Thursday, December 29, 2011

Happy new year

Just 3 days to go to herald the new year. We have yet, again embarked on a new therapy for Ramam ,the NAET-Namboodiripad allergy elimination technique with the same fervor, hope , enthusiasm that marks the beginning of any activity. More on it,as it progresses.
Ramam just recovered from yet another out of cold and fever,and that put a stop to all our Christmas holidays program. I was tempted to look up some of the therapies that parents'at Rama's school have joined, but a reconsideration of his existing schedule made me think twice. Given that there are are only so many hours in a day that you get to work with the child, one doesn't want to get it fragmented by doing too many things. Set small selected goals, work on it. And then move on to the next set of goals. This realization has dawned quite late on me. I shall probably work on that. Many a times, mothers tell-me when the child is capable of academics, shouldn't he be encouraged on those lines. I am not quite-clear on this. I feel if Ramam isn't able to recall what happened in the school, what is the point in getting him to do academics. It is more important to work on these aspects, for academics ,if it has to come will come definitely much later. krishnana Narayanan spent years in a boarding school ,not learning much, but picked up much later when he started home tuitions with his father.
Anyway as parents ,one is always wondering on the choices that we make for our children. We want to put this allergy issue behind us, and that explains the NAET ,that we just started yesterday.Picked up so more interesting apps for Ramam. The a4cwsn.com has a good pick of apps for children on the spectrum.
Wish you all a wonderful year ahead.

Friday, December 9, 2011

World Disability Day

As part of the world disability day, on 3rd December, the Bangalore chapter of the autism society of India (ASI) had organized, a visit to Sarla Birla Academy- SBA , which is a residential school for boys . A group of 27 children set off chaperoned by dads, moms, teachers and of course Ruby, the new secretary of ASI. Five special schools participated in this program. The objectives being, one to spread awareness of this Autism spectrum disorder amongst the youth, secondly give the children an opportunity to interact with their peers.


We set out in two buses, and reached the school around 11.30. We were warmly welcomed by both the students and staff alike. The students who welcomed us were from the higher classes the eleventh and the twelfth grades. On arrival we were served refreshments outdoors. I shall be doing injustice if I were not to talk a little about the campus. Fabulous courts, sprawling acres of greenery, a stone garden… the works. The students were extremely courteous, doing everything possible to make us feel welcome.

Ramam kicked off his day by shooting some balls in the basketball court. The refreshments were followed by a welcome address, screening of a Tom and Jerry movie, an impromptu performance by two of our children on stage. This was followed by some fun activities, bursting balloons, colouring, drumming. Each kid was to be assigned a buddy, who was to interact with each child, but as things progressed, they moved in groups.

A lavish lunch followed, a formal vote of thanks was proposed by Saleem, the treasurer of ASI and Ruby. The whole idea appealed to all of us. It would be a sad thing if it would be a one –off event. Probably out of 20-30 students who interacted with our children at least a handful of them would be keener on carrying forward these interactions. I hope it doesn’t remain a one day event on their social calendar. Forget the frills, just shooting some balls into the basket, kicking the ball around, singing, doing all the fun things as chasing a balloon…... (It is more about our kids, because the students have probably outgrown all of this). A bonding is only possible, for our kids only when the frequency of such interactions is higher. Having said all that, it was a fun filled day.
                 
A special word of thanks to Ruby, for having organised it. This is the second such event organized by her that I was attending. The first one being organized by her foundation ALFAA (Assisted living for autistic adults). In both these events she had catered for the children where there were events that they could participate and win prizes. I wouldn’t want to attend a talk knowing Ramam  is sitting in some corner, and is lining up.



Tuesday, December 6, 2011

Into December

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. That brings me to Sukesh performance on Asianet (a regional channel) in Star Singer. In a request by the viewers to know more about Autism, Sukesh’s mother grew emotional and said that she would not be able to sum up the complexities of the problem even if she spoke for 2 days about it. Understandably so, it is the mother of all problems. But, in hindsight, I felt she had a very captive audience and it would have been a wonderful opportunity to spread awareness of the problem.
                                          Life goes on, as usual with my daughter throwing in some surprises and disappointments along the way.  Went to Sarla Birla Academy, a residential school for boys on the Bannerghatta road in lieu of the World Disability day. Not much happening in Bangalore on that day. More in my next post.

Friday, November 11, 2011

Labour Of Love

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 transport, some of them have more kids to handle at home. But there they are, agonizing over the smallest details, delegating tasks amongst themselves. It is also lots of fun, there is easy camaraderie, leg pulling, eating.....maybe these moments take away the tediousness and drudgery of everyday life.
They are attuned to every little cry, sound that comes from the school building. Then a discussion follows as to that particular child has been restless off late, or a child is not keeping well,.....there is no dearth of causes for concern. To come in and wait everyday , the whole time can itself be very demanding,not to speak of the household chores that are pending, not being able to attend to any outside work that demand urgent attention. Hats off to all these mothers.
Taking it a level higher are mothers like merry barua who are also fighting for the rights of the autistic community. As Sarbani who attended the meeting at Delhi was mentioning, the new law that is to be passed has some major complications over issues such as guardianship. The autistic adults will have to be their own guardian, something like they cannot have a legally appointed guardian. This means that somebody can cheat them of their rights, get them to sign documents . This can be very dangerous as these adults may unknowingly sign away their property,rights....As mothers like Merry are roughing it out on a lot of major issues, on a larger scale, here are mothers especially of those little ones in the age group 4-6 yrs,hoping against hope for the smallest breakthrough.
All set for the children's day celebrations at Bubbles tomorrow.

