October is the down syndrome awareness month. While we don’t wait for this month to celebrate Samaira, or talk about her, we do take this opportunity to inform other people who may not know as much about this extra chromosome.
The best way to spread awareness and dispel myths about down syndrome is to let people know what we know. So far anyway. So here is what we know.
Sammy will be 3 very soon.
She is the most talkative toddler I have seen. We may not understand everything she says, but she is definitely having meaningful conversations most of the times.
Sammy has always had some level of sleep apnea. She got a tonsillectomy earlier this year to help her breath better, and the surgery did help her a lot.
Her favorite kind of play these days is pretend play. She will pick up her teddy bear or another toy and have conversations “teddy bear – you hungry? I give you milk. Teddy bear sleepy? I put teddy to sleep. Teddy bear wants a hug daddy!” You get the idea.
Sammy has three therapy sessions a week: speech, physical and special education/social. Most of these sessions are held at her day care.
Sammy knows we don’t like her doing certain things. We don’t want her to throw spoons and plates and food off the table. We don’t want her to pull anyone’s hair. So, she will do just that. And before we can respond in anyway, she responds “Sammy, don’t do that. It’s not ok.” At this point, we typically don’t know if we should feel good or bad. Hearing Sammy say those words is like listening to ourselves. It is a reminder of how kids pick up on the tiniest of the things we say and we do have to watch our words very carefully.
Sammy really cares for Rehan. And vice versa. While she pushes and pulls him all day long, she is very particular about ending all her fights with a hug and a simple “I love you, Rehan.”
Sammy has a hole in her heart. We will find out in a year or so if she needs a surgery to close it.
She loves listening to and singing rhymes and songs. All. Day. Long. Not that I am complaining. Her non-crying sound is like soft music to my ears.
The first words to come out of her mouth as soon as she wakes up in the morning are "ooohh…. whaaat is that?” Pointing at specifically nothing. It is quite cute actually.
There is a strong teacher-streak in Sammy. She likes to give instructions. “Rehan sit here.” “Rehan read a book.” Rehan go play.” “Mumma go to sleep.” “Quiet.”
She also happens to have a rather independent streak in her. We often hear her say “Daddy, go away. I do this.”
She is One. Stubborn. Kid. I wonder who she gets this trait from!
Sammy loves to follow birds. Anywhere. Everywhere.
Oh, and the latest. She has started saying ‘please’ in a way that it is getting challenging for us to not succumb to it. Our conversations go like this. “Mumma, more pop corn.” “No Sammy. Pop-corn is all done. You don’t get any more pop-corn.” “Pleeeeease mumma” I challenge you to stay strong through that ‘please’.
So there. Now you know almost as much about down syndrome as we do.
How do we explain down syndrome to others?
If I have to explain down syndrome to someone who is slightly older, then I will get into the details of 3 copies of the 21st chromosome, 47 chromosomes instead of 46, extra protein as a result of the extra chromosome strand, resulting in extra medical conditions, non-disjunction versus mosaic versus translocation down syndrome, congenital heart defects, hearing deficiency, developmental delays, speech challenges, thyroid, low muscle tone, distinct features, and so on.
But if I have to explain it to someone who won’t understand the unnecessarily complicated medical mumbo jumbo, then here is what I will say. Our body is made up of tiny cells, which in turn are made up of chromosomes. These chromosomes decide the color of our hair. They decide if our eyes will be big or small. Or brown or black. They decide if our hair will be curly or straight. They decide if we will have freckles or not. Similarly, chromosomes decide whether we have down syndrome or not. It can sometimes take more effort and work for an individual with down syndrome to do certain things. But it is on us to build a society that gives those opportunities. This condition makes an individual unique in their appearance and abilities. But it by no means defines them. Too philosophical? Hey, what else do you expect from someone like me? Especially when in my own head I think I have some sort of double PHD in philosophy.
All said and done, it is a game of attitude at the end of the day.
Our attitude decides how we are toward Sammy.
As far as our attitudes is concerned, we don’t put a cap on her limits or abilities to achieve anything in life. We never had any goals for either of our kids. We don’t have any specific dreams or aspirations for either of our kids. Except that they be happy. There is no specific expectation from them regarding what they should be, who they should become, what they should do, etc. So Sammy’s life, her abilities, her limits, will be completely defined and determined by her. And none of that will be a constant. It is going to continue to change and evolve all her life. I hope she knows that.
