Saturday, October 12, 2013

It is the month of October

The month of October is down syndrome awareness month. When I think of creating awareness about down syndrome, I immediately think about how much positivity and support we are surrounded by. When we got Samaira’s diagnosis a couple of days after her birth, all our friends and family had the perfect reaction. I don’t know how they got it so right. I don’t know how they found it in them to react just the right way. They were happy for us, excited with us, they cried with us, they felt our insecurities with us. But none of them were sad. You know, not sad-sad. I don’t know how we managed to surround ourselves with such amazing people with big hearts. While we have the buffer of our friends and family who reacted perfectly, we know it is not the entire reality. There are still people who feel sad for someone who has a baby with down syndrome. There are still people who say “I am sorry” when they hear someone has given birth to a baby with down syndrome. There are still people who say “what’s wrong with him/her”. There are still people who say it is sad to have a baby with down syndrome. There are still people who are insensitive. And we cannot run from that reality. Therefore, we need a down syndrome month. A month to dispel all the myths, to answer any questions, to create more awareness, to sensitize people, and, to create more acceptance. It not only helps individuals with down syndrome and their families, but I believe it makes other people better human beings. So while having a special month to celebrate something you are trying to mainstream seems counter-intuitive, it is very much needed until we get the society to a state of unconditional acceptance and love.

History and time are filled with perceptions about down syndrome – some of which are facts, some are myths and some are result of society’s reaction and attitude toward down syndrome.  Down syndrome is named after doctor John Landon Down, who was first to categorize the common features of people with down syndrome. Dr Jerome Lejeune discovered it as a genetic condition whereby a person has three, instead of two, copies of the 21st chromosome. In a process called non-disjunction, the two copies of chromosome 21 fail to separate during the formation of egg, resulting in an egg with two copies of the chromosome. When the egg is fertilized, the resulting fetus has three copies of chromosome 21 in each of its cells. It has nothing to do with race, nationality, socioeconomic status, religion or anything the parents did during pregnancy. In the 1980s, the average lifespan of a person with down syndrome was 25 years. People with down syndrome typically have physical and intellectual delays from birth but there is a wide range of abilities within the population that are impossible to predict ahead of time. People with down syndrome are significantly predisposed to certain medical conditions including congenital heart defects, sleep apnea, Alzheimer’s, hearing loss and hypothyroid. There is also evidence of increased risk of celiac disease, autism, childhood leukemia and seizures. Most online and otherwise resources list some common physical traits of down syndrome such as flattened appearance on face, high/broad forehead, upward slant to eyes, smaller nose, small ears, protruding tongue, short neck/hands/legs and poor muscle tone. There are certain stereotypes associated with down syndrome – that they are happy, loving, angels. Sometimes it is true and sometimes it is not. People with down syndrome are people. So sometimes they are happy and sometimes they are sad. Sometimes they are loving and sometimes they are feisty and quarrelsome. Sometimes they are angels and sometimes they are little devils. Just a couple of decades ago, parents and doctors preferred to institutionalize a baby with down syndrome. A lot of traits such as lower IQ, low life expectancy and lower-perceived abilities was a result of this inhuman practice. As more and more people are becoming aware and sensitive and accepting –early intervention programs, medical care, quality educational programs, stimulating environment, positive attitude of parents and society have made the outlook toward and reality of down syndrome a drastically different one. Life expectancy of an individual with down syndrome has gone up to 60, average IQ level has gone up, the quality of life has gone up. People with down syndrome attend school, work and contribute to society in meaningful ways. While a quick search of down syndrome will bring results of physical features typically associated with down syndrome, very rarely but surely, you will come across resources that talk about the beautiful Brushfield spots in their eyes, their perfect eyebrows, their beautiful silky hair, and their warm irresistible hugs.

