Monday, December 15, 2014

Literal thinkers


                                             What is about literal thinking and autism?

                    Ramam’s friends had come over in the October holidays. He was very excited. And his expression manifested itself in few joyous shouts and screams from him. I then asked him to show his friends a tray full of glasses filled with juice. I got back to doing my work, when one of the mother’s remarked. “He is doing what Viji asked him to do”. He was literally holding the tray high and standing in their midst.  My intention was to ask him to serve the guest. So much for literal thinking and my failure to communicate to him.


                         If one actually looks at the way they process information, shifting their attention to the speaker, trying to process the words, and decode the meaning  , adding to the burden are all the prepositions, conjunctions we use while speaking. Communication difficulties makes it harder for them to clarify, and again as language usage is restricted, it has a snowballing effect.

                              I ask myself, what would the word “snowballing effect" mean to an individual on the spectrum? The children find it very difficult to read the verbal and nonverbal cues, the intonations, and the sarcasm in our voices. How can this issue be tackled? Here are some recommendations:


Don’t say things you don’t mean:    This was one of Merry Barua’s lectures I attended initially, she said don’t say things you don’t mean. For example, “If you don’t do your work, I will never speak to you”.
Say concrete things:   Instead of telling Ramam good job, it makes more sense to appreciate by saying, good writing.

Be careful with the words you speak: I have already given an example of it in the opening para.

Provide exposure to figurative language:  Use idioms, expressions, feelings, at an appropriate time, with the conscious effort to teach them. found this on the net.



                                This post is the second  of the series where I wish to go beyond our personal journey . The first one being on Scripting . Be back soon with more posts.
                          

A fresh start

This blog has always been about Ramam. It has been about our interactions, joys and struggles with him. I now want to embark on a slightly different journey.  My blog has mostly been about personal anecdotes but this time around I would like to interlace it with my readings on the net, research a topic a little in-depth. I could have started in the New Year, but any day is a good day. If any of the readers would like to suggest a topic for discussion, I would like to take it up as the next topic.

                                          Looking forward to your cooperation and encouragement.

Thursday, December 11, 2014

Scripting


           Off late  Ramam has began saying  many a  things that happened  in the recent past, or something he has done in his school. Sometimes he talks about something a week old, and starts talking about it out of the blue. And since his articulation is not clear , we have a difficult time getting to understand. Yesterday he was all excited about the Christmas tree he had decorated in his school. It is in his recent memory, but  I am not too sure if the event happened on the day he related it to me.                                          
                                    He spoke of the decorations , he wanted to build a house with blocks and put a roof top .[This was the first time he build a house and wanting to put a door , windows and particularly a roof for the house]. Despite this positive trend , many a times he gets stuck with some words and phrases and repeats them over and over again. His favorites are colors and shapes. Pink triangle, blue circle.  Again we have devised strategies  (as always) to deal with this, we ignore what he is saying if he repeats himself over and over again or say something like talking about shapes over. I just happened to chance upon this post on Emma's hope book Scripts - A communication bridge. And then I felt it might just be his need to communicate or his need to say something and not coming out in the intended way.
                                   
                               
 "In the past I would have gotten all tangled up in the specifics of what she was saying.  I would have sought to reassure her about whatever it was.  But now, I understand that these scripts can serve as so much  more.  They can serve another purpose.  They are less about the words spoken and more about the emotions that are attached to them.  So when Em is happy she will often speak of some of her favorite people.  She might reference something that happened more than eight years ago, but that made her feel safe, or a specific time when she was really happy.  I've always thought these memories were nothing more than that."

                                                 
                One blog led to the other and soon I was reading "Echolalia and scripting : straddling the border of functional language"- Musings of an aspie.  Functional language that we speak refers to the social function of language or pragmatics.  She speaks of an incident when she had gone to a restaurant,



Me: I’d like an iced tea, please.
Waitress: Would you like sugar?
Me: No, I’d like it  . . .
Me:  [can taste what I mean but the word is nowhere to be found]
Me:  [wow, cannot even produce a word that is close or any word at all]
Waitress:  . . .
Me:  [clearly, this flaily hand gesture is not conveying what I mean, is my mouth stuck in this open position now? will this silence go on forever?]
Waitress: Unsweetened?
Me: Yes!
Scripting can grease the social wheels and I think those of us who have trained ourselves to pass will often unconsciously default to scripting or echolalia simply to conceal the fact that we can’t find the right word or we’ve lost the thread of a conversation. After all, there’s often subtle, unspoken social pressure to keep a conversation moving along.
Scripting becomes nonfunctional when an incorrect or inappropriate script is offered up automatically by a brain pressured to respond.

