Wishing you all a perfect 2020s !

We have been absent from this blog, not writing as much as we should have. The usual litany of excuses hold - busy, fatigue, daily lives, struggles, successes and just lack of will. However, hopefully, we are able to restart this again and hopefully  continue to chrnoicle the journey.

As I look back on the decades of 10s, I can only wish the decade of 20s will be as kind to me/us at the 10s were. 2010s is where we went through the tough road arriving at a very good destination in our lives. We settled;  thankfully got through the really tough times in early 2010s and settled – settled in the new culture, new jobs, new macro routines and new home. It was not (it still isn’t without) conflicts within our minds – there are times, when we feel we are where we shouldn’t be; and we aren’t where we should be, but, the guiding north star has always been one goal. And the 2010s were kind to us towards that goal - that is DS's independent living - We believe now, we are in the vicinity of the goal; and I don’t have any doubt in my mind, that the goal is still afar and the difficulty multiplies as we get closer and closer. And all of us, particularly both of us, have to be in best health and wellness to be able to get there. 

2010s is the decade that we will remember where DS got through the school program, part of post-secondary, got selected to the Project Search a year ahead, for an intense one year training, at the end of which he had motivation/inspiration to look for a job in craiglist, find one, apply for one, go to the interview (with the support of a coach), get the job, but could not join due to procedural gaps. Eventually, it turned out to be good, since he now works in Google cafeteria part-time, but continues to learn through the strugges to be independent. We are cautiously optimistic, but still a long way to go 

As we get into 2020s, our guiding star still remains – hopefully, we continue on our true north; we are going to be more deeply and intensely conflicted, with priorities, doubts and what is right and wrong. I just pray/hope that we continue to have that invisible hand that gently prods us to walk towards true north.

Wish you all a great 2020 and wonderful decade of 2020 !

How do you explain unrelated grief ?

Recently, there was a tragedy in the cricket world; As with every Indian male, DD is also a cricket lover, whose once claim to fame has been associated with Cricinfo in its early days.

The death of the Australian cricketer Phil Hughes has left an unfathomable lien of grief in me (DD). For some reason, I believed that the death has transcended culture, country and people. I really dont know if it is due to the fact that PH died so young (25), or that the game that gave us so much joy for me personally in my life, could be so cruel and if the game is a villain of the whole piece or the fact that something that is so innocuous (a normal bouncer) could create such a tragedy, just due to the fact that perfect storm of several unlikely events co-occurred...

In any case, as a part of overcoming the grief and to be able to express the grief, I also took part in the #putoutyourbats with the cricket bat outside the home.

DS wanted to know what this meant and why are we doing this. I had to explain that grief comes in many ways and this is something that isn't logical. My wife started explaining with a past experience that DS went through a long time ago. When we were at a fast-food restaurant, there was this old man, who was driving a car, but had kind of crash-parked on the lawn of the restaurant and we had paramedics with all sirens blaring treating him. At that time, DS had indicated that he had felt sad for the "thatha" although he wasn't related to us.

That was the parallel we had used to explain what I feel. I'm sure that DS would have a lot more questions, but I hope and am sure that he will understand and also feels sadness and joy in equal measures as he goes through his life.

Conserved !

So we had our first brush with the courts in the US.

As the DS turned 18, we had applied for the limited conservatorship for the kid and had got it secured. It was pretty simple and straight forward process, costed a packet (with lawers :-)), but got it done, as we stood in front of the judge; who ready out the docket # and the case name and said "the court accepts the plaintiff's request"... And we are done !

We still continue to be in charge of our kids finance, medical treatment, his choice of living location et al...

Personally, I had mixed emotion - while one part of me was relieved that we have safeguarded DS' risk and exposure; while the other part explored the what-if scenario - isn't the 18 the time that parent's look forward as their child(ren) step bravely in to the world as independent adults?

Graduations!!!

(Reflections of DM)

DS will be finishing school, in couple of weeks, he will be earning certification of attendance, which does not mean nor has great value in the world right now, but it is great deal of accomplishment for DS and us. As a kid DS, gets very anxious even for the small changes, he used to be upset and have meltdowns for the moon changing it shape every day, flowers wilting, sun not to be seen on cloudy days, trees being cut for widening the roads…All these helped him to understand about phases of moon, life of flower, water cycle etc.,.

