Off with Risperodone - and a new medication

Adi is normalizing at a discernable rate in many ways. He knows how to brush his own teeth and has a lot more self control while doing it. Goes all around the mouth and takes his time. A lot more awareness of the world. Gone are the days of screaming when going to someone's house or jumping up and down on the seat in the restaurant. He will sit and eat his food calmly - has a fixed order of eating what he likes most first but will change it when requested. We have moved him off Risperdal and got in Invega at Bed time. School reports are that this has caused a positive change in following instructions and being more orderly.

Today we had a wonderful time in Herman Park with Adi and me paddling the boat and 4 of us for 30 mins.Solid exercise and a real cool time !

On my 10th Birthday....

Yup, its me - Adi !  I recently had my 10th Birthday - on 2nd April. You all must be really surprised to see me write this. Lets just say - for one day of my life, God turned around and looked at me! And smiled and said - ok, for this day, I give you the power to compose your internal thoughts like any typical 10 year old would - and write. Like Cinderella, once the hour hand moves full circle, I will take it away.


Gosh, Life's tough ! So here I am hammering away at the keyboard.


2nd April. Yah, Yah, I know - its the international day for Autism. What do they call it - Irony, correct?  I am beginning to understand that it is what I have and it is what makes me different in many ways from a lot of other kids I see. Like those playing baseball in the Little League or basketball after school when I am shuttling between therapy classes. Ok, I don't know how to swing a bat or strike someone out. I get it.... But come down to the pool at the Y and try floating in 10 feet water in almost vertical position. With my 90 lb weight, I do it with  eyes closed. I know my dad cannot. I see his head go under water every time he tries to swim on his back. I don't. Water is my friend. !Its neutral - so it has no preference for typical or autistic, black or white.

So I need to write something about my life here. I have a lot to say - but when I want to, damn it (sorry mom - no swear words !!) - the words they just don't come. Like they do for my darling sis Trisha who is speaking about 300 words per day. Hey you up there - know this - I am trying. I am trying so hard. Been trying since 2005. Give me a break if you can ! Like - let me say just about 10 sentences. Starting with - I love you Ma. I love you Dad. I know I am not what you expected - but thanks for making me a son in every way.
And when you get impatient with me - please hold on !! Dont give up on me. I don't. Hope is my most precious possession and I guess it is yours as well.

And the bit about not like you...that's just in some aspects.

Like you - I too feel pain, I too need love, I too love music. And ice cream !

I know that you do a lot of things . But how many are you really good at? On the other hand, there are far fewer things that I understand and can work out.  But what I can do, I do better than most people. Like swimming. Like running up crazy Wii scores in Bowling. Like making entire boxes of ice cream disappear in 1 day.

Somewhere in this world, in this magical valhalla that we call life, there is a space for me as well. God made me - and so that cannot be wrong. So take me as I am. Accept me the way I look and gesture. No favors - just understanding. For I do - I understand that I am different and so much more denied that many others are. But I also understand that maybe that's how God meant it this time around - and that's how I need to live. So be my friend. Hold my hand. Show me the sunsets. I understand - even though I do not respond the way you want me to. If life was a box of colors - consider me as Indigo. Does not stand a chance in popularity to the red or blue or green.  But without me, you would not have the rainbow. Or white.

Normalization

With growth  comes realization. I am almost sure that Adi has a more improved sense of his environment and is improving his abilities to blend with it. No longer does he confine himself to some other room when everyone else is doing something else. When there are guests in our house, he makes an attempt to sit with the guests or play with the kids (in a limited way) rather than move to some other room with his ipad2 or 'rice box'.  He throws less tantrums when the routine is disturbed or modified. Maybe this represents an opening in the gate to push through additional learning. It has to be delivered uniquely - almost playfully. It as to be repetitive without being boring. It has to be of value that he realizes.

