A few days ago, I overheard DS speaking to DW. He was telling DW, "Amma, I'm suggesting you that you do...". He obviously replaced "telling" with "suggesting"... Having overheard, I then called out to him and told him, that he cannot use "suggesting you", but the appropriate usage is "suggesting to you. There should be a 'to' here except in the usage of 'telling'. Other than 'telling', its always 'saying to you', 'speaking to you', 'suggesting to you'"...etc etc.
DS comeback was, "Appa, what are you suggesting to me ?" :) Smart !!!
Then cut to my travel last week; on the flight, where I tend not to see many movies, decided to see "Evan's Almighty" - which, post-facto, seemed a loose sequel to the Bruce Almighty. The plot for the movie is the God appears and commands Evan Baxter (a congressman ?) to build an ark, in the lines of Noah's - the plot is pretty thin though. So he starts building it, but the whole world and the family thinks he has turned crazy; In one of the scene the wife and the kids are sitting in a restaurant and there is a TV on playing the incident of Evan's ark - the people around make fun of Evan, while the wife squirms in her seat. Then God appears in front of the wife (as a waiter) and talks to her. When the wife tells him, all she wants is the family to be together, God asks her - if you pray for something, does God give it to you as is or provides an opportunity to do so - for eg, if you pray for courage, does God give you courage or provides you an opportunity to show courage ? Or when you want peace, does He give you peace or provide opportunity for peace"...
Hmmm... so when we were asking for "well-being" of DS, has God given us this "opportunity for the well-being" ? Perhaps, this is the sign !!!
But we had to tell him sooner, which we already delayed. So when I was traveling this time, we had decided that he needs to be told; so the plan was just two days before my return from my travel, he would be told. This was the sequence
- we will get my current boss (who is also a good friend) to visit our house and tell DS that we are being transferred (DS has this view like the teachers at schools have to be listened to, the bosses at work has to be listened to)
- there is bound to be a bit of melt-down; handle it for a while, and then invite his friends from the neighbourhood to come home and play with him.
- if he is continued to be disturbed, I return 2d later and take some of the brunt...
I believe that DW handled this extremely well in spite of my absence (or perhaps due to my absence) and it required extra-ordinary amount of bravery and an aptitude of the oak-tree to do so.
So its kind of ended well; but one thought still gnaws at me... Did I cop-out on this and not want to face the kind of reaction that I expected ?
ps: This is a good read on bad-days.
Funny !! :)
This was sent to me via email sometime in 2005. Not sure how much of it apocryphal; but everytime I read it, there is a small choke up the throat...
It was a sports stadium. Eight Children were standing on the track to participate in the running event.
With the sound of Toy pistol, all eight girls started running. Hardly have they covered ten to fifteen steps, one of the smaller girls slipped and fell down, due to bruises and pain she started crying. When other seven girls heard this sound, stopped running, stood for a while and turned back, they all ran back to the place where the girl fell down. One among them bent, picked and kissed the girl gently and enquired - "Now pain must have reduced".
All seven girls lifted the fallen girl, pacified her, two of them held the girl firmly and they all seven joined hands together and walked together and reached the winning post.
Officials were shocked.
Applause of thousands of spectators filled the stadium.
Many eyes were filled with tears and perhaps it had reached the GOD even!
YES. This happened in Hyderabad, recently! The sport was conducted by National Institute of Mental Health. All these special girls had come to participate in this event and they are spastic children. Yes, they were mentally challenged.
And truly special !!!
Here is to hope that the world picks up DS, long after we are gone and walks with him to his finish line.
My mom was talking to DS (ofcourse, in his mother tongue). As he was talking, DW called him to tell him some thing. DS turns around and sweetly says "Oru Nimasham amma (one minute, mom), I'm talking to Patti".
That was too good; ofcourse, all of us had the persence of mind not to make a big deal of it. As soon he left the room we did a high-five and a jig (atleast, I did it :) ). The whole point about not making a song and dance about it was that DS seems to be more aware of all of this now and doing that would actually embarrass him...
...which takes to me the next point. DS seems to be more and more aware of himself and his surroundings and situations. That is leading to the next level of thought process - ie regulating himself. He is now talking about what his appropriate behaviour should be. What he could do when he is alone with us and what he would not when he is with someone else or visitors or his friends. He is also talking about the other part - what is inappropriate too. So, we see he is moving towards a bit of regulating his own behaviour.
