About a special and Dear Son, who is on the PDD spectrum. As seen by his father (mostly chronicled here) and by his mother. [If you find this useful, please leave a comment or what you'd like to see]
Owned !!!!!
As he was works DS out, the master typically takes a micro-break or three, to explain or let us know his approach and why he is doing a specific exercise. Once during such micro-breaks, he was talking to us, explaining about a specific kind of massage that helps anxiety or hyper-activity in these kids. The massage was to roll a small squeeze-ball (soft ball) between the DS's back with our flat palms. He demonstrated it, by rolling the ball on DS's back. Our conversation continued. He then said it helps the kids settle, calm down and sleep better. We responded saying, "touch wood, thats one thing we didn't have to worry about DS since his kid-days, since he was always a good sleeper". blah, blah...
As we were talking, DS who probably was tired due to the exercises, lay down on the exercise mat. We noticed that, stopped our discussion and asked him - "hey, what are you doing ?"
DS responded, "I'm just showing it works !!"...
O W N E D !!!!!
To sweat or not to sweat
Sunday morning, DS rushed to kitchen told his sweater is dirty; requested me to wash it today so he could wear it for School. I washed and kept it ready. Monday DS was getting ready for school wore the sweater and felt it was tight. DS was very disappointed and upset. DS liked the sweater very much and doesn't like to change what he has been doing for many months. That too it was a sweater that his dad used to wear.
DS now have to regulate his emotions, find what to wear; his emotions should not come in the way of him getting ready which sometimes is a challenge for him. DS came with ideas, that he will wear the jacket which he used to wear to other places, he was not happy as those jackets were old. DS did ask me what he can wear to keep himself warm. I asked him to wear the other old sweater and wear a jacket on top. He wasn't very happy. I was wondering if he will miss the bus, if we will find another sweater/jacket to wear, will his emotion affect his eating and many other thoughts came to me. As these thoughts coming to me, I was getting irritated, realized that my thoughts and feelings is not going to help DS. I decided I should not let my emotions come in the way, tried my best to be calm, though I could feel few times getting annoyed, managed not to show it to DS and help him to solve this problem and let him feel good about it as DS is very much aware big reactions are unexpected for small problems.
DS was asking if the sweater shrinked because we washed it, or he is outgrown it. DS upset saw me making dosas rolled with cauliflower curry; he wanted dosas without cauliflower, wanted podi. When I told I made cauliflower as you complained of stomach upset, DS said, OK I will have dosas with Sambar. I had some sambar in the fridge, which I heated. DS said he would like to have cauliflower curry. I know all these back forth talking about what he wants to have with dosa is because he was upset about the sweater. I just reflected his feelings that he is upset as the sweater is tight. I told let me stretch it and iron it. DS was very happy and relieved, hoping the sweater would fit. DS started having his dosas, I appreciated DS as his eating not getting affected because he is upset, also coming with good ideas of what to wear. I told this is the way to solve a problem, we try one way if it does not work, we have to come with another one, till we find a way which works. Once I finished ironing he wanted to try the sweater out immediatly and then eat. I encouraged him to eat fast and then try. It was a double sided sweater. DS said he will try both sides and see, again he was coming with what he can do. He tried both the sides, till felt it was tight. He wanted me to come with some ideas.
I told if you can manage bit uneasiness today, you will feel comfortable tomorrow. I asked him to wear one sweatshirt and jacket, he was still not happy, asking me give him more options. I was getting annoyed, but calmly told I am thinking about it. You too can also think what to wear. After a while DS said he can wear a sleeveless jacket and a full jacket. I was soooo happy that he found what he can wear, I could feel he was happy to have solved the problem. This experience ended with a positive note for DS that he can solve the problem and feel good. It was a learning experience for me not to get carried away with my emotions/thoughts but to stay calm and be AT-EASE. We should now label it the "sweater problem" to use it as an example for other similar issues.
The Emerging Future, Imagined...
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 !!!
Micro Processes and making connections to macro.
Summer 2012 (a late post though) !