When DS is usually in a situations when he is unable to cope/handle/regulate his emotions, makes rules, which gave him a great sense of security, when DS has to face a situation if he has to do against or not follow the rule, DS will be in fight/flight mode, comes with maladaptive practices. For example, DS may not like when we share one of our beans bags to a friend,  he makes a rule in his mind, “I will never use beans bags.” suppressing all his emotions though DS is a pretty verbal. Someday, we may casually say “Let’s sit in bean bag.” the beanbag becomes a big source of anxiety and will trigger a meltdown. We will all be puzzled what is happening and why. DS had built a many walls around him and has shut many things out of his world. We knew DS had difficulty when suddenly something happens he had difficulty in accepting. We were able to get him do few things. Few very good therapist who have worked with DS, tried to help him carry a back pack, took him to a book store, buying gift for him etc., have all mentioned “The day he happily accepts gift with a smile will be his graduation day”; “The day he will buy a book from Barnes and Nobles will be his graduation day.” We went to PACE place, at Oregon, http://www.paceplace.org/, they figured out about DS makes sense of the world and copes by making rules. Their immersion program made DS aware of him making rules, it was yet another journey for us in facilitating DS with rules he made and in overcoming them, over a period of time, DS was able to tell why he made those rules also was able to make connections to the previous rules, who and how we helped him. DS now happily accepts gifts, carries backpack, buys books etc… DS story about his rules http://www.vibgyorchild.blogspot.com/2014/05/rules-that-ruled.html [Middle school graduation]

DS brain is wired to avoid unpleasant situations by making rules, one of the rule, I consider mother of all the rules was made when he was 3, Colorado (not diagnosed), I usually walk to the school, and one day I picked him up in car later we moved back to India and I never drove, when we have to shift to US in 2008, DS condition to move, “Mom should not drive in US because unexpectedly she drove to playschool.” DS has grown up to where I can drive but not with him. The idea/thought of me driving him has becomes the big barrier for him to plan an outing with his friends, to talk when anyone talk about cars/mom driving, shift the house etc. DS is now in awareness stage that this rule is not helping him, makes him feel nervous, anxious and it affects other things. DS finally said, “One day I will eventually get used to mom driving the car with me. Right now I will not let it affect shifting house or my outing with my friends or anyone talking about cars.” There is lot of underlying unresolved emotions associated with the rules, which needs to be released and negative memories to be replaced with positive ones [High School Graduation]

The day I will drive the car with him to all the places happily will be his College Bachelor’s Degree Graduation!!! Mom driving car with DS will be end result, what he learns during the process of reaching the dream will becomes his lessons for life! A dream yet to be and will be conquered!!!

Ideas at the intersection of white space !

Here is a new one from DS.

In high school he needs to take electives - in the 9th grade, he took 3D design, in the 10th std Art-work and currently in the 11th (junior year)  he is doing computer applications. For next year (12th) he did not choose any of these but has opted for "choir singing".

When I asked him why he didn't choose computer applications again, he said that he has already experienced that and he wants to have new experiences. And added the kicker - 'only if I have more experiences, I will have more ideas on what to do"...

Whoever said ideas exist in the white-space between various faculties !!! :-)

{Btw, we ourselves are not sure - should we be ok with him taking Choir-singing or ask him to continue with Computer application; while Computer applications may make him more employable, we are wondering if singing could be his calling - since of late, he has shown interest in learning movies songs and singing along with them... When talking to another friend of mine, he pointed out to a very relevant fact too - thus far the electives has been individual, where as the Choir singing is a team activity - may be there is an internal method to why DS chose singing to other individual stuff... Thoughts ? }

The Future, Imagined (by self !)...

DS is doing a project for the school - he needs to prepare 10 slides on when he grows up, what job would he want...

Here is his list that he came up with:

1. He wants to stuff cotton in a pillow factory (this has been his dream since a kid - i.e., to have a pillow factory, now I think he realizes he cannot be a "manager", so he wants to be "stuffer", because he has done that at home). And of course, he wants to drive cars helping people to go from one place to another.
2. He wants to help old people. He pointed out that,  "I help thatha (his grand-dad), I would like to help old people"
3. He wants to teach kids - on what is right and what is wrong. "I want to teach young kids"
4. "I want to help kids who have no parents. I want to work in the orphanage, where kids dont have parents and help those kids"

Somewhere, he has a great, and importantly kind, heart ! I hope his kindness gets rewarded by the Gods.