For instance, some of his interaction with my mom has been stressful for him. He doesn't want to repeat himself and my mom cannot hear well. So, once after I play-acted with him to show about hearing issues with my mom. The next day, when my mother asked to repeat, he started with a loud voice then slowed down and announced "I started to scream, but I did not"...
So, is Self-regulation on the way ?
ps: If awareness and regulation is on the way, how much is he realizing that he is 'different' - probably knows it more now.
...so given that, as I was thanking providence for the recognition, a thought crossed my mind: would I trade any of it or all of it for DS' progress and development, total or incremental. The answer was crystal clear - yes I would. So, I was not clear why that "good" thing did come my way.
Then I realized that, perhaps this is the vehicle He has sent us to make that progress for DS.
I'm more at peace with myself.
As a "practicing parent" for the past ~7 years, let me give a contra view here. Lot of folks here have condemned the doc who had talked Autism being a lifelong condition and cannot be cured.
Do I agree, No. But am I outraged ? No. Doctors are professional, he has given his professional/informed (to what extent, is very subjective) views. We just have to take it as one more point of view. Personally, I don't mind diverse opinions, since it provides us with the worst case scenario that I can start preparing for. Providentially, in reality and in life, if the best case (or even average case) scenario happens, I'm better prepared and well covered.
So, I'm personally against naming the doctor. He has provided his view at a completely non-emotional level. And in his life time, data would him prove him wrong; and right. I think he was merely giving his professional opinion, even though its not what we want to hear. If we want someone to tell us what we want to hear, we should just go to our own parents/support-groups :) !!
Having said all of this, do I think there is going to be a cure (whatever that implies) - I don't know, don't care. All I know is that its possible for my son to have a close to normal life with obvious idiosyncrasies (like every other human being is). As parents, we will (and should) focus/continue to do things that raises the probability level of that result.
RDI for us is still very key, since I believe its the one that does set-ups the structure (or functions) or lays the first foundation of "myelination", ie the first "conscious" way of creating pathways for the brain to recognize a function. And then comes the connections with various other methods (Enki, art forms etc) and elimination of inhibitors through SI.
The Subjectivity cycle is to give him a view through labs, that different perspectives exists for different people. Although there exists specific description of a baseball (contour, color, size - basically quantitative/objective), there is another subjective view to the same ball by different people (the color is not my choice, the ball is too small for my hand, the stitches are too obvious for me - basically qualitative/subjective).
That is what we are trying through those RDI-objectives in the Subjectivity cycle; ie:
=> A ball can be perceived differently
=> I've an emotional answer to my perception (like, don't like, don't care)
=> The emotion, however can subside/change over a period
=> based on that change, i can re-draw my subjectivity (able to live with the issues, start liking it etc)
=> and the change could drive a new perception
The intent is to see if lay a foundation to an appropriate appraisal function, rather than inappropriate ones (like fear, need to have things static etc). Hopefully this would lead to the causal analysis. We are figuring out the RDI labs around those "phases"; and then (hopefully) use the Making-the-connections thing with Enki, stories, playacting etc to further make the connections.
Hope I'm making sense !
ps: We are finding it tough to have the "don't care" emotion come through.
As a DD/DH, I mostly would be without a clue - if its right to intervene and go with the flow or if I should help one of them to get out of that space, so that constructive dialog could start again. Last week, there was one such day. So after all the "fight", DS very tired crashed early on our bed. Later on, when I woke him up to move him to his bed, he went seeking his Mom, half-asleep to tell her "Sorry" and told her so. Further, he explained he is apologizing to his mom, since he had troubled her throughout the day !! This I believe, was such a moment of joy in a day of despair for DW.
It is one another proof of that there is normal emotional thought running through these kids, inspite of such behaviour tantrums. Leads me to believe more so, those behaviour are due to some overloads on their senses resulting from some eco-system "noises". Their need to react at an emotional level is getting submerged within the noises. Why would he resurface his emotional thought, after a brief calming ?
