimming too.

As I had indicated in an earlier post he did sing MS's "Oli padaitha Kanninai" on stage. I do believe he did fairly a reasonable job at it, modulating as per pitch in the song (taped it and sending it to our RDI consultant). But the best was yet to come...

...The program ended with 3 girls dancing to a movie song. Towards the end of the song, whole audience of kids joined into the dance as the music played on. DS said he wanted to join the dance and ran to join the dance with all other kids on stage. His dance was jumping up and down. He paused at one point, intently watched the dance of other kids, as if he is studying their moves, then resumed his dance ! Also, captured on Video for our consultant to see!!!

It was quite cute and heartwarming to watch...

Scare !

2007-06-30T09:23:00.001-07:00

About a week ago, around 7.15AM , while doing "the balance beam" (about half-a-foot above the ground), DS had fallen from it and scraped the skin of his elbow. He was quite distressed with it and hence DW took him back home - while waiting for the lift in the foyer, DS fainted and fell down. He was then lifted up to the house by a neighbour. Fortunately, the apartment opposite houses a family of doctors and one of them was able to quickly check him up and except for the bump in his head as the result of the fall, he said the pulse, BP and pupils were all fine; and its good to take him to his usual doctor after he had time to recover. This was second occurence - when DS was less than two year old, he was playing all over his mom; DW had caught his wrist and that had twisted it to an unnatural position, after which he had lost consciousness briefly.

After about couple of hours, DS was back to normal self, but did have seemed quite fatigued in those two hours. We were quite apprehensive and worried - because he is in the age, where we are told, the onset of seizures could happen as a co-occuring condition. We do know that there are drugs to control those, but we were worried since the seizures apparently set the development back. DS's pediatrician checked him out in the afternoon and said he looked quite normal and all his vitals are ok and DS's enthusiasm seemed back on. He said it could be just Vasovagal (syncope) attack or Akinetic seizures.

He did ask us to consult a neurologist and perhaps do some tests. Then came the neurologist consult. The neurologist tested him out, his reflexes and his reactions and said DS is fine; Given the other incident when the DS was 2 year old, the neurologist said that the fainting spell could be a result of extreme and unbearable pain. But if we had the money, we could do tests. So we did the EEG and CAT Scan. Both the report came out normal.

We are relieved to an extent. Hopefully its just vasovagal syncope and nothing else.

Using the motivation !

2007-06-19T09:06:00.000-07:00

Looking for some suggestions here...

At our apartment, we have this annual day coming up on the 1st of July. Usually, this is a social gathering - where there are sports and cultural event. This sort of "party" or get-together happens twice in a year - one during the new year's eve and another the annual day.

During the last new year eve, DS sang MS's "Kurai Ondrum illai" with great gusto ! He was so excited about it. Infact, when he paused a bit going from the first to second stanza, the crowd thought the song was over and gave him an ovation. He had the presence of mind to get off the stage (dynamic thinking ?!) and then come to us and tell us that he could only sing half the song...

Now, this year, he wants to do all - sing, participate in sporting event (cycling and swimming). He has even picked the song he wants to do - MS's "Oli padaitha Kanninai". This time DS's grandmom, who is a classical singer herself is at home and trying to train DS to sing.

Now the question we are grappling with is this - Although his intelligence level and skill levels aren't bad, the biggest inhibitor for DS, at most times, seem to be the absence of motivation; however, the participation in this party/event seems very exciting for him; he is willing to perform on stage and even put himself in a position where he knows he is not good enough and compete with other kids. Is there something that we can do with it? How do we take this and build it up from here, as a foundation for motivation for other things ? Any ideas?

Securing the future.

2007-06-12T09:34:00.000-07:00

Like any other "special" parents DW & I always worry about securing the future for the DS. The other challenge we have is the absence of sibling. So we are not very clear or even sure how his future would look. As we prepare him for the future challenges and hopefully "train" his mind for him to be able to think dynamically and in a dynamic eco-system, we also worry about his financial future. Hopefully, RDI, Enki, SI etc etc gives him some higher chances of independent living (or "quality of life" as it is called in RDI ;) ).