The Emerging Future, Imagined...

We had a blog called "The Emerging Future, Imagined...". The intent of the blog was imagine a future for DS and talk to him about that through stories. The character in those stories were Rahul, who is always four years older than DS; and the stories would be out Rahul's experience through life. The intent was to provide a picture to DS about what his life in the future could be.

We started on this about 4-5 years ago, but it kind of fell through, since the stories were hijacked by DS, who used those to recall his experiences. We didn't try to push him back on the Rahul line, since we found that when DS tells stories, he is making connections between disparate set of data and his life experiences and making sense out of it and internalize the learnings.

However... ;-) However, a few weeks ago, in one of our long drives, DS imagined his future and told the story. The character Dev, is a 28 year old young man, who has bought a Maruti Esteem (his dream) and he has gone from the dealership to his parent's house to pick his parents up and they are going to the temple to do the puja for the car.

Oh yes, Dev lives alone on his own and has just asked his parents to look for a girl for him to be a wife !!!

Tipping point, 7 years thence ...

I'm not a big proponent of Father's day or mother's day or day. IMO, its not consistent with our eastern culture, but is very relevant in a western culture, that encourages so much of independence and individuality. In any case, given that we too have become nuclear and removed from joint family, the sentiments of day is becoming more relevant...

...anyways, the above point is orthogonal to what I'm going to write here :-) 7 years ago, I wrote an article - on a whim, i had sent to the newspaper in India, The Hindu. The editor (who has since become a good friend), told me that she will publish it that weekend paper, since it is also father's day weekend. The article was published a day before the father's day.

Through these years, we have made significant progress with DS. One main concern that always stays in back of my mind is if DS would be able to live independent life. That is a constant thing that gnaws at you all the time. But there is a couple of incidents in the past weeks, that I hope is a culmination of all the hard work put in by DW, has the compass pointing true north.

A week ago, we were all going to store to get groceries. As we went out to the car, we heard the music in the air - we realized that it was "concert in the park" day, in the park adjacent to where we stay - during summer, we've 4 weeks of concerts, followed by 4 weeks of movies and end with 4 weeks of play (all weekly once). So we decided to walk to the concert - the DS of old would've felt really uncomfortable about the last minute change; but DS was quite ok - he started asking questions about concert, what it means, and related to the concert he went in middle school; then he asked me if I had been to any concert - I told him I had been to Dire Straits and Pink Floyd concert a long time ago - then came the kicker - he asked me if I had bought the T-Shirt I was wearing at that concert - I was wearing a Pink Floyd T-Shirt; I was quite surprised, that he kept the conversation so contextually relevant and able to connect the dots and have a social conversation. For some unknown reason, at that time, I suddenly felt very very positive that DS can and will possibly lead an independent life.

Then came yesterday - we were all going to a movie in the evening. A movie that DS likes, but in a theater that he hates. But I was not feeling like going to the movie - so asked him if he could change the plan and go for a long drive. He immediately accepted, but then added the icing, by proposing this - "Appa, tomorrrow is father's day - your special day - how about I take you to the movie ? We can go for the drive today and have the movie as a special for you. Also, I'm going to help amma cook your favourite chicken dish; you could have the chicken-leg and I'll just have the small pieces"...

Two  incidents that tells me that he is trending true-north on the awareness, social interactions and also being empathetic ! I dont know, if I'm being right, but on this father' days (2012), seven years since I had asked for pieces of normalcy, we're getting big chunk of those ! I wonder if we have crossed the tipping point !

Non-Expression is not same as non-emotion !

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.

----

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.

How to extend the motivation ?

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 ?

The Change

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.

For the newcomers...

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:

1. 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.
2. 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.
   
3. 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)
4. 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!!)
5. 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 ! :-)
6. 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.
   
7. 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.
8. 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...

Priceless...

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 !!!

Shot through the heart...

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...

Mental Fortitude...

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.

1. 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...
2. 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 ?

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 !

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 !

Telling him...

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

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.

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:

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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

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