Leveraging interest in electronic gizmos

Adi is enormously interested in itouch, iphone, blackberry, ipad and of course the desktop. Earlier, this was more play without substance, increasingly it looks like there is an attempt to play to achieve something - start a video, play a game, hear a sight word and so on. How to leverage this for learning? We spoke about this with his teachers and they have started including lot of electronic learning aids? Is there a program out there that captures differnt components of a sentence in pictures and then reads out the approx sentence? Example - photo of picture + photo of someone eating = a voice saying " I want to eat Pizza".

Communication - and lots of hope

One of the root causes that drives a lot of challenges for Adi is his inability to communicate. He is able to understand most of what is being said to him and increasingly a lot of what is going on around him. However, when he wants or does not want something to happen, or when he wants to express a like or dislike, he hunts for avenues to communicate. Words do not crop up for him. He goes silent - tries to make an effort. Like a student trying to remember a sentence that he read up but has now forgotten - he starts repeating "I want, I want..." in the hope that the remaining part - what he wants - will come. At times I see him shut his eyes tight and lean his head back as he tries to remember the word or the phrase which he should say. As a father, it is one of the most heart rending sights - and I live through this every day. I try to imagine what it is like living in Adi's world - for a day, at least. Be with all - and yet be away from all. Go through the day without being able to express what you  do or do not want to do, say, eat to a large extent - depend a lot on what your parents can make out. What happens in school when he is away from us?

And sometimes, there is a streak of sunshine that penetrates the clouds and suddenly - like the first rays of light after a very long, dark night - feels me with enduring hope. Just this week - he was near the fridge - wanting to open it for the ice cream pint within. And so he stands there - and I ask him - what do you want? Open fridge - he says. So I allow him to open it. Now what do you want? In a very rushed and unclear voice - i ccrring..... And I say - I did not understand. He looks at me, and with increasing exasperation, says - I want i-c-e- c-r-e-a-m!"" He just spells out the word clearly. Both his mom and me are stunned. He understands that he is not being clear - and he knows what to do to get the word across. That is hope ! And I believe, I believe....

Got to start looking at the human machine interfaces ....

Indian Family and Autism

Consider typical family traditions and values in a Indian household.  The type that encourages joint family gatherings whenever possible - grandparents are welcome to drop in and stay on even in modern nuclear families. The attention and care that parents and grandparents give to children - sacrificing personal and sometimes even professional time and careers. Utter selflessness in services to children and encouragement of joint family type environments are features that significantly help autistic children. 

1.  I can personally vouch that an autistic kid gets a lot of  benefit from this exposure to  a lovable social environment and social play in the company of his grandparents, cousins, uncles, aunts and so on. Adi has been able to improve on his social challenges by spending at least 3-4 months of each year in the company of his grandparents and recently, of his aunt and uncle and cousins. Numerous festivals and other occasions for get togethers provide special needs children much needed acclamatization to the company of others in an informal, non-classroom, no pressure environment.
2. Also, typical Indian parents will sacrifice enormous personal time, space and expenses, and even professional time and in some cases careers, for the sake of their children. This is ingrained in the Indian psyche - nobody does this thinking what a great sacrifice we have made.  Perhaps no other trait helps autistic children more - the attention span that a typical Indian parent provides towards the education and upbringing of their children to the expense of everything else. Even in USA - the typical consideration for a Indian family to select an apartment or house is always linked to the availability of the best school district . For special needs children,  I can say from personal experience that the Indian family will do painstaking research - both in person, third party and on the Internet - for identifying whether the school with high overall scores also has good facilities for autistic children. If we can afford an IPAD and my special needs child benefits from it - we will go for it. Else even if we can afford it, we consider it as a luxury and wait for discounts, markdowns and forever prevaricate.
3. Variety for the senses and sensory improvements - typical Indian household will have, over a period of time, a wide variety of food being cooked and shared. Lot of music and appreciation of the same.  Lot of TV with music videos, comedy and family oriented entertainment. All which special needs children really benefit from - and in many western families, parents will really spend money to organize such environments as part of therapy. For Indian families, this often comes free.
4. No shouting with parents. Love towards siblings. Eating properly. Regular hygiene habits. These are part and parcel of everyday family life and so often emphasized in households - becomes automatic therapy for children.
5. Special needs children depend on emotional support from their parents. Not just kindness, but patience and a feeling of "he too is my own and deserves a life of respect". This feeling is so ingrained in the psyche of Indian families that it automatically channelizes into actions and thoughts that keep the special needs child within the "family" in everything the family does and thinks. I know of several mid East and far east families who are constantly ashamed and embarrassed that they have a special needs child and go through life hiding and isolating the child from the broader family and neighbours. Never in an Indian family.

