What is changed?

On 13th May 2014, my son has completed his 8 years of his life. I started this blog in 2011, when he was 5 years old. I was just reading my first post in this blog post Tanishk and was trying to find out what has changed in these 3 years. My son is now 8 but still he does a lot of things same as I mentioned in my first blog.

After my first blog, I have written several posts about his developments and behaviors. I had experienced both - good and bad moments. But when I try to analyze that how far I have come and what did I achieve in these 3 years, I have mixed thoughts in my mind.

When I see my son behaviorally, he is the same boy as he was 3 years ago. He still doesn't want to comply. He runs here and there, he is so hyperactive, doesn't sit still, jumps on trampoline and mattress (now he has company, his brother also jumps with him). He is still gadget freak. I have written series posts about this - Computer Stimming. The difference is that now it has converted into IPad Stimming. (I will write more about IPad stimming in my next posts.) Still he has verbal stimming - keeps saying things he had heard through various sources - TV, Computer, Videos, Therapists, Teachers, Parents, Grandparents etc. Still my most of the time goes in prompting and redirecting him.

First blog post - (He doesn't want to comply. He runs here and there & he is so active that he can't sit still. He jumps every where - on the mattress too. He wants to watch same videos, listen same music, computer on & off, goes into the settings of any gadget and just selecting anything. Flapping his hands and holding things in one hand are still there. If he is given a pencil or pen and left unattended, he will scribble everywhere even on the table or floor too. He has got verbal stimming, he just keeps saying the things he had heard through various sources - TV, Computer, videos, therapists, teachers, parents etc. My all the time goes in prompting and redirecting him.)

When I analyze my son's skills he has learnt in these 3 years -

He has learnt basic skills (brushing teeth, washing hands & face, buttoning his shirt, using microwave and toaster, etc.), reading the books, spelling, writing sentences. math (simple addition), catching the ball, throwing the basketball into the basket, playing wii games, etc. Few skills he is still learning - reading comprehension, tying the shoe laces, skating, riding the bike, scooter, board games etc.

But the thing is that he is not interested in anything and he is not curious about anything. He has learnt everything but does only when told to do so. He himself just wants gadgets (iPad, computer, etc.) and he can sit with them hours. He will just forward videos and continue clicking the buttons to repeat the same dialogue / music / noise / tune. Yes, in between he plays games too - Angry Birds, Cut the rope, Appmates etc., but most of the time he just stims with videos and audio.

He has learnt new behaviors too - He knows that he is doing something wrong. When he starts to stim, he gives us a look like he is telling us that  I am going to do what I want. When we stop him doing anything or restrict the access to something, he starts to shout, scream, bang and hit his younger brother. He has become little bit manipulative too. He knows where the things are kept and starts to search for. He knows what upsets us and he does that knowingly.

I have heard and saw that electronic gadgets are good for these kids. They help them to communicate and learn new skills. But I don't think they are helping him. I tried a lot of apps for him, but no success. He learnt but memorized everything. His mind is full of videos, music, different kinds of noises, dialogues, teachers and parents' words etc. and keeps repeating those things again. Like he is playing video in his mind again & again. In this situation, he is not able to learn anything new. If he learns, it is mechanical or memorized. So, I don't know how far we have to go.

I hate Autism

I love my son. But I hate Autism. 

I feel happy when he smiles and laughs. But I hate Autism.

I feel proud when he comes to me, kisses on my cheeks and says - "Mamma, I love you." But I hate Autism.

I feel proud when he sings a song. But I hate Autism.

I feel proud when he reads, writes, does good academically. But I hate Autism.

I feel proud when he understands everything and listens to me. But I hate Autism.

I feel proud when he solves his problems. But I hate Autism.

I feel proud when he thinks and chooses things. But I hate Autism.
I don't bother if he is different or he thinks different. But I hate Autism.

I love his cute smile and spark in his eyes

I know in my heart that my son has a great potential in him. I am always with him and I feel that he have so much strengths. He is very cute and affectionate. His smile is contagious. He has great eye contact. He speaks and tells us clearly what he wants. He has his own interests and choices. He likes to listen to music and also sings the songs. He likes to play Wii and games on iPad / iPhone. He is hyperactive, energetic and great problem solver.

He is also good academically. He knows reading, writing and coloring. He is average in Maths, but good in puzzles, models and thinking tasks. When he is focused at task, he is at his best. He has good memory and remember roads too.

But when my son is unaware of his environment, I hate Autism. When he is lost with electronic gadgets, I hate Autism. When he can talk but can't do conversations, I hate Autism. When he can't understand reasoning and stuck on something, I hate Autism. When he bites his fingers and hurts himself, I hate Autism. When he doesn't act without prompts (still we have to prompt for everything, even for eating), I hate Autism.  When he wanders aimless and just lost in his own world, I hate Autism. But I love my son very very much.

