Care4autism

The shoot out at elementary school has left me with a sense of despodency, grief, anger. A post on this blog is doing the rounds  http://anarchistsoccermom.blogspot.in/2012/12/thinking-unthinkable.html  My heart goes out to Adam Lanza mother.  There might have been many moments in her life when she must have been concerned for his future and  pondered over the now ubiquitous question "what after me"?   To shoot her, 20 children and then kill himself , it is a huge tragedy.                                         The word 'mental illness' is a black box, none of us can comprehend it fully. Everything is in control , till the unspeakable happens without warning. It is scary to say the least, when kids are on medications for various issue...

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.

ALFAA:  Recently attended the inauguration of AlFAA-Assisted living for autistic male adults. Ruby Singh the founder of ALFAA has taken on this initiative single handedly and that in itself is commendable. As a pilot project, she is taking in 5 kids in a smaller set up. She is planning to move in sometime next year around, to the proposed residential campus on 2.25 acres of land in North Bangalore (near Chikkaballapur).The campus would include • Residential cottages • One storey flats • 24hrs security and health care services. Currently she has a team of physiotherapists, spl educators and music therapists. She would be focusing on life skills. The neighboring villages would serve as a pool of employable care givers and in the bargain create job opportunities for the people of nearby villages. As part of the pilot project she plans to take on the laundry work for the neighboring houses. This will be some of the vocational activities she plans to introduce.(Did I men...

I had written this article for the newspapers, post the movie Barfi. It never got published. One paper was kind enought to send me a reply stating that articles written only by the staff are published. So here it is , by default for my discerning readers :)-. It may be a little outdated , but what with the kids hols and everything else , I just got busy. There you go....                        Autism is back in news, grabbing eyeballs. Thanks to Barfi, the disability is garnering the attention that has been overdue to it. The movie has stuck an emotional chord with most viewers. It has received its fair share of brickbats and bouquets. What has Barfi given us? It has given the parents, caregivers, professionals belonging to this ever increasing community of autism, a captive audience.               ...

Selecting a   birthday gift should n't be  a problem in this day and age. Rightly so, when it comes to picking a gift for my daughter's  friends, the range is huge, and only monetary constraints apply, more so when 30 kids in her class want to have a party for their bday. But selecting a gift for a child on the spectrum is not easy, and I shall tell you why?                        When Ramam was small and we had bday parties for him , some moms would call me and ask what is it that would interst him?And that is where your choices get narrowed down. I would give an honest reply. I would say puzzles,books....... . He was not typically intersted in cars/blocks or  any toys for that matter. At the end of the party I would have enough material to start a therapy centre. Animal puzzles,word puzzles, picture puzzles, wooden puzzles ,colouring books,........

Yesterday, Isha came back from school and wanted to know what "interferring" means. I racked my brains for a suitable answer. I told her in a broad sense  and finally  came up with us. I told her for instance when mom and dad are having a serious conversation and you butt in every now and then, then that could be called interferring. She stopped me right there and told me Amma, but that is interrupting and not interferring. I clamped my mouth shut.                       This is a slightly dirty one. What is a girl with a  continous thick nasal discharge called?........Nosy volcano.                       She wears two long  hair plaits to school.Today morning , just before leaving to school, she  told me "You comb my hair re...

Ramam had his first episode of seizure attack this month.  Least expected , it came as a jolt on a Sunday afternoon two weeks back. Thankfully, his EEG and CT Scan have come normal but the worries persist.  An  addition to  a growing list of  concerns . It hit my husband very hard, as he watched it unfolding.I was not around as I had gone to call for help. Mercifully , being a Sunday afternoon everybody was around to help us out ,unlike a weekday.                      August has been a  month of small obstacles , if I were to put it that way, nothing insurmountable  but like pin pricks nevertheless. Finding    a replacement for a domestic help,  two drivers in succession, whom we were left with but no choice but to fire.  Life continues, despite all these minor  setbacks,  with a will of it's own. We anticipated difficulties administering the anti seizure medication ...

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 ...