ipad 2 for autistic children - a boon for travel

We recently traveled to UK from US - 10 hour journey by air. Obviously by coach! What we were really worried about was how Adi would react to being seated in a confined space for 10 hours. He has been doing numerous plane journeys - I guess more than 10-12 transcontinental ones - since the age of 1 - and his response to them has been varied. During some journeys - he has slept a lot and been looking out of the window (cannot see anything but clouds...) and played with toys - and during some other journeys - has been really impatient to get up, scout the cabin, stand on his seat and lean on those in front and so on...

But the lord gave us ipad 2 !! And I had loaded 2 hours of is favorite music videos along with some of his games like bowling in them. And there he was in the flight - passing hours with his headset on and listening to his songs and playing his game. No speakers - no disturbing others. He slept for a while as well.

The single click play mechanism of ipad is a boon compared with double clicking on the computer where centering the mouse and then adjusting the display window size for him. The touch nature of the device is something he has adopted to as a natural. After coming back, when he is unable to play with ipad, he is playing with itouch !

Long live Steve Jobs...

Adi and the new Wii

As parents, we had lot of doubt on whether buying a Wii would make sense for Adi - since each game seems to require movement of multiple buttons on the remote - plus lot of help messaging which he would not , obviously,  understand and get disturbed since they interrupt the flow of the game. However, his sister turned 5 this year and she has been asking for one, so we finally took the plunge last week. Imagine our delight - something which brought tears to our eyes as parents - when Adi adapted to the Bowling game as a natural. He took exactly 2 minutes to understand the sequence of keystrokes and the fact that he needs to press A to get through all those irritating messages and also move from Finish to next game (wish Nintendo would do something to eliminate these or go one touch from one to the other !!). The icing on the cake is that he is Striking in practically every other turn and ran up a score of 175 ! Try beating that.

Him adopting to the Wii is really great and tells me several things -

1. Good fine motor co-ordination - much better than what we thought.
2. Intelligence on the move - he moves very fast between screens and even when error messages cro[p up. Can think on his feet. Has also figured out where he needs to stand to strike !
3. Quick pick up skills of things he likes to do.
4. Understands the game - when there is a Strike, he is a lot more happy than when he has missed (rare !!) or knocked a lesser number of pins.
5. Possible way forward to make him learn language and start using words. Something that  works on and responds to voice commands.

I plan to serach out some more games on Wii which do not involve too many keystrokes or fancy sequence of movements. But thanks a ton Nintendo - for making my son enormously happy and his parents really proud !!

As we grow older....

I think it was Temple Grandin said something like- as we (autistic children) grow older, we tend to become less autistic.

Maybe more typical. More attempts at self control. I see this increasingly in Adi in terms of the self control he is trying to exert on himself. For example - when he needs it, he will go and jump on the trampoline to regulate himself, or sit with his rice box to calm his excited fingers.  It comes out at attempts towards more typical behavior in public places like restaurants - which has been one of HIS biggest wins. He can sit for2 hours in a restaurant and eat what he likes without getting really upset or disturbing the table and others.

However, with age comes age typical behaviors as well-like more attachment to the things he craves and more forthrightness of his wants. When he is craving for a special treat, for example, he will get really upset if it is denied to him, and at that moment, he loses control. The period of loss of control is diminishing, and that is encouraging. It is clear that we have plenty of work to do in teaching him to "wait". What are the options?

