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 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...

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...

Turn the tables !

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 !

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 ?

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

1. 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)
2. 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.
3. 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...

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...

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

Jokes on you...

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

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...
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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 !!!

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