Questions, questions...

As I had mentioned in the previous post on how he has lucidity when he is engaged and not anxious - here are some of the questions he has asked us.......

1. Before mixer and grinder what  did people use ?

2. Before electricity was there how were the dosai made ?

3. Why factory smoke comes?

4. Why does his teacher ask DS, in recycle factory to stay close to him (the teacher) always?

5. Why if someone comes to SSA they will have a car?

6. Why poor people also go to foreign countries?

7. why earlier transportation was slow, now it is fast - what makes is faster and faster?

8. Why population gets more?

9. Why family gets bigger and bigger?

10. why we cant give up one person for another person?

Blind Rage.

I just read this yesterday. DS is almost 17 and has once-in-a-while "rage" issues - typically he tends to show his anger on himself and bites his arm.

http://www.myaspergerschild.com/2013/10/blind-rage-in-children-on-autism.html

I thought the article was good and thought provoking and provides some ideas. I read the article aloud to my son/wife and we discussed on how he could identify the "beginnings of his rage" and what is that we could do. He shared that when he is melting-down, we not answering his (repetitive) questions and remaining silent really angers him. 

And we were thinking answering will exacerbate the situation!

Big Boy, big thoughts !

When we go to wholesale store (Costco), we buy quite a bit of stuff. It fits into two large bags (about 15-20 pounds of stuff) and 2 small bags (5lbs each) and then miscellaneous jars. Usually I carry two large bags in either of my arm from car park to home and DS and DM carry smaller ones (and milk cartons). Yesterday, I had a right shoulder pain and DM forgot the smaller bags to the store. So we had to fill the stuff in three large bags. On coming home, DS insisted that I carry only one (in my left hand) and he'd carry two large bags. I was not certain and told him that I can come back again or he can come back again. But he insisted that I should not carry and he carried two large bags in either of his hands and walked up the stairs too. Quite a feat ! :-) Made me proud !

In his lucid situations, like carrying the bags yesterday, and when he and I go for a walk, he is just too normal! He related how he got "punished" yesterday at school and didn't go to the outing with rest of the class (forget the reason for now). But he shared with me that instead of sitting in the class, he was open and went out to the school quad and there he got to meet his friends and talk with them. And how his friend shared that he is going to be 18 etc. DS said, because he was open in spite of bad thing (that he couldn't go with rest of the class for a community outing) that happened, he saw more good things happening. I told him about the 'when a door closes another opens'. 

We feel that he is going through some severe thought process. There are highs and there are lows. Lows are tough, but I somehow feel, through this stage he will come out better on the other side of deal. We also decided to talk to an expert  once a month, just to bounce off ideas; costs us money, but I think its worth it.

Using Movies for teachable moments (or teachable hours !)

(As written by DM

From an email she wrote to another mother on how she uses movies to help DS).

DS too was and is interested in Tamil movies.

In 2008 DS was hardly interested in anything only movies and cars (Indian). So I decided to use movies as a medium for learning. He would not understand anything. I tell him the story before hand, give the central story. I was not sure how much he understood. He used to dream while watching, only enjoy the stunts and car crashes. Two years back we have watched a movie everyday during summer holidays, some movies again and for him to comprehend better, which will be at the end of the day after he finishes his daily plan.

These are other things I worked on
1. Feelings
2 .Predicting what will happen
3. Teach  new terms as we encounter
4. Read the review of the movie before watching
5. Ask him the central story
6. Tell which parts he liked and did not like and why
7. Connect some incidents to our life as well while reading. Highlight how son shares things to his parents, I choose the movie I want to talk something about.
8. Now we watch movies, I ask him to choose by reading reviews and check with me. Which he does. He doesn't understand the review but he look at the picture or some words and learning to figure out if it is a good movie or if he will enjoy.

After five years I would say he comprehends the movie better.  I consider the following incidents to be highlights which happened recently.
1. He watched the Hindi movie "Black". He told it is similar to his life - the girl has challenges but tries hard to overcome those.
2. Watched a song video where a boy fights for his girl friend, pictured as a battle. DS told the boy is fighting all the obstacles that comes in the way of his goal. I too wanted to fight my obstacles. This is only realization right now, which I hope we will find ways to put it to practice.