In any case and perhaps on a tangent, there is a news article recently, that confirms what is perhaps already know. That the IQ of these kids cannot be measured using the normal IQ tests administered to NT kids.
Cut to the past. Whenever we talked to DS about buying some real estate, he always used to get perturbed about it to an extent. His worry was that he likes the current place that we are staying and buying real estate implies we will shift to that and he did not want it. We did not have much success in trying to explain that it was for "investment".
Cut to two days ago. I had told him that I have done something for him and he would get a certain amount of money monthly and wondered what he would do with it. He said, when he does not need it, he would give it to "amma" and when he needs it he would take it back from her. I had to pounce on the opportunity and told him that exactly what we do with the money; when we don't need it we "put" money either in bank or real-estate etc. And when we need it, we ask the bank to give it back or give the real-estate away and get the money back.
"Investment explained - QED" :-)
- Do massage of his teeth and gums (with fingers)
- Some dental clean-up taking him to the dentist and photographing those
- Prep for braces by the Orthodontist - by having an elastic band tied to his teeth four weeks ago and then some metal rings three weeks ago.
So far, not much issues - he has complained of some pain - have applied the gel that the doc had given him and also crocin. He has been settling down. Due to grace from the one up above, we are not having much of an issue (touch wood); I tend to believe that there is some enduring (and endearing) fortitude in these kids that we cannot really fathom !
He is also looking forward to the fact that after September (when he believes the braces would be off), he is going to be much more handsome ! We have told him that !! And he feels shy about that !!! (That should be a good sign :)) !
Here is our take on how to increase subjectivity levels; moving from one to another and adding complexity as we move and model labs for each of it.
(click on the image below for higher resolution)
- When looking through the peep-hole on the main-door, the people and objects look smaller and distant
- When looked into the mirror, the (digital) 2 looks like 5. This observation was inside an elevator
On mirror, DW and I played the "mirror game". That is - face each other; one be the mirror image of the other. DS intently watched this - again not sure, if he got it, but DW and I had a bit of fun playing that game !!!! :)
DS was very keen that he participate in everything. He participated in sports (cycling and swimming). Of course, it was fun to watch him get onto the cycling race; and cycle normally (400m) around the apartment, completely ignoring that in the race that you need to be cycle faster. It, was in a way, sweet to watch him to do that. Then the same pattern on the swimming too.
As I had indicated in an earlier post he did sing MS's "Oli padaitha Kanninai" on stage. I do believe he did fairly a reasonable job at it, modulating as per pitch in the song (taped it and sending it to our RDI consultant). But the best was yet to come...
...The program ended with 3 girls dancing to a movie song. Towards the end of the song, whole audience of kids joined into the dance as the music played on. DS said he wanted to join the dance and ran to join the dance with all other kids on stage. His dance was jumping up and down. He paused at one point, intently watched the dance of other kids, as if he is studying their moves, then resumed his dance ! Also, captured on Video for our consultant to see!!!
It was quite cute and heartwarming to watch...
After about couple of hours, DS was back to normal self, but did have seemed quite fatigued in those two hours. We were quite apprehensive and worried - because he is in the age, where we are told, the onset of seizures could happen as a co-occuring condition. We do know that there are drugs to control those, but we were worried since the seizures apparently set the development back. DS's pediatrician checked him out in the afternoon and said he looked quite normal and all his vitals are ok and DS's enthusiasm seemed back on. He said it could be just Vasovagal (syncope) attack or Akinetic seizures.
He did ask us to consult a neurologist and perhaps do some tests. Then came the neurologist consult. The neurologist tested him out, his reflexes and his reactions and said DS is fine; Given the other incident when the DS was 2 year old, the neurologist said that the fainting spell could be a result of extreme and unbearable pain. But if we had the money, we could do tests. So we did the EEG and CAT Scan. Both the report came out normal.
We are relieved to an extent. Hopefully its just vasovagal syncope and nothing else.
At our apartment, we have this annual day coming up on the 1st of July. Usually, this is a social gathering - where there are sports and cultural event. This sort of "party" or get-together happens twice in a year - one during the new year's eve and another the annual day.
During the last new year eve, DS sang MS's "Kurai Ondrum illai" with great gusto ! He was so excited about it. Infact, when he paused a bit going from the first to second stanza, the crowd thought the song was over and gave him an ovation. He had the presence of mind to get off the stage (dynamic thinking ?!) and then come to us and tell us that he could only sing half the song...
