Tuesday, October 10, 2017

October

So, the other day, we were eating dinner at home and everyone had a place to sit around the table but me. Sammy found some humor in the situation, so she teased me saying “Haaaa Haaa…you don’t have a spot to sit.” To which Rehan responded “Sammy, this isn’t a kind thing to say.” And Sammy said pointing to another chair, “Oh, sorry. Mumma, you can pull that chair and sit.”

Samaira is a funny girl. She legit has a sense of humor and she knows it. She will often do something funny or crack a joke and will have that smile when you are trying not to smile. Because in her head she shouldn’t be laughing at her own jokes, but she can’t help it, because come on 😊.
Samaira and Kabir share a very special bond. Kabir needs his own space, doesn’t like hugs and kisses. Sammy, on the other hand, is all about hugs and kisses. Kabir is the first to tell her “Sammy, no thank you!” when he disapproves. But if Sammy isn’t around, Kabir gets extremely anxious and is constantly looking for her. Sammy’s face lights up when she sees Kabir. While she doesn’t like when Kabir is constantly meddling with her lego blocks or puzzle pieces and has his own agenda, she makes sure she drags him around whenever she is playing.
Samaira wants to be a teacher when she grows up. Apparently, she loves to discipline.
These are teeny tiny anecdotes of our lives. If you are at all curious, or have questions about down syndrome and our family life, Siddharth and I will be more than glad to talk to you. We clearly don’t know it all, but we are happy to share our journey so far. If your kids have question about down syndrome, or Samaira, the best way to talk about it would be through facts. The fact that our body is made of chromosomes. Every person is born with a fixed number of chromosomes that determines the make up of their body – hair, eyes, nails, nose, height, feet, you name it. People with down syndrome have an extra copy of the 21st chromosome. It just means that people with this extra chromosome have different traits. Sometimes they learn differently, they talk differently, or look different. And differences are ok. Our differences are what makes us unique. If there are things that make you different and unique, wear it on your sleeve. Encourage others to do the same. Be yourself. Help others be themselves. Celebrate these differences!  
THIS is LIFE!
Alight, off my soapbox now.

October is down syndrome awareness month. While raising awareness doesn’t have to be restricted to a month, this still makes it a very special month!
In fact, first Sunday of every October is Buddy Walk day in our county. We have been attending this buddy walk since 2012 with our friends and family. It is a very important day for our family. For the most part, it is a celebration of individuals with down syndrome and that makes it special. More importantly though, it is a chance for us, our friends and family to see and meet other families who have a kid who has down syndrome. This year too, our friends and their families came to support us and share this journey with us. Sammy was super thrilled because she likes that she gets her own buddy walk! Plus, all the kids get a medal at the end of this walk.
On a separate note, 2017 has been a very important year for us. Gone are the days when your kid going to college, or getting their first paycheck, or getting married, or having a kid were the only big milestones. In the 21st century, this esteemed league of milestones is joined by your kid going to kindergarten!
Samaira started kindergarten in September and I was so nervous in all the months leading up to September. I couldn’t explain it because I am used to sending Samaira to day care and school and this wouldn’t be the first time she would leave home. But I was a wreck. I did think about all the things that could go wrong. Siddharth tried to balance it by reminding me that Sammy has done well so far, her day care and preschools have been very good and receptive, and I don’t have very much to worry about. But I wasn’t convinced. I kept telling him that we have been living in a bubble for the last 5.5 years in which our friends, family and schools have been so supportive. This isn’t how the world operates. Clearly, you can see who the glass half-full and half-empty in our relationship is!
We created Samaira’s Individualized Education Plan (IEP), something all kids with disabilities (should) have in public schools in the US. Our focus was making sure that Samaira was getting in an inclusive environment, which is what she has been in so far. I was nervous about it because it isn’t necessarily how everyone thinks today. Some believe inclusion is good, and others think that it is in a child’s best interest if they spend time in a contained, protected environment, where they can thrive and learn. One of the many challenges of the “contained” approach is that such an environment doesn’t teach a child with disability about “real life”. It also doesn’t teach typical kids about the part of the society that, for lack of a better word, isn’t “like them”. An inclusive environment is better for all. Some kids need individual attention, but the attempt should to balance individualized needs with the fact that we are all social beings and ultimately need to learn to live in a society, and learn to deal with the good and the bad of it.
Our IEP meeting was good. We talked about what we want for Sammy and worked along with the school principal and Sammy’s team to draft a plan that will help us achieve that. To be honest, my worries for Sammy aren’t around how or when she will learn to read, or be able to do 7+12, or learn her spellings. My worries were more around how her classmates will receive her and accept her, and vice versa.
A couple of days before school started, we had a chance to visit the school and meet the teachers. We met with Ms. Thompson, who is now Sammy’s class teacher. Our 5-minute conversation with her washed away any worries I had about Sammy and inclusion. Sammy’s teacher is so supportive, so positive, so amazing – that I am finding myself looking at the synonym feature of Word to sufficiently express how I feel about her. But I won’t go there. After home, school is the place where characters are built. Especially in the formative years. Kids learn from their peers more than they learn from books. A teacher sets the tone of the class, grows a mini-culture in the class, creates a garden in the class in which each kid can bloom at their own pace. We love this mini-garden that Sammy is in this year.
So, this has been a big year for us. We continue to explore and learn more. But for the most part, we are thankful for our environment and the people we are surrounded with.
In so many words, the point I am trying to make is that our bubble is getting bigger!