- We decided to start each day with something new or fresh, and revise what we have done previously, so information overload is less.
- Guiding DS to wonder, with all the wonder questions, when, where, who, which, what, etc., resulting in understanding the underlying things. The same principle for life situations, movies, reading
- Breaking a concept to many simple things, explaining each, relating to some experience what DS knows or
- Be aware of DS emotions, when overwhelmed guiding him to take a break. DS initially did not want to take break as he thought time out or break is a punishment, DS understands the purpose of time out to calm ourselves so we get back on
- Guiding him to do a work at lower level, when he finds the higher level difficult, which gives DS self-confidence.
- Exploring – trying different ways to finish, like train model, figuring how to play a new game, shopping, finding a place using maps
- Independent – During summer school, guiding him to make his own breakfast, lunch etc, plan his time, calendar and follow
- Responsible – Encouraging him to take initiative, to do any family work in daily routine on his
- His Physical activity with Master Jay gone to next level, which is getting more challenging, which is similar to going to next grade.
- DS is now getting, it takes more time to understand certain things, but he is more aware that the time taken these days is getting less!!! DS is motivated to learn and try his best.
Tipping point, 7 years thence ...
...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 !
Ecosystem Engineering...
The thing we are asking the extended ecosystem :-) to focus on is to share their emotional experiences in their life (or as they remember me - DD) as they grew up, apart from giving him some simple academic, but real life problems.
My dad has gotten onto a nice cadence with DS - sending him mail once a week - it has been a wildly successful experiment. DS actually spends time with his mail now - opens a sheet of paper, makes key points from my dad's email and responds to that. My dad's email loosely has three parts, apart from the current status of his life - the sections being (1) sharing his life experience (2) asking an unknown question, so that DS needs to use google or otherwise to find answer and (3) giving him a simple math problem...
Here is one such example of the email:
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3. Since you are fond of strawberry I will give a sum on that: You go to a shop to buy some strawberries and shopkeeper tells you that the price of one packet is. 8.50 dollars. Being satisfied with the price you bought 5 packets for which you have given a 50 dollar note. He was impressed by you and gave a discount and paid back one 10 dollar back. How much profit you had made. ?
DS's jokes - compilation !
- Changing the rhyme "To market to market:" to "one market, Two market" (very young age of 3 or 4)
- Appa kalla grass irrukuthu - Dad has grass in his legs (aged ~5)
- Mom teaching, Wild animals will be in forest and zoo it will bite. DS said: Mosquito is a wild animal.
- Dad: If you tell samething daily we will get bored. DS: Appa is going to same office.
- DS cousins: Do you like Amma or chicken? DS: (Diplomatically) Amma makes chicken.
- Changing his cousins name "Aishwarya" to "Aish-varadhu" in our language (meaning Aish wont come)
- While DS taking bath mom saying, "Rub your legs and hands nicley" - DS laughing "I dont have an eraser here".
- At school, while playing a teacher asked, "How are you?" DS responded, "Better than you" - dont know what he was really thinking !
- Changing the song "O Sona O Sona" to "A Sona, A Sona"
- VadaPalani – Morphed to dosa palani
- Egmore station – Morphed to Egg-"less" station
- Mom: Do you want this MTR pickle, DS: "Give me fullR pickle."
- What is the difference between butter and butterfly? DS: "butter"
- Who is the president? "Not me"
- Dad switches the GPS off, in the car; then DS says"I am the GPS and giving directions" and imitates GPS
- Mom explaining who a Don is, what he does etc. DS asks, "Do you like don?" Mom: "No"; DS says, "then you should like dusk."
- DS has his favorite teddy bear, names him Bapu. Dad also calls DS Bapu, at times. Once when Dad called Bapu....DS brought his bear and gives it to dad, saying "take, you asked for Bapu", with all smiles.
- Making fun of his teachers name Mr.Wan(g) – Mr.Truck
- Mom talking about helicopters, DS talking about the number of blades in it. DS asking "Will there be an helicopter without blades." Mom thinks; DS says, "A toy broken helicopter!!!"