Now, this year, he wants to do all - sing, participate in sporting event (cycling and swimming). He has even picked the song he wants to do - MS's "Oli padaitha Kanninai". This time DS's grandmom, who is a classical singer herself is at home and trying to train DS to sing.
Now the question we are grappling with is this - Although his intelligence level and skill levels aren't bad, the biggest inhibitor for DS, at most times, seem to be the absence of motivation; however, the participation in this party/event seems very exciting for him; he is willing to perform on stage and even put himself in a position where he knows he is not good enough and compete with other kids. Is there something that we can do with it? How do we take this and build it up from here, as a foundation for motivation for other things ? Any ideas?
On the financial side, to be very blunt, we are concerned - we cant leave him a corpus - how would he manage it ? Would he be "cheated" of his inheritance, like its shown in the movies and the ones that we get to hear in real-life too. Leaving property has the same challenge. The other one we are exploring is creating a trust, selecting trustees who could be trusted (etymology ? ;) ). Atleast, that would introduce the checks and balances and also reduce the risk of foul-play.
The other one we are looking at is couple of insurance policies - Jeevan Tarang from LIC and Mahalife Gold from Tata-AIG. Although, I'm constantly advised by my "CFO" friends, that insurance is not an investment, I'm drawn to these two schemes. You pay premium for around 10 years for a sum assured. You can take the policy on the child's name. After the completion of premium period, the policy pays a certain percent of the sum assured to the policy holder, every year (read every year), until the age of 100 ! At the completion of 100th year, the policy holder gets back the sum assured...
I'm drawn to this from one angle only - although its not a sound financial instrument - the pay-out is periodic and that I think is a good inhibitor to complete swindling ! I could be afflicted with paranoia perhaps, but its about securing the child's future... a special one at that !
One-day, we realized his fear has shifted from the poking-and-sitting-still to being subjected to completely-shaved-pate and present a Yul Brynner look. He started worrying more about clean-shaven look, particularly after seeing his uncle sport one once. So, a few months ago, I had actually taken him along with me to the shop, when I had needed a haircut. He sat next to me on another swivel-chair and watched us the whole time with great interest. At the end of it, he seems to have realized that
- Having an haircut at the “barber shop” is okay and it is voluntary and they do not force anyone who comes there to have an haircut
- Secondly, all the haircuts do not end up in a clean-shaven look.
So, last week, I took him out to the shop. It was good to see him get there with a great anticipation and with only a bit of anxiety. Not only he waited for his turn for about 45 minutes, but when his moment came to be on the chair, he sat still, was ok to have the cloth around him and only once did he cry out loudly – when his nose itched and he couldn’t scratch it !!!
Today, we decided to put into practice (well, actually remembered) what the SI specialist asked us to. Do some gym-based exercise before going into the pool, to get him to proprioceptive input. Well, we did not take him to the gym, but we had him stretch his shoulders on the Thera-band (we bought a bunch of those, last week from Reebok stores - costly, I'd say). Lo behold, today, both the arms were going around and legs splashing all over, DS crossed the breadth of the pool. This was a few times until the Coach who appreciated it loudly - and promptly DS lost it post-that ! ;)
I believe we just need to continue on PP, Vestibular & Posture SI activities. We did come up with a sensory-diet for him. Lets see how it goes.
The other thing was that we had taken a video of his school time (about 2hrs) and had shared it with both our RDI and Enki consultants. Good inputs from both of them. The Enki specialist had said that he seemed not to be inhabiting is body (I would have gone, "wwwhaat ?" several years ago - but with the DS being special and my own tyrst with martial arts, I see possibilities); and his perseverative actions like banging the table in frustration on the video or wringing his hands, are actually his attempt to come back into the moment. She has advised us to have a shorter class span for him, where he is on 'taught mode' for about 15m, then do a 3-5m sensory activity and then 5m of his own time; and she has given us a possibility of using Origami to build on his need to have strips of papers on his hands.