Computer Stimming - Part 3

Continuing from the stories Computer Stimming Part 1 and Computer Stimming Part 2, this is the final part of the story. I don't want to get anyone bored, but without mentioning all these incidents, I won't be able to explain about computer stimming which is a big part of my life. How this affected me and my son's life, his learning, his thinking, his attitude and his behaviors. Computer and other electronic gadgets were feeding him continuously and became hindrance to his learning. He kept talking repetitively what he heard as I mentioned in part 2. 

Till June, 2012, I was very much frustrated and upset about his computer stimming. But, I was not able to control this situation fully as I was not there always to control his access to electronic gadgets. My younger son was born in 2009 and he also needed my attention most of the time. So, I had to switch myself between these two kids. 

Without explaining my situation, this post won't get finished. I was alone with these two kids. My husband used to come late after 7:30 PM. Tanay, my younger son was too sensitive to the noise and Tanishk was very loud when he used to make tantrums. (Still, he is very loud. I can not stand with him, when he shouts and screams.) When I try to take away computer from him, he used to make tantrums and very loud noises. So, when Tanay was sleeping, I did let him do whatever he is doing.

In June 2012, when it became a little easy to make Tanay busy in something else when I was working with Tanishk, I decided to not to give computer to him. How can I forget that day? He came from the school and he asked for computer. He kept asking, crying, screaming, banging, stomping, hitting for 1 hour. Next day, same thing happened, but only for 10 minutes. After that day, his attention and focus were increased a lot. He doesn't touch the computer, and if he gets he gives it back in time. I don't let him stim on any gadget. That was the major achievement for me.

Still, he gets electronic gadgets but for the limited time and as a reward. He loves music. But now, he plays music appropriately and also play games appropriately. He reads stories. His focus is improved a lot. Still, sometimes he is tempted to do wrong things. Still, he repeats the talks from videos and audios. He sings songs and also tells stories.

Now, I can say that I have taken right decision. I told my readers this story for telling them - "Please don't let your child get lost into these electronic gadgets, he / she can learn them later. Engage them in other useful activities instead of TV and Computer. Use them for short time."

Computer Stimming - Part 2

As I have written in my earlier post Computer Stimming - Part 1, Tanishk learnt to use all the electronic gadgets. He knows what does he want. He learnt typing himself. He was always good in reading. He started reading in 2.5 years after he started speaking. His therapists used flash cards to teach to label things and then he learnt reading through flash cards and bumble bee videos. We never had to teach him reading.

Tanishk used to watch his favorite videos on YouTube - TOONBO "ABCD", TOONBO "Alphabet Song" and Dancing babies with diapers (indian version video). He also got interested in Hindi songs and he used to ask us his favorite songs on YouTube - Pocket Mein Rocket Hai, Yeh ishq hai, Nagada Nagada and Suraj Hua Maddham. He learnt to start these songs himself.

When he became an expert in YouTube, he started to explore more videos. He started to watch any video (Not meant for his age). He also explored more things on the computer. His favorite program on the computer is Windows Media Player. He used to listen to the songs on the windows media player and liked to see the patterns on the screen. He gets excited by looking at patterns and starts to jump, laugh, run here & there. I became a little bit scared when I saw him showing odd behaviors.

He had learnt to use every electronic gadget - iTouch, iPad, iPhone, Computer, DVD Player, TV and Wii. He was an expert using all the gadgets appropriately, but he was only interested to use them inappropriately. He started to go into the settings and do the changes. He used to shut down the system and restart again. He plays the games in the wrong way. He plays the same videos again & again. We tried to limit his access and only give him the electronic gadgets as the re-inforcer. But whenever the gadget was taken away, there were lot of tantrums (jumping, banging, shouting, screaming etc.).

Here, I want to mention that he is verbal and is also an expert in copying all the verbal tones (he says or sings the same way it was said or sung). His articulation is very good and copy all the talks he have heard. He also sings the music in same way, but all words are not clear. Later, he started to sing inappropriately knowingly. He is habitual of doing things inappropriately, even he knows what is appropriate.

Then he went one step ahead and started to forward all the videos and songs. He liked that forwarded noise and became habitual of it. And he started to repeat the same forwarded noise verbally. That made me feel very upset.

So, electronic gadgets are his obsession. In the morning, he wants them. Whole day, he wants them, In the night before sleep, he wants them on the bed. He lost interest in other things totally. He does other tasks only to get his favorite gadgets and to use them inappropriately.

Computer Stimming - Part 1

This is era of technology. World is changed into the electronic world. Today, you will find electronic gadgets that fulfill your everyday needs. These gadgets can be anything from a grinder to a camcorder to a laptop to an IPad / IPhone. World is connected electronically through internet. It has become very easy to communicate to the people who are very far from you.