Tuesday, October 25, 2011

Happy Diwali

A very quiet Diwali at home with both kids being down with flu.After we purchased the I- pad, I and the kids have been spending quiet some time with it.Probably been even bonding over it. With nothing much to do tonight,I just watched Stevejob's Stanford speech.Truly inspirational. There have been so many posts on various blogs by so many parents thanking Steve jobs for the joy and and happiness that the I- pad has bought into their lives. Having experienced it first hand there is no denying the fact, even as I merrily type away this post.
There are so many apps like the story builder,Lego creationary,talking Carl.....just to name a few. Plenty of apps for communication purposes also.One is spoilt for choices.But to narrow down to one , and then to put it to proper use is the challenge. I don' t want Ramam to use Proloquo2 go (AAC aap) just to demand things. I have set and reset his home page and alinged the folders so many times but yet to finalize the way it should be. At the cost of digressing, I shall mention the new version has some excellent features. When you type, the possible lists of words show up, making it very easy to type.One can type and insert it into a folder. This one comes handy when you have to insert a social story, recall an recent outing.
Back to the I-pad, the kids have taken to it like fish to water, especially when you do some of the creative apps ,it offers a much larger canvass. Having tried some of the apps on I- pod touch and the same then on the I-pad , probably made the transition easy. But I- pod or no I-pod, the kids are bound to love it. Here is one more heart felt thanks to Steve Jobs from one another mother.Wonder if Steve jobs would have himself realised how wonderful a gift it would be to autistic children .It is like 'joining the dots' ,part in his speech.The I- pad may have far more applications in a way that he had not envisioned.
Things happen, maybe for the greater good, of which we have no inkling And on that very positive note , I wish all readers a very happy and safe Diwali.

Tuesday, October 18, 2011

October thoughts

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 the Horlicks ad goes Bigger, Better, Stronger every year.
I have been having this recurrent thought off late.When you talk of preparing them for the future ,it still seems a long way ahead.But when you put a question to yourself "When you move yourself away from the scene, can he survive?" Then there seems an urgency of purpose.In the endless stream of schools ,therapists, you are the only constant factor.Survival skills seem to be most crucial.Can he get ready and go to school by himself? No,but there are kids who can.This is what I should be looking at.This is also where probably setting a process in place helps either by a visual schedule or some other mode where the child does not have to take directions from anybody.
So, then my wait for Diwali Holidays have begun, that I seem to be living in between hols.When Ramam is such a constant factor during the hols ,it takes me a half a day to readjust to his absence,and swing back into action.

Thursday, September 22, 2011

Concrete Thinkers

                                       Our children are concrete thinkers. Maybe, all of us understand that to some extent. We have been cautioned at some point of time, that a particular concept is abstract for them. But how much and what to what extent should we get into specifics is something that I am slowly realizing. It started with Dr. Yamini in one of the story narration sessions for Ramam. I had a book with no text and just illustration and to my mind; it was the perfect book for Ramam to narrate. One look at it and Dr.Yamini (NIMHANS) said it made no visual sense. The story line is something like this. A boy has to get his kite stuck on a tree -top down. In the illustration, the tree top and a boy sitting on a buffalo were at the same height. To Ramam’s mind he has to just stretch his hands to get the kite down. How is he to visualize the tree top is is at a much higher height and the boy is at a much lower level. This illustration was very misguiding. Does he understand what does tree top means? Today, when I read a story, I take pains to see the book is right, he understands the underlying concept. For example, as broad as a banyan tree, and as tall as a coconut tree? Unless he can visualize these trees, can he imagine a man of such proportions? In this story this man’s job is to set the time in the clock in the palace tower. This time I took pains to explain what does “setting the time” on a clock mean? I showed it to him. It is not the same as looking at time.
                                          Later as Sharbani (She is the director of my son’s school, for those who have not read my earlier posts) explained in one of her sessions with her kids, she asked them where the food goes. They had no answer. So she opened their snack boxes and took a piece. So they, answered the food goes to your mouth. After little persuasion they said the throat. But for them to understand it can go to their stomach through the food pipe is very hard. Thankfully, there are so many videos on You tube that they may come in handy to teach our kids. In another instance, in one of the text books, there was a story of a straw, bubble and a stick (I think) trying to cross the river. She said she decided to skip the story.   How much do they actually understand is something that we have to find out? The one question that Yamini has always for me is “How do you know that he knows?”  
                                Somewhere during one of her sessions with the kids Sharbani had told the kids, they can visit the terrace of the school building. They agreed to visit the terrace the following Tuesday. The teacher was not aware of it.  Sharbani had forgotten about it. So on Tuesday the kids walked up to her and reminded her of her promise. I was there when this happened. Naturally, I was very pleasantly surprised. Setting a day and time for the terrace visit was something concrete and they looked forward to it.
                                   So then that also explains why structure and visual schedules work beautifully for them. So long farewell , wishing all readers a Happy Dusshera.                                     
                            

