Down Syndrome Celebration - Part II

Kids and their proud moms

These girls were so talented at keyboard

Dance and Expressions

All of them having fun dancing to Jai Ho

Eye glasses

Last week we had eye appointment for Vignesh. His previous eye appointment was done over a year back. And, he had positive power in his eyes. Since he was just 5 months then, the doctor had wanted us to wait.

So, when we went last week, they checked his eye and the power still remains the same. Since, +5 is significant, they have recommended glasses. I was reluctant. I cannot imagine my son wearing them at all. Because, he hates any 'extra accessory'. Be it a cap, sock, shoe and sometimes even diaper, it irritates him. His trach tube and thermovent on his neck are outside his line of vision. And, yet he tries to pull them. How do I make him wear glasses thats going to be right in front of his eyes? I have no clue. And, seeing our reluctance, the doctor told us that he might end up with a squint, in case we don't go for glasses. And, she also added the usual statement that how DS kids are already delayed in milestone and without glasses there would be further delay.

Over the last few months, I have come to have more trust in the advice and judgment of other parents than even doctors. So, I wrote about it in the downsyn forum and wanted to know if anyone else has been through this. And, most of them had wanted me to follow the ophthalmologist's advice.

A piece of good news though. I heard from an optometrist that as he grows and the eye lens gets bigger, the positive power would come down and that glasses might just be temporary thing. Ironically, we get similar comments for his tracheostomy too. As he grows, his airway would widen and he can be easily out of the trach. Oh, how I wish there was some magic formula to make his grow fast!

Now we are left with no choice. But, we still have the prescription safe in our bag. We are just procrastinating getting the glasses. I'm tired being behind him all the time to make sure he is wearing his thermovent. So, its going to be one more challenge. Just wish me luck.

Not always sweet!

After spending about 18 months with my son, I'm just learning that other side of Vignesh. I have always defined him as sweet, whenever someone asked me about him. Probably, he got bored about the tag that I was attaching to him. So, today he showed me the other side of his personality.

We had an ENT appointment in the morning and reached home by noon. His eyes were tired and after spending a few hours in trying to make him sleep, I gave up. Gave him a late afternoon bath and took him for walk.

He usually listens to music on my cellphone all through the walk. But, today it slipped and fell down twice or thrice. And, somehow he began to enjoy the game. So, he began to deliberately throw it and look at me to pick it up. And, when I refused to give him the phone, he began to pull his trach tube.

He knows too well that scares me and makes me angry. But, he thought that was the best way to get back at me. I was a fool to doubt if my son understood things around him. Today he just showed me how much he knew me. I tried to test him though. When I gave him the phone he would start playing the 'throwing it away' game. And, when I refused to give, he would turn towards me and try to pull out his trach tube. And, I tried both sweet and harsh methods, but he was so keen on driving me crazy.

I would have enjoyed his smartness if it had been anything but the trach tube. The tube is his airway and his breathing and life depended on the tube.

I'm so tired and I have been waiting since afternoon to take a little rest. I don't have energy to deal with him today.

Thankfully, his OT was postponed to evening. He is now in his OT session. I can hear from across the room. From his OT's voice, I can understand that he is giving her a tough time today. After the session and dinner, he should be going to sleep. Hopefully, he will be back to his sweet self tomorrow.

Down Syndrome Meet - Part I

The Down Syndrome Federation of India had completed 25 years and they celebrated the milestone with a grand celebration last Sunday. When we went to attend the event, we thought it was going to be a parent's meet sort of a thing. I was so excited because I never got an opportunity to attend any such meetings before. I love to connect to other parent s of kids with DS . Its like meeting someone who speaks the same language as you do. Someone who can really understand you. Someone to whom you don't have to explain things. Someone with whom I don't have to be on guard all the time to make sure they don't say things that might hurt my son's self esteem.