                                    It is a must read post as she brings forth the difficulty they experience in producing the right words to say in social situations. Most of the time you ask Ramam , the usual social questions, how are you, how is the food, how are you feeling, how is the program , his answer is always the same , GOOD. As I now understand that is the default script, his brain has settled on.



                          

Wednesday, December 3, 2014

Inclusion and disbility

                               Recently , I attended the India inclusion summit, and was accompanied by two mothers  enroute to the venue, and whose kids were in the age group 7-8 years. The conversation soon veered to  discussing kids. One mother said "I was worried my son should wake up before I leave, and I had prepared him yesterday that I would be going . I was so relieved when he woke up before I left and told him I will be back in the evening." Immediately the other mother asked her  " Does he understand the concept of Evening?" And I thought how weird, how challenging is  the problem of autism. I was for the the most a mute spectator and most of the time I tuned out. As parents we know the level of preparation that goes into every event, or change in routine. They were discussing medicines, therapies....... And one mother said ,"My son wanted a different chapati, and kept shooing away the chappati I offered him. I knew fully well what he wanted but waited for him to come up with the expression , different". In between one mother butted in and said " He is aware of many things, he knows all the latest versions of cars in the market, but...... he has to stim, he cannot sleep in the nights. The list is endless.
                               Sadly to speak with so many so called "virtues" our kids are marginalised to the sidelines of the society. There was hardly any representation of autism in the summit. To be fair, the summit itself was superbly organised , well presented. There were many truly inspiring stories, thought provoking speeches. The morning half especially was emotional.
                                        One of the speakers mentioned all of us have disability somebody cannot sing , somebody cannot swim, somebody has no money. yet we all live. I understood the spirit  with which he said and applaud him for his viewpoint, but then I also wanted to tell him that is hardly a disability. For autistic adults, to be accepted in society , having themselves heard, is a huge huge challenge and cannot be trivialized. An adult with cerebral palsy. an adult who is blind , handicapped all of them can advocate for themselves, but not an adult with autism. I hate it when people use euphemisms and call this population as being differently able, gifted, because it involves not just hardships for their families but to them as well. When there is one person with autism in the family, the whole family lives, eats , and breathes autism. Simply because it cannot be any other way.
                                                 I liked this particular speaker an ex army officer who is a paraplegic , and said how he was asked to be on some disability committee. And he asked why disability committee, I can serve on other committees as well that address different issues. I don't consider myself disabled. Another lady said she feels wheel chair "liberated " and not wheel chair "bound". So much for the indomitable fighting spirit.
                                       Having said good outcomes do come out from such events. I got to hear a lot of progressive thoughts, corp orates trying to include more  disabled people in their work force. Arnab Goswami has pledged to take it up as a cause and give it a lot of media coverage.The following year a  mother  whom I hold in very high regard has promised to put her son on stage  and represent the ASD community. And I am so much looking forward to it.  
                         
                             This is  a song very close to my heart from the movie Chak de. I can do a bad translation of it.It says  do something, hold on to some values and do whatever it takes to achieve it.
 Kuchh kariye, kuchh kariye, nas nas meree khole hay kuchh kariye
 jid hai toh jid hai jee
Koyee toh chal jidd phadiye, too bedarayiye ya mariye .

                                     
                               

Friday, November 21, 2014

Proloquo2 go

Recently, I , my daughter and Ramam were on the bed humming some songs. Ramam turned to me and said " I don't want to sing Tamil songs". I remembered the Cadbury Bournville ad which says "You have to earn it". I was so happy and this  happiness is truly well deserved and earned. I may be boasting but then I don't care.

