Yes, we got it!

The search is over! A company has sold us health insurance. Vignesh now has his health insurance just like anyone else his age. And, just like anyone else we just had to give his medical reports for getting the insurance. We were so unhappy about the discrimination in the insurance system. Now,we are extremely happy and at peace. While we're excited, we hope that he stays healthy and we never get to use it.

I'm so thankful to the person who helped us through the procedure and the insurance company for treating my son without any discrimination!

Project Darya - A Grand Sucess

Its a happy thanksgiving story. Darya has been gifted with a loving home for thanksgiving. Hats off to Lydia who has raised over $265oo in just 8 days and the money is still pouring in. Lydia has achieved the impossible. I have learnt a couple of things from Lydia.

That a good-crazy-love can succeed over grownup-experience & logic. I have followed my heart when I was young and as I grew up, I suddenly stopped believing in miracles. So, next time I feel strongly about something, I will follow my heart rather than pondering if it is impossible.

Next time I read or hear a cruel remark about disability, I would understand that these people are just a minority and that there are a majority of people who value and respect people with disabilities. Because, if not for the financial help and the prayers of a lot of people it would not have been possible for Lydia to achieve this tremendous feat.

And, above all thanks Lydia for reminding me the value of faith and hope.

P.S: If you haven't been following Lydia's story yet, you can do so by clicking here.

Project Darya

Yesterday, I read about this amazing -year old girl Lydia and her Darya project. She is on a mission which might seem impossible to so many. Her mission - to rise $20,000 by Thanksgiving. So, why is she doing this? Because, she fell in love with this cute little girl Darya from 'Reece's rainbow'. She wants to bring brighten up Darya's life by bringing her home. She started this project hardly ten days ago and she has already collected $13,000! Love, faith and goodwill of a lot of people have helped her reach so far. With hardly a day to go, her family is still hopeful for a thanksgiving day miracle. To know more about 'Project Darya' and be a part of it, just visit their blog by clicking here.

OT Assessment and Report

I had taken Vignesh for OT assessment last month. The assessment was an eye-opener to me. On his first try, he pulled a thread attached to a toy in order to reach for it. He had never played with a similar toy before and I was pleasently surprised to see that he was able to work out the logic on his own. I was also impressed with him handling the toys. For example, if it was a rattle, he began to bang it on the floor and if the toy did not make a noise he was trying to pull it or bite it :-)

On the other hand, the therapists were also able to point out a few issues. One of their major concerns was that he wasn't moving yet. Since there was no form of motion, he had to entirely depend on us for anything that he wanted. While, I'm so waiting for him to crawl and walk, I have never been thinking about the dependency angle so much before. It began to worry me.

In the past few weeks, Vignesh would scoot but only for a very little distance. In the past few days, he has really picked up speed. Suddenly today I noticed that he is moving really fast. I would leave him with his toys and go to the other room and within 5 minutes or so he would have moved significantly. He is also trying to push himself up using his arms but he loses balance quickly. I'm not sure if this is the first step towards kneeling or crawling or standing. Whatever it is, I would be so excited when it happens.

We also learnt that until about 6 months, a baby might just try to bang or throw toys around. This is called as destructive play. As the baby grows the games will get more meaningful. Its a little worrying that a lot of times Vignesh is more into destructive play. But, he is gradually learning I guess. These days he is trying to stack toys together instead of just banging them.

So, after a lot of delay, I received the hard copy of his OT report today. And, with some progress taking place, I'm not worried as I was last month. I'm in fact excited. My son might be scooting, crawling or walking later than non-ds kids. It is worrying but only until he achieves the milestones. Once he is there, the happiness and the excitement is so immense that it makes the wait all the more worthy!

Health Insurance woes

Since my son was born, I have been trying to get an health insurance policy for my son. I have still not been able to. I have spoken to so many of them. Some have refused because of down syndrome, some due to his heart surgery and I guess there was a company that refused because he had tracheostomy. Some of the insurance companies have it clearly listed 'genetic condition' under permanent exclusion. Isn't this the worst form of discrimination? Isn't it unethical that they would not sell the policy to someone because there are chances that he might need it the most? This whole system is frustrating and tiring!

