A New Chapter - Starting to Work

I know, I know - there is need to be more regular on this page and so I shall. But we have not been idle in helping Adi in his growth towards an adult equipped with essential and life skills. 

Along the way, we have seen maturing....yes, even as adults ....of our qualities of patience, empathy and acquired the magical ability of seeing  the  rays of the sun on the cloudiest of days. 

Something magical started this week - Adi started  work, yes actual work, at the neighborhood church. This work involves doing something essential for Sunday services - sorting pamphlets and handouts into appropriate categories to be given to worshipers. This is work that needs to be done, it cannot be automated, and my teenager of 16 years can do it and has started doing it !! For my wife and me, it marks an inflection point in our journey with Adi.

 For special needs teenagers and adults, getting work is absolutely essential to dispel the despair and frustration that creeps in "when the school bus stops coming" which it does after they age out of High School at 21.  Adi's mom (Sanju)  is a High School Special Education teacher who has observed and empathized with this situation, and she is very determined to see that Adi gets the vocational training that he needs for getting into the laborforce at work age, and also identify work which he can do as he crosses 16.  We see many examples of adults in the spectrum working in grocery stores, in libraries and elsewhere - doing beneficial work and keeping themselves engaged and yes, even getting paid for their effort. Salary is not the main objective here - though an important one - what is most important is that work provides a meaningful way for this workforce to remain productive, contribute to society and lead meaningful lives. 

My wife deserves a lot of credit for her efforts to engage with churches and other centers to identify work that would match with Adi's capabilities. This success is leading us to start our own venture to help other families who may need guidance and vocational assistance on this. My wife has also started a blog where she looks at the challenges and initiatives of working with someone in the spectrum - both as a parent and an educator - You can read it here. Do check it out !!

The role of Housework in Therapy

This post is dedicated to my wife. By involving and training Adi in chores at home and outside,  she has  expanded Adi's capabilities and also initiated development of life skills. 

The journey has started and  it is a blessing to see Adi  as a responsible member of the household by unloading the dishwasher, making his bed, folding his clothes and organizing his space. One of the traits of an autistic child that can be beneficially leveraged is the unfailing repetition of a task which can be made enjoyable for the child. He or she will continue to repeat it "as taught" provided the task is something interesting. Similar with chores. 

The challenge lies in making a chore interesting so that the child may follow it. For example, Adi like most autistic children loves sorting. Give him the entire set of washed knives, forks and spoons and he will sort the same happily into the cutlery tray. Expecting him to unload the dishes every time on his own and put them one on top of the other in the dish rack is an entirely different thing altogether. Imagine for a moment if the dish rack was made of a set of different sized slots - each for a particular design of dinner or snack plates - he would do it easily and often without being asked to do so.  Similarly, need some thinking on how to make the task of folding clothes and making the bed more interesting and order confirming to him. 

Similarly, grocery shopping would hit the mark. We will start this process shortly by giving Adi a list of items he knows by name and then guide him to the shelves to pick up each item. I am sure he will do this on his own and this shelf search and move from shelf to cart is something which confirms to a pattern that he likes. Plus the added advantage of him liking many of the food items like cookies, ice cream, frozen pizza and so on. These days he likes grocery shopping when allowed to pick up some foodstuffs that he likes and take them - his comfort snacks . We need to maintain a balance else the cart will fill with Hostess and Ben and Jerry's.

His world is indeed wondrous. It makes us think and makes us work to build scenarios for him. And praise God's greatest creation that drives us - the feeling of unconditional love.

The Emotional Crutch

Hi - it is me Adi again, making an appearance on my Dad's blog. Lightning does strike twice, magic does repeat and Adi gets the power to write on his dad's blog once again ! 

Today I want to make a simple appeal but one that is very critical to me and people like me. Something that people nearest to us often forget as well. And so I write this as the representative of all special needs children who have communication challenges.

Unlike many of you, God did not give me the power to express my emotions properly through language. Words never come to me naturally.

 BUT THAT DOES NOT MEAN I DO NOT HAVE EMOTION.

 I am dependent on you who understands me to be my crutch as it were and help me express it. I don't care about being politically correct and not use the word crutch - too many people use that excuse to forget that we are special and we need more help than typical. I am not ashamed to say it and not ashamed to ask for it.

