The story of the extra chromosome

In 2017, we stumbled upon this journey that we did not know we would love and thrive in. Our son Laksh, was diagnosed with Down syndrome and Hirschsprung's disease after birth. And like most, we feared the unknown. We just wanted to have what everyone else was having. All we wanted was a "normal life". Little did we know, 19 months later, our life couldn't be more normal, boring even.


On World Down Syndrome Day, I wanted to take the opportunity to educate people about Down Syndrome. Well, if you search the Internet, it will tell you that Down Syndrome is a genetic chromosome 21 disorder that causes developmental and intellectual delays. In simple terms, individuals with an extra copy of the 21st chromosome (also known as trisomy 21) have certain limitations like they might be shorter than usual, they might speak with a slur, they might walk with support, they might need glasses to see, and they might need oxygen cylinders to breathe.

While all of the above might be true, this is just half the picture. The problem is most of the information on the internet is outdated and untrue. Kids and adults with Down syndrome are doing so much more than what people, especially the medical community give them credit for. Being a parent, we are constantly worried about our children. It is just the same when it is about a child with a disability. It is high time we realize that these outdated statements alone cannot define them. They are so much more than this one thing which is a minute part of their lives.

“When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” 

― Yvonne Pierre, The Day My Soul Cried: A Memoir

Let’s stop “tolerating” or “accepting” difference, as if we’re so much better for not being different in the first place. Instead, let’s celebrate difference, because in this world it takes a lot of guts to be different.’ – Kate Bornstein

"Chances are, disabled or not, you don't grow all of your food. Chances are, you didn't build the car, bike, wheelchair, subway, shoes, or bus that transports you. Chances are you didn't construct your home. Chances are you didn't sew your clothing (or make the fabric and thread used to sew it). The difference between the needs that many disabled people have and the needs of people who are not labelled as disabled is that non-disabled people have had their dependencies normalized."AJ Withers

Make yourself aware about Down Syndrome. Because they and we decide not to focus on the limitations but the possibilities. And we urge you to do the same.  Here are some wonderful stars that have Down syndrome and are all uniquely different but just as perfect. Laksh and us, are proud to be on it.
Banner created by @raising_peanut (Instagram handle) and it is called 100 amazing faces.

 What a coincidence that it is Holi today, the festival of colors, which is celebrated in India. This day is all about your most colorful, fun or even mismatched socks. Please tag us to help spread the cheer.

Happy World Down Syndrome day!!

Special needs baby?

Dear readers,

Laksh is going to be 18 months old soon and for as long as I remember, people have always differentiated between our babies and typically growing babies. Even when people think they are saying something positive they end up saying things like, "they are happy kids", or "they give great hugs", etc. My question is what do you mean by 'they'? Are you comfortable with grouping all the babies in the world with down syndrome under one umbrella? In that case, you should also be comfortable grouping kids who do not have Down syndrome under one umbrella as well. But you won't. Because you are willing to see typically growing kids as individual kids with different personalities and different potential. So why not my son?

Why not all kids irrespective of their physical, cognitive, socio-economic, or racial differences? Why not all kids are seen for who they are individually and not grouped due to one factor alone? You realize how silly and unfair that sounds? How would it sound if people start grouping us based on say the color of our eyes? All blue eyed people can only do this one thing, and all brown eyed people can do this other thing but only people with green eyes can do whatever they want. Is this not discrimination? Does this not place limitations on kids? We all agree that children are the future and yet we are comfortable segregating and limiting a big chunk of them just because we are ignorant and refuse to learn. Why? I don't know what my son can accomplish, like I do not know what any other baby will. This is life. We are not God, that knows it all. We are each given a life to live it to our fullest potential. Who are you to hinder that growth? Who are you to make someone feel like they are not good enough?

Most studies that I read always mentions how parents, siblings, co workers, friends of people with Down syndrome feel their life has been enriched because of that fact. They are more happy and satisfied in life. People with Down syndrome are also happy with the way their life is. At the end of it, don't we all want to be happy in life? When given a choice between being twice as happy or twice as smart, most people end up choosing happy. Just think about it for a minute. On our death bed, would we want a life that was filled with happiness or life filled with diplomas after diplomas? I am not saying that adults with Down syndrome are not smart or that they will not get diplomas after diplomas (because they are smart and they are graduating college and getting jobs) but all I am saying is that we don't know what one person is capable of.

Next time when you come across a person who is different from you, don't assume but instead engage. Have a conversation and learn more. Everyone wants to be seen for who they are and not based on some stereotype. Everyone has special needs, needs that are special for them and to them. Unique needs. One should not be penalized based on that. Love everyone and be kind.