Tuesday, March 21, 2017

Celebrating 3.21

Siddharth and I are celebrating this special day by flying to New Zealand for a 2ish week vacation while Samaira, Rehan and Kabir enjoy an extended party in India with Nani (my mum), Nanu (my dad), Masi (my sister), and “P & A” (my nieces). Sammy & Rehan can’t get enough of their cousins & love spending time with them. Kabir has developed a special bond with Nani that even I can’t compete with. Here is the conversation that happened as Siddharth and I were heading to the airport to catch our flight to New Zealand.

Me: Sammy - Mumma & Daddy are going to New Zealand now and you are going to have a lot of fun with Rehan, Kabir, Nani, Nanu, Masi, ‘P’ didi & ‘A’ didi.
Samaira (whispering softly): Mumma – Maybe I can come with you to New Zealand. Is that a good idea?
Me: It is just Daddy and I who are going to New Zealand this time. How about you party with everyone at Nani’s home and go eat some ice cream now?
Samaira: Ice cream. Woohoo! I love ice cream. My favorite flavor is chocolate. But I will have vanilla, just like you. (I had told her at some point that my favorite ice cream flavor is vanilla.)

…and she ran off to find her ‘P’ didi and “A’ didi so she could drag them to eat ice cream…

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Siddharth, Sammy and Rehan spent a week in Seattle without me because I flew to India with Kabir one week earlier. We co-sleep, and at night Siddharth would put Sammy and Rehan to sleep. In this one week, Rehan somehow always ended up sleeping in the middle as he likes to get sandwiched between Samaira & Siddharth. Here is what happened in this week:

Siddharth: Sammy – Can I give you a hug?
Samaira: No. I don’t want to be touched. (we have told kids to be unhesitantly vocal if they don’t feel like giving a hug to someone at any time)
Next day…
Siddharth: Sammy – Can I give you a hug now?
Samaira: No. I don’t want to be touched. (And she ran off to play with Rehan)
Next day…
Siddharth: Sammy – Can I give you a hug please?
Samaira: No, Daddy.
Siddharth: But Sammy, I want to give you a hug.
Samaira: If you want to give me a hug, then you can sleep in the middle and give me a hug! Otherwise you cannot give me a hug.
Siddharth: ??##!!??!! (Speechless)

Both of us were amazed at two things. (a) She is like me in that if she isn’t happy with something then she shuts down on that topic (I understand it is neither advisable and nor desirable). And (b), With a little bit of coaxing, she could articulate the outcome she expected in a situation. While a lot about this situation is non-ideal and it would be great if both Sammy and I articulate our issues as opposed to shut-down, we were excited to see Samaira transfer her emotions into words.

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Samaira tends to avoid doing anything that is hard for her to do. Her strategy is to get other people to do it for her. For example: If her hand does not reach a switch and she wants to turn on the light, she asks Rehan to get a chair so he can climb on it and turn on the light. If Sammy refuses to do something because it is hard, often this is the conversation that happens:

Rehan: You can do this, Sammy. You are very strong!
Samaira: (Whining) Noooooo. I can’t.
Rehan: You can, Sammy. Let me show you how (Followed by a demonstration). Now, you try Sammy.
Samaira: Noooo. Stop it.

While Samaira needs time to warm up to new challenges, it is heartwarming to see Rehan encourage Samaira to explore her abilities.