Monday, September 12, 2011

When Kindness Kills


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 his pen. The visual chits said “No clapping hands, No shouting, Eat quietly.”
                                     We continued our starters, and I noticed the gentleman had just ordered beer and Ramam was surreptiously eyeing the ice bucket. He finds ice cubes irresistible.  He started pointing towards it and I knew he will want some for himself. Ramam got up and walked toward the gentleman’s table and I held Ramam back.  I told the gentleman if you lend it this one time, he shall repeat it every time.  And so the gentleman backed off. I told the waiter to fetch me ice cubes and Ramam proceeded to enjoy himself.
                                     Then subsequently I ordered fried rice and a gravy dish for him. Things were going smoothly when again he spotted something on the opposite table.  I reasoned with him that I had already ordered rice and that is what they were eating.  From my position, I could not see the French Fries on the other table.  To make his point clear, he walked closer to point to the plate of French fries.  As if on cue, this old gentleman sprang to life and rushed to our table and began emptying his plate into Ramam’s. All the while he kept telling “I understand mam”. I wanted to ask him “what is it that you understand?” But he showed no signs of stopping, that I physically stopped him from transferring the contents. Meanwhile, his wife joined me and went on and on.  “We have grand children, children are like that, he will outgrow it….blah, blah ,blah….. I said that is not the case.   
                                  Finally, at last or lunch drew to a close and I was about to leave when a third gentleman approached me, and handed me his visiting card. I had not noticed him so far. He patted Ramam and told him, you are a fine chap, a very handsome fellow, and asked me what his problem was? I thought not again. He said his friend’s son younger son was autistic; that they had settled down in Dubai…..
                                    At the end of it I thought I had been in the restaurant for 45 min had hoped for a quiet peaceful lunch in a nook with my son on a weekday, and how things spiraled out of control. BTW the restaurant is named ‘The NOOK’. That set me thinking. If I had not been in a military establishment, people would not have gone out of the way to be courteous. Here the old world charm still rules. If I had probably been in a hotel, people would have probably ignored us, maybe, for some occasional stares that would have come our way. If we had been in United States, his behavior might have been condemned outright.
                          Where do draw the line? The first gentleman made the right decision in backing off, allowing the parent to take the call. All of it is not actually Ramam’s mistake. His only intent was to communicate and he did it in the wrong way. I felt like kicking myself as I was carrying his AAC device (proloquo 2 go) and all I should have told him to use it. Call it sympathy for the underprivileged, or an urgent need to deflect an unpleasant situation, the old man overreacted. Simply put, in this gentleman’s case, it could be a misplaced sense of morality. We are offered unsolicited advice without actually knowing what the problem is. This is exactly what his wife did.
                      This is what Dr. Yamini told me. Many a time, with normal children; the society plays a major role in their behavior modification. They learn to abide by rules, listen to people in authority. For instance, if the janitor, in my daughter’s school ticks her off, it has a lasting impression on her rather than me trying to make her see the point. Recently, the security guard told Ramam to move away, because some digging work was on. Ramam responded quickly. But such instances are rare. Another incident, I remember, was when my neighbor wanted to give me something. In Ramam’s viewpoint it did not belong to us, so he did not allow her give it to me. She said she will bring it when he is not around. I probably should have stood my ground. But how many people do you check. Most times people try to be considerate of their handicaps, or simply ignore their existence.  Also as parents we are overprotective.
                               Sadly, this kind of kindness does not pay, it kills.  Sometimes you want to sing out aloud Jeene do jeene do from the film Three Idiots.
                     
                                    

GFCF Cake Frosting


 I have wanted to share two of the recipes for icing on a GFCF cake. It has been on my mind for quite some time but somehow I have not posted it on the blog. The first is my own creation; yes I was quite excited with the idea. I used finely cut pieces of Bourniville Dark chocolate, (their label mentions use of cocoa butter and no milk products) with cashew nuts,  dalda (hydrogenated oil),  and put them in a blender. I did this as a frosting for my daughter’s b’day cake in July (yes! been quite some time) and she was hugely appreciative of the effort. Decorated it with Marbels (again dairy free). The cake was of course made from Orgran chocolate cake mix.
                                                   The second one is the GFCF vanilla cake frosting.
Also Morappam is another easy to make 40’clock GFCF snack. Use leftover idli/dosa batter. Add finely chopped onions, green chillies, coriander leaves, and grated carrot, to the batter. Take a spoon of oil. To the heated oil add mustard and Bengal gram, and let the mustard splutter. Add this to the batter. The batter has to be deep fried a vessel, uniquely designed for appams. I t is readily available in shops. However, only that  it took me 14 long yrs to procure one. My mother gifted me one too early in life (1yr into married life), I thought, it must be a complicated dish and returned it back to her. Recently I  picked up a non stick  variety.