Small Mercies - Photospos Free !

DS had a dream, not like Martin Luther King's but nevertheless something that made him extremely happy and excited. When he shared that with us, he was so delighted that we could see his eyes sparkling and twinkling !

The dream was this: He had dreamt that when he was an adult, he was doing the job of technology repairman - where he is fixing computers, printers, TVs etc. And he was driving his favourite Maruti Esteem car to the houses where he goes for his repair-calls. He added, that he will be first ever repairman who will be driving a car to his work !!

In any case, of late, he has also been saying he wants to do GED... we subtly motivate him that GED kind of education will be helpful for him to achieve his dreams, and it isn't going to be easy to do GED... In any case, as another motivation took, I downloaded a picture of Esteem from the net and super imposed his picture, with a sign of his future company in the car ! We hope this would continue to motivate him; we printed a wallet size photo of this, laminated it for him to keep in his wallet !

Thanks to Photopos application - http://www.photopos.com ; its a free app that helps us to play around with the photos; and in this case, extremely helpful !! The app itself is comparable to Photoshop that we pay big bucks for !

Above is (identity blurred :-)) picture that the app helped me create after merging two separate photos !

Organization...

One of the things that we are wondering that would help kids such as DS is "organization" :-) Let me explain - when there is a constant flow of information, their senses tend to get overwhelmed that it shuts down. For us, in a busy/stressful situation, we tend to organize and structure the situation/environment so that we can manage it. Also, even in a normal situation, when we have information coming at us, I believe, we tend to structure/slot/organize the data so that we make it easy to recall or even understand.

For example, if someone talks to me about how decisions are made my the Japanese PM after discussion at Diet, I can relate it to being a gathering of decision makers rather than to food - it is so, since I'm exposed to Indian parliament model. Also, I make some educated guess about Diet now. I dont really need to read about Diet immediately and I dont feel anymore that lack of knowledge of the word "Diet" to be stressful.

So this summer, we are looking to work with DS on some small micro-exercises.

The intent here is to train the brain to think so. So we are looking at a 5-10min  three step micro-exercises that we would work with DS.

The Step-1 is to get the brain-trained on a very physical thing that he can touch, see and can really relate to. So, for example we will take something like a table and see how is it structured. Just talk about why it is that way - why four legs, why not three legs, why flat top etc etc. At Step-1, my supposition is that his brain is tuned to see a structure/organization in something.

As step-2, we give him something physical and ask him to assemble or organize. Takes about 2-3 minute; Ask him why he organized that in the way he did and why not some other way. He typically responds to with his past experience of what he has seen or done or heard. The intent of step-2 is to take the training in step-1 that is still fresh in his mind and apply that thought process to the problem at hand. The brain is at organize mode now.

As Step-3, we want to give him an abstract data; and follow-up with some question. For example, I gave him "Obama is the president of US and lives in the White-house". The key-indices are President, US, White-house. So, my question is what does he recall when he heard that - i prompted him similarities - US with India, Obama with Pranab M, White-house with Rashtrapati Bhavan...

We are hoping with this training, based on organization/structure,  he would be able to convert data into information and then into insight. An example would be - if we tell him
Data = that tomorrow's going to be 95'F
Information = he should get that it will very hot
Insight = and that he will wear cotton clothes and  hydrate himself...

Not an easy exercise, but we hope to try this out this summer !

ps: Btw, when we go to shops or malls or restaurants, we ask him to tell us how those are organized and why so? When we went to a Indian groceries, he told us how the store was organized - the snacks on the front right, two stacks of shelf with spices, grains and condiments and the vegetables in the back and the freezer along the walls. When I asked him why not mix then, he said it would be tough to find things if the "categories" are mixed. Then I asked him, why not freezer in the middle of the shop, he said then they would need to run the wires down to the center and that would not be easy.

Loss of a friend... sad, but...