On the financial side, to be very blunt, we are concerned - we cant leave him a corpus - how would he manage it ? Would he be "cheated" of his inheritance, like its shown in the movies and the ones that we get to hear in real-life too. Leaving property has the same challenge. The other one we are exploring is creating a trust, selecting trustees who could be trusted (etymology ? ;) ). Atleast, that would introduce the checks and balances and also reduce the risk of foul-play.

The other one we are looking at is couple of insurance policies - Jeevan Tarang from LIC and Mahalife Gold from Tata-AIG. Although, I'm constantly advised by my "CFO" friends, that insurance is not an investment, I'm drawn to these two schemes. You pay premium for around 10 years for a sum assured. You can take the policy on the child's name. After the completion of premium period, the policy pays a certain percent of the sum assured to the policy holder, every year (read every year), until the age of 100 ! At the completion of 100th year, the policy holder gets back the sum assured...

I'm drawn to this from one angle only - although its not a sound financial instrument - the pay-out is periodic and that I think is a good inhibitor to complete swindling ! I could be afflicted with paranoia perhaps, but its about securing the child's future... a special one at that !

Hair-rising Experience...

2007-06-11T05:29:00.000-07:00

For a long time, I’ve been playing the hair-dresser for the DS. I’ve even prided myself to have evolved in that line, being a target for butt of jokes on alternate career from the immediate family. A long time ago, I had taken him out to a “barber” shop (as they are called here). He could not take the poking and having to sit still. So, that experiment was quickly dropped and I restarted on honing my skills.

One-day, we realized his fear has shifted from the poking-and-sitting-still to being subjected to completely-shaved-pate and present a Yul Brynner look. He started worrying more about clean-shaven look, particularly after seeing his uncle sport one once. So, a few months ago, I had actually taken him along with me to the shop, when I had needed a haircut. He sat next to me on another swivel-chair and watched us the whole time with great interest. At the end of it, he seems to have realized that

Having an haircut at the “barber shop” is okay and it is voluntary and they do not force anyone who comes there to have an haircut
Secondly, all the haircuts do not end up in a clean-shaven look.

So, last week, I took him out to the shop. It was good to see him get there with a great anticipation and with only a bit of anxiety. Not only he waited for his turn for about 45 minutes, but when his moment came to be on the chair, he sat still, was ok to have the cloth around him and only once did he cry out loudly – when his nose itched and he couldn’t scratch it !!!

Crossing the Chasm...

2007-06-03T05:50:00.001-07:00

DS has been "swimming" (in quotes and in italics, since its been mostly splashing around in the pool). He kind of got to float and move a bit forward with leg strokes. Last week, he got his arms moving; funny thing was the left arm will come around out of the water, forward, and down in the water - thus completing the stroke. The right hand never came out of the water, and instead it would be doing a dog-peddle. As a result the forward movement was not very great and the right arm paddling inside the water, acted as a rudder and turned him to one side

Today, we decided to put into practice (well, actually remembered) what the SI specialist asked us to. Do some gym-based exercise before going into the pool, to get him to proprioceptive input. Well, we did not take him to the gym, but we had him stretch his shoulders on the Thera-band (we bought a bunch of those, last week from Reebok stores - costly, I'd say). Lo behold, today, both the arms were going around and legs splashing all over, DS crossed the breadth of the pool. This was a few times until the Coach who appreciated it loudly - and promptly DS lost it post-that ! ;)

I believe we just need to continue on PP, Vestibular & Posture SI activities. We did come up with a sensory-diet for him. Lets see how it goes.

The next inflection ?

2007-05-30T18:25:00.000-07:00

As the (extended) summer holidays for the DS comes to an end, we look back at the hols. I believe this was one of the most fruitful holidays - rhythm was set, RDI was woven in to an extent to the lifestyle, understanding (although basic, I'd say) of Sensory difficulties were internalized and DS seems to have made some good progress in several areas. Not sure if school would help him in that progress or would impede in it; we need to go to the school and talk over with his teachers on this.

The other thing was that we had taken a video of his school time (about 2hrs) and had shared it with both our RDI and Enki consultants. Good inputs from both of them. The Enki specialist had said that he seemed not to be inhabiting is body (I would have gone, "wwwhaat ?" several years ago - but with the DS being special and my own tyrst with martial arts, I see possibilities); and his perseverative actions like banging the table in frustration on the video or wringing his hands, are actually his attempt to come back into the moment. She has advised us to have a shorter class span for him, where he is on 'taught mode' for about 15m, then do a 3-5m sensory activity and then 5m of his own time; and she has given us a possibility of using Origami to build on his need to have strips of papers on his hands.