- In our friends house there were two side tables, small cube & a medium sized cuboid, DS was curious asked what it is? Our friend explaining about the medium side table, there is a place to keep small stuff like remotes etc., DS asking about the small one, she said "It is solid." DS asking, "Do you call this liquid?"
- As Ds was going to school, it was drizzling, dad said, "Once you go to school, you run fast to your class, so you don't get wet." Evening when DS came back dad asked,"Did you get wet before going to your class?" DS, "only 1%, but one day I got wet 100%" Dad little worried asked "when was that?" DS,"while taking shower."
- We wanted to go to our friends place, DS did not want to come, so saying,"I can't come, I have a meeting with my friend."
- "Appa-Amma have cereals in mornings, thatha-patti watches serials at night"
- When DS and his friend playing he purposely left 8 while counting. When she asked, "Where is 8?" He said, "It is gone on a leave."
- Ammavasai – pattivasai (Ammavasai in Tamil is new-moons day; its also a play on the word Amma (meaning mother) - DS changes it to Patti, meaning Grandmom)
Dream Come True (Learning)
One day DS came from school very excited, handing me some brochures and stating, "I get to go in a stretch limo, if I do this". It was a school program for school children to recruit subscribers for magazines; who gets the most, gets to go by stretch Limo for school dance. DS wasn't quiet sure about what needs to be done, but he was filled with enthusiasm and very optimistic that he will sell more so he could enjoy the experience of going in stretch Limo. This is quiet unusual of DS, first sharing about something that happened in school and secondly showing a great motivation!!!
At that time (about 2 years ago), I was very thrilled we have a good external motivator as DS was resisting to learn anything new, we came with an plan of learning to do 16 (his favorite number) new different things; and named it Stretch Limo Project, wrote the list in the white board (9th Jan 2010). DS was very excited at the idea and was eagerly looking forward to go in Stretch Limo. I thought he would learn the 16 things which will create a bank of successful learning memories for him. We planned, we would start learning from the list during weekends. After initial few weeks,there was resistance and avoidance. It dawned on me that DS is not feeling competent to learn as there were many gaps in his learning process and also negative memories associated with learning, as a result he is shutting down, just finishing that is minimally required or just plain avoidance.
- ability to accept novelty/new
- ability to tolerate uncertainty
- replace old negative memories associated to new positive memories
- Encourage DS to ask for help if he doesn't know. It is ok, if DS doesn't know - it can be learned; but it is also a process which takes time. Somethings can be learnt quickly, something takes hours to days.
- Let him observe, show and share how we learn when we don't know: Experience of looking for unknown things at Fry's, Best Buy - they were good places to role model.
- Give DS easy work (which he has learnt) Vs New.
- Ask DS to rate how he felt his learning experience from 10-difficult to 10-easy. Every experience starts as 10-difficult, over a period of time becomes 10-easy.
- It is ok to make mistakes, which are part of learning - Share about the mistakes we and others make.
- Make guesses without worrying if the answer is right or wrong.
- Trying again and again, same and different ways.
- Positive learning attitude for learning giving our best; not just finishing.
- Change his ingrained thoughts to positive ones. DS thinks he is not good if he makes mistakes or doesn't know.
One week we decided to work only on Limo Project, which made him realise that if he does everyday, more than one, he could learn faster. During last summer holidays (in 2011), DS decided to work on two things everyday, so he could finish all the 16 which he did (20th Aug 2011). However, unfortunately, we could not hire the limo soon after for variety of reasons - school, non-availability, time-change etc.
So this year, as DS enjoys when the weather is warm, we planned to hire a stretch-limo during Spring break. With DD's niece/her husband, we set up an elaborate plan, saying that we were all going out in their car, that was parked in the visitor's parking. Getting to their car, we just walked past the limo !
As we did that, DD surprised DS by revealing we are going in streach limo. A great suprise for DS, and his dream has come true. The Stretch limo project has created a postive learning experience, which I feel is our foundation for future learning.
