Care4autism

This is what Ramam said he would like to carry for lunch. 2 samosas,2 cookies, mango lassi and custard apple. All neatly packed in a red lunch box. It is a far far cry from what I send him!!! And according to him this would be an ideal dinner Grilled chicken, KFC  burger, French fries and coke. Hahahahaha....

Ramam wanted to play with blocks , he wanted to pitch a tent to be exact. So I told him we need poles to pitch a tent. He dashed off and came back with 3 wooden sticks. I realized he had picked it up from my husband's tool box along with some screws. Never knew he could think this ahead. So he set up the 4 poles. Put a napkin cloth on the top. Isha  added her bit, tied a small princess to the poles. Soon we had an one eyed monster waiting to gobble her up. The monster slept in the open on his bed. They soon wanted a house for themselves , that subsequently turned into a railway station. The last pic is the train chugging into the station.

          Recently on one of the FB post, a mother had raised a question on how to track behavioral changes, to establish patterns in behavior. Much  later I realized I had downloaded this app, was very consistent in recording the data and somehow along the line I stopped bothering to do so. I tried the lite version version first and then went in for the paid one.                            The best part is it is extremely  easy to enter data, provided one has the discipline to do so daily and then it is plotted as  a graph for you.The app is called Autism pro . It is very user friendly. Some of the default categories include mood, behaviour, food, health.... It is helpful when you are trying to analyse sleep patterns, or notice  any changes in behavior  with the dietary interventions.                       ...

        Though not into any diet, I am now convinced about the fact eating healthy is the way to go. Thanks to my friend Gina, I am now on innumerable forums ranging from the CD protocol to tried and tested diet formats. I am constantly bombarded with these posts, so to say at least I make an attempt to emulate some of these to the extent possible. I may not do the Parasite protocol, but yes, I did do an around of de-worming for everybody in the family. It is not anywhere close to following a protocol, but  I feel at peace having taken some effort in that direction. I may not follow the Paleo diet, but here I am attuned to the idea of making healthy breakfast, moong dal cheelas, bajra dosas, and millet kichdi, absolutely grain free. I have shot down the proposals for pizza the last 3-4 weekends.  Earlier, our ancestors did use a lot of millets. I have switched to buying TATA’s I-Shakti unpolished dals. The regular dals, I now find have an unnatural sheen....

The blog has been in need of a make over for ages . The  header  is no longer relevant. My charming  boy is now a preteen and is as tall as me. He continues to enthral us, pique us,  and even dare his father sometimes with his show of strength. For most part , he is still the silent companion but he did pull in a surprise,  when he was chosen for a music fest program , where he  is one of the singers!!!. He is a lot verbal today than he was, the phrases are there , the sentences are emerging. My eternal battle with the "wh" questions continue. Yes, he is still the same little boy shy, sensitive, loving, but somewhere along the line he is beginning to assert himself in the choice of eating out, making definite choices when shopping, doing his own laundry. ( washing, drying folding ,putting it away!). It actually gives me  a kick when he says he wants to eat momos, because that is one of his language goals . What/where  do you...

To quote Harshita Mahajan, a mother in Bangalore Mirror, December 6th 2012 issue, once… that autism is a zero sum game… you are either functional or you aren’t. Cognition doesn’t make the cut alone… it’s only a small part of the puzzle… a contributor to functionality. I had argued with my friend that in terms of her binary analogy that autism was a journey where we moved from the zero to the one. But finally you have to decide whether you are at zero or at one.                                  It cannot be surmised better. Often I think  if after so many years of intensive effort, if the final outcome is not up to your expectations , then indeed it would be a really sad story. It remains to be seen how functional Ramam would be at 20. By saying more, I don' t want to dilute the essence of those brief but powerful words.

Ramam has begun to retrace his steps and to a large extent this is worrisome. (There are of course no immediate solutions in sight). He walks a few steps and then wants to go back and walk the few steps again. Last week I had gone with him for an evening walk. My neighbor was sitting and chatting with her friend. Ramam stopped right in front of them and began retracing his path, Up down, Up down. And this continued another 5-6 times. By then, I had become conscious of this fact. I tried to coax to move on but he just would not budge. My neighbor tried to draw him into a conversation, but then he didn’t respond. This friend of my neighbor, who was watching this silently, said loudly, “Let Ramam and amma have a race. Let’s see who wins the race”. And Ramam just bolted. He ran ahead of me and turned back to see if I was joining him. Simple, quick fix solutions. It was like he was just waiting for the cue. Now, whether this lady understands autism or not is anybody’s guess. Both I and my ...

