Happy New Year 2019

In these last few years, there were lots of ups and downs in our lives. We saw lots of gains, light of hope and achievements on different occasions, but we also saw some regressions, behaviors, opposition, non-compliance. We are never able to pin-point the causes of gains or losses. But yes, I think personally that it is part of growing up.

We went through lots of changes in our lives - changed house - owning the house means more responsibilities, father-in-law's health and his passing away. We also tried AC Chelation, Stem Cell therapy, IV Chelation. Every year, Tanishk kept learning (slow motion) new skills - academic, communication, sports, yoga and gym, piano, gymnastics, household work etc at PCDI. He worked with several different teachers and peers. Every year, he participates in piano concerts.

At home, we also hired private therapists to give him extra structured time (we stopped in the end of 2017) and to learn new other skills - coloring, drawing, playing and social communication skills. He has also started to go to gym with his father and he runs on the treadmill. He also does exercise at home with his father.

His memory is good. He has started to recall all his previous events and learned facts. He remembers streets, places and things mostly. Now he remembers the dates attached to people - like birthdays, anniversaries or other occasions. He loves to go to parties and have fun (still he talks but no conversational skills). He remembers most of names of cars, singers and music bands. He also sings very well and he learnt it by himself.

What else should I say, I don't know. I remember my first post I have written, I was looking for the end. But still I didn't get to end. I still wonder how far do I have to go to get the end. But now I accept this as part of my life. I don't let autism be my hindrance. I didn't accept autism, but I have accepted my kid as little bit delayed. I will keep pushing him forward all my life.

So, I wish all my readers Happy New Year 2019 and I will try my best to keep posting updates. I am hoping more good things in 2019 and I ask my readers to pray for us. Thanks in advance!!

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.

Awesome Moments

My son started to speak when he was 2.5 years old. He learnt to ask things he wanted like water, cookie, soda, chocolate, etc. Now he is 7 years old and still most of the time he used his speech to ask for something or he keeps talking to himself repeating the sentences (vocal stimming) or he does scripted talks.

We don't have any conversations with him. When we start talking to him, most of the time it converts in question answer session instead of meaningful conversations. He doesn't ask any questions or doesn't show any curiosity in anything except electronic gadgets.

But always he was lovely and affectionate boy. He liked hugging and squeezing. He is very calm and happy boy. He shows only the tantrums when he doesn't get his favorite thing - iPad or iPhone. Since few months, I have seen major changes in him. He is being more affectionate than earlier. He started to ask for more hugs and squeeze.

Lately, he started to show his affection in new ways. He started to kiss me all the time, whenever he feels to. I love how he kisses me. He says - "I want to give a big kiss." Now, kissing has become his obsession. He kisses me like a lover - he holds me tightly and kisses me on the cheek. He keeps kissing me everywhere - even at public places. (Personally, I enjoys his kissing as that gives me a great pleasure. I feel a bond with him.)

I was also worried as he tells his wants but doesn't tell his feelings and pains he is going through. But 3-4 days back he himself started to tell us if he is hurt. Two days back he told us that something is stuck in his teeth and he himself pointed where is the actual problem. Earlier, we always used to keep guessing where he has problem.

Yesterday, weather was good so we went to park. Both brothers were enjoying. There was a balance bar on which kids have to balance themselves when walking on. Earlier I used to force him to walk on it and he used to walk away from it. Yesterday, he came to me and called me - "Mumma, I need you" and take me to balance bar to help him. I felt very happy.

Today morning, when he was taking shower, suddenly water became cold. He called me - "Mumma, I want hot water." In the evening, he went inside the bedroom. The light was off and he came to me - "Mumma, I want light on."

These were my awesome moments. Atleast he is coming to me when he is in need. He is expressing himself and he is now feeling confident in coming to me for help. I really feel great. I hope he starts to initiate talks too.

Two Extremes

As you can see that I had a big break after my last post, several things were going on in my life. Most important thing was that my kids are growing up and they want more time, attention and effort to deal with them. My both sons are two extremes.

As I have written in my Computer Stimming Series posts, it was very difficult to deal with both the kids altogether. Still Tanishk likes all the electronic gadgets and can keep himself busy in stimming.  Still, it is very difficult to motivate him to do something else as he has not much interests. He doesn't want to learn anything, just wants to pressing something - buttons on TV, Computer, Fan, Microwave, Gadgets, anything. He is verbal. He is smart. To get these things, he can manipulate us. He comes to us only to get whatever he wants. He is not withdrawn kind of kid, but he is not interested in anything until unless he can get gadget in return. He is not curious at all.

My other son Tanay is extreme case of his brother. Tanishk doesn't want to do anything. Tanay wants to learn everything. Tanishk runs away from the puzzles, books, activities. Tanay wants to do more & more. Tanishk has no imagination, he repeats only whatever he has learnt from videos, TV, teachers and parents. Tanay has got a great imagination, he can make his own stories. Tanishk doesn't take interest in anything and doesn't want to know about anything. He doesn't have any curiosity. Tanay is a curious kid. I have named him as "Curious George". Tanay wants to play with his brother, and Tanishk pushes him back as he doesn't want him to come in his way.

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.

Major Behavioral Updates

My sons - Tanishk (6 yrs old) & Tanay (2 yrs old) are having very different personalities. But, they both are great in their own ways. They both are handsome, lovely, affectionate and joyful. One year before I posted about interaction between them - Tanishk With His Little Brother. In this one year, they have got developed new skills and behaviors. Tanay is very particular about things. He fights with his brother for things and he doesn't want to share anything. Tanishk also fights for things he wants.

