Smriti Zalpuri Kumar

@livelifelakshsize | contributor
My son has been diagnosed with Down syndrome at birth and I am here as his advocate and for others like him.
Community Voices

Post Partum depression in south Asian women

Don’t want to take anything away from the seriousness of what happened with Nima, but it has been weighing heavily on me. Writing this post has been very very difficult for me and I am not sure if i should ever share this but I’m trying to #breakthestigma4nima so please hear me out.

This is a photo of me on 06/06/2020 seconds after Veer made his grand entry. I felt every emotion that I could possibly imagine, I felt happiness, relief, joy, anxiety, fear, excitement and so much more.

I was happy because he was finally here and scared because he was finally here, in the middle of a global pandemic. I remember with Laksh, things we so different because he spent the first two months of his life in the NICU. Tomorrow Veer will be two months old so I felt I needed to share this.

I am not sure what I feel Is #postpartumdepression or anxiety because of the current state of the world. I felt something similar when Laksh was born as well and there was no pandemic then. I felt guilt, I felt anxiety, I felt sad, I felt inadequate, I felt disgust, I felt ugly, I felt like I had failed my son. And I thought I felt all that because he was in the NICU for little over 2 months and somehow that happened because of me.

But by the grace of God, Veer has been here with us every single day of the two months  that Laksh had spent in the NiCU and our boys with be with us forever more, but I still feel these feelings. I still feel like I am not enough.

Don’t get me wrong, I don’t feel this all the time but I do feel these feelings of inadequacy. I feel anger and frustration and irritability for small little things. I felt shame when answering the questionnaire my OB made me fill regarding #ppd becasue I didn’t want to acknowledge I felt those feelings. That me, an educated person who has her sh*t together is feeling like she is lost.

But my question is why? Why do we feel the need to hide our mental well being from the world? Why do we feel that we would be labeled as ‘not fit mothers’ if we say we are struggling? Why do we feel shame in asking for help?

As south Asians specially, mental health is such a stigma and never discussed openly. People throw around the word ‘ I am depressed’ without truly understanding what it means or how debilitating it truly can be.

Today sharing about these feelings has felt like a difficult but much needed step for me but I’m doing this because I hope it helps someone feeling the same way reach out and ask for help.

#breakthestigma4nima

#livelifelakshsize

Busting Myths for Down Syndrome Awareness Month

October is Down Syndrome Awareness Month and in honor of my son Laksh and other amazing people just like him, we are having a celebration on our Instagram page. When Laksh was born, I did find myself leaning on Dr. Google to help me find some facts about Down syndrome. Being a physical therapist, I was aware of Down syndrome but I had never come across anyone in real life who had Down syndrome until Laksh. I was shocked to see some not so accurate and honestly antiquated information, and it worried me. Some sites downright made Down syndrome look like a punishment for the child and his/her family, which it is not. So I decided to start a social media page for Laksh so I could show people what it really looks like to have a child with Down syndrome today. On these platforms, I connected with so many amazing families who have been on this journey longer than we have and it has blown my mind. Everything I wanted for my child is possible. It might take a bit longer, but who is in a rush anyway? I would also like to take this opportunity to bust these myths I kept reading online. Myths vs. Facts Myth: Most children with Down syndrome are born to older parents. Fact: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the likelihood of having a child with Down syndrome increases with the age of the mother, especially after age 35. Myth: All people with Down syndrome have a severe cognitive disability. Fact: Most people with Down syndrome have a mild to moderate cognitive disability, or intellectual disability. This is not indicative of the many strengths and talents each individual possesses. Myth: People with Down syndrome cannot be active members of their community. Fact: People with Down syndrome are active participants in educational, social and recreational activities. They are included in the typical education system and take part in sports, music, art programs and any other activities in the community. People with Down syndrome are valued members of their families and communities, make meaningful contributions to society, and many are proud business owners. Myth: Scientists know everything there is to know about Down syndrome. Fact: Though we know that an extra full or partial copy of chromosome 21 causes the characteristics of Down syndrome, researchers are making great strides in identifying how individual genes on chromosome 21 affect a person with Down syndrome. Myth: Segregated special education programs are the only option for students with Down syndrome. Fact: Students with Down syndrome are included in typical academic classrooms in schools across the country. The current trend in education is for full inclusion in social and educational settings. Sometimes students with Down syndrome are included in specific courses, while in other situations students are fully included in the typical classroom for all subjects. Increasingly, individuals with Down syndrome graduate from high school with diplomas, and participate in post secondary academic and college programs. Myth: Adults with Down syndrome are the same as children with Down syndrome. Fact: Adults with Down syndrome are not children, and should not be considered children. They enjoy activities and companionship with other adults, and have similar needs and feelings as their typical peers. Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage. Fact: People with Down syndrome socialize and have meaningful friendships. Some choose to date, maintain ongoing relationships and marry. Myth: It is OK to use the “r-word” if you don’t really mean it. Fact: It is never acceptable to use the word “retarded” in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent. Myth: Adults with Down syndrome are unemployable. Fact: Businesses employ adults with Down syndrome for a variety of positions – in banks, corporations, hotels, hospitals, nursing homes, offices and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and the computer industry, to name a few. Like anybody else, people with Down syndrome want to have a job where their work will be valued. Myth: People with Down syndrome are always sick. Fact: Though people with Down syndrome are at an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, and thyroid conditions, advances in health care and treatment of these conditions have allowed for most individuals with Down syndrome to lead healthy lives. Myth: Down syndrome is a rare disorder. Fact: Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome, or around 6,000 births per year. Myth: People with Down syndrome are always happy and affectionate. Fact: We are all individuals and people with Down syndrome are no different to anyone else in their character traits, varying moods and ability to feel all kinds of emotions. Myth: People with Down syndrome all look the same. Fact: There are certain physical characteristics that can occur. People with Down syndrome can have all of them or none. A person with Down syndrome will always look more like his or her close family than someone else with the condition. Myth: People with Down syndrome do not live very long. Fact: Today, with the medical treatments available, people with Down syndrome can look forward to living a long and fulfilling life. Myth: Down syndrome is hereditary and runs in families. Fact: Translocation, a type of Down syndrome that accounts for 3 to 4 percent of all cases, is the only type of Down syndrome known to have a hereditary component. Of those, one third (or 1 percent of all cases of Down syndrome) are hereditary. I have used the National Down Syndrome Society fact sheets as a guideline to create this list.

