My Story: The Unexpected Upside of Down’s Syndrome

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When you are expecting a baby, you experience excitement, anticipation, a very special kind of happiness. Yet, at the back of your mind, due to all the tests you have to take along the way, you always have a small worry that things will not turn out as planned.

We had a happy pregnancy without much incident. Like many families expecting multiples, we had scheduled for a C-section. Coincidently, my water broke exactly on the evening before the planned early morning delivery. I remember feeling calm and contented as I chose to finish my dinner at home before we made our way to the hospital.

So, you can imagine our shock and fear, amidst the great joy we felt from receiving our twins for the first time, when we were informed that my daughter Isha had Down’s syndrome.

Though, strangely, it wasn’t a surprise to me. Even as a brand new mum, even before the official diagnosis was delivered, I already knew. I knew the moment I saw her, when they put her in my arms for the first time that she had Down’s syndrome. To describe my feelings then, I borrow the words of blogger and Down’s syndrome advocate, Kelle Hampton who wrote about the birth of her own daughter with Down’s syndrome  – “I know I begged every power in the world that this wasn’t happening … that she was normal, but I knew in my soul exactly what it was.”

“We had no idea what to do”

My husband and I had heard of Down’s syndrome but did not personally know anyone with this genetic difference. Finding out that your newborn is going to be different from other regular children is overwhelming. Not knowing anyone else who is similar makes it even more so.

We had no idea what to do and what to expect. Googling about it led to a lot of initial misconceptions about Down’s syndrome. Much of the online content focuses on cold medical symptoms and stereotypes. Search engines, unfortunately, do not immediately bring you to essays like Welcome to Holland and sites like The Mighty that share many warm inspiring stories of similar families, and individuals with Down’s Syndrome who have defied their diagnosis, refusing to be defined by it. 

Learning about all the things Isha could potentially struggle with, compared to her twin brother, was hard and heartbreaking. We love our baby dearly. But like most families with a child who is differently-abled, we were worried about how society would view her. We worried about whether she would receive the access and support she needs to grow and learn, just like every other child.

Building an inclusive society

Since having Isha, I’ve learned more about other disabilities that are out there, many not detectable through prenatal screening and discovered only later in the child’s life. There are also all the other ways disability can happen when you have a child. If only we lived in a society that fully supported families of children who are different in any way. We would not fear to have a child with a disability or who was different, as much as we do today.

I cried daily for the first few months, grieving for myself as much as for the child I didn’t have. I was very uncomfortable with my new title of ‘special needs parent.’  I (wrongly) thought my life would revolve around Down’s syndrome and become consumed by it.

Getting Support

The Kiwanis Down Syndrome Foundation (KDSF) National Centre that celebrates its 30th Anniversary this year, was a lifeline to us during this difficult period. It lent us strength in the first few months post-diagnosis before we were able to draw on our own. It helped us find a ‘new normal’, providing us with rich resources related to the genetic condition. The centre also put us in touch with families within their Parents Support Group. This group gave us critical tips and the emotional scaffolding we needed at the time. Meeting these families, some who were further down the journey, made us feel less alone. It helped us to quickly get back on our feet and focus on what we could do to support Isha.

The therapy-led early intervention programmes, together with the love and encouragement she received at KDSF’s National Centre gave Isha a great start in life. She became independent and confident at an early age. At two, she was able to transition into a wonderful inclusive mainstream playschool. Now, at the age of five, she attends an inclusive mainstream “big” school that helps her to not only try to keep up, but to keep learning with her peers.

The right people, the right champions

We’re learning every day that what children like Isha need the most are not medical and other experts. They need people who are willing to champion their potential. People who can look beyond their diagnosis and work with their parents to optimise their many abilities. Those who make a little extra effort to include them in events and activities where possible. My husband and I are very grateful that Isha has been fortunate enough to encounter many such champions in her life so far – doctors, therapists, teachers, other parents and caring people in our community.

Our lives have indeed changed significantly, but for the better. Our family has benefitted richly from having a child like Isha. I think I am personally more patient, compassionate, understanding and accepting of differences. My husband and I have learned a lot about child development strategies. These we have also applied, to great effect, on her neurotypical twin brother. Of course, there are challenges – which family does not have any? But we have also learned to celebrate every small victory.

Exceeding Expectations

Our little warrior, Isha, has already exceeded many of our initial expectations and dispelled many of our earlier misconceptions about Down’s syndrome. She continues to inspire us and bring joy to those around her daily with her sunny disposition and fierce “can do” spirit. By just being,  she breaks down stereotypes and shows everyone that disability does not mean inability.

I also believe that when people, especially other children, interact with her, they also learn to be kinder. They learn to be more open and accepting of differences in others. These children, my own son included, will hopefully grow up to become caring parents of children with or without special needs, and community-spirited members of society who will create and support solutions that benefit all people. After all, we will each eventually grow old and weak someday, or face testing times where we need help from others.

How we choose to narrate our lives and frame our stories can make or break us. While this turning point in our lives has been quite unexpected, we are really grateful for both our children. We are grateful for this extraordinary opportunity to re-write our family narrative and re-frame our story in a more positive and purposeful way. We hope that all families with children like Isha will find the same strength and support to do so.

Happy World Down Syndrome Day 2019!

Photos are from Li-Hsian’s personal collection.

Li-Hsian left a career in corporate communications to become a full-time mum to twins. She is learning new things daily as she tries to balance the romance of motherhood with the messy realities of her latest role. She is also currently the co-facilitator of the Art Discovery Tours for Kids and coordinator of children's programmes at the ILHAM Gallery in KL.