I was reading last year's posts when I started this blog - Tanishk, Tanishk's Birthday and Major Behavioral Changes. Tanishk has now started to understand his environment and other things. He now understands what is said to him. He has got new skills in writing words & numbers. He is now working on comprehension skills and recalling events. He has got more eye contact, calmness. He now listens carefully and does the task with his attention.

Tanishk has changed a lot. Now, he is so much aware of the environment. Sometimes, he also comments on things going on in his environment. The comments are not so often, but they are very appropriate. He is sometimes very much stubborn, but all kids are like that. Throwing tantrums and meltdowns are very less. He listens and understands most of the things, but he is not sure that how to react.

Both brothers fight with each other, but also like each other. First time I saw Tanishk to observe somebody. He observes his brother and tries to do the same thing. Two days back, they were fighting for playing with a red car. They wanted the same thing. First I told them to share the car. But they don't understand. I taught them to take turns - Everyone had chance to have car when I am counting till 10 and then give. Then they themselves started counting till 10 and gave car to each other. Next day, they were fighting for another toy. I heard that Tanishk was counting till 10 and he gave the toy to Tanay himself. He didn't get any prompts. He himself initiated and I was amazed.

In last 2 months, there were more incidents where Tanishk was behaving appropriately. He seems more connected and was talking nicely. I have mentioned one of those events in my last post - Hi Neera. He has also started to show his new interests. He likes to stand outside and watch all the cars. He likes to play basket ball. He sits in the library very nicely. He himself chooses the books to read. One day, we were in the car and I was sitting on the backseat with him. He looked at me and he was smiling continuously. There was a light in his eyes. I was also smiling at him. It seemed he was saying - "Mumma, don't worry. I am here with you. Just don't give up." I feel very proud of him.

Light It Up Blue

When Tanishk joined his current school placement in Sept of 2010, it was the biggest moment for us. It looked and felt like the end to struggles, a great achievement. We felt we won't have to think much after that..umm - worry ourselves to death - the thinking continued. We follow the school's instructions and methods. And I must admit that it helped us a lot. We took our time to learn, but we are getting there. We have a long way to go, like in any learning..

We knew that Tanishk has a photogenic face - he would add he is a good looker. His childhood photos were very good. But when he grew up, he started to make faces and kept showing behaviors. He doesn't stand still in front of the camera. Whenever, we take his pictures, they were on average. There were some good pictures too, in case we got him unaware.

Tanishk on the bean bag - 2006

Tanishk like a sports man - 2007

Tanishk in traditional dress on Diwali - 2007

Tanishk when he came to US - 2008

Tanishk at Rainforest Cafe - 2009

Tanishk sitting in the school van, first day to PCDI - 2010

When Tanishk came to US, he was non-verbal and non-responsive. When he was 18 months old, every one noticed that he is not responding to his name and doesn't listen. But, he used to respond on Hindi advertisements shown on the TV and to the phone ring. Whenever ads started, he ran to the TV from wherever he was. And the moment ads end, he was lost.

Whenever I called his name, he never responded. But whenever I uttered Orange, he came, even from another room. So, what was that? What would you say?

Thanks to all his therapists - Early Intervention or Private, who taught him talk. Thanks to early intervention, he verbalizes his needs. Thanks to his teachers at school and after school therapists, who worked with him. In that period, he was toilet trained. (Accidents happen, but not so often)

In the meantime, my husband was busy in trying to get Out of district placement for Tanishk as we wanted one on one therapy for him.We got a call from PCDI for his interview. There was one place vacant for next year. The staff people at PCDI worked with him for one hour. We were in the office. Special thanks to Laurie Paul Duddy, who made him familiar with the things which helped him in his personal interview. My husband recalls when the director stood up and grandly announced that the school was ready to induct Tanishk. I & my husband looked at each other silently for a few seconds.

Tanishk started at PCDI in Sept of 2010. He has completed 30 months in PCDI and he has learnt a lot there. He is more connected, attentive and focussed. He attends all the activities - reading, writing,   coloring, math, playing appropriately, comprehension skills, gym, yoga, group activities, social behavior, conversational skills, self-help activities (brushing teeth, dressing himself, eating food etc.)

Whenever PCDI asked for permission to take his pictures for any campaign or their newsletter, we acquiesced. We have everything to thank PCDI for.

Tanishk at PCDI - Halloween 2010

Tanishk celebrating his 5th birthday with his teacher Jamie at PCDI

Tanishk at Toys R Us Photo Shoot at PCDI (I got this from video on Toys R Us website one year before)

Tanishk at PCDI, watching TV - 2012

Tanishk at PCDI, watching TV - 2012

We totally forgot about that "Toys R Us" photo shoot. After one year of the event, we got a message that Tanishk is up on "Toys R Us" stores. We thought that he must be there in the store in a specific section. We reached the store and we were surprised. On the front door, there was a big poster with his picture and message for autism awareness.

Poster at Toys R Us Store

Toys R Us have also chosen his photo as cover photo on facebook - "Toys R Us" on Facebook

We are very proud of him. Thanks to the people who worked with him, who have taken his photo and who have chosen him for this campaign - "Light It Up Blue". I wish he spreads his light everywhere in this world and which helps increase awareness for autism.

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".