Tuesday, August 23, 2011

Follow My Heart


Following my heart . Here I am talking about the  to- do list that has been in the making for a long time. It is a  list  that would put me first ,ahead of everything, a list that would probably give me something to look forward to everyday , a to- do list that has got to do with  self development, a list that enhances my growth as a person. It is already sounding ambitious…
                       Not the everyday mundane things such as feeding the kids (yes! It does take effort and time).
·        Hunt for a job – This one I guess will always be on my  to- do list. Here I am trying to squeeze in a job into the those wedges of time when my children are at school, or am not escorting one of my kids somewhere, to some therapy or some class . I want flexi timing, a job that will take a max of 2-3 hrs a day. Besides, I would like to have as many days off as the kids have, cause then I would be doing the full- time mom bit.  Sadly there aren’t too many jobs that way. Also my resume is very restrictive (rather, pathetic, nothing to talk about by way of work experience, the last 17 yrs.) I envy moms selling Tupperware and Amway products. They are at least doing something….Somehow my life only seems to be revolving around my kids.
.                          Get down to more realistic things…..
·        I should get more tech literate, at least be able to download apps, upload photos on the blog. Tinker around with the blog list. The blog is beginning to look dull without any colorful photos. I see some amazing photography on the cookery blogs.

·        A Sudoku puzzle /Cross word everday. Let me make some humble beginnings.

·        Pranayam everyday…?
·        I would like  one day , to join Shiamak Davar dance class
·        Visit my Veena teacher; meet some of my old friends if and when I go to Chennai.
                                      Is anybody interested in my wish list???!
             

Friday, July 8, 2011

A New Beginning

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 encourage and monitor social skills which can then be translated to more general situations.
             There is always this confusion in our minds as to the right things we can do for our children/ or the fact that are we doing enough?  For now, he seems to have settled down in Bubbles. That is a huge relief because I really want him to make huge strides in his communication. He is lucky to be with Sharbani at this point of time.
              I wonder if it is the age factor he is becoming more ‘autistic’, in his insistence on us wearing a particular set of clothes, things being in their places, (picking up a vessel form the kitchen sink and placing it back on the table), not being able to accept his father’s presence mid way thru dinner. It is worrisome and every time there is a setback, you begin to fret, question yourself, and pull out your social stories …. We have been at it for 11 yrs now and there is a pattern to it. Every time you are down, you pull yourselves up, and just keep going. Sometimes one honestly wishes things are a little easier.
                   BTW, Ramam cleared his OBE-1 which he appeared from ASHA. That is some some news to cheer!

Saturday, June 18, 2011

Bringing up Isha

Recently ,  I , my daughter and Ramam had gone for a walk and my daughter told me in all seriousness, "Amma , Ramam must never get lost". I agreed with her but the reason she gave me, startled me.She said "Amma , he cannot even beg." Hearing it from my 6yr old daughter, I wondered  what an uncanny thing for her to say. I narrated this talk we had  to my husband , in her presence .He added, that she will have to probably have to look after him after our time, she immediately replied, that he will have to fit into her marriage or probably married life is what she meant.
                        So many things that my daughter understands , speaks , recalls  amazes me, then all leaves me with a feeling of sadness , how much my son has lost out in life already. Looking at some old photos , she can recall the dress she had , where the table had been placed in the room . Having a child who is so outspoken, can also have it's heartaches. There was this ad for Johnson baby oil , on TV, the mother giving her baby an oil massage. I was watching the changing emotions on her face. I asked her if she remembers  me doing all this for her, she just clamped up and said, "I don't know if you did all this for me ".I was hurt. For a girl who express her views on anything and everything under the sun she said , "I don't want to talk about it."
                       In all fairness, she also gives me compliments also ," You are already so good , Ma". Even as I type this, I know , Isha is not going to be happy reading this , years down the line.  She will be unhappy I shared this on a public platform. I am coming to  terms with the fact, that she is quite independent, has strong views and has accepted our family the way it is. Some-days , I warn her that  evening, I may get  delayed by 5-10 min in picking her up back from school as Ramam has a therapy . She is ok with it, as long as I have informed  her in the morning. She loves Ramam for sure, plays with him, but she also clear about time that she wants to herself. I am told by other parents that the siblings ,are generally  more mature, intuitive  and independent than their counterparts.All I can do is nod my head in agreement
                       
                              