We had also met with a Sensory specialist and she has provided us with a set of sensory activities that we need to do on him. I'm still unable to schedule them in a way that we could run it well and consistently - need to do that this weekend; the Enki movements has given an added set of tools for us to use. (Btw, why the "I" in the "I'm unable..." is that we have a kind of division of labour between DW and I - she does the RDI and Enki and I am supposed to design the SI for him; as ever, I believe I woefully equipped to it forward, but we will stumble on ;) ). Reminds me, need to send a note to the SI specialist and ask her to give us a pilot schedule on which we can op the SI activities.

Wonder, if the next inflection would come from here - confluence of the mind and body ? As a non-sequitor, it does sound funny that the logical guy I am, I'm talking about abstracts; but having a special child opens up new philosophies; theories abound and fresh axioms appear !

Asking for help !

2007-05-23T19:26:00.000-07:00

It has been quite tough for DS to ask for help in a way thats descriptive. If he is looking for something and he cannot find it, the graph gradient from quiet to a temperish tantrum would be quite steep. One of the things we have been working as a part of RDI is to being descriptive and asking for help, rather than getting stressed about it. We have made some progress; progress within the confines of what the child in the spectrum would make.

Two days ago, DS was playing in the apartment play area in a grass mound. He was playing with another kid (half his age though), and playing throw-catch with the ball. I had decided to swim in the adjacent pool and there is a kids pool area between the bigger pool and the grass mound (photo adjacent ;) ). DW, who was with him, decided to go upstairs for a few minutes. In midst of my swimming I heard DS talking to someone. When I surfaced he was talking to an older gentleman, asking for his help, since the ball had gone into the kids pool. He was asking the gentleman to help, since he cannot get into the swimming pool without the swimming attire.

Later on when we were discussing this - we told him that we were very proud that he asked for help, but asked him (ofcourse, in our own declarative way :) ) on what his thoughts were. He said, he knew the gentleman since he and DW had gone to their house for a function. So, he knew that man, hence he asked him specifically for help. He also said that the other option he had was looking for a long rod, that he could not find.

Looking to help himself first, check and continue to reinforce.
Asking for help, check & ctr.
Identifying the appropriate person for help, check & ctr.
Make judgment if the person can help, work in progress.
Articulate emotions when things dont go the expected way... yet to start, long way to go !
______________________________________________________
ps: The gentleman in question said he could not help, since he was carrying a baby. By that time, I had intervened to get the ball for him; in the hindsight I did that too quickly. Should have waited to see what else he would have done. Later, I tried to get him to relate how DS felt when he was refused help; he wasn't able to articulate from an emotion perspective; he said it from logic - ie the man could not help since he was carrying a baby and cannot get into the pool.

Good break ! But a good thing ?

2007-05-18T10:50:00.000-07:00

We had a vacation over 10days and just returned two days ago. We had been to Mumbai and from there to the final destination, where it was Sun, sand and water. The last two are stuff our DS absolutely loves. It was a good good break - for me from work, for DW from daily routine of working with DS and for DS from the daily routine ! So much so, that DS wants to go back there next year too; and while we were returning, he asked us at every logical point (like hotel checkout, airline checkin counters, immigration point etc) that if we need to tell them that we want to book in advance that we would return the next year !!

Not sure what it was for him; he was not physically very active; but I guess the break itself was good enough - also, because we were in alien conditions, keeping to the diet was quite tough and we had let go. So, perhaps that was enjoyable for DS. We did see some regression in his behaviour - like inappropriate laughing at times, a bit more excitable than normal. So, sometimes I wonder if this its a good thing for us to take this kind of break; but then I also think, when we reconcile the balance sheet, this is a short-term loss for a long-term gain - i.e., recharge ourselves (all three of us) to continue on this path for the next year, until the next break. So much so, that before we left the hotel, with DS we took a vow that we would all do what is expected of us and with no "task avoidance". Back at home, the last two days has been good - DS has gotten back to groove. Ofcourse, adjusting to new SI activities has been a bit tough, but eventually he did agree...