For example - you know I love cake. And the whole idea of a birthday cake being cut, for me or my sister or my friend, is a source of great joy to me.
So when you take me to a birthday party, you who knows me the most, please do not keep me at arms length away from the proceedings ! I promise to behave if you remind me to, not blow out the candles before the birthday girl or boy does. But please keep me in the frame, keep me as part of the proceedings.


Because if I had the power to express my emotions, I would tell you to make way and let me stand right next to the chief guest and be a part of the frame . Take a look at my face and you will know what I want. And before you forget about me , take a look at my eyes. I am always being taught to control my negative expressions of emotion - so I swallow my protest yell, control my arms and look from afar with longing eyes as the candles are being blown out. 

And talking about birthday parties, I too love to have them. So get some of your and my friends for my party too. Don't shy away from it since it is a difficult social situation and because you think I will not enjoy it. The first step towards treating me as one of you is to equalize the social scene for me as much as possible.

When we go for a social gathering, take me to your friends and introduce them to me. I will protest after a while but encourage me to shake their hands and say Hi. Social behavior is difficult for me, but loneliness is terrifying !


So - don't forget me. Throughout my life, I am being conditioned to suppress base instinct and adopt social norms of behavior and I understand that. But I need you to get into my mind and understand my emotions and help me express them successfully.

To me, you cannot say tomorrow - my name is TODAY . I need that crutch now.

About Gut issues with Autistic children

I have been really slow in updating this blog but for all those who bother to read it, I promise that there is plenty to share and happening. Will be more regular going forward.


I thought I should share some experience about a very common problem encountered bya utistic children- issues with gut - translating to indigestion, gas, constipation and other bowel related issues.  Warning - this post will use the words poop more that once!

Often parents get really frustrated with challenges related to toilet training and later on, regularity of bowel movement for their special needs child. Interestingly , the propensity of autistic children to follow a set routine when practiced sufficiently and under an ABA mechanism may be helpful to initiate toilet training. It will take time and the earlier started the better. Maybe not all children will be able to master it but as with everything else in this area, the effort is the main thing.

There is an important study from Columbia University that points to sustained gut issues in infants as one of the indicators of autism. It is important to note that the study does not attribute this as a cause of autism but as a possible indicator. The reason is being attributed to lack of synapse between the brain and the gut – and obviously a lot of research needs to be done on this as well. 

http://www.mailman.columbia.edu/news/autistic-children-more-likely-have-gi-issues-early-life



Let me share the example of progressive experience on this with Adi. From the age of 3, Adi was toilet seat trained.  This was a great exercise devised by his grandma following the same practices as followed for most children – making him sit after a meal or at particular times of the day ! Around the age of 4,  his home therapist instituted a program which very  quickly moved him from a child potty seat to the bathroom seat - I will share those details if anyone is interested to know about it. His diet  was normal for kids his age.


As he grew older, we noticed constipation issues setting in. Irregular bowel  movements - sometimes after a couple of days. Reluctance to sit and push while pooping. And sometimes an obvious sign that he was "holding back" - as if the sensation of flexing his sphincter muscles was a pleasurable sensation. Later on we learned that this is not uncommon in special needs children.


For those with autistic children, this may be a known and frustrating issue. A nice article on this –

http://www.learn2do.net/blog/bowel-problems-autism.

We went through several hoops for diagnosing what the issue is. First, Adi was an early user of Risperdal - it had a possible side effect of constipation. Doctor advised fiber in his diet and a course of MiraLax when the situation was bad enough - obvious discomfort and no movement for a few days. This went on for a while - the benefit being that he developed a taste for Indian vegetables like okra, opo squash, calabaza and other high fiber foods.

 We switched over from Risperdal after a few years owing to its side effect on heart, but the irregularity continued. At the same time, possibly as a side effect of medication, he started gaining weight. Significantly. Within the age of 11, he has crossed 100 pounds and was in obse range. Again, a round of medication changes happened to take care of the weight gain side effect. We started increasing the amount of exercise that he got during the week- and his adaptive PE in school also helped with its emphasis on running. Tried to make him jump more on the trampoline as well as a way to get more active.


 Still, the problems continued. And around the age of 11, he started showing symptoms of flatulence  and gas. At times, there would be reports from school of extreme passing of gas.Doctor advised using suppressants like Baeno and Gasex. We also started to eliminate foodstuff that can create gas. Problem – many of these foods were part of his like list including veggies. We had switched him over to brown rice owing to the higher starch content of white rice – now went back to white once again to lower the fiber content. We also regularized the consumption of yogurt and probiotics.

