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.

No More Melatonin

Still, I feel that I am dreaming. Yes, it's definitely like a dream. Every night, Tanishk sleeps very easily without Melatonin. No screams, no shouting, no crying, and no fight. When Tanishk was younger, all nights were nightmares. We used to spend hours to get him to sleep and there no night when he slept without screams and shouting.

I remember when Tanishk was an infant he had a colic problem and every night he used to cry. I used to sit with him in my lap almost every night. When he became a toddler, he was constipated. It was very difficult to get him to sleep day or night. Every time it was a one hour job.

He became so active that he started to avoid sleeping. Every time he wanted to either watch TV or videos, listen to music etc. Even we switched off the lights, he didn't want to lie down on the bed. It was very difficult for us to get him to sleep. He slept little and we were worried about his health as he was active all the time.

We talked to other parents and the doctors. Everyone suggested that we should give him Melatonin so that he can sleep easily. We started to give him Melatonin and it was very effective. He used to sleep within few minutes after taking Melatonin. It was so much effective that a very little piece of tablet also worked. I used to give him very little. We were happy that he was sleeping nicely. But still we were not happy that he needs medicine for sleeping, he should take his sleep natural way.

I tried to get him to sleep without Melatonin several times. He used to lie down, but continuously he was restless. And his behaviors (continuously touching his nose, toes, lip picking, scratch over the body, grinding his teeth, changing his sides, asking for water) & vocal stimming was not letting him sleep. Every time I was exhausted & frustrated after his sleep. So we kept giving him Melatonin.

I researched about Melatonin and it's effects - I got few articles. Melatonin Side Effects and Melatonin Side Effects on Autistic kid. After that I wanted to stop giving Melatonin totally.

One month back our friend Neena came to our house and we discussed a lot of things with her. We discussed Tanishk's behaviors and she told us about how to deal with sensory issues. She suggested us OT for him and also suggested few tips at home. We told her that Tanishk doesn't sleep without Melatonin. She was shocked to hear that and said "Are you serious? He has definitely sensory issues." She suggested that we should let him carry some weighty things so that he gets tired and feels sleepy. She also suggested that we should massage his head, hands & feet with almond oil while he is trying to sleep. This will help him sleep easily.

Surprisingly, it helped a lot. Really, it was amazing. Now Tanishk sleeps with in half an hour. He still resists, still restless, still vocal stimming. But he calms down after massage and gets to sleep. No shouting, no screaming, no tantrums. I am so much relieved now. No more Melatonin. Thanks Neena!!

New Year 2012

Year 2012 has finally come and 2011 is gone forever. 2011 was very important year for our family. I took few moments to recollect major events of this year and I got few of them in my mind & have put my post Last Year 2011. 

We did not have any plans for how will we welcome new year. There were no invitations from friends and also we didn't want to go to restaurants or bars for new year celebrations as most of those events were for adults. I am also not good at throwing party, so what to do.

Tanay has got a new friend here in neighbourhood and his parents were also new in this area. They also didn't have any plans, so we just invited them. We didn't do anything special. My husband was busy whole day working from home. He was sad about it as he wasn't able to spend his day with kids.

Half day, I worked with Tanishk with his schedule and also with Tanay. And also I did the cleaning. Tanishk was OK. Just he was doing a lot of vocal stimming. Otherwise he was in good behavior and was listening to us. But yes, he was not complying everything as he didn't want to do. But he knew what we were saying to him. 

After lunch was done, I do some preparations. I cooked paav bhaaji and Veg Biryani. I baked 2 9" round cakes. Whenever there is an occasion, I try to bake a different cake just for my experiment as I don't get any chance to do trials. So, I baked 2 GFCF strawberry cakes, put the strawberry buttercream frosting in between them, sides & also on top of the cake and decorated the cake by the almonds. All was from scratch, no readymade mix or frosting was used. 

I liked this cake very much. This was the first time, I myself was satisfied with the cake. The cake was so tasty, no one could tell that it was GFCF cake. (I think so) 

Buttercream frosting was applied on the sides too

The family came with flowers. We were happy to see them. The kids also enjoyed the gathering. Tanishk was a bit lost. We all chat with each other. We had some tea and snacks.

We had dinner. All liked Paav Bhaji & veg biryani. Tanishk ate veg biryani & Tanay ate paav bhaji. Then Tanishk cut the cake with me. All ate the cake and they really liked the cake. Yes, they said so.

After that, we went to see fireworks at metuchen. Fireworks were very good. We were happy to see that we don't need to go to see fireworks anywhere else. It's just 5 minute drive from our place. We packed all the kids tightly for not to catch cold and went to see fireworks.

Tanishk was closing his ears but he was happy - look at his face :)

Tanishk was happy to see the fireworks, but Tanay was scared because of so much noise. He was looking at the lights in the sky too, but he was crying continuously. I took him to the car and close the car door to avoid the noise of the crackers. I didn't want to torture him. 

This was the way how we welcomed new year 2012. I wish all my fans & readers "Happy New Year 2012" and success in their lives.

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.