Of course, there is a government scheme offering insurance to people with disabilities. The monetary cover provided by the policy isn't too much but then something is better than having nothing at all. So, I decided to apply for it. When I approached people for an application form, they informed me about the process. They wanted me to get a national id card where a doctor would examine my son and certify that he is mentally retarded and provide the percentage of retardation. Only after getting the card would I be able to avail government insurance. But, I have his karotype report stating that he has down syndrome. Shouldn't that be enough? Looks like it isn't. Only a national id card stating my son is mentally retarded would be accepted as a proof to provide him health insurance benefits.

What I don't understand is that why should this be required to get a simple health insurance policy? This policy isn't going to cover his therapy charges or anything special that a normal health insurance wouldn't cover. This is just like any other health insurance policy. They do not cover anything special. When I can get a health insurance policy without having to prove my mental capabilities, why should my son prove otherwise in order to get his? Also, how is a doctor going to examine a 15 month old, evaluate his mental condition and come up with the percentage of retardation? It all sounded so unfair and I immediately dropped the idea of availing the government health insurance for my son.

Ok, going back to the private insurance companies, the telemarketing calls that I receive are so pathetic. There is usually some insurance agent desperately trying to sell me a policy. I tell him about my son and he immediately asks me what is down syndrome. (this has happened in almost all the telemarketing calls). I tell him its a genetical condition and they don't usually understand. So, I try to explain in layman terms and by the end I hear the agent saying 'Ma'm we wouldn't provide cover for this disease but all other diseases would be covered. And, after four years or so, you can also get a cover for this disease'. Do they even listen when you take time and explain to them what things really are! So, I just ask them to note down the word 'down syndrome' consult their superiors and get back if they still think they could sell us their policy. Almost most of the times, I never get a call back. I'm not sure if its because they can't sell it to us or the agent found it unworthy of his time to find things. Just once a person called back and apologised because the company doesn't sell policy to people with genetical problems. I was angry but at least I was happy that I don't have to approach them again.

When my son was admitted in January this year, he was on prolonged hospitilazation. Within hardly a fortnight all our money was almost spent. We had no idea what we were going to do. That is when my aunt, people from the Down syndrome federation of India and my husband's collegues came to our rescue. We never asked anyone for help. The help just came and we were able to manage the situation. But the bigger question is what about other kids with down syndrome? What if no one comes to help them out? Why should they suffer to get medical assistance just because they are born with down syndrome or other similar condition? And, why should things be made more complicated for parents like us when we have a lot of other medical complications to worry about?

I wouldn't blame the government for not providing enough medical funds. India is still a growing economy and with a huge population, it is difficult for government to help beyond a certain point. On the other hand, they should be able to put a stop to the discriminatory policies adopted by the private insurance companies. Health care should be available to all and denying it to people who need it the most makes no sense at all.

I'm just hoping for a positive change would come over soon. In the meantime, my search still continues. Tomorrow, I'm planning to fill out a form and apply for my son's health insurance with another private insurance company. Will have to wait and see what happens. Until then, just wish us luck!

Inspirational Videos

Recently, I wrote about introducing ABC flash cards to my 15 month old son. My good friend Lianna has been kind enough to share the story of how she had successfully taught her son Gabriel ABCs when he was really young. She had also shared the pictures and videos of Gabriel rightly identifying his alphabets when he was as young as 22 months. Honestly, when I was that young, I did not even know there existed a language called 'English'! lol!

Well, getting back to the subject, it was a great inspiration to see cute, little Gabriel working with alphabets and it surely gives me a great confidence in my journey with Vignesh. I found it inspirational and too cute. Hence wanted to share the links with everyone.

Here is a post of really young Gabriel identifying the alphabets.
http://mylifewithgabriel.blogspot.com/2009/11/alphabooks-for-sumithra-vignesh.html

And, here is a post of him actually naming them when he was just 29 months old
http://mylifewithgabriel.blogspot.com/2009/11/gabe-naming-alphabet-letters.html

Thanks Lianna for sharing your story and the videos! I'm sure it would serve as a motivation to other parents who are out to begin their journey like me!

My new choco french beard

Flash Cards - Part II

To read the first part, click here.