Doctors Need to Change the Way They Deliver a Down Syndrome Diagnosis

They say when you become a mother, your life changes completely. I had heard this all my life, but on the 1st of August 2017, I started to believe it, too. I still remember the moment my precious little angel came into this world. But unlike many other mothers’ experiences, my moment wasn’t happy. It wasn’t because my baby had Down syndrome, but because the people who delivered the news to me said it with so much grief in their voice, that I thought maybe it was sad indeed. Being a physical therapist, I was aware of Down syndrome and the therapy requirements that may be associated with it. But I wasn’t completely aware of what it meant (I now use the term possibilities). Even before my family could properly introduce themselves to Laksh, he was taken away and put in the NICU. After a few days of tests and examinations, we were finally in an informed position. We were aware of our son’s diagnosis. He had Down syndrome and Hirschsprung’s disease. Those days were very confusing for my husband and me. In the first few days of my son’s life, we were told about all the things he would not be able to do and all the difficulties he would face. In those moments of weakness, I cried. I cried every day, before I went to visit my son in the NICU and after I came home in the evening. As I sat at his bedside looking at his tiny hands and feet and his big eyes, I refused to accept that he wouldn’t be able to do the things that my husband and I had wished for him since the day we first found out I was pregnant. I decided to research about it on the web, but that didn’t help either. Then, I reached out to some mothers online and heard their stories. I was relieved when I heard what their children have done and are doing. There are some individuals with Down syndrome who are entrepreneurs, some are actors, some dancers, some are baristas, but the takeaway for me from all of this was that they are doing what they want to do with their life. They did not listen to the world when it told them that they couldn’t — and neither will my Laksh. Laksh is 2 years old. He walks and has just started to run a little. He says a few words like mumma, dadda, book, nana (grandfather in Hindi), but most of all he communicates with his actions and words combined. He can sign a few words like more, all done, milk, water, shoes, socks, etc. He loves music and can open the YouTube app all by himself and play his favorite songs. Every single day, my little munchkin is learning something new and teaching us as well. I do not want any new parents to go through what we did. I want all parents to celebrate their children and not worry. I want these parents to look at our kids and see how lucky we are to have been blessed with such beautiful children and a wonderful journey. And I want them to believe that they are going to be OK with their little guy or girl. Other stories you may enjoy: What I Wish Doctors Had Said When My Child Was Diagnosed With Down Syndrome The Doctor Didn’t Follow Protocol After Our Down Syndrome Diagnosis

Community Voices