Our attitude regarding her health is somewhat similar. On an everyday basis, we do not attribute any of her medical challenges to her chromosomes. But then there are certain issues that are a result of the number of chromosomes in her body – the hole in heart, missing teeth, apnea, enlarged tonsils, etc. These are certain facts that do not escape even the most positive of the attitude and it is good to keep it real. Our challenges are very real and no amount of rainbows or unicorns or positive thinking will wash away those challenges. Medical or non-medical. For almost everything else, we completely forget her chromosome count while evaluating the cause and remedy. We explore her health issues just as we would Rehan’s. We process it like any other medical situation for any other child. Over time we could learn one way or the other. But as far as Sammy’s health goes, more often than not, we know more than her doctors. We know more than our parents. It is a side-effect of immersing ourselves in endless research on all related things!
Our friends’ and family’s attitude takes the cake.
We love this ecosystem. Of our family, friends, and Sammy’s teachers. The crazy amount our family and friends love Samaira is very present and evident in every word they say and every word they don’t say. Their unconditional love for Samaira screams and yells past their kind and excited shells. They genuinely care for Samaira and we know that. We feel the love through their presence and distance! Her day care teachers really do care for her. There is clearly a reason why Sammy is always so excited to go to and not so excited to leave her day care. Her therapists are her champions and we are so blessed for them.
And then there are other people’s attitude.
I am pretty sure some people’s view of life-of-a-family-with-a-special-needs-member is very different from that family’s view of their life-with-a-special-needs-member. While most people will be positive and open, there will be times when some people will react in less than ideal ways. There could be thoughts and comments ranging from ‘I am sorry’, ‘poor kid’, ‘thank God it didn’t happen to us’, ‘I don’t want to be in their position’, and so on. But let me tell you, life on this side of the fence is not bad, or sad, or sorry, or disappointing, or something to lament about. It is a different life. Granted. It is a different frequency of doctor and therapist appointments. Granted. It is a different set of expectations regarding milestones and abilities. Granted. But once you have a member in your family with any special needs, these things don’t stand out as a “special” thing. These things just are. There is nothing special about it. It is special for the rest of the world. There is nothing extraordinary about it either. There is nothing heroic or awe-inspiring about it. There is nothing awesome or awful about it. It just is. Just like everything else in life. Does it make any sense?
So, do not ever hesitate to ask us any questions about down syndrome. We will not mind it. We will not be offended. It will not be an awkward question. It will be our honor and privilege to respond to your questions. So ask a question. Answer someone in doubt. Seek information. Dispel myths. Propagate reality.
Happy down syndrome awareness month people! It is a good month.
The best way to spread awareness and dispel myths about down syndrome is to let people know what we know. So far anyway. So here is what we know.
Sammy will be 3 very soon.
She is the most talkative toddler I have seen. We may not understand everything she says, but she is definitely having meaningful conversations most of the times.
Sammy has always had some level of sleep apnea. She got a tonsillectomy earlier this year to help her breath better, and the surgery did help her a lot.
Her favorite kind of play these days is pretend play. She will pick up her teddy bear or another toy and have conversations “teddy bear – you hungry? I give you milk. Teddy bear sleepy? I put teddy to sleep. Teddy bear wants a hug daddy!” You get the idea.
Sammy has three therapy sessions a week: speech, physical and special education/social. Most of these sessions are held at her day care.
Sammy knows we don’t like her doing certain things. We don’t want her to throw spoons and plates and food off the table. We don’t want her to pull anyone’s hair. So, she will do just that. And before we can respond in anyway, she responds “Sammy, don’t do that. It’s not ok.” At this point, we typically don’t know if we should feel good or bad. Hearing Sammy say those words is like listening to ourselves. It is a reminder of how kids pick up on the tiniest of the things we say and we do have to watch our words very carefully.
Sammy really cares for Rehan. And vice versa. While she pushes and pulls him all day long, she is very particular about ending all her fights with a hug and a simple “I love you, Rehan.”
Sammy has a hole in her heart. We will find out in a year or so if she needs a surgery to close it.
She loves listening to and singing rhymes and songs. All. Day. Long. Not that I am complaining. Her non-crying sound is like soft music to my ears.
The first words to come out of her mouth as soon as she wakes up in the morning are "ooohh…. whaaat is that?” Pointing at specifically nothing. It is quite cute actually.
There is a strong teacher-streak in Sammy. She likes to give instructions. “Rehan sit here.” “Rehan read a book.” Rehan go play.” “Mumma go to sleep.” “Quiet.”
She also happens to have a rather independent streak in her. We often hear her say “Daddy, go away. I do this.”
She is One. Stubborn. Kid. I wonder who she gets this trait from!
Sammy loves to follow birds. Anywhere. Everywhere.
