Our Intentions for DS

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 !

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...

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...

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...

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...

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.

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 !

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)

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...

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...

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 !

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 Thinking 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

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 !!!

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:
  1. 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
  2. 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
  3. 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
  4. 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 3rd 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...

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 !

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:
  1. 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
  2. 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
  3. 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...

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!

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 !!
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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.

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

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 !!

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 ?

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...

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 !

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 !

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...

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...