We had also met with a Sensory specialist and she has provided us with a set of sensory activities that we need to do on him. I'm still unable to schedule them in a way that we could run it well and consistently - need to do that this weekend; the Enki movements has given an added set of tools for us to use. (Btw, why the "I" in the "I'm unable..." is that we have a kind of division of labour between DW and I - she does the RDI and Enki and I am supposed to design the SI for him; as ever, I believe I woefully equipped to it forward, but we will stumble on ;) ). Reminds me, need to send a note to the SI specialist and ask her to give us a pilot schedule on which we can op the SI activities.
Wonder, if the next inflection would come from here - confluence of the mind and body ? As a non-sequitor, it does sound funny that the logical guy I am, I'm talking about abstracts; but having a special child opens up new philosophies; theories abound and fresh axioms appear !
Two days ago, DS was playing in the apartment play area in a grass mound. He was playing with another kid (half his age though), and playing throw-catch with the ball. I had decided to swim in the adjacent pool and there is a kids pool area between the bigger pool and the grass mound (photo adjacent ;) ). DW, who was with him, decided to go upstairs for a few minutes. In midst of my swimming I heard DS talking to someone. When I surfaced he was talking to an older gentleman, asking for his help, since the ball had gone into the kids pool. He was asking the gentleman to help, since he cannot get into the swimming pool without the swimming attire.
Later on when we were discussing this - we told him that we were very proud that he asked for help, but asked him (ofcourse, in our own declarative way :) ) on what his thoughts were. He said, he knew the gentleman since he and DW had gone to their house for a function. So, he knew that man, hence he asked him specifically for help. He also said that the other option he had was looking for a long rod, that he could not find.
Looking to help himself first, check and continue to reinforce.
Asking for help, check & ctr.
Identifying the appropriate person for help, check & ctr.
Make judgment if the person can help, work in progress.
Articulate emotions when things dont go the expected way... yet to start, long way to go !
ps: The gentleman in question said he could not help, since he was carrying a baby. By that time, I had intervened to get the ball for him; in the hindsight I did that too quickly. Should have waited to see what else he would have done. Later, I tried to get him to relate how DS felt when he was refused help; he wasn't able to articulate from an emotion perspective; he said it from logic - ie the man could not help since he was carrying a baby and cannot get into the pool.
Not sure what it was for him; he was not physically very active; but I guess the break itself was good enough - also, because we were in alien conditions, keeping to the diet was quite tough and we had let go. So, perhaps that was enjoyable for DS. We did see some regression in his behaviour - like inappropriate laughing at times, a bit more excitable than normal. So, sometimes I wonder if this its a good thing for us to take this kind of break; but then I also think, when we reconcile the balance sheet, this is a short-term loss for a long-term gain - i.e., recharge ourselves (all three of us) to continue on this path for the next year, until the next break. So much so, that before we left the hotel, with DS we took a vow that we would all do what is expected of us and with no "task avoidance". Back at home, the last two days has been good - DS has gotten back to groove. Ofcourse, adjusting to new SI activities has been a bit tough, but eventually he did agree...
...which brings to the other good part of the trip. We did meet a SI specialist, who had evaluated him and recommended a host of SI activities - which is kind of overwhelming. We've requested the specialist to schedule it for us as "sensory diet", so that the whole thing is more systemic. Now, the jury is out on that on where we would be and how successful we would be with that. Fingers crossed.
But the best part for us was this: Doc had done the skill assessment on him - reading comprehension, arithmetic, reading, spelling, writing etc - The tests were:
- Weschlers' Intelligence Scale for Children III edition
- Weschlers Objective reading dimensions (WORD)
- Weschers' objective Numerical dimesnions (WOND)
- Weschlers' objective language dimensions (WOLD)
- Diagnostic interview for social and comm disorders (DISCO 10)
DW, who was tense before the assessment, is all smiles and I think that would remain on for a while :)
It helps us keep the faith in the path we have chosen -
- Part-time schooling
- GFCF kind of diet
We have started a new "thing" for him - the rhythm, based on "waldorf" like program. As a part of the rhythm, we play some really soothing music in the background and get him to swing in a cane chair (a kind of swing); sometime we gently swing him as the music plays in the background. After the (SI kind) morning walk, this is the part of his rhythm.