It may seem humorous and silly to be reading about this  but believe me, the whole issue of a teenager passing gas, being uncomfortable with constipation and oblivious to its effect in public is extremely embarrassing for those he is with, apart from being very troubling for him.  There is a lot of effort that goes in to making him learn the need for using a restroom in such cases. And of course, the inherent cause of the problem still remains unidentifiable. 

Then one day, we have him Zinetac (Ranitidine) after a heavy meal to help in digestion. The next day, we noticed a marked decrease in flatulence and gas. So we checked with the doctor, found it safe to give once a day as a protectant against indigestion, and the effect has been good. His bowel movement has regularized and he is having much less gas than usual. We have stopped excessive sugar and sweets in his diet and that has helped as well. We will now be checking for gastro issues with a specialist and also checking on whether past or existing medication that he has been taking (only one) causes this.


And so another challenge to be tackled. Meanwhile, Adi is getting more communicative- slowly initiating more conversation and growing up so fast ! 

A Great Article on How Autistic Children reach out....

Today I read this fantastic article in NYT that I had to share. It narrates beautifully how an autistic child reaches out, and can be reached, through a particular area which they like most. And many cases that reveals their underlying ability as well. Here is a great extract from this article -

The latest research that Cornelia and I came across seems to show that a feature of autism is a lack of traditional habituation, or the way we become used to things. Typically, people sort various inputs, keep or discard them and then store those they keep. Our brains thus become accustomed to the familiar. After the third viewing of a good movie, or a 10th viewing of a real favorite, you’ve had your fill. Many autistic people, though, can watch that favorite a hundred times and seemingly feel the same sensations as the first time. While they are soothed by the repetition, they may also be looking for new details and patterns in each viewing, so-called hypersystemizing, a theory that asserts that the repetitive urge underlies special abilities for some of those on the spectrum.

I will work with Adi based on this article and see where it goes....

http://www.nytimes.com/2014/03/09/magazine/reaching-my-autistic-son-through-disney.html?src=me&ref=general

Learning - the Journey is the Process

In a seminal article in the Harvard Business Review, Peter Drucker wrote about the different ways individuals learn. Not just learning in structured environment like a school, but also learning in a professional and social environment. Some are readers, others learn when they discuss, talk or listen.

Sometimes I wonder how the autistic children learn. What is the best way to get across life skills and other education, including formal education, across to them. That is truly one of the major exploration areas in the search for therapy and treatment of autism.

Based on our experience with Adi, learning for autistic children is hard but not impossible. It requires patience, lot of initiative on behalf of parents and lot of practice and rework. Be prepared for a journey with stops, delays, frustration but also some wonderful happy surprises !  In some ways, the journey is the process. And sometimes, it takes a lot to sustain the spirits - for progress is incremental and slow. There are no magic pills here.

And it depends as much on the instructor as anyone else.In the initial stage, when he was 3 and diagnosed with severe autism, we were very lucky to have a young, enthusiastic lady as his home therapist -  who had the basic command of ABA and was also a teaching aide in his early intervention program and was also working towards her Masters degree in Special ED. She loved Adi and created a wonderful program for him - filled with lots of fun, play, trampoline, treats and songs and through these media - learning. Among early successes - learning to point, speaking his own name, calling us out as Ma and Baba, learning to eat at the table and learning his home phone number. Learning to wash hands, do potty in the bathroom(from the kids training potty) and eat with spoon and fork. It required significant patience, he would cry, yell, have repeated breakdowns - but she persevered. Later I would realize - this was her innovative way of combining ABA with Playtime and many other ways of therapy. And slowly the rays of the sun started to peek through the clouds. An early start wth the right therapist is therefore critical. We had about 10 hours of home therapy  per week during that initial period on top of full day early intervention program in school. It was invaluable - the home therapy focused on development of language and social skills. 

One other thing we learned - learning for him is not a continuing ramp up. There are periods of plateaus and there is regression if the follow up is not maintained. We evidenced real regression during the summer vacation months and from then on, have always requested for extended year programs where ABA practices are continued.

Sometimes, specific therapies and interventions were required to achieve specific objectives. Adi initially had serious issues with food - he would not eat most things and everything that he would eat had to be mashed so that he could swallow. For several months, I took him to a private therapy where they basically taught him how to chew and eat. My wife gave him specific foods like vegetables and other chewy items like pasta etc. It took time - but soon his food options had started to increase.  The therapist used to place the food right near the molars and physically, gently prompt movement of the jaws.