Last year, I had attended a workshop by Down Syndrome Education International (www.downsed.org) and their model flash card struck a chord with me. So, I wanted the cards to be thick and covered with a sheet just like the ones I saw. I cut out thermocol sheets, pasted the pictures of the alphabets and covered it with glass paper.

Here is a photo of some of a flash cards that I made:



Apart from showing Vignesh the cards while spelling them out to him, I also get to give it to him to explore them. I put it in between his toys so he gets to play with them. The more he sees the cards, the more familiar the alphabets would become. Vignesh, usually tends to tear or crumple papers. Now, this is so thick and also covered with a sheet that he isn't able to damage it.

So, it was really worth having all the tiny thermocol and bits of glass papers flying everywhere . My husband even asked me why I can't go ahead to use one of the ready made flash cards that I had purchased. But, I tend to dislike things that are off-the-shelf. Plus, I had fun preparing them. I just felt like a first grade student again.

Everyday, I continue to show him the ABC zoo game on the fisher-price site. I show him the cards either before or after he sees the ABCs on the site, so that he would be able to understand what I'm doing. I try to imitate the alphabets and the words in the exact manner as it appears on the site . Apart from that, I try to bring the cards up whenever we play games.

Its has hardly been a week since I started introducing these cards to him. Will continue to show him the flash cards everyday. The day it starts to show results, I would definitely be sharing the story with you on the blog.

Here are the links to the peek-a-boo and ABC zoo games the fisher-price site:
Peek-a-boo - http://www.fisher-price.com/us/playtime/games/infantGames_B_BS.asp
ABC Zoo game - http://www.fisher-price.com/us/fun/games/abczoo/default.asp (choose the option 'infant' to go through the sequence automatically).

My evening stroll

My appa (father) takes me to walk in the mornings and and evenings. Just wanted to share pictures of my evening walk today.

Getting ready for the stroll

Posing for the camera

Oh, wondering why I'm crying

Appa made me sit on a narrow passage!

Still angry with my appa

This is my favourite game

Heres the secret behind my 6 pack abs!

Waiting to grow big and get into the pool

Something is bothering me


Oh, I already miss my amma. Want to get back home!


Back from walk


Now, here a photo of me standing on own, leaning against a wall.

I was kissed!

I'm so excited. Something incredible happened today morning. Vignesh kissed me. A lot of times too. As of now, his version of kiss is a little different . Its grasping my cheek with his wide open mouth. He has done it before too. But, I wasn't sure if he just trying to bite or kiss. But, today, we were standing in front of the mirror and I kissed him. Immediately, he held my hair (just like I how I hold his head or face) and started to kiss me all over my face with a big smile. It felt great! (Of course, it hurt a bit since he was pulling my hair. But, who cares!)

Vignesh, you make me so happy everyday and I love you.

Flash Card - Taking Cues from my son

A quick history. I decided to introduce flash cards early. When I found my son had down syndrome, it only made me more intent. I searched online and read about Glenn Doman's books. It took more than a month to get the books as they had to get it from the US. I was excited when I read the books. But, I was too busy with the hospital visits that I never found time to prepare the flash cards. Thankfully, I found a place close to my house where they offered program similar to Glenn Domans. I attended a one day program and material were almost in accordance with what the Glenn Doman book had said. But, even after I received the material, I have never been able to stick to the guidelines that were given in the book. Either I found no time or I kept forgetting to introduce the material as mentioned in the book. And, I felt very guilty about it.

About a few months back, while I was searching for online games appropriate to Vignesh's age, I was lucky enough to come across the fisher price online games site. ( You will see the connection with the flash card as you keep reading). I introduced him to peek-a-boo and ABC zoo game. He loved them both. I had introduced him to peek-a-boo since it was colorful that he might find it interesting. With time, I found that the game served as a 'Cause-Effect' concept. Every time he touched (or rather banged) the keyboard, there would be color and noise on the screen. He began to understand this and whenever the screen would go quite, he began to bang or scratch the keyboard harder.