OK, getting back to the meeting, we were little prepared for what was in store. We were pleasantly surprised. Even as we entered the huge hall, the entire room was dark. And, on the brightly lit stage on the other end, were two young adults with down syndrome with their keyboards and one of them was playing a music. I still do not know why, but I broke down immediately. I was happy and yet I couldn't control my tears. I'm still trying to figure out the reason behind those tears.

The two young adults were wonderful with their keyboard. And, it was followed by a lot of other events. The kids and adults from different special schools from all over the state had come to perform and it was so wonderful to see their enthusiasm. They all just rocked.

Indian classical dance is called 'baratha naatiyam'. In this form of dance, expressions on the face are as important as the movements. And, they were a few girls who had such excellent expressions and they were able to coordinate their movement and expressions at the same time. And, I was so happy to see a particular guy dance for a song. He was actually using his flexibility to perform complicated dancing steps which non-ds community would find difficult to do. And, he did not forget even a single step in the entire song.

And, they wanted all the kids on the stage. Even as I was walking towards the stage with other moms and their young kids, again my eyes began to flood. I was worried if I would end up crying on the stage. Thankfully, I got busy with waking Vignesh up and getting him to feel comfortable to the bright light. It was so beautiful to see all those kids there. And, they played a song from a movie. Some kids stood up and danced. And, even some of the the younger ones began to rock on their bum. Its was so cute. Vignesh just woke up and he was just trying to figure out what was going on.

It was their day! Some of them were perfect in their performance, some tried to be at their best and some needed help to perform. Each one was unique just like their non-ds peers. But, there were a few things that was common among the kids and adults I saw on the stage. Not a single person feared being on stage or performing before a huge crowd. And, instead of trying to please others, they just forgot the world around them and truly enjoyed what they did. I guess that is a lesson that the world needs to learn from them.

I was so happy to be there. I'm so thankful that the Down Syndrome Federation of India decided to celebrate their 25 years the way they did! It just made me realize how happy I felt being a part of the down syndrome community. Our kids rock and I'm so proud of my son's extra chromosome!

P.S: I hate myself for forgetting to take the camera. Anyway, will get in touch with the down syndrome center and try to get some of the photos and post it here.

I'm back!

After a long break, I'm finally back. I missed reading my favorite blogs. I missed sharing stories about my son with my friends. I have started taking up freelance work and it has been keeping me away for a while. But, I truly missed being away from the wonderful blogging family.

First, I want to thank my good friend Lee. Lee and her son Gabriel have always been an inspiration to me. Through her blog, I came to know about Gabriel 's excellent reading skills. I decided to start reading to Vignesh and wrote to her with a lot of questions. She answered my doubts and even offered to prepare a customized book that could get Vignesh interested in reading. It was an excellent gift that we would always treasure. Here are few of the pages that she designed for him:

Thanks Lee! I'm so touched by your friendship and guidance.

Lianna has written an informative post on how she went about introducing books to Gabe in her blog. You could also watch Gabriel reading by clicking here. They are so cute and inspiring.

And, to other updates, we have started home therapy for Vignesh since Feb. This means he won't be traveling everyday to the therapy center. Since he loves going out, I take him out for long walks in the evening.

He listens to music from my cellphone throughout the walk. I don't know why, but people find it amusing to see a 'baby' (grhhh....thats how people usually address him) listening to music with such interest.

And, sometimes when his father takes him out for walks at night, this is how he comes back:

I'm so happy that Vignesh has begun to cooperate a bit when we try to make him walk. He is now moving his leg forward (a few steps at a time) on his own. This is huge because for months he refused to budge whenever the therapists tried to make him walk.

Vignesh had refused to drink water for a long time. Now I have found that he is happy to have water when I give him directly from a water bottle (such as kinley) or from a glass. He doesn't want to use feeding bottle for water. If he thinks he is such a big boy, why can't he eat on his own! But, who can question him? He is the boss at home.

Thats it for now. Got an early appointment for his eye and ear check up tomorrow. Will keep you all posted.