A Precious Birth Day Gift
_____________________________________________
One evening, when DD was out, we decided to go to a nearby Target store. However, we needed to take care of something; DD has a habit of asking DS about his day before calling it a night. We decided that we will tell DD we are going across to the shop to get roll of quarters, which is something we frequently do, for our bus-fares.
Once that was set, DS told me, that he would like to buy a shirt for DD. He checked with me the size. At the store, DS went to the Men's shirt section; and then it was a revelation to me, how much he engaged and present he was. He shared that DD prefers half sleeves to full sleeves; so the first target was half-sleeves. Browsing, DS saw some T-Shirts and commented that his dad has many similar shirts, so ruled that out. Next step was, the half sleeves shirt place, checked the size of each shirt indulging in self-talk ("Dad doesn't like this color much,, he already has a shirt in this color, etc etc"). And finally chose one shirt.
I told DS it is my turn to buy the gift from sport section, as we walked through the aisle; again, DS was very engaged as we walked past shelves of sports equipment - he observed and connected sporting likes of DD: shared DD doesn't play basket ball, DD already has weights and proposed that we buy tennis balls. I counter proposed that we buy from Golf section as DD started playing Golf recently; and finally settled on some Golf stuff.
It was very heart warming to see DS engaged in the whole process of getting a shirt for DD; and also very engaged in the process of me choosing a gift. Thinking about DD and his likes/preferences, the whole time was so amazing and would be a cherished memory ! To top it all, that night during his prayers DS was thankful for going to get roll of quarters at a different store ! :-). He was savvy enough not to give out what he present he got, in spite of his dad asking him (and wondering aloud) what his birthday gift might be.
I'm so awe-struck with DS's choice of shirt and how he came to it - how much engaged and present he was and his thoughtful-ness ! I've been wearing the shirt two-days in a row :-) Will post the picture sometime!
Leveraging the Ecosystem...
Now-a-days, no one needs to sit with DS - every saturday, he logs on to his gmail account and starts responding to emails.
Now that he was on auto-pilot on this, we had asked my (DD) dad, 6-8m ago, to ask him some math questions, in a way, that it is not overwhelming to DS; but position it as something my dad learned when he was the same age and had trouble learning it. Thus, a little by little, DS had graduated to solving progression etc. Last week, he had solved, 3, 5, 8, ___, 17, 23 progression !! (Yay!!!)
So we decided, it is time to up it, a bit. So we asked my dad to ask DS another question (#2) apart from the Math Q (#1). The math question would be the routine, but the second question would be some fact-finding. The intent of asking the question is NOT for him to find the answer. But discover the process of finding the answer. To get my dad to understand, here are the samples that we provided my dad with:
- DS asks us (or)
- he asks his teacher at school (or)
- he googles
- ...
- he can ask me (or)
- he can google (or)
- he will figure out just like cars sites (that he loves to go and visit), there are cricket sites too...
The first installment of questions have come through to his mailbox. We'll know how DS handles it soon !
Motivation...
Once he is back from school, post his customary break, he has been on-task - he and his DM do functional math (currency, percentages etc) and then simulate it by acting a shopping scene. He also has shown a great amount of interest in doing an online reading program ("raz-reading") that his class-teacher has suggested. He seemed to be looking forward to it and ensure that he does that at least once a day. He is also showing quite a bit interest in reading a story books - like a mini-novel - called "The Ravens Mystery Series". So much so, that DW has placed order for a set of such books !! He is also on task for the physical exercise with his Master; and ensures that he voluntarily asks me to join him for 15min of exercise on days when Master doesn't come home for the training...
So, not sure, if he is becoming a bit more aware and self-regulated of what he he needs to do, but this is a welcome change for us. The place where he seems to have shown some regression is ability to be in the group at Teach Social. He seems a bit restless and indulges some minor inappropriate actions - like laughter...
I wonder if it is to do with the change in diet !
Making of a cheese cake...
Type of Questions...
...similarly questions are the same for him.