Thank you for reading

The more we learn the better we become

Dear readers,

Today marks the end of Down syndrome awareness month 2018. As I have written before, it’s not just one month that matters but what we do every single day. Talk to your kids, talk to families with babies that have Down syndrome, talk to adults that have Down syndrome. We welcome the opportunity to educate and also get educated. Here are pictures for each day of October to highlight some misconceptions and some concepts that need to be highlighted.  Share with your loved ones and help create a more inclusive and more kind world.

                                     

                                    

 

                                      

   

             

I feel that people with Down syndrome were sent from above to help all of us become better people, andwould like to thank you all for the support you have given us and the love you have showered on Laksh. We are extremely grateful to be on this journey with Laksh and because of him, learn a new kind way to be a member of the society. So thank you for the understanding and sorry about spamming your timeline for the past one month. Please continue to be just as awesome as guys have been to us and everyone around you. Happy Halloween 🎃

What is normal?

Dear readers,

For as long I can remember, all I wanted to do was fit in. All I wanted was to be normal. Being an overweight child, you always became the butt of the joke. I remember as a child, I would wish I would just look like the other girls so no one would joke about me. It took me most of my life to understand my body is different as I am unique. Even if I would lose all the weight, I would still not look like the other girls. I would be me, I would be different.

Once I had Laksh, and after most of the medical concerns were tackled, my biggest concern was this. Laksh is going to stand out, look different, and will that make him the butt of joke? Will that make others want to make fun of him or bully him? It might take him longer than other kids to learn things, will that make people lose patience or their faith in his abilities?

Even now, I sometimes find myself looking for that comfort of "normal", that comfort of "familiar" but then I tell myself,  God has planned a great and grand life for us and Laksh. God wants us to  help shatter the stereotypes and break the invisible box of restrictions that the society puts us in. And anyway, what is normal? Isn't that just a perception? Not long ago, unfortunately, there was a rule in India which said having homosexual relations is unnatural and not normal. But we know that is not true. One can't chose who one loves. Similarly, one can't chose what abilities one can be born with. So as normal it is to be Gay, why can't we as a society accept that it as normal to have different abilities (I am not saying being Gay is the same as having a disability but just trying to make a point). And it is okay to look different. All we need to do is always chose kindness.
I recently  watched  the movie "Wonder" (which is amazing BTW), in which the sister Via tells Auggie, that you can't blend in when you were born to stand out (I am para-phrasing). That sentence resonated with me a lot and I think isn't that something one should live by?  We should just take a minute to think, why do we want to blend in with others? Why do we want to mix in the with crowd? Why are we scared of looking different? Why are we worried that people will stare? Just remember, you were meant to be you and just be-youtifully-you. Thank you for reading.

 

How to celebrate down syndrome

Dear readers,

October is down syndrome awareness month. The entire month, we celebrate people with down syndrome. We celebrate being different yet being the same. We celebrate triumphs. We celebrate failures. We celebrate life. 

If you love someone with down syndrome or if you just love people and want to show your support, here are a few things you can do.

• Talk about Down syndrome with your kids. Create a dialogue. Create awareness. Most of the mean comments come from ignorance. Help break that cycle and educate people about what down syndrome is and how you can co-exist and flourish.
• Down Syndrome Awareness is represented by the colors blue and yellow.  Consider wearing the colors, and if you're on social media, post stories using the hashtag #DownSyndromeAwarenessMonth to spread the message online. Tag us as well, using the hashtag #livelifelakshsize.
• Remember positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives.
• Watch movies, and TV shows which helps see people with down syndrome just the way they should be and create an understanding which in turn helps break stereotypes. 
• Because every family deserves the opportunity to be blessed with a child with Down syndrome, consider a donation to Reece’s Rainbows VOICE OF HOPE FUND.

October is a month where everyone is encouraged to participate in the campaign against discrimination of people with Down syndrome. You can do this through financial contribution, writing of awareness articles and sharing them to various places. You can also contribute by participating in buddy walk. In addition, we hope that people accept them in the society and understand that inclusion benefits everyone.

"Remember that this is a very important month," wrote the NDSS. "We have to spread awareness about Down syndrome and learn more about ourselves."  

Everything happens for a reason

Dear readers,

It's almost down syndrome awareness month, and we couldn't be more excited. Thanks to our precious Laksh, this is our second year celebrating the unique and talented people with Down syndrome.

The more I think, the more I feel like Laksh and us were meant to happen no matter what. I know its silly but I always keep looking for omens, like God is trying to guide me through these signs. I am sure, you guys are aware that Down syndrome is caused by a third copy of the 21st chromosome, which incidentally happens to be my husband (3rd) and my birth date's (21st). If this isn't God telling us he got it, then I don't know what is.

