Tuesday, October 10, 2017


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!  
Alright, 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!

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