Is continuous Q&A acceptable form of communication?

Adi is a great fan of chicken and absolutely craves the grilled ones from KFC. So when he saw 2 juicy leftover thighs in the fridge, he wnet into an excited state to get them. I caught him trying to sneak some out of the fridge. So I stop him and ask him - what is it that you want?

Now Chicken and Fish are possibly things he has been eating every day for the last 7 years. And yet, he failed to say it. I took out the pieces and showed it to him - which only made him more agitated and he started to throw in words not remotely resembling chicken. He was getting really frustrated. I had to give him a big hint with the word "Chicken" for him to repeat the prompt.

Looks like we will need to institute a regimen by which Adi should be asked to say what he is eating, what is he holding in his hand, where is he going, what is he wearing and so on. We used to do his frequently but stopped maybe a year back thinking all this is done for him. Has not happened. I think there is need for continuous practice with Autistic children - either formally or informally - for them to retain what they learned. Learning is not for keeps here.

So we go again.....

Understanding without responding verbally

For typical children, understanding of any verbal instruction or even of a situation is conveyed usally by a verbal response or a nod of the head. Not so for a non verbal child like Adi. I know that he understands most of what is being said - or does he ?

There are 2 ways to find out -

• Ask him if he understands what is being said. Usually this fails. He does not respond.
• Convey instructions ending with an action that he needs to perform if he has understood what has been said. Example - Adi - let us go for a swim. Change your clothes and wear shoes. He will respond by trying to change into the appropriate attire as best as he can.

In Indian households, especially uring the summer vacaton, there are many commands which we  will/ are trying to give around the kitchen and the house - to get him to do something involving physical motion - should he understand what is being said.

P.S. Do autistic kids really love pizza and grilled KFC chicken so much?

He makes me a better person - every day

Why start yet another blog about an autistic child ?? Why should anyone read this and why should I  plonk away at my keyboard past midnight when the world sleeps?

Couple of reasons

1. Because it matters. Based on the experiences of last 7 years, the learning on how to observe and deal with autism is mostly experiential for me. If I share, the hope is there that so will others on this blog and it will benefit us all.
2. Next - Exploring The 'Indian' factor. I am realizing that there is always some influence of our social and cultural backgrounds that goes into what we do to take care and deal with children - including autistic children. And there are many,many good traits that are a part of Indian social ethos that are of enormous help to us dads and moms as we grapple with this enormous challenge.  Not to sound regional here - but based on my numerous interactions with other dads and moms from my country who are bringing up autistic kids - I am convinced that there is a large part of our "Indian" nature, social patterns and attitude that shapes our responses on dealing with autistic children.  Not all traits are praiseworthy -  Over prevalence of sympathy (specially from Dad) Negotiation within onself and long periods of soul searching on "why this happened". Issues in communicating to relatives and often a lack of understanding on their part.
3. When Aditya was first diagnosed with autism 7 years back, his neuro dev pediatrician had told me and Sanjukta - you will both have to change as well -  adjust to deal with him while in HIS world.    Day after day, I realize the weight of his words. In 7 years, Adi has been able to step into my world and now  understands most of what is being said to him. But how much of his world, his feelings, his thoughts, his aspirations, his fears, his laugher - do I understand? 

    I am trying. And I know this - as I try to step into his portal, I find myself       becoming more tolerant, more open minded, more respectful of diversity and more aware that my view of life may be the common one but NOT the only one. He makes me a better person every day. And I want to share that - how my son infliences me positively !


Aditya is now 9. He is tall and well built for his age. I remember while growing up as a teenager, I was a little conscious of my thin arms and rib cage outline showing whenever I took over my shirt. No such issues here. He is well within the autism spectrum and lives with his parents and sister Trisha in US. Mosly non verbal. Amazingly perceptive of emotions and what is being communicated. Quick learner. Avid swimmer. And full of life. My brave boy.