Heres are the links to the peek a boo and ABC zoo games:
Peek-a-boo - http://www.fisher-price.com/us/playtime/games/infantGames_B_BS.asp
ABC zoo game - http://www.fisher-price.com/us/fun/games/abczoo/default.asp


This really helped him in the ABC zoo game since this was interactive and the keyboard has to be typed to move from one letter to another. Most of the times, he keeps pressing the keyboard until the entire alphabets and the ABC song is complete. Now, in this ABC zoo game, for every letter, an animal name starting with the alphabet along with the noise made by it is displayed. Both visual and audio parts are good and easily attracts and withholds Vignesh's attention. I would highly recommend it to others too.

Once he reaches 'Z', the next keystroke would get the ABC song that he loves. I sing this song along with the voice in the website. So, once the song begins, Vignesh would turn around, see me singing along, give me a smile and get back to staring the monitor.

And, something wonderful happened about 2 or 3 weeks back. Whenever he reached the letter 'Z', he got excited and turned around. Previously, he used to do this when the ABC song began. So, this meant that he knew what was coming next. That he was identifying the alphabets. (though I'm not sure how many he identifies and what it means to him at this point). I began to notice his behavior everyday to make sure that it was not a coincidence. I'm happy to say that it isn't. I'm so sure that he identifies at least the alphabet 'Z' if not more.

This gave me the idea. Since, he is familiar with the animals on the site, why not prepare the flash cards using the screen shots from this site. That would make it easier for him. Thus began the first step towards preparing and introducing ABC flash cards to Vignesh.

Ok, before I make this post too long and boring, let me take a break here and continue with the story tomorrow. Will post pictures of the flash card tomorrow. Sorry for such a long post. I just wanted to share all the details.

Its my life!

Lots of happiness

Lots of love

Moments of Fun

And, moments of tears

Toning my muscles

And, flexing my brain

With a little rest

There is never a dull moment!

I lead a complete life just like anyone else. You see my 21st chromosome doesn't really make a difference (except ofcourse, making me a little more cuter)!

Everday Brags

Finally, its raining and getting cold here. Oh, we have been having a very hot summer since February this year. Once the rains began last week, everyone around seems to be excited.Just checking the status in various networking sites shows how happy the people in chennai are about the weather change. And this weather is making me even more lazy. I just log onto the computer for a few minutes everyday, check my emails, visit my favorite blogs and thats it. I laze around most of the day.

Thanks Lianna, for reminding me that I haven't posted anything for a long time. (BTW, she is hosting 'The Buddy Walk Bootie Give Away' till November 6th as a way to celebrate down syndrome awareness week. To enter the contest and win a pair of cute booties, just visit her blog by clicking here. And when you visit her site, just don't miss out on the videos of Gabriel picking up the winner. The videos are incredibly cute)

Time now to brag about Vignesh. He has grown taller and I'm so happy. He was stuck at 68-69 cms for nearly 6 months since January and as advised by a doctor, I increased his protein intake. He is now 74 cms and I'm just hoping the soy milk would continue to do the magic.

And, he just loves standing. He can stand leaning against the walk for more than ten minutes. When I make him sit, he just reaches out for my hand and using the support stands up on his own. Last two days, he is resting his hands on a pillow and trying to stand on his own. He needs a little more effort n practice on that one though. However, he still refuses to move his feet when we try to make him walk.

Today morning I had left him with his feeding bottle in front of him. He picked it up, placed it correctly in his mouth and even held his bottle horizontally, trying to feed himself. Now, thats was exciting to watch. But, when it comes to solid diet, he would not even try to put it in his mouth. He would bite his toys but if he knows its a biscuit or some other eatable he would drop it down and open his mouth so that we can feed him.

For sometime, I had also been worried about his pincer grasp. He wouldn't try to hold anything tiny. But, his grasp seems to have improved. When I place my tiny earrings in the arm rest of his chair, he immediately picks them up and throws them away (he likes to have his chair neat. He would throw away anything that we place on the table attached to his chair).

Oh, how I love bragging about my dear son. But, got to get back to preparing flash cards. Will be back soon with the flash card story.

Steve Jobs - Inspiring Speech

I came across this video a few months back. Its a video of Steve Jobs Stanford commencement speech. Its an old video. For those who haven't seen this already, its really worth watching the it. Its very inspiring and provides an optimistic view of life.



One of my favorite quotes 'Every story has a happy ending. If it is not happy, it isn't the end of the story'.