...which brings to the other good part of the trip. We did meet a SI specialist, who had evaluated him and recommended a host of SI activities - which is kind of overwhelming. We've requested the specialist to schedule it for us as "sensory diet", so that the whole thing is more systemic. Now, the jury is out on that on where we would be and how successful we would be with that. Fingers crossed.

The judgment day cometh !

2007-05-03T18:26:00.000-07:00

We did an IQ and Skill (re)assessment of DS over the last month. His IQ, although has come down, is normal range; and the Doc believed that if he had the motivation to complete a few, he would actually be better off.

But the best part for us was this: Doc had done the skill assessment on him - reading comprehension, arithmetic, reading, spelling, writing etc - The tests were:

Weschlers' Intelligence Scale for Children III edition
Weschlers Objective reading dimensions (WORD)
Weschers' objective Numerical dimesnions (WOND)
Weschlers' objective language dimensions (WOLD)
Diagnostic interview for social and comm disorders (DISCO 10)

Although he did very little at school over the last couple of years, his skills were closer to his age-group - a year or so less max. Except his writing, which was like 4-5yr old. I think that is due to his SI issues...

DW, who was tense before the assessment, is all smiles and I think that would remain on for a while :)

It helps us keep the faith in the path we have chosen -

Part-time schooling
RDI
Enki
SI
GFCF kind of diet

I believe, these help build the foundation and creating neurological pathways for him - creating the functions; and the actual schooling and skill building can come later; i've no issues with that at all !!! This is a good milestone - to look back with satisfaction; and look forward for more work ahead.

And yes, he can relax !!

2007-04-22T07:19:00.000-07:00

There was thing with my DS. Whenever, we tell him to close his eyes, he could not actually close them - he would shut his eyelids, tightly - so much so that his forehead would be burrowed and we can see the crow's feet around the corner of his eyes.

We have started a new "thing" for him - the rhythm, based on "waldorf" like program. As a part of the rhythm, we play some really soothing music in the background and get him to swing in a cane chair (a kind of swing); sometime we gently swing him as the music plays in the background. After the (SI kind) morning walk, this is the part of his rhythm.

I've been noticing this for a while, but now I see he does this more often; today as the swing was going back and forth and with "gokulathil kanna, kanna" (a tamil song with classical overtone), he laid back his head on the backrest of the swing and closed his eyes gently, listening to the song. No burrows in the forehead and no crows-feet...

...The noise around and in his own head seemed to have minimized. Oh yes, he can relax !!!

The number moment !

2007-04-17T03:02:00.000-07:00

The summer is usually a great time for DS. He loves to splash in water and he is learning to swim this summer. Its not been easy, but he is persevering with it...

But the champagne moment came a few days ago. We are using some of his "would-love-to-do" activities to teach him the concept of money. The principle behind is that he needs to pay us for him to do some activities. We have a open "box" with three partitions with Rs.5/-, Rs.2/- and Re.1/- coins in them - the coin pile is also labeled. And he needs to pay out my DW or I. for frolic in the pool. Or any such activities that he loves.

Couple of days ago, as I was rocking him in the swing, as a part of his rhythm, I told him that the day was a "cost" day; that is he needs to pay for his activities. I told him that he needs to pay for pool and Oral-mathematics (where he does word sums denoting multiplication or addition with my DW).

Pat came his reply - "Appa, Oral-math is so expensive, I cannot afford it" !

And we went :) ;) ;) ;) ;) :) for nearly a week !!! :)

Making the connections...

2007-04-09T23:00:00.000-07:00

As a part of the programs we run for DS, we tell read him a lot of stories, from various books. The intent behind that is that as he hears the stories, he starts making "connections" between various characters, situations, settings etc to what he himself sees, feels and experiences in his own life on a daily basis. Basically, the intent is to get him to think and draw parallels. And then perhaps, he starts seeing the similarities and differences.

I've been thinking as to how to make this tool more effective. I do know that the connections are at different levels.

The first being physical, factual. Things that are tangible and are relating to the senses - can be seen, heard, touched, smelt etc.
The second is emotions - he is able to connect up to the emotions expressed by the characters in the stories.
The third level is abstract - he is able to reason a bit - as to why the character in the story felt the emotions in the way that s/he did. Kind of causal thinking
The last level being connection to self - experiential - as to how he is able to connect the characters/settings/situations to his own experiences and what he learns out of it.