Thursday, May 26, 2011

Education And Vocation


Florence  Church send me a link to her blog  that boasts of 10 colleges offering special programs for people on the ASD spectrum. This is wonderful news. These colleges offer programs which include support groups, special classes and assistance. Only the costs seem  a little prohibitive even by American standards. But then that is the cost of your degree. This is the link to her blog. 10 Impressive Special Colleges       
                                         Here is another website that I came across Jobs For Autism .There is so much happening that it feels good. Recently at the Global Autism Convention, Mr, Thorkil Sonne, Founder, Specialsterne and specialist people foundation, Denmark, spoke of his efforts where he has employed people in the spectrum in the IT industry. He is also a parent. He has 7 yrs of market experience.To know more you can visit their website specialist people 
                               Back home, Meera Raghu is setting up a vocational centre in Bengaluru.  Her contact number is   91 99453 37533. She is taking adults/ children in the age group of 14+. She is in the process of registering new candidates for this academic year. As mentioned in one of my earlier post there is also the vocational centre set up by Mrs. Hema Nataraj.

Sunday, May 8, 2011

Global Autism Convention


The global autism convention is being held in Bangalore on the 19th, 20th and 21st of this month at NIMHANS convention centre. Various institutions from Bangalore are collaborating to make this event happen.  ASHA (academy for severe Handicaps and autism) , Autism society of India, IRC, KPAMRC, Spastics Society of Karnataka, St. John’s Hospital, Parivar National federation of Parents’ organization. The Key note address is being given by Ms. Merry Barua. Speakers both from India and abroad will be addressing the gathering. Besides workshops are also being organized on various topics on information and computer technology, play therapy to mention a few.
                   For more information, one can visit their website. http://www.autismconventionblr2011.com/. The registrations are on. More importantly they have organized for respite care for the three days at the venue @Rs.200 a day. For parents who have already registered, and for those who would like to attend and wondering where to leave their child, this is a piece of good news.
                         I understand a huge amount of effort has gone into organizing a meet of this magnitude. It is in the interest of caregivers to avail this golden opportunity. For more information you can also contact Kannika Iyengar   Kannikaiyengar@gmail.com .Her contact number  is 91 99800 16052.

Monday, May 2, 2011

Divine Interlude


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 usual activities, rope, trekking, bit of water play….Isha was the first to volunteer for the rope activity and Ramam followed suit. The treks were beautiful and the last one lasted about 2 hrs. Gave you an idea as to how much you can push yourself. The team of  NALS were very cooperative, and cheerful. Akhila also gave them a briefing on autism. Never miss an opportunity to spread awareness. The interest was genuine from their side.
                One memory that stayed with me and that I want to share  is this. Some of our kids are sensitive to getting wet. While trekking, there were small rivulets and puddles on the way. This mother was careful, that her son did not get his shoes wet. Her son is 20yrs old and  has motor difficulties also. In a moment of exasperation, trying to get him step on the stones and not water she sighed and said “My dear son of God”. I was right behind her. The phrase somehow sounded very soothing and beautiful to me at that point of time. I looked at that boy’s smiling face and felt he indeed was very dear to GOD. Somehow the utterance changed the connotation, the situation itself. She could have shouted at him, cursed him. I do it sometimes and I revert to my mother tongue when I curse.  I instantly felt what a wrong thing it is to do that. These children have but us, their immediate family. A Christian, the mother must have not thought so much while saying it, it is just a way of expression for her, but to me it sounded very right. The way the mother handled the child, I felt God must be choosing the parents carefully, although I deny the theories we are the chosen ones.
                  So that‘s it. But we 4 earned a well deserved break. Cut off from civilization, in the pristine beauty of nature, it was one of our best holidays.
                               

Thursday, March 31, 2011

Camping With Ramam


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.
                                                        The camp was being organized by the adreno group. Ramam enjoyed it from the word go. The excitement of the trip caught on to him watching me pack and he was up at 3 in the morning! He decided to sit on a 3 seater in the bus, decided on a window seat, listened to music on his i-pod, nibbled on his snacks in the bus ride. It took us about 3 hrs, 130km from Bangalore.
                          On reaching the camp we unloaded our stuff, had some replenishment, and set out for the rope activity. Later had lunch, took a breather and set out for trekking in the evening.  Albeit  it being only a short trek, praise is still due to all the  mothers especially the ones of the younger lot who came along ,the little ones tagging along in their diapers. All of us were busy clicking away photos, the adage the more, the merrier.  The weather was just perfect, breezy, cool………
                                  Got back, there was a round of circle time with drums and music and some good fun around the camp fire. But, by then Ramam was exhausted as he had started his day very early. Ramam was thrilled with the idea of sleeping in a tent, and was overjoyed I was carrying his pillow and bed sheets. Just the look in his eyes said a lot. The volunteers pepped up the fun quotient up a few notches and were in the process enjoying themselves. Nilima, an art therapist also joined them in livening up the proceedings. There was a hostel adjoining the camping site .The children staying there also joined our party. It was heart warming to see such small children playing  host, always ready to help us with a bucket of water( we were using their restroom facilities) or simply exchanging pleasantries with us. The next day we set out for still water rafting, had breakfast and began the journey back to Blore.
                                  The beauty of this camp as I see it was the pace, the activities were well spaced out giving everybody enough time .It was never hectic or strenuous. All the children and parents got a chance, be it rope activities or the boat ride. It also goes to show the mettle of the staff, mothers, organizers, that the event progressed smoothly, with practically no hitches. The adreno gang was superbly efficient, ensuring everybody was comfortable. The children and mothers were ready to move on notice, food was served fresh and hot, everybody was cheerful and smiling. I even squeezed a short game of throw ball. The best part being the children cleared up the camping site after the pack up sending out a clear message of social responsibility.It was a tenet issued by Sarbani right at the beginning, no messing up the bus or the camping site.       
 