Something that all the people in the special needs community know is the difference between “normal” and “typical”. The opposite of normal is abnormal. Opposite of typical is atypical. So when you refer to a kid who does not have special needs as normal, it implies that the other kids are abnormal. Whereas referring to them as typical, the preferred way, means others are atypical. Referring to a baby/person as down’s baby (incorrect usage), or down syndrome baby means you are defining a baby with this condition. Whereas referring that individual as a person or baby with down syndrome means that they are people first and then the condition. This is called people-first language. Chromosomes decide physical and intellectual traits of beings. A certain type of chromosome gives people blue eyes, or blond hair, or dark skin, or tall height. But there is more to them than the color of their eyes, their hair type, their skin color and their height. Just the same way, three copies of 21st chromosome decides certain physical and intellectual traits in people with down syndrome, but there is much more to them than just those traits.

Samaira is almost 22 months old now. I cannot believe how time flies. When she was born, she was the most peaceful baby. Share rarely cried. She slept through the night. She showered us with smiles. She had the most beautiful, innocent eyes. She had rather calm demeanor. She always gave me the most body-melting, heart-mesmerizing hugs. She ate everything and anything I gave her – broccoli, spinach, flax-seeds, and spicy Indian food. As she is growing older, she is adding more colors to her personality. She isn’t always her charming self, but most minutes of the day she is. She does not always sleep through the night – it depends on how she is feeling and if she is congested. She still has the most beautiful and innocent eyes, but with a touch of naughty. She has learnt to say no, and with a lot of meaning behind it. So she says no when she does not want to give me a hug, and I respect that. She yells and screams and shouts when things don’t go her way. She is picky about what she eats. She doesn’t eat spicy food anymore because she was given non-spicy food immediately after Rehan was born and now she is resistant to spices. She is still very warm and affectionate. She still gives the most breathtaking hugs. She loves her baby brother immensely. She pours her heart out on him. She does not like it if he is upset or crying. She rocks him in his car seat and Shhhhhhhs him when he is crying. She is quite a performer. When she knows there are people around here, she reacts in one of two extreme ways. She either starts crying and wants to get away from the crowd, or she gets in the center and wants to laugh every time others in the room laugh and play the adult. She talks a LOT. She blabbers all day long. She loves to read books. She loves to dance to her toy-music. She loves her some crackers. She requests Siddharth to sing the song Humma Humma (from the Indian movie Bombay). Samaira loves going to her day care. In fact she looks forward to it. She has her own social circle there. She wakes up in the morning and says morning mumma. She loves being bounced on the ball. She loves it when Siddharth holds her upside down in the air. She pretty much enjoys anything that involves doing monkey business.

What I am trying to say in so many words is - it really is ok. It really is no big deal. It really is just an extra chromosome. 

Siddharth and I are not too sensitive about the people first language. I don’t always correct someone who refers to their child as normal or refers to my baby as down syndrome baby. I didn’t know the difference between normal and typical before Samaira. I don’t know if I would have referred to someone as a down syndrome baby before Samaira. It’s hard for me to imagine what I would have done. So I am ok if people don’t always use the right language. I do care about people’s intent though. I care that their heart is in the right place. I care that they care about Samaira. I care that they love Samaira unconditionally. I care that they treat Samaira with affection, tenderness, discipline and dignity. I grew up in a family in which we did not do things because that’s how society does it. My parents gave us the best education and the best opportunities at every stage in our lives, even if it defied societal-norms. So society’s preconceived notions about down syndrome did not come in between their unconditional love for Samaira. They loved and cared for, took pride in and pampered Samaira just as they do any of their other grand kids. Our friends and family have created this happy bubble around us in which life is perfect and the world is all blue sky, shiny stars, purple flowers and flying hippos. But I know there is a world outside my world. And we will surely venture out in that world someday. It is for that world that I write today.

October is down syndrome awareness month. Never hesitate to ask us any questions about down syndrome.

Samaira is a free bird. She has wings. And she loves to fly.


Didi said...

muaaaaahhh Sammy!! these are some really beautiful shots! and next time i see her i'd love to see her moves on Humma!

Trapti said...

Cheers to the happiness that Sam brings in our lives ... and of course ... Maasi loves u sooooooo much !!!

Dina C. Fifadra said...

Your posts always make me want to be a better mom and am so happy that Amar has such a sweet Didi!