DS had a very good friend (lets call him Vish). Apparently, at school, they eat lunch together and go on walks together etc etc. However, recently, he got into a problem with him - apparently, when they were running together he bumped into him and his friend was hurt; got angry, words escalated and the friend stopped being a friend. DS was devastated - for two days he just couldn't sleep and at school, he was fighting back tears all the time; he sought permission from his teachers, stepped out of the class room and called us a couple of times, sometimes telling us bravely that he was fine. We can really feel how he was hurting and how much struggle he was going through - he said earlier I saw him so many times now, I cannot see him.. We were really sad ourselves as to why God chooses certain path... but...

The kicker is this - it was a pretend friend. And DS knew it is an imaginary friend and he is not real. In fact, he didn't talk about his predicament with anyone else (teachers, his class friends) except us (parents). So he is very well aware that friend was a pretend one. We thought of many ideas to explain, but just hit upon one. About an year ago, he had a real friend in school (lets call him George). They were pretty close, but then George started telling DS to get rid of his other friends that DS didn't like. So he stopped being friends with George. We used that to tell DS that sub-consciously he also let Vish have his space so that Vish can go make other friends...And that Vish may have gone to India to meet his family and friends and he should be back at a later date. That seemed to click with him and he settled a lot...We now are past that "date of return" and DS still seems ok.

However, we suddenly see a upsurge in his social behaviour; and he wanting to connect back to real people. When talked to couple of specialist, they believe, developmentally he could be at that phase, where he really wants to make friends and is realizing that is far more rewarding to have friends. He has become socially "present" in a group and very consciously making effort to reach out and engage in a conversation.

A few examples in the past month:

• My cousin and his family were visiting us - during the dinner (last day before they left), on his own, he invited them to a function we are going to have in August; and expressing it was pleasure them all visiting, asking to keep in touch via skype.
• He genuinely seemed interested in following French open tennis - not just watching without engaged, but really following the scores on the net and figuring out who is winning and who is losing (His favourite players are Federer and Nadal. He believed that knowing the scores would help him have a conversation with a friend of his (a tennis fan) in the field of his (friend's) interest.
• In his teach social class, there was a new student from Philippines - who had baked some cookies; DS had tasted it. However, on his return, without telling us, he had mailed his "session-mate" complimenting on the taste of the cookies and how he enjoyed those and thanking him. 

And much more in the past month... We really hope this is another inflection point in his growth and hopefully it continues through the summer and during our upcoming India visit too. To us (particularly me, DF) this is yet another reiteration of what I've realized before - Every challenge is an opportunity provided my Him that our simple minds are yet to fathom !!!

Thank God !

Aware ?

In managing learning and development at work, I (DD) used to talk about a model with my teams. How we start from "we do not know what we do not know" to 'how we dont realize that we know and do something like a finely tuned machine".

The four stages of development were:

1. Subconscious incompetence (I do not know what I do not know)
2. to Conscious incompetence (I now know what I dont know)
3. to conscious competence (I need to be aware of what I'm doing so that I can do right)
4. to subconscious competence (I just do it, muscle-memory and competence has taken over - just like riding a cycle)

I then applied this to DS's learning and this is where I got to - the labels were simple enough for him to understand and relate to.

1. Subconscious incompetence equates to his core deficits due to his condition - Challenge
2. Conscious incompetence - he develops self awareness about some of his limitations - Awareness
3. Conscious competence - he starts regulating some of his reactions, responses and emotion - Regulation
4. Subconcious competence - he has internalized it and certain things dont faze him any more - Habit

I drew this on his white-board and explained it to him with examples:

In certain cases, he is hovering between 2 and 3.  He is now communicating to us how he has made a lot of r wrong associations when he was young - for example, if he had a bad experience he used to associate that with some other visible symbol - his DM's dress etc; and then he'd start hating that; any references to that visible symbol would bring a bad reaction from him. A few days ago, he went from awareness to regulation. When he was at work (job-training), he said some memory was really bothering him; but since he was at work, he "pushed that memory out" so that he could be professional at work and didn't let that memory affect his work.

It was quite a good progress for us, when he was relating an past experience (through his stories), he used the verbiage in the model - how it was a challenge and how he is aware of it and that behaviour is slowly becoming an habit for him !!!

We need to continue to reiterate this framework to him !

Ideas at the intersection of white space !

Here is a new one from DS.

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

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

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

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

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

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

Here is his list that he came up with:

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

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