                   This is not the longest sentence he has spoken but, the clarity of thought impressed me. It has been a very phased improvement from , No singing .... I don't want to sing..............I don't want to sing Tamil songs. What excited me was the use of the word Tamil to specify the language, put it in a sentence and express himself .

                    When you are counting, how many words can your son speak, is it a phrase or a sentence how long is the sentence , every small victory gives me a huge kick. However the intention of this post is to talk about the AAC app Proloquo2 go . I have not been able to put it to use in the conventional mode as it was meant to be. It has been just another app on my iPad for sometime now. I knew it is an excellent app but not knowing how exactly to go about it, it just was there and Ramam would occasionally type using it.

                     Coming back to " I don't want to sing Tamil songs",  of late I wanted Ramam  to be specific when he requested for music. There is a folder FUN in the app and sub folders such as Music, games, leisure and whatever you choose to add. In the sub folder music , I again added buttons specific to the kind of music he likes. One of the buttons was Tamil songs.So when he made that remark, he has generalised it as well.
                  
                   Just tried  using proloquo2 go along with RPM . Another primary use of Proloquo , I think is helping with sentence construction as he chooses words from different folders as action words, pronouns, describing words.He rewrote a sentence "Taxi came at great speed" from a text book, to " Taxi came fast and subsequently changed it  to really fast in Proloquo2 go.  I am really really hoping things open up for Ramam on the communication front.
                       

Wednesday, November 19, 2014

Hooray!

No routine transfers for govt staff with autistic kids


NEW DELHI, Nov 17, 2014, DHNS:
Central government employees who have autistic children will not have to face routine transfers any more.

Minister of State for Personnel Jitendra Singh on Monday took the decision to include autism in a list with the Department of Disability, after the Department of Personnel and Training (DoPT) examined the scope of bringing the developmental disorder under the definition of disabled.
“Considering the fact that a child with autism spectrum disorder requires constant support of a caregiver and it would be imperative for government employees with such children to take of their child on a continuous basis, it has been decided to include ‘autism’ in the term ‘disabled’ in the office memorandum,” read a DoPT.

                     I am not sure if this benefit is extended to the armed forces also.

Thursday, November 6, 2014

Useful websites

Came across these two websites on FB groups.

www.readworks.org.

The website has lesson plans and units, reading passages, The lesson plans are again subdivided based on skill and comprehension. However the books listed are quite expensive. The lesson plans can be adapted to the books one already  has. The reading passages are free and very good. They can can be clubbed with the books mentioned. There is so much to comprehension from drawing conclusions ,sequencing, character analysis. it gives a structured approach both grade and skill wise. It is a wonderful website. I recently tried it with a book I had with me " The snail and the whale" by Julia Donaldson. Ramam enjoys this book, and I modified the lesson plan to suit this book. Soon , was comparing the physical and character attributes of the whale and the snail , generalized it with Ramam and his sister ,Isha. I would not have thought of doing all of this on my own.


News for your classroom
   It is new for kids,by kids. Hosted by the scholastic group, http://magazines.scholastic.com  , one can find current event articles.Not all of it might make sense,like US elections, but one can pick and choose , but it is a good way to engage our kids  They have classroom magazines too, both print and digital. Watched one of their videos, it has been put together very neatly in simple words.





Monday, October 27, 2014

Bio medical intervention

Another Diwali has come and gone. Another year gone by. Year endings make me a little jittery and introspective. Standing again on the brink of  taking a decision as to do decide whether to attempt another major round of biomedical intervention and detoxification for Ram, but this time around planning to do it on self too  to feel the "effects" so as to speak.
                              So many names doing the rounds of detoxification from the milder ones as living clay, Dr. Hulda Clark, Klinghardt to the big ones as CD protocol. Then there are the simpler ones as simple as giving two  neem capsules a day  to detox. Another question  I was asked "what are you targeting  metal, parasite .....what detoxification". Amazed at all mothers who are so clear headed on their choices whether it is bio medical intervention or use of teaching techniques.
                             The only thing I am clear is that I have to do some thing more than just teaching and therapies. The desire to have a meaningful converstion, shift from words/ phrases to more sentences , better engagement with people is so strong that seriously contemplating another round of bio medical intervention. Mothers who were anti bio med intervention so to speak are swearing by the CD protocol. It is making it all the more alluring to me.
                                May this Diwali bring in joy and happiness and the strength to take decisions that will help our children.
                             