Aeir talk lets you make custom made noun and verb flash cards that helps your child learn new vocabulary, sentence formation and of course communication. I think Aeir talk is an excellent app for a non –verbal child to start off. There is no language barrier; one can record in whatever language you choose to, and since it is all in pictures, it is very visually reinforcing. Adding and removing cards is child’s play. Developed by Joe hill, a father with children on the spectrum, it is a user friendly app. If you are looking for an affordable i-pad app in this segment, this is the one. Another app that has caught my interest is Pinterest. One can make multiple boards. Suppose I want to teach verbs I have to look for action words/pictures and pin them on my board. A speech pathologist, has mentioned using the app Tapikeo HD in conjunction with Pinterest. I used Pinterest for my daughter for 3D geometric shapes. This is another good app-Language therapy. Priced at $60, the cost is pr...

Isha throws up few surprises once in a while. Two weeks back, I received a call from one of Isha’s friends’ mother. She asked me if the party is confirmed. I was a little taken back and asked her which party. She then told me Isha had invited her daughter for a sleep over party. She mentioned that Isha has also given a dress code .Sensing my ignorance; she asked me if I was aware of it. I told her, she had been planning to call her friends over. Then we mutually decided against it and agreed upon letting them play during the day on the weekend. Later I realized she has extended three invites! Recently, she had some project work to do in EVS. We made a huge chart and she carried it to school the next day. Unfortunately, the session was cancelled. As she did want to carry the chart back and forth, she left it behind in her school. I asked her, where had she kept it in the school. Pat came the reply; I left it in the Lost and Found locker. She assured me it is very safe there. I wanted...

How do they do it? Ramam has had a disturbed sleep last night, has a bad knee injury, cold,...... He is going thru a bad phase of constipation. He went late to school, but despite , rather inspite of all this , he has gone smiling with a cheerful bye - bye. I wish he had been difficult this morning!!!! I love my boy.

Back to blogging after a break.  These  summer vacations were relatively stress free, thanks to my daughter.She is the best volunteer I have had to date. I have been receiving mails from parents wanting to know more about NAET and the son -rise prog.  We do not follow any diet restrictions for Ramam after having started NAET. I think the approach where you keep the child off certain foods during the testing  towards a particular allergen or a group of them in itself must be aiding in the process.It ensures you don't overdo anything.There are a couple of centers in Bangalore. I find the one in Kormangala is slightly commercialised. As in India, as with anything else, there is  a dilution of protocols. They absolutely  do not like any kind of questioning and expect you to follow their instructions in blind faith. Right now, I go to a NAET centre in  Cox town. Her case load is lesser and maybe as  she is still starting out,  she ...

I attended the son-rise start up program recently at Sheffield, Masachuttes. Till the age of 8, Ramam was non verbal, and at this point of time was when I was introduced to the son rise program. I began applying the principles of the son –rise program based on the material I had, supported ably by the videos on You tube . Then I saw a huge leap in his language skills, from being totally silent .The first aah’s and ooh’s emerged. The past couple of years he has been at a one-word level; stagnating. This has been extremely frustrating for us, as his parents. Another concern, being his lack of articulation. Out of sheer desperation and anxiety I went back to the son-rise website began viewing their videos again. I was somehow convinced when all other approaches have failed be it, VBA, or the speech therapies, this will again kick start his dwindling language skills. At one point, he was again becoming totally silent. The Son –rise program story begins with the journey of Bears and S...

Apps On Ramam’s I-pad Broadly I have classified the apps on Rama’s i-pad as follows. The apps on the I-pad are a mix of what both Ramam and my daughter Isha use. There was a time, when we started the diet for Ramam, I did extensive reading on it, am now doing it again for the apps. More first, on the language and communication apps. Just like you begin anything new, in the Indian tradition by invoking God, let me begin with Om Steve Jobs Namaha: The Communication apps: The highly recommended apps for a child on the spectrum –Proloquo-2-go right from Carly to almost everybody, dealing with autism. I have already written about proloquo on the blog. The APP as, I would say. Expensive but worth it. There are also many other apps, Tap to Talk, My talk, Grace app … The Language apps: Story builder and the sentence builder apps by the Mobile education store. I tried the story builder app first. This has three different levels of difficulty and you can suitably set it to your child’s le...

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...