                                    The event was not meant to be a picnic or a family together, but it turned out to be all that and more. For the first timers it was a very different and refreshing experience. The children also surpassed the expectations and enjoyed themselves. Experiencing something very different from your city life, trying out activities of altogether of a different nature all of it had a cascading effect making it very memorable.
                                                    
                                             
                   

Thursday, March 24, 2011

Building language skills


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 therapy is on thru the waking hours of the child, it is not an intensive 8 hr therapy to be done  and be done with it. One doesn’t need a specialist to do that.
Secondly, when working on language for our children we need to focus on the semantics and pragmatics and the syntax …………. (Syntax -my son’s speech OOPS! language therapist added)The semantics is the meaning of words and phrases, while pragmatics is how to use these phrases, words to communicate appropriately in a social context. Syntax, of course is grammar, the tenses, verbs…
Thirdly, move form concrete to the abstract. Start with objects, who is this pointing to an object-to a picture to with whom did x go with..., which is a much higher level.
Fourthly, Breakdown the complex skills into the simplest steps, as there are no shortcuts, teach in a naturalistic teaching, ensure errorless teaching.
Fifthly, the presence of the third person in a therapy session, Dr.Yamini insisted is very important, because the third person models the behavior for the child. Posing the right questions, answers and behaviour. This is probably what my daughter Isha is doing.
Sixthly, encourage pretend play. Behaviors are systematically reinforced. She also dwelt on the theory of mind briefly to the end of the session.
Seventh, some simple activities, Dr. Yamini suggested like checking who is at the door. If the child looks at the person and runs back to you without telling anything the communication intent has been achieved. That would b the first step. Target generalizations. A simple, how are you question can be asked and acknowledged in different situations in different ways.
                                    To sum up, my therapist, corrects me every time, when I use the word vocalize. He says we are not trying to make Ramam vocalize rather we are trying to make him verbalize meaningful sentences. Phew, that is some semantics. (Am I right?)

Thursday, March 3, 2011

New Law


I would request all readers reading this blog especially from Bangalore to give this post its due importance.
For people who are totally unaware of the new disability act coming into act shortly, I would like to provide some background information. A new law is being worked on for people in the disability sector as a replacement of the 1995 PWD (persons with disabilities) act. A working draft committee with a handful of very committed members (as I say handful, in terms of comparison to the number of people affected) is looking into it. This is an issue close to all our hearts especially the parents.  Read on. This is an abridged version of a mail that has been circulated among the members for a better understanding of the law and its shortcomings.
The issues are
·         The mandate of the committee, and specifically the one law multiple law issue
·         Inclusive education versus appropriate education
·         Consultation with the wider sector
·         The worth of parents with disabilities.

The mandate of the committee, and specifically the one law multiple law issue

    We are trying to promulgate a comprehensive law that will take into account the considerations of rights of all people with disabilities. However people in the disability sector are divided on the interpretation of this issue. One section wants all other disability laws including the existing National Trust Act be repealed, arguing that having separate laws will stigmatize persons with intellectual disabilities, the deaf blind, autism etc. However, persons with intellectual disabilities, the deaf blind, autism etc, which is the disenfranchised sectors, the population that the National Trust serves, are not in favor of repealing these acts right away.  Those of us who belong to these sections know that when we have one legislation for all, then the marginalized will be the ones who will be left out as happens even now. Yes the rights of all persons with disabilities should be covered under this new comprehensive rights law. But that does not prevent the existence of other laws, especially to address issues that concern those disabilities that have very high support needs.  Autism is one such sector where  even most adults need attention and support 24x7.
Inclusive education versus appropriate education
Although to send our child to a mainstream school is a dream all parents cherish, but unfortunately it is not possible in all cases. Another issue is the case of inclusive education along with special education versus inclusive education banning special education. As a mother of a child attending a special school, it is an option that must not be ruled out. What happens if the child is not coping up in a mainstream school? Also the mainstream schools will also take time to get better and equipped to meet the needs of the special child.
Consultation with the wider sector
Initial participation by members in various committees form the developmental disabilities were poor. One area of controversy regarding the wider consultation has been the question, who decides which sections of the disability sector should attend. Who determines this, the group with the largest presence??? I t is in this troubled scenario when state level consultations take place there is a need for adequate representation from the Autism spectrum Intellectual disabilities sector.
     The worth of parents with disabilities.
There is no doubt that persons with disabilities should be their own advocates and spokespersons. There is no question that nothing should happen for persons with disabilities without their consent and participation. One does not dispute that for those with mobility impairment, visual impairment, hearing impairment, and so on; they are the best persons to decide their destiny. Also they are capable of doing so.