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I am convinced that half of Sammy’s heart lives in Kabir. She is always baby’ing him. Not something Kabir is a fan of though. But he has got to deal with the all the extra care and affection that Sammy showers on him. Also, Samaira is convinced that she takes better care of Kabir than we do, and he is her responsibility.

She will often check his diaper to make sure he hasn’t done pee-pee or poo-poo. If she suspects anything, she comes to us and tells us, “Can you please change Kabir’s diaper? He has done poo-poo.”

She is also the first to point out “Kabir is crying. Can you please give him some milk?”

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If you are curious about what everyday life with T21 as an integral part of our family looks like, this is what I’ve got for you. This is our Sammy at 5.


The next challenge we are bracing for is around inclusion. Meaningful inclusion.

Sammy wouldn’t be top of mind if you are looking for a kid who is good at following instructions or protocol. She is a rebel. Anti-establishment of sorts. If we tell her not to do something, then we can say with a fair bit of certainty that she will do it. If kids want to play a game that flows a certain way, then she will be sure to not follow it. It worries me because I don’t know what’s in store for her as she enters kindergarten later this year. I don’t know how many instructors will accept Samaira as she is and accommodate her needs, versus prefer sending her to another environment where her needs could be more conveniently met.

I don’t know how many of her classmates will accept her even though she will not play Hide & Seek, Whisper Challenge, or Snake & Ladder per the rules of the game. How many of her friends will still include her?

One aspect of inclusion is ‘awareness’. Knowing that there are differences and understanding what they are. Another aspect of inclusion is ‘acceptance’. Knowing that there are differences and it is ok! It really is ok.

So, as Sammy will begin her Big 5 transition to kindergarten this Fall, I am more insecure than ever. Siddharth does not share my insecurity. He has more faith in the system, people, us, and above all – Sammy. I am insecure because we will truly be stepping out of our little bubble in which everyone sees Sammy for who she is, and not for what she has or what she can do. I can only hope that the new wave of people in her life will encourage her, include her and accept her.

Something I have heard since Samaira was born was that we shouldn’t overthink putting Samaira in schools that are highly ranked. It is probably better for her to be in schools that are average in rank, because she will have a sense of accomplishment in the things she can do as the environment will not be super competitive. To be honest, it isn’t something we have internalized, yet. So far, our circle of family, close friends (more like family), schools, day cares, teachers – have all celebrated Samaira. Included Samaira. Accepted Samaira. This encourages her to do more and be more.

At the same time, I also realize that 5 year olds are like little adults. They are intelligent. They are sharp. They understand the differences in skin color, language, and abilities. And while they are innocent and naïve, without appropriate guidance from grown-ups, they may not always know how to treat these differences. Some kids will not let these differences come in the way of their friendship. They might even provide encouragement & help as needed. But there could be kids who don’t know how to process and deal with these differences. Their reactions may range from confusion, to mockery, to non-inclusion. While I wouldn’t blame kids for their behavior, it for sure will hurt when it happens. And that’s when I hope, we the adults can play a role in creating awareness and acceptance about differences and disabilities.

In the first 5 years of our journey with Samaira, we haven’t felt the need to have the “talk” with other kids and parents. We have gone with the flow and let everyone discover who Sammy is and everything she can do. I am not sure we can continue to go with the flow much longer. I think we will need to have deliberate conversations and engagements that make the upcoming generation more sensitive and accepting of disabilities.

Down syndrome does not define Samaira. It is an integral part of her. But there is a lot more to her than down syndrome. Her abilities surpass any label that could be associated with her. So, this year, on 3/21, I want to talk about being inclusive. In schools. In activities. In play. In society. It wouldn’t benefit just Samaira, but also folks who are being inclusive. It makes society more open and tolerant to differences. Something we could all use a little extra dose of given everything that’s happening in the world.


Imagine this society: Different skin color, different language, different religion, different god, different faith, any disability, different clothing, different values….no problem. Let kindness and friendship prevail. Everyone is welcome! This is the essence of being human.

If you are curious about down syndrome, I encourage questions, conversations, and discussions. We will be happy to share our experiences and whatever we know so far. We will do our best to find out what we don’t know to answer your questions. Talking and asking questions is the first step to building awareness and acceptance.

Happy 3.21, folks!

PS: 3.21 = March 21st = World Down Syndrome Day. Medically, down syndrome is defined by 3 copies of the 21st chromosome. That’s all there is to it. An extra copy of a chromosome. It only means there is more of Sammy to love! Lucky us!