Thursday, October 1, 2015


Samaira will be 4 at the end of this year and Rehan will be two and a half. Its crazy! When did this happen? My favorite thing about them is watching them grow. Watching them grow into these quirky little (actually mega) personalities. Another favorite thing of mine is to watch them interact with each other. We could sit and watch them interact all day. Literally. Until of course they start pulling each other’s hair or biting each other or hurting each other in any which way. Until then they are on their own. 

Both our kids are small enough that they have not started questioning their differences just yet. They look at each other and notice the differences - differences in behavior, attitudes, who shouts more, who says please, etc. Not quite about their physical features. They don’t question these differences just yet. We haven't heard Samaira’s classmates question her differences either. So we haven't crossed the bridge of explaining to them that Samaira has down syndrome. 

This is the down syndrome awareness month. And one of the things that I do wonder about is how will we cross that bridge when we get to it. We do put it off to “We will cross that bridge when we get to it,” but there are definitely moments of “But, how?” Honestly, the answer is I don’t know. I don't know if there is a right way or a wrong way. If it is ok to proactively discuss it with Samaira’s surroundings, or if it is better for her friends to form their own opinion about her regarding, or regardless of, her diagnosis. I am kind of divided in my own head about it. We even got some books that we could share with our friends and family. But I am not sure if that’s the route we should go.

In either case, if a kid does get curious about differences between Samaira and them, then here is how I think I will handle it. Maybe.

All of us are made of some building blocks. These building blocks are called our DNA. Our DNA decides the color of our hair, the shape of our eyes, the color of our skin, our height, our nails, and so on. We all are uniquely different people in every possible way and a big part of it is our DNA and the information that resides in it. So if you see someone talk differently, behave differently, look different, etc., know that a big part of it is because of their DNA. Down Syndrome means that there is some extra information in that person’s DNA. That extra information results in some differences, which is what you see. It results in different physical features, different learning capabilities, different speech, different pace of reading and writing. But then, we all have different features, different learning capabilities, somewhat different speech/accents, different pace of reading and writing. So it just proves that we are all different. Someone with down syndrome may seem very different, but those differences are just a small part of their personality. There is so much more to them than the differences that may jump out on face value. But you can only find out more about them if you make a friend with someone with down syndrome. You will know about things they like, the movies they like to watch, the people they like to hang out with, the food they like to eat, the story books they like to read. You will know a lot more about them once you get to know them. They will do great things in life, just like you will. They will do it at their own pace, in their own time. 

So that’s my hypothetical shpeel. I don't know if I will use it. But it is a start. It is a seed. We will take it from here when time comes.

For now, here are some very unique things about Samaira that I want the whole world to know.

This girl can mimic. It is a talent either you are born with or you are not. She mimics Rehan syllable to syllable. She has started saying meeeaaalk for milk, because that’s what Rehan says. She says yeow for yellow, because that’s what Rehan says. She mimics not only the words, but also his tone, his accent. Everything. She says it his way and then she smiles. She smiles because she knows exactly what she is doing. That sharp cookie. 

Samaira’s teacher sent her progress report a few days back. It said something like “Samaira has great leadership skills. She has the ability to convince people to do what she wants. She now needs to work on her ability to follow when other people are leading.” In other words, she can be really lazy sometimes and get other people to do the work she is doing. She is stubborn and has a very strong mind of her own. We somehow need to tell her “Sammy, the world doesn’t run according to you. Not everything works the way you want to it to…following is just as important as leading.” That’s for another day. For now, we just chuckle.

She is also a big tease. When she knows Rehan really really wants something, she snatches it from him and runs away and makes sure he is following her. She giggles because she finds it pretty darn funny. Rehan cries “Sammy took it away.” Sammy is so used to this routine now that when she snatches something from Rehan, she proactively comes and tells us “Sammy took it away.”

Samaira can tell I am not happy, or am not 100% myself without me saying a word. It may sound nuts, but she can look at my face and see I am not ok and she is the first one to ask me “Mumma, are you sad? Why are you not happy” All I can do in that moment is look at her in wonderment and think to myself “What did I do right to deserve her?” 

There are a lot of other unique things about Samaira and these are just a few. But you have to know her to find out what makes her so unique. 

We celebrate Down Syndrome Awareness Month every year now, with a little bit more information, a little bit more knowledge, a lot more joy, a few more fears. We don't know everything, just yet. We have a lifetime to figure out everything about down syndrome. But we can always share whatever little we know anyway. 

This girl rocks my world!


Anasuya said...

That's our Rockstar 😃 love you a lot Sammy!!

Anonymous said...

Love you Samaira and everything you bring up :) - Prachi