                             
                             



















                              

Thursday, October 16, 2014

Music in our house

I begin my day everyday with the song Ekdantay Vakratandaya by Shankar Mahadevan.( everyone has their OCD's) This is followed by my daughter's request for the Rihanna- Eminem song  The Monster. Ramam grew up on a staple diet of Pink Floyd, Dire straits, Hotel of California, Fusion music ,......... all my husband's choices. And in between I would also administer my doses of classical music.                                
                                       But with my daughter growing up, she is bringing in  new sounds of music, Katty Perry, Rihanna....... And more importantly she wants to share  her music. Listen to this one , and that one. Ramam is yet to sample this brand of music. And so now, there is a major confluence of music at home. When at home, she plays hers, in the car it is Ramam's choice.
                                     Never thought , there would come a day when Isha would have  a say in the choice of music. It is a novel experience  because with Ramam our choice was his
                                      And for now, our choice of music  is being dictated by our kids and not the other way round..
                                     
                       
   

Wednesday, October 15, 2014

India inclusion summit 2014


The india inclusion summit is  being organised in the month of November.  One of the highlights of the event is a charity dinner on the eve of the summit, Nov 28th at the park plaza in Bangalore. The summit includes speakers from diverse fields speaking on the topic of inclusion on one platform. Prominent among the speakers in the past are  Dr A P J Abdul Kalam, Justice Santosh Hegde, Kiran Bedi, Anita Nair, Thorkil Sonne, Devdutt Pattanaik, Malathi Holla, among others.
The most awaited speaker  I would be looking forward to this year , would  be Temple Grandin.


For more details you can log in to their website
http://indiainclusionsummit.com

Monday, October 13, 2014

RPM and Son-rise

RPM ( Rapid prompting method) and Son rise  techniques presume  the same things , the competence of the child. The abiding faith in both these techniques is that the child holds a lot of promise.
                       The RPM is a technique that was started by Soma Mukhopadhyay to teach her autistic son Tito .
                              I started RPM with Ramam  about two- three month s back. It is very encouraging when he requests for RPM sessions which he calls TALK Time. In the initial sessions , it is imperative to boost the child's confidence and ensure he gets to give the correct answers. There is little testing involved in the initial stages.It can be used to work on academics, communication....what RPM has done is, it has  encouraged me to look at academics again. As a matter of fact , RPM has encouraged  me to start teaching him again. I was focusing  only on communication last 2-3 years.
                              I am a newbie  at this. RPM has had its share of controversies.  However , it has given me a new focus. Unless you teach them, how do they learn?  They might  learn some from the environment, but as they sorely lack in pragmatic language they are not going to question or request you . My nine yr old daughter is so inquisitive and she wants answers to all her questions.
                     Recently I did an RPM session with him on a book "Just saving my money". The next day we opened a piggy bank for him at home. He was excited with the idea. Next day he mentioned the word  saving account. Although I am not sure, how much has he actually understood.  I involved him in online shopping for Diwali. He was happy to receive the Tshirt he had ordered.

                  As I mentioned earlier, both the techniques give you hope. The blog  by lencrandall helps us understand RPM.   Soma's  books also help you understand the nuances as what kind of a learner your child is . Is he an auditory/visual /selective visual learner. This helps you to adapt your teaching method to suit the child.
               
                 RPM as I see is another chance to take control of things for Ramam and teach him something new everyday.

                     
                               I

Tuesday, August 5, 2014

keeping track

          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.

                             Another excellent resource I came across is this blog The autism helper. What an coincidence! I had attended a workshop on setting IEP goals, and this page on writing  IEP goals concisely gives you an idea on how to go about it. The 2 hr workshop has been summarized in this page. It is an fantastic resource for both parents and professionals alike.
                     
