Reading and Comprehension

A friend of ours had asked DW re some of what she does with DS on Reading comprehension and if she had tips on those.

Here's her response.

• It is better to start with reading comprehension with simple stories which are direct, doesn't involve tricks, actions/reactions of a character based on their feelings. (Theory of mind skills...intentions/perspectives etc)
• Make use small strips of paper where both (DM/DS) draws the characters, places/objects. sometimes when they find drawing to be difficult they just write the words. As DM reads, DS moves around these papers. for eg..a bird flies up in the sky and sat on branch of the tree... he takes the bird makes flying action....make it go up till the sky, make it sit on the branch of the tree..This kind of worked for DS.
• If the kid is good in drawing, then the parent can read the sentences the kid can draw ..starting with 2-3 sentences per day. These kids have difficulty to make pictures in their mind or imagine as they are reading. This is a concept from Lindamood Bell where they have methods/strategies to make movies in the head as they are reading.
• Comprehension is better when DS reads some passage where he could relate/understand the experience. since he could connect with his own experience. He could understand a book about visit to supermarket than a book about aliens in space.
• DW first tells the story for him to understand and then read the story.
• DS/DW act out the stories and read it again. The character names in the story would be DS's favourite movie characters (Ashok etc from Agni Natchithiram)
  
• Other strategies which we use subconsciously: DW has to explicitly work with him: When they come across a new word..finding the meaning...how it relates or connects to something he already knows or experienced......Some abstract terms, idioms and phrase needs to be worked on separately

Hope this helps...

Keep on Rockin' the free world !

Yesterday DS and I were watching a Tamil movie - "Sachin" - a தயிர் சாதம் uncle movie, that DS likes. In the end of the movie, the heroine professes her love for the hero. Watching that, I asked DS what would he do, if he a girl comes and tells him that she loves him.

DS face lit up and all smiles (with lot of shyness etc) and said that he will feel proud about it. And "I will also love her" :) Then for some reason, he said that a girl in his school tells "hi" to him. I wonder if he likes her. He is the one, who usually doesn't talk about girls and runs away if he bring up the subject. He was all lit-up when he talked about the girl. But he didn't know her name, but she knew his. I told him maybe the next time she says Hi he could introduce himself and ask her for her name and be her friend.

Btw, I also told him that particular girl just might be very friendly - just to make sure that he doesn't take it any other way. She would say hi to a few of his class friends too; and its common for girls and boys to be friends with each other (and gave a lot of examples). My point was to tell him that not every girl who says Hi, are the ones you fall in love with !! :-) Although, I believe for a 9-year old (which is where i think he is emotionally), its perfectly normal to believe so !!! So we had this talk for a while and I was glad he shared that with me instantly in that conversation. It was funny to me (and insightful) that he related the girl saying "hi" to him when I asked him the first question... Probably, its his first crush !

In any case, it brought back some of my own mind-set to the fore. When he first diagnosed, I had this Neil Young's (Rockin' the free world) that seemed apt for DS:

"...
There's one more kid
that will never go to school
Never get to fall in love,
never get to be cool"

Now, with the journey we have come with him (a great deal of credit goes to his DM), maybe, he would just be another average and yet another kid who goes to school, will fall in love and gets to be cool !

Which comes first - Right brain or left brain ?

This has been something on my mind since our last week at Pace Place. The power of right brain (Revolution, inspiration etc etc) versus the left brain (evolution, perspiration etc etc)...

It is quite known that kids in the spectrum have quite a bit of "rules" that governs their day to day life - that kind of shows up as inflexibility and lack of willingness to change and adherence to the sameness. Although DS has made great progress around flexibility over last year; however, there are some few places where he is still inflexible and would not want to change. That stems from a certain of set of rules that he has in his mind. So, we always think these kids are highly logical and analytical and are primarily left brained !

However, there was always an hole in this theory... Because we have seen DS to be highly perceptive; and we have seen that our emotional highs/lows do impact some of DS' thinking and his own moods. Particularly, that of his, DM's. And stepping back, we have found that most of his rules comes from situational incidents that happened at that time.