     But what happens when these rights are intertwined with the rights of those disabilities that cannot articulate their rights?  My son cannot communicate what he did in school, how can he be expected to articulate for his rights. Should these disabilities go unrepresented because they cannot represent themselves? To trash the parents right to be supports for them, to trash parents right to articulate their rights for them, is just so unfortunate. What makes it more disturbing is that many of us parents feel so overwhelmed with the day to day struggle. We are their advocates and we must hold their hands.
Disability discourse rightly talks of giving power to Disabled Peoples Organisations (DPOs). At the same time parents, of those persons with disability who their rights, need to speak up and demand that Disabled Peoples Parents Organisations (DPPOs) have a right to speak for persons with disabilities such as autism.
        Thank you for the patience and time you have taken to read this. There is more to the law. As it concerns your child please take time out to read the proposed draft of the executive committee.

How can you participate?
To garner all the inputs from ASI and evolve a Consensus on this very important issue to present at the Bangalore Consultation, we will be having a meeting, details of which are below:
Kindly confirm your participation - with your name, organisation and contact details and any specific access requirement by the 2nd March 2011 as this will help us in making the necessary arrangements for the consultation.
As agreed during the State Coordination Meeting on 15th Feb 2011 at the Office of the Commissioner Disabilities, CBR Forum will be hosting the consultation with persons with disabilities, parents, NGOs, representatives from Govt. from Bangalore Urban District on the Working Draft on the Rights of Persons with Disabilities Act, 2011.
Some of the topics covered would include the
a)      The 5 non negotiables:

·         Parents to be acknowledged as having same status as persons with Disability to voice concerns of their ward. Wherever there is reference to Disabled Peoples Organisation, Parents Organisations to be also mentioned.
·         Legal Guardianship should remain intact in addition to Supported Decision Making. (ref ; pg 38, Sec-9 B)
·         While we support Inclusive Education as an ideal that all parents would aspire to, we need specialised services and special education services for some of our children. We do not support ONLY inclusive education.
·         Separate Training Facilities need to be available with Specialized Teachers to take care of persons with higher support needs such as in the case of Severe Intellectually Disabled person.
·         More Fund and grants to be allocated for Research and Development and Intervention programs for Disabilities such as Autism, which are relatively new, and less known.  
b)      Providing land at subsidized rates for these children, establishment of caregivers and their training…..
                 For those of you, interested in attending, I shall be happy to forward the complete briefing note that has been circulated. My id is vijirajmohan@yahoo.co.in /viji.rajmohan@gmail.com

The objective of the consultation is to: 
 
" To provide and overview of the content in the Working Draft 
" To collectively identify Gaps/ Areas that needs to be addressed in the Draft
" To document these Gaps and submit to the Commissioner (Disabilities) and SNAC by 10th March 2011

The consultation will be held on 7th and 8th Mar 2011 at Don Bosco, Milton Street, Bangalore - Tel: 25494760/ 25494758. You can confirm your attendance with Ruby Singh,  rubysingh_india@yahoo.co.in  ( 9741418103) /kavitha - kavitha@kilikili.org
                    



Monday, February 28, 2011

My experience with the census


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 was now or never. Then finally he acceded to my request but did not turn up. I was fuming. I blamed the government, the inefficiencies, and the state of affairs. I thought I will shoot letters right, left and centre. I was thoroughly disappointed.
                               The following week , to my surprise, this gentleman turned up at my doorstep. I have never been so pleased to see somebody. He was courteous, and I explained autism in detail to him. I felt relieved in some sense to have done my bit. So please next time a census official knocks on your door, mention the problem. It comes under the sub heading numbered 6 in the disability category. This is crucial, as unless we have the numbers we cannot push the government to take notice of the problem.
                                    Also there are some visual schedules developed by the Dr. Nandini  Mundkar , Director ,CCDC , Malleswaram  on sale. Visual cards for toilet training , brushing….There are various  laminated cards for various activities, each costing RS.12. For more information on centre for child development and disabilities visit their  website www.ccdd.in or write to us at ccdd@airtelmail.in

Friday, February 11, 2011

Kudos to this team

A friend of mine called me up and told me about this article in  The Hindu Metro plus today's edition. The chefs of Hotel Sheraton have been creating mouth watering GFCF receipes for the students at V-excel educational trust. For those of you who have not heard of V-excel, the school handles CP and autistic children.They have implemented this program for the children for the last  2 years  in the school with good results.Three cheers to such wonderful meaningful partnerships.
Read on http://www.hindu.com/mp/2011/02/11/stories/2011021150871000.htm

Thursday, January 20, 2011

Events in January, Bangalore

        1.  There is a workshop on enhancing the teacher’s creative and cognitive potential organized on the 26th jan at akshayam preschool and resource centre, C.V. Raman nagar Bangalore. The registration charges are at Rs.250 only. The contact numbers are Mrs. Indira Swaminathan 919880815617 and Ms.Manjit Kochar 919845699451.
                  The workshop is designed to equip participants with techniques and ideas on how to use teaching aids/materials more creatively and innovatively. The workshop is open to Parents, Pre-school teachers, Primary teachers, Special Educators, Therapists and all others who would find this topic interesting and helpful.