An example of an undesirable behavior was constant raiding of the refrigerator in search of goodies. At substantial cost, we did several months of private therapy at specific intervals to take care of this undesirable behavior. The way - replace an undesirable behavior with a liked desirable behavior.

As I mentioned above, the journey is often the process. And it pays to be alert as much as possible during the journey. During the early intervention program, we quickly learned that Adi loved music. Specially the Hindi Movie catchy dance music videos. So we started creating a library for him and put it into the iPad and iPhone. It has proved to be a real life saver on numerous occasions - where we were free to engage in social conversations and other activities like shopping while he busied himself with his songs. And that in turn, made him like the iPad immensely. Here was something he could relate to - his friend, somewhat with whom he could spend time. Now when we thinks of ice cream - he does not raid the freezer (for most of the time), he goes to google>types in ice cream> Images. He loves water - so will check out music videos involving rain and be happy seeing people getting drenched. And will remember the words swimming, water, rain - for they help him to visualize what he likes. And we, in turn, realize that here is something that we were desperately looking for - a way for him to spend time when not in a educational or learning environment, almost like with a friend who understands his need. And today, when I see him play Temple Run 2 and run up scores in excess of 50000, I know how fast his mind is working to achieve that. So here is what we learned - if he likes something which is not destructive, use that like to further learning objectives. Teach him how to operate an iPad to see videos of water, pictures of ice cream and so on. He will lap it up. He loves water - encourage him to take up swimming starting with treading water. 

And never take anything for granted. Don't generalize. Adi hates it if a drop of water lands on his dress - but the same boy just loves jumping into the pool or the lake or the sea and will spend hours wetting his whole body, pants and so on. Why? I don't know completely - maybe it is because he does not like his dress to get wet. But it is not hydrophobia in any way as I have indicated his total love for water. And after we practiced and practiced long enough, the same love for water translated to an acquired skill for swimming in deep water and staying afloat on his back !

Benefits of Swimming and the Pool

Late last year, we moved into a home of our own from the apartment. It is pretty spacious, two storied and offers plenty of space to everyone in it. This also meant that Adi had more space to cover and walk within the house as compared to the apartment. He had to consistently go up and down the stairs - which is normal for typical folks but does improve motor skills in autistic children. 

  In our subdivision, there is a large swimming pool. And that has been a tremendous boon this summer. Usually summers are a difficult period for Adi - he is retrogressing in the absence of routine and gets into undesirable activities - like raiding the refrigerator,  playing long time  with soap and so on. But swimming has acted as a wonderful regulatory activity for him. It helps him burn energy and most important he spends a lot of time balancing his heavy self to float in the water. I think this goes way beyond Occupational Therapy - it is a complete exercise, there is need of consistent motion and balancing.  I try to do at least 1 hour of this every day with the kids. His sister has also lost her fear of water and is now jumping in straight into 6 feet water, being a 4 ft child. My earnest recommendation to whoever reads this insert is to please get your autistic child introduced to swimming. To a pool. And slowly take him into deeper waters so that he needs to start working to maintain his position. It will need enormous perseverance and consistent attention even after he has learned to swim. I remember introducing Adi to the YMCA pool in Jersey in 2006-7 and continuing to take him there during winter months as well - it was a heated pool. Remember driving him 40 miles each way each  Saturday for a 30 min swim lesson with a special needs aquatic coach in Atlanta. Effort always pays off.

Self Regulation and Awareness

Adi, like so many children who are Autistic, experiences considerable difficulty in controling his disappointment and channelizing into a controllable emotion. So when he is asked not to do something that he really likes to do - like steal ice cream out of the freezer - he will protest. For several years, this used to take the form of a tearful outburst. Then that subsided to some extent - but got replaced by the tendency to reach out and "tap" the person issuing the instruction. Increasingly, I am observing significant attempts at self regulation. In many cases, this happens after he has reached out to tap someone - he will immediately try to console them, touch their cheek or give himself a tap on the head to equalize the wrong. Else he will simply squeeze his eyes and try his best to hide his disappointment.

Long time back, Dr Vidya Gupta, a world renowned neurodevelopmental expert on Autism based out of NJ, told us that - you will have to learn to live in his world and adjust to his world more than the other way around. And we too have learned. Now a NO is always accompanied by a promise of an alternate or a certain time projection in future when he can have what he likes. If we take away a like from him, we need to at least remind him of another item, play, object that he likes. His brain processes emotion in a very serial way.