Deriving from above categorization (my own, so dont sue me :) ), I have modeled the levels and making the connections (the ones labeled "recall through") as below (click on the picture to blow it up):

Today, we are kind of labeling the details in the stories to one of these levels, with an hope that we can effectively highlight some of it by weaving it in our activities and programs. The good news is, our DS is able to do 1 and 2 to some extent. Draw parallels at level 1 and to some extent in Level 2. The L3 and L4 are going to be challenging... I believe if he can start doing L3, then the L4 would naturally follow. Fun, happy and frustrating times ahead !!

Sanity !

2007-03-31T09:45:00.000-07:00

[This is a post from my other blog - the funny thing is perfectly normal NT people have commented back that they too feel the same one time or the other. So, whats wrong with DS, anyways !!]

Bore beyond
my eyes
Into my head -
See wires crossed
Neurons lost.
An inchoate mass
of ocean of thoughts
Rise in noisy waves
fall to a still-born end.
Strident voices
In a cacophonous cadence,
Shutdown my senses.
I arch tense;
Body spins -
masking the din.
Past, tense twirls,
quiet unfurls.
Senses rebound
coherent and sound.
Spy deep into my brain -
Beyond turmoil and storm,
In that lucid calm,
I'm all heart...and pain.

A for acceptance, B for Be...

2007-03-29T10:32:00.000-07:00

[Note: Above was the post that I had posted in the Autism India Yahoo group as an input to the discussion on caregivers and acceptance]

(or like Sir Paul said, Let it be ! :) )

I actually was in the sidelines like someone else has said and watching. Then I decided to jump in with my 2pips...

1) I think "A" for acceptance is the key. Not acceptance of Autism, but acceptance of diversity of views and contra opinions. I think it is this trait that has made science progress as much as it has. The point is to keep it at the situation and not at a personal level. Like xxxx had pointed out that everyone in Autism has contributed immensely to the awareness, development and intervention-techniques. But at the same time, expecting everyone to be know-all outside of their realm of expertise is also setting us (parents) for failure. So, its key that parent can make that differentiation. To me, that parent's first challenge was there was a gap between his expectation and the result he was handed with. Its his learning curve. While I acknowledge and even look up at awe at these institutions and people who have given so much, I also very strongly believe its the parent that feels the utmost pain for their child. So, when zzzz posted his contra view, while I will NOT agree to what he has said (and I'm glad the group moderator took the references out), I can completely empathize with his moment of pain and frustration and what he went through. From that perspective, I do hope we acknowledge his pain and disappointment. After all this is also the "Parent support" group.

2) On Acceptance of autism. I don't think I'm ready to accept autism. IMHO, lets not confuse that with the 'acceptance of our child'. I accept my child for what he is and what he does and I do feel proud for the kind of effort he makes every day, but i do NOT accept that his condition is a 'given'. I do believe, like he has done in the past 6 years, he will improve and I will do what it takes (within my resources) to ensure he continuously gets all the inputs; I do

GFCF to take away his physical inhibitors
RDI to do-over his neuron connections :) and provide him with a framework for to think
Waldorf-kind of education for him to experience stories and use the RDI framework to make connections
SI for him to get physical confidence and take away the noises

Thank you,
[....]

Through my son's eyes !

2006-12-05T09:11:00.000-08:00

[DS is 10yr old now - this is a futuristic imagination of how he would feel when we tell him about his condition]

I’m a 15 year old. I think I’m a normal 15 year old with the normal needs and normal outlook. Sometimes I think I cannot define ‘normal’. I tried to, but I have failed. So, I’ve used ‘normal’, since I’ve seen other normal people use normal.

My problem is that I think too much, see the details greatly and I can remember the minutest details. Give me a puzzle – actually, I don’t have to see the big picture; I can see the connections and continuity between two puzzle-pieces and connect them together. I’m pretty quick at that. At a young age, my parents have tried using deceit to get me to do something I don’t like. I can think 10 steps ahead of them and was able to say ‘no’ at their first step. I am much smarter than both of them put together. It often frustrated them; but it was my decision to make what I wanted to do.