God's favorite child

In today's time, children and adults with down syndrome are achieving so much and paving the path with success for all of us to follow. They are giving us "hope", something that unfortunately most of the medical world never does. You may have heard some doctors saying that your baby will always be happy, which some how paints them to be different than other kids. I have heard so many parents with typical kids telling me their kid is a happy child. How is that different from a baby with down syndrome being happy? And most importantly, your child will experience an array of emotions, just like anyone else. It is just that they might be easier to forgive you and move on. Live in the present and be kind. 

One thing that irritates me the most is how doctors let down syndrome define your child's life. Anything I say Laksh is feeling, the answer is because is has hypotonia. I remember once I asked his doctor about excessive salivation and she said he has low tone in his mouth, but in reality it was because he was teething. You have to remember that this news will not over power your life. In fact, in a while it will slide into the background and you will just have good and bad days like anyone else which has nothing to do with down syndrome and everything to do with having a baby. You may have heard of Mikayla Holmgren - the first Miss USA contestant with Down syndrome, she once said in an interview that she has down syndrome on the side. I absolutely loved that and feel that is the best way to make people realize how it is not what defines you but just something you happen to have.

Also, more recently a 19 year old with Down syndrome won an international beauty pageant. Read more about her here:

https://metro.co.uk/2018/08/20/girl-with-downs-syndrome-wins-international-beauty-pageant-7858920/

Could become a teacher, you never know

To mention a few more to make us see the ABILITY and not the disability in people.

Angela Bachiller from Spain became the first person with Down syndrome to ever be elected as a councilwoman

https://en.wikipedia.org/wiki/Ángela_Bachiller

Sujeet Desai from USA plays seven muscial instruments including the violin, piano, saxophone and trumpet

http://www.sujeet.com/

Megan McCormick from USA is the first person with Down syndrome to graduate with honors from a technical college

https://www.kentucky.com/news/local/community/article44423688.html

Pablo Pineda earned a bachelor’s degree in educational psychology and has gone on to be a writer, speaker, and actor.

https://en.wikipedia.org/wiki/Pablo_Pineda

Ruby Plachta is a 7 year old awesome kid living with her parents and older sister in Texas and has already helped so many adults with down syndrome to attend college. 

https://rubysrainbow.org/

Madeline Stuart is an Australian to become  the world's first professional model with Down syndrome. 
http://www.madelinestuartmodel.com/

Isabella Springmuhl Tejada is a 20-year-old fashion designer from Guatemala.
https://aplus.com/a/fashion-designer-with-down-syndrome-isabella-springmuhl?no_monetization=true

John Lee Cronin, a young man with Down syndrome is a co-founder John’s Crazy Socks
https://johnscrazysocks.com/

Laksh walking towards success while rocking his ponytail

These are just a few examples of how these young adults are shattering the image of what or how someone with Down syndrome should be. These talented individuals have so much determination that nothing can keep them down. Nothing can stop them and my Laksh from succeeding in life. All we need to do is believe. Thank you for reading. Remember to always be kind. 

Life is simple. Eat. Sleep. Swim.

Dear readers,

Swimming has  been something we have always enjoyed as a family. In fact, my hubby, sisters, and my niece always sort of gravitated towards water, be it the ocean, sea, lake or a man made pool. Swimming has always been a wonderful experience. Apart from giving me a sense of freedom, as we all know, it is a great exercise. Swimming not only builds endurance, muscle strength, and cardiovascular fitness, it also tones muscles without actually having to strain it by being weight bearing. Swimming is one of the few exercises that use mostly all of the major muscle groups.   

We recently enrolled Laksh in a group swimming class. I don't know if you guys remember, but sometime back we took him swimming for the first time and he loved it. After that, we had decided that we want Laksh to get comfy in water and probably pick up swimming as a skill early on. So, we started looking for classes online, and after a lot of research chose this one. This class is once a week for 10 weeks and has around 15 kids in each class. They offer two 30 mins classes called "Water Angels (6-19 Months)" . In these classes through songs, fun and instructional games, students learn to be comfortable in the water & learn basic water skills. As all babies are pretty young, an adult has to accompany them in the pool. 

At one point, all babies were given ducks that they had to throw into the water and then swim towards them in order to catch them. This is Laksh completely focused on the task given to him.

 Just want to share some videos (that I was able to edit to hide the faces of other kids) I took during the class.  So much water, so little time.

   

                                                                                 

With so many people saying it couldn’t be done, all it takes is an imagination. 

– Michael Phelps          

                                                         

In related news, sometime back I read about this team of boys with downs syndrome that were competing along typical kids in the swimming pool. If that doesn't give us hope, then I don't know what else can. Its an amazing time to be alive and always strive to be better tomorrow than you are today. If you want to read more about these boys, please read the story here: 
https://www.usatoday.com/story/news/humankind/2017/03/21/swimmers-down-syndrome-find-empowerment-pool/99442832/


Leaving you guys with a couple of Laksh's swag post swim photos. Lots of love 💓