This was around in our thinking and more so, since we came back from Pace Place. And today morning, something happened that kind of made the light bulb go on for me. DS was typing an email to his grand-parents; and DW was behind him, guiding him. When DS made an error, instead of moving the cursor back to where the error was, he started hitting the back-space, that started erasing all that he had typed. DW who was behind him, seeing him hit back-space, reacted (as is wont with any one), with a bit in higher decibel, that he'd lose all that he had typed. DS who heard it (but wasn't seeing his mom), reacted to the voice (probably, a bit startled at the decibel) with an impromptu "rule" - said he'd start afresh and erased all that he had typed, even beyond the error... Post-that, DW did try and get to the mode in describing the mistake as "small-mistake" (vs medium vs large)... But by that time, DS had "rule" in place...

This actually made me think. In the incident above, it looks like an emotional response has led to the logical action. The first emotion (from his mom) was something he wasn't able to handle; His emotional regulation got him to the comfort zone; that was to have a "logical rule" to that emotion; discard/disown and put a distance between himself and the actions/surroundings that had led to that emotion. And there, birth of the rule.

So, is the spectrum primarily right brained (or inability to handle emotions stemming from right brain) or left brained ? [rhetorical question, btw :-) ]

So from our own perspective, it is clear that we need to do couple of things:

• Meet the eye when talking to the DS; and touch is very important for that emotional equilibrium.
• Get the positive emotion first, before explaining the logic behind

The other key observation for me was this - the crucial conversations had to happen with him, face to face, with some kind of touch involved. Any conversation with him, sitting side-ways or across rooms aren't going to help and becomes counter-productive. Thinking about it, this is where the RDI principle of "referencing' could really help...

Easier said than done !! :-)

At a Fast Pace !

Based on a friend's recommendation and talking to another parent who had been through this, we decided to go for the Immersion experience at the PACE Place. [Leave a comment to this blog post with your email id if you need more information on it].

It was a great experience. DW feels very happy about the experience and its as if all the pieces of puzzles are falling in place for her. I'm (DD) more intrigued and I'm in between Storming and Norming phase of Forming-Storming-Norming-Performing phase. I have intellectually understood the concept and have internalized some of them. Its now to get back and do it and make it part of our lives. In any case, our experience has been great and of course, very tiring on all of us. We took some of the challenges with DS head-on (those non-negotiable inflexibility he had). He seems to have come through it. Now the key part of it, is to take that experience and encode it in a way, it becomes repeatable for him. I believe we have some tools for it.

Here is the my list of 13 ! (a bit disparate, but its my list !! :-) )

1. Appeal to the emotional/feeling side before you go the thinking/logical side.
I kind of equated Feeling/thinking ~= Revolutionary/Evolutionary.
Revolutionary changes are quantum leap, where as evolutionary are incremental.
A strong Emotion always trumps thinking.
Do this in the envelope of Bigger-Stronger-Wiser-Kinder

2. Touch, Touch, Touch,
Use Touch to convey emotions/feelings. Silently.
Engage touch while talking.
Disengage touch to communicate disapproval.

3. Anger, Bossy, Irritation (on the DS) countered by higher +ve emotion - push envelope to seek help
(DS base emotion -> safety, fear; ask him to ask questions)

4. Have purposeful motion.
Create obstacles and going around them and create need for purposeful motion (vs Ruminating Emotion)

5. Be conscious of Frequency - Duration - Intensity of any reaction

6. The quantum thing - about preparation and post-summary - Small, Medium, Large (Silliness, anxiety, worry, fun) - The transition between pre and post is the experience. Encode it

7 Use -10 to 0 to +10 to grade silliness, anxiety, worry, fun etc. Do prediction before the event and assess after the event. The difference is again the experience. Through this, look to build anticipation. Anticipation will trump anxiety, which will trump DS's own rules

8. "ASK ME"

9. When throwing a tantrum - "Go to your room" - No anger on our faces - done w/smile (BWSK), as we (DD/DM) continue talking. If 'go to your room' needs to be backed up by a physical push, DD should do it.
Safety is the key" ; can push the envelope up to that point, unless feel safety is threatened
"Ask me 'am i calm'" ?
Hold on to higher positive emotion. Its ok to add edge to the voice.