I am quite good at arithmetic and all the numbers. I can learn things very quickly – one time, when I was in 2^nd grade, my math teacher took me to the 7^th grade and asked me about the 8-tables. My mother later told me that was because a student in the 7^th grade did not know the tables. However, other than shopping, where I have to give a certain amount of money to get what I want, I don’t see any use to the numbers. My mother used to tell me that I could learn mathematics so quick that I used to get bored with the sums when I was in lower grade. What I loved was the words and the play it had. It was fascinating to me that by dropping a letter here or there gave completely a new meaning to what is being said. I loved it and found those phunny.

I loved visuals, songs and painting. I could actually hear a song a few times and then I could sing it out myself. I was told that I’m quite good at that, only if I could sing it in tune. I don’t understand that – but I enjoy listening to songs and singing along with it. There are few of my favorites that remain so for a period of time. I also like painting – particularly I relished the time when my friend came home and painted with me. I really liked her, but I am not sure if I told her that – I hope she got the fact that I was happy that she came home and played with me. It is a special moment for me. I still smile when my parents talk about her.

I am a very shy person. Also, I know I am not well coordinated. So when I go to the playground, I look at other boys and want to play with them. Sometimes I don’t know how to. So, I just like to be in the group with them. Sometimes I get bullied, but I think it is ok – since they are at least talking to me! I try and tell them that bullying is not good; some of them listen, few of them don’t. But although I remember every detail, I forget about it. As my father has said, it is sometimes good to forgive. I think I just do that.

I don’t like certain noises. Just like my father – he does not like the noise of the blender while he is watching TV. I just don’t like that noise at all, any time. I also don’t like to change constantly. I see and remember so much detail that it is tough on me when that changes often. I find it comforting and soothing if things are where they should be. Sometimes, my parents have helped me through it. We have played games that have helped me understand that although I don’t like change, my parents have helped me understand that changes are good for them and help them to stay away from boring. I think, it is similar to, I like chicken and my mother likes appam. We are different.

Ah, my parents. My father – Sometimes I cry and feel like crying when he scolds me; but I remember times, when I have played with him and when he talks to me about his office, his own child-days, asks me about my school – and I remember those well. It makes me laugh. I also make him laugh, when I hid the remote once, when I did not want to change the TV Channel. I can still recall how he hugged me before I go to sleep. During those times, I did not feel scared about anything, even the bullies. My mother, I like her mostest, more than my father – I do think a great deal of her. I’m not very clear how other mothers are, but my mother is the greatest. She is so caring and she takes care of me so well. I really feel happy and good when I hug her. Somehow, when she gets hurt I feel bad – that day she hurt her toe dashing against furniture and she cried out aloud – Usually, when a ‘dashing’ happens, I find them funny; But that day, seeing my mother in pain, I too cried. I love her very much and I do think she does too.

I’m not really sure about this: I’m 15 years now – I was told that I’m different due to how my brain is wired – I’m a kid with Pervasive Development Disorder. I am told I’ll be incapable of thinking, learning, making friends, showing emotions and being affectionate. Maybe it is true.

Precious Son, I'm your Father !

2005-08-19T05:12:00.000-07:00

[This appeared in the Metro+ edition of the Hindu on the Jun 18th, 2005 at
at http://www.hindu.com/mp/2005/06/18/stories/2005061802990100.htm]

It was a day that was like any other day – just like the English movie “Groundhog Day”, where every day is repeated again and again for the protagonist of the movie. Not only the day thus far had been the same as yesterday and I know the rest of the day would be the same too. It is of small matter that I have just been awake for 15 minutes. I know my wife would have woken up about an hour ago and would have gotten into her daily routine – preparing for the special breakfast for my son and finishing her reiki routine. My son – I look around he was soundly sleeping. My wife would come around to the room exactly in about 5 minutes at around 7.30AM to wake him up and start his daily routine. So, by now you would have got the picture – our life is that of a fairly routine one. Oh, I forgot to tell you, we have a son, who is a “special” kid – its one of those things that the medical community is still cracking their heads and brains on and with no real answers; they have then conveniently termed it a ‘syndrome’ with reasons ranging from a weird diet to a fragile gut. He being special, I guess, makes us, parents ‘special’ too.