         2.    KILIKILI is organizing the Kilikili - Habba at M N Krishna Rao Park.
  Timings from 10 a.m. to 12 noon at M N Krishnarao Park, Basavangudi on the 22nd of Jan.  Activities for the day include
1. Nine Pins   2. Outdoor games: Cricket, Football, Basket ball - organised by Aata Oodanata,   3. Bubble Blowing,   4. Pot Painting,   5. Banner painting 6. Mehendi/ tatoo  7. Snacks
 For further details you can contact Manju at manjursd@yahoo.com or 9900246706.


Wednesday, January 19, 2011

More resources in Bengaluru

Here is the list of two more schools in Bengaluru send to me by another parent. 
The schools are near the Thippasandara area. One is kara4kids and  the other Geethanjali Montessori Both offer integrated programs, kara4kids is really expensive . There are however no therapies in Geetanjali The staff here have dealt with autistic kids.  Also check out my earlier posts on schools in bengaluru.
                              He also recommends another app for the i-pod First words Delux which his son loves. Here are the links to two websites that have a wealth of information http://www.autism-pdd.net/ . http://www.possibilitiesunlimited.in/. The second website is oriented towards education of special children
                     This is yet another link to a blog where a mother raises not one, not two but five autistic children http://survivingmotherhood-mom26children.blogspot.com/search?updated-min=2010-01-01T00:00:00-06:00&updated-max=2011-01-01T00:00:00-06:00&max-results=22  The blog title reads What are they thinking? But then I can well imagine what we must be thinking. Superduper mom?
                                        Many   thanks to Gina for these links.

Wednesday, January 12, 2011

Welcome 2011

This is wishing all readers a wonderful 2011.  After a hectic holiday in Kerala in Dec -2010,   2011 seemed to have started on a good note. To start with Ramam has an ayurvedic dosage regimen in place. I decided to go to Kotatakal arya vaidyashala after reading Krishnan Narayanan’s Autistic musings. This is his second innings with ayurveda. The good thing about kotakkal is that they have an extensive distribution system so I can probably buy their medicines at their Jayanagar branch in Bangalore. I understand they have something big in Delhi too.
                                      The second exciting thing at the moment is  proloquo 2 go which as their ad goes is AAC (augmentative alternative communication) in your pocket. Developed by professionals it is a complete package. Of course, my husband gets all the credit for the research he has done online. As I write this post I am trying to make a brave attempt to analyze the apps available as I am not a very tech savvy person. We also looked at other tools as Grace Picture exchange for non verbals. There are of course n number of applications for ipad/ i-pod touch/i-pod phone available in the market. But the distinct advantage of this tools is that it is offers a complete package. It is very effective in developing sentence building skills. You can edit the way you want with your photos, personalize it your heart’s content. You have a key board to type also. You can work on conversation starters, building a conversation. Editing is child’s play and they have a huge symbols and pictures library to choose from. It speaks out whatever is being typed, like so many other augmentative tools but here you have a choice of speaker (female/male), speed of narration, so many features built in, it works beautifully on the i-pod. We have chosen the voice of Heather and it is quite pleasant on the ears. Some of the apps like uTYpe I Talk the voice sounds very mechanical. Most of the tools that have been developed by parents (hats off to them! They have the time and energy for this kind of a thing) is that these tools are used more often than not for purpose of demanding something. As probably parents we don’t think more than the child wanting to go to burger King/Mc Donald’s!!!!!
                                          Why proloquo2 go. Yes, Ramam is definitely vocalizing better, but the question is how much he can vocalize when he is stressed. One of the reviews we read for Proloquo was by Jamie Knight an autistic web developer. He states the device has empowered him. As a person who has used various tools at various points of time he speaks highly of Proloqou.  He could not speak in college for 4 years as he was stressed out. As for the sign language it is a harsh reality that it is not universal and nobody understands it. This is more socially acceptable, maybe even more fashionable to own an i-pod. According to research all these tools also eventually help the child vocalize better
                                                Now for the downside, it is expensive at $189 and also the initial investment for an i-pod. And yes the  task of getting Ramam to use the tool.  As they say no pain, no gain . But the flip side of it is that it is easy, once you get a hang of it becomes a matter of habit. If rama can tell me some day it is awesome /cool (comments feature) I did be on top of the world. Here is another blog where the mother has reviewed other apps
                                               Lets hope this be a wonderful year for all our children and that they learn something that shall help them lead their lives.

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