10. Map the -10 to 0 to +10 scale to Threat (Danger) to Reward (Interest) scale. The key again is the experience. The Fun and the anxiety lines in the graph cross over somewhere during the experience

11. Hand on shoulder or start stop speech to get attention. Eyes follow where the hand goes

12. Baby Brain (makes rules, worries, ruminates, avoids, reacts by being bossy or whiny) Vs Big Kid Brain ( Regulates, organizes, makes sense, deals with the moment)

13. Connector Rx

Here we go - that is my 13 encodes. Now, onward we go !!!

ps: I believe that Eric, Kathi and Steve are perfect complement of each other - this is where the whole was much greater than the sum of the parts...

Progress...

Trying to restart the chronicles again...

There has been significant progress with the DS. He has also grown a lot - believe he is in the cusp of puberty and we have all our fingers and toes crossed as to what would happen when it hits him ! He is very tall for his age - about 5.9" and quite slender - result of which no pants or shirt fit him !!! For that height, he is expected to be a little more plumper than what he is now. So we go to a shop asking for a 28x32 (waist x length), the girl at the shop goes, Hmmmm... (and I take a glance at DS as to see if he stealing surreptitious glance at the girl) !

DS is going to Tennis and Karate classes. The great thing about these two classes are the teachers have broken them up into simple parts and have been teaching him. So DS, feels highly competent and at the same time in that zone of edge-of-competency, that allows him to make progress. He is very keen to attend karate tournaments and showcase (parts of the) Katha ! One goal for summer, this year is to focus on his physical development a bit - because of height (and possibly weak hara, as we call in Karate), he is hunched... Should work on his middle-body strength this summber.

In any case, we are continuing to do RDI, although not officially - due to work and otherwise, we have taken a 6 month break from it. We are continuing on the Teach Social classes (Erstwhile Michelle Garcia Winner's Social thinking) - that is once a week with another boy. That has been helpful in teaching techniques. He is getting some "organization" (but left brained) concept behind it. One interesting development has been 'story-telling' (linked). DW and I have been using story telling for imagining the future for him and he has been using it to convey his difficulties and experience. While we use Rahul as the central character, he uses two - Anil and Balan. He has been very effectively conveying his experiences in school, through those proxies - his punishment (of teasing and getting to stand outside the class etc etc :) ). We are keeping to that agenda and over-joyed...

Some other snippets

1. The class teacher tells us he is very social these days. When he gets to the class, before the bell, instead of sitting in the class, he gets his friends out of the class and hangs outside
2. He is quite bright in the class and comprehends the concepts - once he understands the concepts its easier for him - but is also quite playful and continues to push the boundaries
3. One night, as I was sitting in the couch, he came and hovered around me a bit, and then said "Dad, I want to talk to you". And asked me about my day and how my office was... My two weeks of stress flew away.
4. He is beginning to understand relationships are compromises. He is talking about the compromises I've (DD) made and his mother have made. Its like talking about it makes him internalize it a bit more. Now, we can see he is adjusting a lot for our changes. And we have swooped in and taken advantage and make a lot of flexibility changes.
5. There are still a few core things that he is non-negotiable on (which is why we decided to go to the PACE Place (link here) for their immersion program. Drop us a note, if you want to know more.

I hope we'd be a bit more consistent in posting from now on. And most importantly, the trajectory of the development graph for DS is consistently upward !!

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...

Absence...

Hello all !! Its been a long time since I posted anything (infact, anywhere). Things have not been really hectic - i.e., it has not been that hectic that I could not find time to post... I think its a lack of inspiration :-), or mental fatigue, if you will...

Lots have been happening, mainly due to DW's efforts - DS has been growing (literally, he is as tall as me now and he is only 13) and has been enjoying life a lot. There has been great improvement in several areas (of note: flexibility, which is one of the core deficit). Story-telling has been a great success: DW uses it to message across; DS uses it to convey his thinking and why he did/does certain things through characters in his story. I will post something in detail soon.

Our focus for next year (beyond flexibility) - is "anxiety reduction".

Will post more about it.

In the meantime - Wish you all a great 2010 - Have a wonderful, peaceful and successful year ahead.