Oh, and the latest. She has started saying ‘please’ in a way that it is getting challenging for us to not succumb to it. Our conversations go like this. “Mumma, more pop corn.” “No Sammy. Pop-corn is all done. You don’t get any more pop-corn.” “Pleeeeease mumma” I challenge you to stay strong through that ‘please’.
So there. Now you know almost as much about down syndrome as we do.
How do we explain down syndrome to others?
If I have to explain down syndrome to someone who is slightly older, then I will get into the details of 3 copies of the 21st chromosome, 47 chromosomes instead of 46, extra protein as a result of the extra chromosome strand, resulting in extra medical conditions, non-disjunction versus mosaic versus translocation down syndrome, congenital heart defects, hearing deficiency, developmental delays, speech challenges, thyroid, low muscle tone, distinct features, and so on.
But if I have to explain it to someone who won’t understand the unnecessarily complicated medical mumbo jumbo, then here is what I will say. Our body is made up of tiny cells, which in turn are made up of chromosomes. These chromosomes decide the color of our hair. They decide if our eyes will be big or small. Or brown or black. They decide if our hair will be curly or straight. They decide if we will have freckles or not. Similarly, chromosomes decide whether we have down syndrome or not. It can sometimes take more effort and work for an individual with down syndrome to do certain things. But it is on us to build a society that gives those opportunities. This condition makes an individual unique in their appearance and abilities. But it by no means defines them. Too philosophical? Hey, what else do you expect from someone like me? Especially when in my own head I think I have some sort of double PHD in philosophy.
All said and done, it is a game of attitude at the end of the day.
Our attitude decides how we are toward Sammy.
As far as our attitudes is concerned, we don’t put a cap on her limits or abilities to achieve anything in life. We never had any goals for either of our kids. We don’t have any specific dreams or aspirations for either of our kids. Except that they be happy. There is no specific expectation from them regarding what they should be, who they should become, what they should do, etc. So Sammy’s life, her abilities, her limits, will be completely defined and determined by her. And none of that will be a constant. It is going to continue to change and evolve all her life. I hope she knows that.
Our attitude regarding her health is somewhat similar. On an everyday basis, we do not attribute any of her medical challenges to her chromosomes. But then there are certain issues that are a result of the number of chromosomes in her body – the hole in heart, missing teeth, apnea, enlarged tonsils, etc. These are certain facts that do not escape even the most positive of the attitude and it is good to keep it real. Our challenges are very real and no amount of rainbows or unicorns or positive thinking will wash away those challenges. Medical or non-medical. For almost everything else, we completely forget her chromosome count while evaluating the cause and remedy. We explore her health issues just as we would Rehan’s. We process it like any other medical situation for any other child. Over time we could learn one way or the other. But as far as Sammy’s health goes, more often than not, we know more than her doctors. We know more than our parents. It is a side-effect of immersing ourselves in endless research on all related things!
Our friends’ and family’s attitude takes the cake.
We love this ecosystem. Of our family, friends, and Sammy’s teachers. The crazy amount our family and friends love Samaira is very present and evident in every word they say and every word they don’t say. Their unconditional love for Samaira screams and yells past their kind and excited shells. They genuinely care for Samaira and we know that. We feel the love through their presence and distance! Her day care teachers really do care for her. There is clearly a reason why Sammy is always so excited to go to and not so excited to leave her day care. Her therapists are her champions and we are so blessed for them.
And then there are other people’s attitude.
I am pretty sure some people’s view of life-of-a-family-with-a-special-needs-member is very different from that family’s view of their life-with-a-special-needs-member. While most people will be positive and open, there will be times when some people will react in less than ideal ways. There could be thoughts and comments ranging from ‘I am sorry’, ‘poor kid’, ‘thank God it didn’t happen to us’, ‘I don’t want to be in their position’, and so on. But let me tell you, life on this side of the fence is not bad, or sad, or sorry, or disappointing, or something to lament about. It is a different life. Granted. It is a different frequency of doctor and therapist appointments. Granted. It is a different set of expectations regarding milestones and abilities. Granted. But once you have a member in your family with any special needs, these things don’t stand out as a “special” thing. These things just are. There is nothing special about it. It is special for the rest of the world. There is nothing extraordinary about it either. There is nothing heroic or awe-inspiring about it. There is nothing awesome or awful about it. It just is. Just like everything else in life. Does it make any sense?
So, do not ever hesitate to ask us any questions about down syndrome. We will not mind it. We will not be offended. It will not be an awkward question. It will be our honor and privilege to respond to your questions. So ask a question. Answer someone in doubt. Seek information. Dispel myths. Propagate reality.
An open minded and accepting society needs a strong foundation and it starts with being fearless, genuine and informed.
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| No Limits |
My Positivity
Happy down syndrome awareness month people! It is a good month.
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