All electronic communication devices (Computer, laptop, IPhone, IPad etc.) are great help to Autism world too. The autistic kids and adults are now able to communicate through typing without looking at the person. It was a great help for them to open up and feel connected. So many apps are also developed for them to learn new skills (Academic, Language, Social etc.).

Examples of such people for whom the world is changed after learning the electronic communication devices are - Peyton Goddard and Carly Fleischmann. After starting communication through these devices, even they were able to tell their experiences they had in their childhood life.

Nothing is perfect in this world. Everything has its uses and misuses like people who have talents and shortcomings both. Same is the case with these electronic devices. It also depends on the people how are they using these devices. And mostly autistic kids are used to do things inappropriately. My son is one in those kids.

I have read few similar stories through blogs, I got to know that I am not alone. Few other parents are also facing the same problem. One example is here - Be A Good Mom (Stims oh boy the stims). I thought that I should also share my story. It's a very long story, so I am writing in parts. -

Before coming to US
My son Tanishk was born in India. When he was a toddler, he was cute and enjoyable kid. He used to cry very little. On his 1st birthday, he was not interested in people but their cell phones. We were very amazed  to see that how he has learnt to start music himself. He didn't respond to his name when he was 18 months old, but he used to respond when he hears phone ringing or music on TV. He loved to watch Indian ads on TV and few ads were his favorite ones. He liked to watch Bollywood actors Shahrukh Khan and Urmila Matondkar in ads. We were sure that he doesn't have hearing issues as when the ads started, he was used to come so fast even from another room. But, we were very much concerned that why he is not responding to us.

My husband used to work from home those days. Tanishk was so much fascinated by his laptop like all the kids. He used to press buttons to explore how it works. One day, we saw that he was sitting on the laptop. My husband had to work in closed room and he had to put off the computer when he was not there.

We used to make different sounds and calling him in hope that he will respond to us. But no, he never respond to any noise except TV or phone. He used to respond only one word - "Orange". Orange was his first favorite fruit and still he loves it.

After coming to US

At early age, Tanishk was interested in all the electronic gadgets like all the kids. So, we didn't give much thought about it. We came to US when he was 2 years old. As time passed, Tanishk kept exploring the electronic gadgets. He  had learnt how to operate Phone, TV, DVD player, Computer. We were very happy that he used to watch videos and also liked to listen to the music.

But problem started when we realize that he wants to watch the particular video / particular part of the video or to listen to the particular song. He wanted to repeat videos and music again & again. We couldn't leave him alone as he kept pressing buttons on the DVD player or computer.

He learnt to operate the computer, and also learnt to start YouTube. Earlier, he was used to ask us for particular video or songs on YouTube. He learnt himself to type and started to watch the videos on YouTube. Once more, we were amazed to see that. He used to listen to appropriate songs. Everything was going fine.

One day, I realized that he has started to stim on the computer too. It happened gradually. He used to enjoy and we were happy that he is enjoying. He started to ask for the computer every time, he gets it when no one is there, he started to play windows media player and see patterns (visual), he started to watch inappropriate (not appropriate for his age) videos, he plays the videos and gets excited (jumps, shakes hands, runs here & there), doesn't want to leave the computer, melt-downs (jumping, banging, stomping) started when computer is taken away.

Major Behavioral Changes

When Tanishk's behaviors were so bad in his last vacations, we were not able to control his behavior through ABA therapy and motivational system, and most of the time we spent in screams, shouting and crying. I was so frustrated all the time and wanted to have a quick solution, as it was creating a hindrance in his learning too. He was not able to focus or concentrate on any thing. I decided to find out other ways to help him to calm down & be more focused and attentive. I read about Sensory Integration Therapy, Massage Therapy, Bio-medical Intervention and Dietary Intervention. And also I tried to find out more activities to keep him engaged every time.

Already, I was following the GFCF diet. We were wondering where we are going wrong. I was reading a book on Digestive Enzymes - Enzymes for Autism and other Neurological Conditions written by Karen Defelice. This book says that if we give proper digestive enzymes to our autistic kids, their gut can heal sooner and it is also possible that we don't need to give any specific diet to our kids, just digestive enzymes will also be sufficient for gut health. So, I started to give digestive enzymes regularly to Tanishk. I started to give Papaya & Pineapple more as these two fruits have digestive enzymes.

Tanishk was so much hyperactive those days and very much uncontrollable. My husband was suspicious about thyroid medication and also digestive enzymes. Then I & my husband decided that we should stop all the medications and supplements, and then we should introduce them one by one. That worked amazingly. His behaviors were lessened.