                            One does feel bad , that so much has been lost out for want of structure in lesson plans, focus ......  .priorities have shifted  often, sometimes it is communication, sometimes it is academics. 24 hrs in a day falls short to achieve the goals. Choosing the most important goal among st the many goals is a challenge in itself.  Just considering communication  as one of the areas,  how do I set the goals? There are so many goals that can be listed out. Getting him to greet his peers, or getting him to report his school activities, or simply communicate his need in class by raising his hand and say verbally " I want to visit the toilet".

                           I have also recently started the  reward chart for Ramam maybe 3 weeks ago, it is a little early to say   how effective it is. But the cute part is he tries to negotiate the reward part and keeps changing his mind. The bonus  however is  my daughter too  wants a reward chart and is willing to work to earn her rewards. That is a bigger relief , as I have told her she has to learn 3 new Hindi words every alternate day.

                            My FB page is a reflection of my life. It is actually beginning to look weird with all kinds of posts, there are some posts with pic of poohs'  of kids  on various  protocols, some mouthwatering recipes as I have joined some baking forums, followed by posts on dietary interventions. The dietary intervention posts seem to shout down the drool worthy pictures from  the baking forums.They seem to call out to me "Et Tu Brute"? The page reflects my inner conflict of staying on the diet  on one hand and encouraging my sons's passion for cooking on the other .The last but not the least  the ever happy, smiling faces of friends and families on hols to exotic locations.
                        With the festive season coming up, more holidays lined up, helping Rama manage his free time is another concern for me. I am sure it is also a major issue for all parents.And so it goes on and on.....the all pervading  challenges that autism brings into our lives.
                             

Thursday, July 10, 2014

Eating healthy

        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. Also, I am trying to use brown rice when possible where it is camouflaged in a pulao or tomato rice.
                             I have also realised the chore of cooking itself can become tedious if I have to repeat the same things over and over again. I am amazed at some of the delightful, innovative, indigenous recipes mothers come up with on all these forums. Coconut yogurt  just to name one. Casein free, it is made from coconut milk, using probiotics. I am also trying to squeeze in coconut oil where possible, for tempering mostly. Hailing form Kerala it is no big deal, but surprised mothers using them to make pancakes, dosas. Coconut oil has great anti-microbial properties.Ever heard of grain free bisibele bath?!
                  The in depth knowledge some mothers have can put the best nutritionist to shame, because they make it their business to give their children the best. They are just reaffirming the golden rules our great grandparents followed from the simple ones to no additives to more stringent ones like no reheating, no using the microwave.
                  In all fairness, I can say I am trying, am nowhere near them, but am happy, I get to tag along with these awesome mothers in their relentless battle against autism. It is awe inspiring, as they share their recipes, triumphs, and sorrows.
                    Maybe I can salvage my ego, saying I do things in moderation! haha.





Thursday, March 13, 2014

Into adolescence

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 want to eat? And these small pleasures sums up our life. I am thankful for many things, we 4 enjoy a game of badminton , enjoy a movie in a theatre, enjoy our long family walks. Lot of things we get to do as a family. When Ramam  is in a good mood, honest to God , there cannot be a sweeter kid.

                                      Five years into our journey with him , his sister joined him. It is very special relationship. There are times when my daughter feels he is the favoured one, but she is there to his defence, should one of us raise our voice against him. He also stands by her, if we shout at her. She is extra careful when crossing the road, she is a co therapist working with along with me in our language sessions. They do a lot of art work  together, she is very liberal with her oohs !
and  aahs! when praising his work. They take turns with the Wii remote and spend an hour together. He walks up to her and tells her ,Come,  play with me". Hope they continue to be good to each other.

                   In his sister's b'day  party last year he would weave in and out. He would come and sit for one round of passing the parcel , walk away and then come and re-join without anyway telling him to do so. He would confidently do what is he has been asked to do in the game. It was the highlight of that evening for me. He tries hard to socialise, if any of the kids in our complex , walk up to him and say hi, he tries to maintain  a pleasing countenance.

            There are still many major concerns with Ramam,  sometimes his sudden anger or crying leaves you feeling baffled and inadequate . And some behavioural issues remain. He has his strengths , he will repeat a word for you umpteen times till you catch it, reward you with a dazzling smile when you get it .
I could probably go on and on...


                                Though should post a few lines.... it has been quite sometime.

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