I've been noticing this for a while, but now I see he does this more often; today as the swing was going back and forth and with "gokulathil kanna, kanna" (a tamil song with classical overtone), he laid back his head on the backrest of the swing and closed his eyes gently, listening to the song. No burrows in the forehead and no crows-feet...
...The noise around and in his own head seemed to have minimized. Oh yes, he can relax !!!
But the champagne moment came a few days ago. We are using some of his "would-love-to-do" activities to teach him the concept of money. The principle behind is that he needs to pay us for him to do some activities. We have a open "box" with three partitions with Rs.5/-, Rs.2/- and Re.1/- coins in them - the coin pile is also labeled. And he needs to pay out my DW or I. for frolic in the pool. Or any such activities that he loves.
Couple of days ago, as I was rocking him in the swing, as a part of his rhythm, I told him that the day was a "cost" day; that is he needs to pay for his activities. I told him that he needs to pay for pool and Oral-mathematics (where he does word sums denoting multiplication or addition with my DW).
Pat came his reply - "Appa, Oral-math is so expensive, I cannot afford it" !
And we went :) ;) ;) ;) ;) :) for nearly a week !!! :)
I've been thinking as to how to make this tool more effective. I do know that the connections are at different levels.
- The first being physical, factual. Things that are tangible and are relating to the senses - can be seen, heard, touched, smelt etc.
- The second is emotions - he is able to connect up to the emotions expressed by the characters in the stories.
- The third level is abstract - he is able to reason a bit - as to why the character in the story felt the emotions in the way that s/he did. Kind of causal thinking
- The last level being connection to self - experiential - as to how he is able to connect the characters/settings/situations to his own experiences and what he learns out of it.
Today, we are kind of labeling the details in the stories to one of these levels, with an hope that we can effectively highlight some of it by weaving it in our activities and programs. The good news is, our DS is able to do 1 and 2 to some extent. Draw parallels at level 1 and to some extent in Level 2. The L3 and L4 are going to be challenging... I believe if he can start doing L3, then the L4 would naturally follow. Fun, happy and frustrating times ahead !!
Into my head -
See wires crossed
An inchoate mass
of ocean of thoughts
Rise in noisy waves
fall to a still-born end.
In a cacophonous cadence,
Shutdown my senses.
I arch tense;
Body spins -
masking the din.
Past, tense twirls,
coherent and sound.
Spy deep into my brain -
Beyond turmoil and storm,
In that lucid calm,
I'm all heart...and pain.
[Note: Above was the post that I had posted in the Autism India Yahoo group as an input to the discussion on caregivers and acceptance]
(or like Sir Paul said, Let it be ! :) )
I actually was in the sidelines like someone else has said and watching. Then I decided to jump in with my 2pips...
1) I think "A" for acceptance is the key. Not acceptance of Autism, but acceptance of diversity of views and contra opinions. I think it is this trait that has made science progress as much as it has. The point is to keep it at the situation and not at a personal level. Like xxxx had pointed out that everyone in Autism has contributed immensely to the awareness, development and intervention-techniques. But at the same time, expecting everyone to be know-all outside of their realm of expertise is also setting us (parents) for failure. So, its key that parent can make that differentiation. To me, that parent's first challenge was there was a gap between his expectation and the result he was handed with. Its his learning curve. While I acknowledge and even look up at awe at these institutions and people who have given so much, I also very strongly believe its the parent that feels the utmost pain for their child. So, when zzzz posted his contra view, while I will NOT agree to what he has said (and I'm glad the group moderator took the references out), I can completely empathize with his moment of pain and frustration and what he went through. From that perspective, I do hope we acknowledge his pain and disappointment. After all this is also the "Parent support" group.
2) On Acceptance of autism. I don't think I'm ready to accept autism. IMHO, lets not confuse that with the 'acceptance of our child'. I accept my child for what he is and what he does and I do feel proud for the kind of effort he makes every day, but i do NOT accept that his condition is a 'given'. I do believe, like he has done in the past 6 years, he will improve and I will do what it takes (within my resources) to ensure he continuously gets all the inputs; I do
- GFCF to take away his physical inhibitors
- RDI to do-over his neuron connections :) and provide him with a framework for to think
- Waldorf-kind of education for him to experience stories and use the RDI framework to make connections
- SI for him to get physical confidence and take away the noises