Today, was one of those mornings that did not have a good start. As Ramam's Christmas vacation is still on, I decided to sit and work with him and not let anything bother me. Luckily,this morning he was very receptive, and we spend good about an hour and half working and not realising that time had flown. Both of us were doing a lesson from one of his books. It was almost meditative, with both of us being involved and me enjoying his responses and cooperation. It was just the two of us shut out from the rest of the world, with no disturbances whatsoever. Sometimes you think in work lies your salvation. Just stay focussed and keep going.

Into the 2nd day of New Year, the euphoria of a new year seems to have vanished, one has again settled down to the routine of school and office. The charter of responsibilities remains the same, or perhaps with every passing year, it increases as our children also grow older by a year, and there is only so much time left to accomplish. On the positive side, we had a wonderful new year’s eve; all of us were on the dance floor at the army club, Ramam also enjoyed every moment of it, the music, and the lights. Then with a pang of heart, you realize he has come a long way. He was formally dressed the first time; with formal black shoes…We started the New Year on a very happy note. On the second, I had been with Ramam for a sathabishekam function (80th Bday). We had been invited by my husband’s school friend (a very long association!). I went late and stayed for 20 min. He was well behaved, but something stops you from letting go. The friend’s son, a couple of months younger to Ramam h...

I have not been blogging for quite some time now. At Ramam’s end things are moving at a snail’s pace. He is showing a lot of interest in playing with ball, basket ball, football….. Enjoys throwing and kicking them around. He has been off the diet since Diwali. There have been no obvious changes but not very sure if his verbalization has come down.                                             Ramam participated in Kalangana 2011, a very dismal performance. This was our first exposure to the event although I have heard Sumathi speak about it.   Among the hundred thousand children on the spectrum, probably a very small percentage gets an opportunity to go and participate in a competition. It is not about winning, but more about participation. In that sense Kalangana is a blessing. Tha...

Some of the parents in Bubbles school have been practicing for the program that they are going to stage for the kids for the childrens' day, the first words that come to my mind is that it is a labour of love. What is it that about our kids that we don't seem to be doing enough for them. The mothers start their days quite early, some of them had a bad night's sleep,but come practice time there they are all ready for it. The day doesn't end at that. They go back home, feed the kids, most of them have therapy slots in the afternoon and evening. In between the cooking, cleaning washing, feeding......... , they find time to make the props for the play, buy accessories for the costume, have time to surf for the dance song, practice the beat. One can do this kind of rigamarole only if you are absolutely dedicated and selfless. There is only one purpose to life and that is the kids. These mothers are juggling so many acts in a day. Some of them travel by public...

Last year this time around we were busy seeking admissions for my daughter to a different school.In another two months we would be heralding the new year. I know it is a little too early to say "The year that was". If I were to do a quick recap of the year it has been, we changed the schools for both kids, had some good holidays,introduced the I- pod and the I- pad to them , prologue2go the AAC device,keyboard classes for Ramam.The entire effort has been to provide a better ,brighter future for the kids. And every year it is the same story. We try some new therapies, discontinue some, all the time trying to offer the best possible resources (permutations and combinations)for the children. Every new year eve I have the same prayers,let this be a wonderful year for them, let them pick skills that shall help them along the way. And this is so very true for Ramam. These are not only about skills that may provide him livelihood but also things that he can pursue as hobbies. As t...

When Kindness Kills                                           I and Ramam decided to celebrate Onam ( A festival of Kerala) at the army club, RSI, Bangalore. It was an impromptu decision. I and Ramam seated ourselves comfortably in one of the restaurants. I placed an order for Chicken lollipops and Sprite for him. Dr. Yamini (NIMHANS) had suggested me to write things out rather than repeat them verbatim every time .These are called visual chits. I proceeded to make these.   As I rummaged my bag for a pen and didn’t find any, I decided to borrow it from a gentleman across our table. Being the gentleman that he was, in the true army style, he objected to me getting up from my chair, walked to our table and handed over the pen to me. He noticed what I was writing. I thanked him and returned h...