We started only thyroid medication and B12 shots. Then we started Oxytocin nasal spray prescribed by doctor and also gave calcium-magnesium supplement. The day when we gave Tanishk his liquid calcium-magnesium supplement, his behavior was tremendously changed. That day was totally amazing day. I was doing his therapy and I had to take the data on his behavior. He was so much focused and attentive. He did everything very nicely and he was complying all the instructions. He did puzzle so nicely and without any behavior. I was shocked to see that he even didn't need any prompt for his tasks. :) 

I read a book Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery written by Karyn Seroussi. This book tells us about the dietary intervention / elimination diet. This book gives much stress on the GFCF diet and says every one will get benefit by it, even if they don't have behavioral problems. After reading this book, I started to believe strongly in dietary intervention. Now, my theory is that instead of taking so much supplement tablets or gels, we should eat the proper food which contains all needed nutrients. We should try to get most of the nutrition through diet. I started to include more vegetables and fruits in diet, started to cook food that needs very less cooking.

Recently we saw few major changes in Tanishk. He was calmed down. Now he has less behavioral issues. He has become more attentive. Yes, still he has behaviors but less frequent. He still repeats the things & talks, but also listens to us. He reads the books, plays with toys appropriately. He solves the puzzles more focused. His handwriting and coloring are also improved a lot. He has become more cautious about his behavior, people around him and their reactions. He corrects his behavior when I give him a quiet look.

He plays hide & seek with his father. He likes squeezing against us. He understands most of the things what are they. But he doesn't understand reasoning. Why he should wait? Why he should not run or jump anywhere? Why should he be quiet sometimes or loud sometimes?

He understands word quiet & loud. We got to know that when we went to the library & read a book about quiet & loud. When he was reading, he was changing his tone appropriately for quiet & loud things. He was awesome. But, when someone is sleeping and we tell him that he should be quiet or whisper, but he doesn't understand.

After long time

I didn't write anything after my last post in July. I thought but I didn't get any time to write in these days. My both sons made me very busy. In these 5 months, there were so many ups and downs.

As I had written in my last post Summer Vacations, that Tanishk's vacations went great in june. But again when his vacations started in August, it was not that great. I tried my best, but this time it became very tough to get him focused on the tasks. Every-time he wanted to go out. He started to show his tantrums - screaming, shouting and crying loudly. He wasn't ready to understand any reasoning. But It was not so bad too.

I followed the activity schedule and gave him rewards on his completion of tasks and good behaviors. He became more aware but was less focused. His sensory issues were major. His nail biting, teeth grinding, touching his toes, picking up nose, pressing his lips, jumping and running here and there, not sitting still, looking from the corner of eye, lying down on the floor, walking on the toes, playing with the wheels instead of cars, pressing the buttons of the gadgets, verbal stim, flipping the books etc.

Tanay is also growing up and seeking my attention especially when I was trying to concentrate on Tanishk. Now Tanay is also not easy to keep busy. He also has started to cry and scream for most of the things. He also wanted everything Tanishk has. He wants to sit where Tanishk is sitting. When I want Tanishk to sit still, Tanay comes and pushes him. Tanishk gets distracted when Tanay makes noises or plays. They make fight for one common thing - car, book, toys etc. Still, they are like that. They both are at same level and wanted to play with same thing at same time. They don't want to share at all.

Now Tanay has grown up strong and has also become very particular about things he wants. If he wants something, then he wants it surely. No negotiations please. It is same for food. If he doesn't want to eat, no one can force or prompt him to eat.

Tanishk's behaviors became more worse now. He had become stubborn. He didn't want to get out from the car or stroller. He didn't like to go anyone's house. We went for Ganesh Puja at my friend's place. Tanishk didn't enter the house and started to scream when we forced him. Tanay got scared and he also didn't get in. My husband had to stand outside with both kids for one hour. Then we decided to leave from there as it was no point to stay there if the kids are not getting in and attending puja.

We went to "Touch Me" museum and both kids were in the strollers. Tanishk didn't take any interest there and just wanted to keep sitting in the stroller & moving. Whenever we stop to see something, he started to scream and just said "I want drive". Tanay enjoyed a lot there.

3-4 months back there was a birthday party in our neighborhood. He started to scream and was uncontrollable. I had to come back with him leaving Tanay with his father. Tanay enjoyed there.

When his behaviors got so much worse and were uncontrollable by ABA therapy too, we thought to stop all his medications and bio-medical supplements. We stopped everything for one week. And then we start with only his thyroid medication and B12 shots. Behaviors were lessened. Yes, something was going wrong. Still there are behaviors but the frequency of those behaviors are lessened. And also became more focused and attentive.

Last week, there was one more birthday party of 2 year old boy. Tanishk went there. He was well behaved. He was sitting on the chair nicely. He also played with piano. So, we were happy that he didn't create any problem there. After coming from there, he said "I want to go to birthday party".