Yes, I think we are ‘special’ too. Apparently, in the United States, it was one in 500 families and now its one in 200 families that have one such occurrence of special kid in their families. Typically, having a normal kid in a family is something that one can not prepare for – having a special kid in the family is something that none in the family or in the extended family can even understand, let alone be prepared; if at all they can work past their acceptance of such a kid in the family. But we all learn; my wife and I went through the whole cycle of transition that HR managers espouse – Denial (“oh, that is normal for a 4yr old” – us; “when you were 4yr old, you were exactly like that” – my mom), Resistance (“no, it cannot happen to us”, but for some quirk of fate we quickly got over that one), Exploration (“ok, lets actually go meet specialists” – we went to a child psychologist, psychiatrist, intervention specialists, got unstinting support from my sister and her family and a few close friends) and commitment (which is the phase we are in now). We are now totally committed to our son; more so in a way that all our daily routines are driven around our son’s daily requirement and routine. Our days have morphed to weeks and weeks to months and months to four years now, since we first discovered the “specialty”. I don’t see we have any let-up in our focus on the kid; my wife even learned her reiki so that she can ‘heal’.

Let me now try and tell you what this commitment means. To state in simple terms, our life completely revolves round the kid. More so for my wife. It has been found that mothers make the most impact on such kids. We hardly go out, since the days are packed with schooling, intervention classes, special exercises, so on and so forth. There is special ‘social’ classess during the weekends; since my son has problem in peer-level social interaction. All of these have to be consistent and continuous, since the special kids have a tendency to regress if the intervention is withdrawn. Also, what is taken granted for most, isn’t for us. For us successes are not defined by if my son passes in his test in his class; instead, our moment of greatest triumph is when he can physically sit through the whole test. We don’t have yardsticks like normal parents; that their kids win prizes in school competition; our greatest sense of accomplishment is when he actually stood on the stage for two full minutes during the school annual function. Our life with our son is defined not by days, months and events. It is actually every minute. Specifically those two minutes, in an island of repetitive sameness.

What does it make of us and our own lives? We are constantly talking about his life after we go. Even our financial planning is around that – that would give him some security and support post-us. There is hardly any time for us; we don’t have much social interaction, for lack of time; and for lack of mindshare for anything else. It is very tough to go to a friend’s house and continue to worry about how my son would react; even if he does not throw a tantrum, would he beat the last record of 3 minute of interaction with the kids there, before he withdraws himself to a corner? And how long would it take for our friends, feeling an obligation to fulfill a social norm, to ask their kids to involve my son, when those kids have no clue to how to integrate my son and want to go ahead with their own chores? All these are challenges, so we tend to withdraw. So much so, that I wonder if we have lost our own social skills. There is a fortune cookie that reads, ‘insanity is hereditary, and you get it from your kids’. I believe this is true for us, special parents.

It is not all bad. My son has some amazing skills. At age of three, he named about 50 countries in the map and could recite the alphabets backwards; he could sing about 12 minutes of Kanda Sashti kavasam at the age of 4. He has an amazing memory and correlation capabilities. His IQ borders on the gifted. One day, when queried, he simply closed his eyes and counted the spokes in the chakra of the India flag, correctly. He definitely has some outstanding skills; we are just not sure how they could be applied in the normal world.

Yes, definitely, it is not all that bad. I also sense, that beneath his exterior, my son understands that he is different; more importantly he understands that we, his parents love him and are trying hard to do something for him. Several weeks ago, one night, my wife was still in the kitchen cleaning up. I was with my son, trying to get him to sleep. In one of his moments of normalcy and clarity, he snuggled up to me, hugged me tightly and without any prompt, says, “appa, I love you … please help me;” Tears welled up in my eyes and I heard the famous MS Song, “kurai ondrum illai, marai moorthy kanna” in my head. That transient minute of normalcy, to me, made that day NOT a ground-hog day.

With great hope and prayer, I look at my sleeping son; perhaps he will have another such moment of normalcy today; one more such moment tomorrow and perhaps one more the day-after and two more next week and several more in the coming months. Perhaps, we will all get out of the ‘Ground-hog day Syndrome’ and will have a happy ending like in that movie. The hope is always alive.