The long summer holidays are over   and he is back to school. (my hols have begun!) . Ramam begins this academic year in BUBBLES run by Sharbani at Hennur. Yes, I do miss him in that he has been my constant companion last 3 months. With both kids back to school there seems to be so much time on my hands to spare. It is back to surfing, blogging….                       Talking of school, what then comes to your mind is that a good school has to provide for opportunities for the child to SOCIALISE primarily, in a group which as an individual one cannot provide. That includes, communicating in a group, learning in a group, learning to share, taking turns, waiting…… all this apart from the basic education they receive. Socializing is probably best done for an autistic child in a school, probably because it would be done in controlled situations or there are teachers to encourag...

This was a sequel to my camping out with Rama. But this time we packed in more punch with the whole family joining in. Father, mother, son and daughter. Organized by Akhila and Ram from Coimbatore in tie up with NALS an Adventure company, we had a lovely, memorable holiday. We were a group of six families. The comfort level was so high, the company great, the food excellent, the weather to die for, the experience sheer joy.                              We were put up in dorms with three tier beds and the kids freaked out. Isha had company with siblings who had also brothers with similar problem. And I even found her exchanging notes with them!!!!!!!! My brother kisses me, he can read ….                            We did ...

The last weekend I and Ramam set out on a camping trip. I would not have thought of such a possibility as this few months back. But it was made possible by Sarbani   mallick and her team at Bubbles. As everything was taken care of, logistics, food, accommodation all that was needed to be done was to pack my bags and leave.                                                       But, yes there were way too many apprehensions in my mind in the beginning. Will I be able to manage him alone? What about his food? I think food is always such a major issue with parents. Loaded my bag with every conceivable gfcf snack. It was some solace there were couple of other parents with children on the diet.       ...

It has been quite some time since I have blogged. Somebody recently asked me how often do you blog? I said probably 2-3 posts a month. But then I realized I have posted just one this month, I better buck up. My GFCF recipes have also dried up!! Am going thru a lean phase with nothing much I can think of adding. But just this. I recently attended a workshop by Dr. Yamini and Dr. Shiv Shankar from NIMHANS on language building and communication for our children, Sorry, I haven’t got the title right but what mattered was the content of the workshop.   I was looking forward to Dr. Yamini’s talk as I have interacted with her on earlier occasions but Dr. Shiv Shankar was also equally good.   The first point he made was not to confuse language with speech therapy. What we want for our children is language therapy and not speech therapy. One spends time commuting to therapists, money on therapies all to no avail because language therapy is something one must to do 365 days 24*7.The th...

After attending the meeting organized by ALFAA, I was for once, looking forward to    meeting a government official, somebody from the census board.   I was also pumped up after watching the commercials being aired on TV to include disabled persons, no matter what the disability in the census. Autism as of now is not mentioned in the census which is very sad, given the fact it is increasing at an alarming pace. It is it is clubbed with “others” in the disability category.                                          Unfortunately for me, the official turned up at my doorstep at an inopportune time. Ramam was in a foul mood, and I requested him to come after 10 minutes. I requested him to complete the formalities for the other apartments on my floor. He then told me initially it ...

                                   Growing old and how? Do I watch out for those tell-tale signs of ageing? The first grey hair, the odd wrinkle, ……. Are these telling me that I am growing old?   No, not really, in a roundabout way it is Ramam letting me know, Amma, you are growing old. As I see mothers of the younger ones discussing the initial diagnosis, seeking advice on potty training, quite unwittingly have I fallen in to the senior bracket! His needs to attend to nature‘s call in public place is another way of me knowing that he is a big boy and me no young either. He now uses only the gents’ toilet. Gone are the days when he would accompany me to the ladies toilet. And the big, big giveaway, is my receding hairline and my son beginning to sport the first minute traces of facial hair on his upper lip. It would be ridiculous to call it a moustache, but yes it is very much there for a pair...

                                Leaving in a society, in an apartment complex, one cannot do away with your neighbours. When I say neighbors, I mean it in a very general manner of speaking, my next door neighbor, to my neighbors on my floor, to neighbors in my block to all of them in our housing society. Fortunately the first two categories of our neighbors have been very good to us, maybe even fantastic but  the 20% living in our complex have been giving me those minor pin pricks and probably some amusement when I recall these events. This is so with other parents, living in apartment complexes who also say the 80% are generally fine.                                  Recalling these events, one of my “neighbors” in the adjacent block, apolo...