A few days ago, I had asked him a question as to why he likes Indian cars more than US cars. That put him in a spin. He started talking through his thinking and was not really clear why I had asked him that question. Did I mean that he should not like Indian cars ? Did I mean that he should know more about US cars ?
We actually discussed through that like part of it - what could be the reason; he had spent more parts of his life in India ? There were new cars every year in India and he could incrementally learn ? Always the first like is a lasting like ? etc etc...
But to us, it gave us a model... There are three types of questions:
- Learning Questions - the questions people ask him, when they do not know something. Like when he is asked directions
- Thought Questions - the questions people ask him, when they want to get his opinion or his reasoning - things that make him think about the topic or himself. There are no right and wrong, but its very subjective
- Test Questions - the questions people ask him, when they want to know what he knows.
Non-Expression is not same as non-emotion !
2011: DS' Summer of Content & Contentment !
- We worked on the comprehension. We have a guide who comes home for 2hrs/week and works on stories with him. Try to structure his imagination to a cogent set of thoughts. Some of the key words we have used are: "What is the central idea" ? "Central theme" ? "What is peripheral ?" etc.
- We worked on "structured Chaos" - Take an unknown situation, like assembling railway-model and then "try" it. The key-words we used were: "Lets try", "Lets make a guess, even if it is wrong", "lets take 3 guesses"
- Focus on the "effort" and not "result". I believe this has resonated with DS. Basically, in any thing, we want him to try; and we rated him on his "effort" in the scale of 1 to 10; and not made a big deal of result. So, when he does something, we used to say, "your effort today was "10", and the result was "7", but when you did the same thing a week ago, your effort was "10", but result was only "3". The intent being, if he puts in an honest effort, the results would improve. I think he has understood this.
- We focused on physical activity (with a physical trainer - Master Jay - see the link here - the write-up on the last para); Master Jay comes home and trains with DS twice a week - not just physical exercise that helps him in his posture, but also inter-hemispheric integration and proprioceptive awareness. We believe it has helped DS stay with a conversation, make him more perseverant and be present to the situation. Needless to say, when I work with him on rest of the days, I always have used the 'effort' and 'result' grading !
- We worked on his independence - ability to plan his time, calendar and finish per calendar. This is in rudimentary stage :-).
Self Regulation in distress situation...
How to extend the motivation ?
We would love to find some "magic" on the motivation part. When he likes something, he goes all the way - not just with the cars (surprise !), but also his learning comes through clearly, in areas when he wants to apply. For example, he doesn't like math very much - my view is that, that is because, in math one is either right or wrong; and he doesn't like being wrong. So learning math is always stressful for him; he wants to check-mark it and finish whatever is in front of him in the paper. Thats the background.
His mother has instituted a process with him, where he earns money and spends money. The way he earns money is by doing things faster than the assigned time. So, if he has 20 minutes to do something, he finishes it in 15, he is 5m early - this will earn twice that - so he earns 10c. He uses this money to spend on what he likes - watching movies, taking breaks, chicken etc.
Few days ago, he was short on cash; he owed his mother some 18c, by end of the day. So, before he went to bed, he declared that he would do one of his chores in 14minutes (which has the allocated time of 20min) and will get the another chore done in 7 minutes (assigned time of 10min). That does take care of the 20c he owed. I was really surprised that he worked this out mentally - the equation I saw was 18 = (12 = [20-14] x 2) + (6 = [10 - 7] x 2)... This has mental addition, multiplication and subtraction...
So where does this motivation come from ? How do we leverage this ? Ideas ?
Anti biotics
We went back and checked our notes (thanks to DW, who diligently keeps diary of each and every day of his food habits, his behaviour etc for the past several years), and we found similar impact/benefit earlier too.
Talked to the doctor here and he said he has heard similar stories from other parents.
Of course, during illness he is also on a very strict GFCFSF (sugar-free) diet, since he just eats Rice-dosa and rasam-rice... (but because of his dehydration, we did give him salt+sugar water).
Wonder if there is a connection between AB and being in the moment !
The Change
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..
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!!!
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.

