Editor’s Note: Nisha Jogia Soni works in financial services and is the mother of three children, one of whom has Down syndrome. The opinions expressed in this commentary are the author’s. View more opinion articles on CNN.
One of the most challenging things about being the mother to a child with additional needs is the never-ending quest to change the world into a more accessible and nonjudgmental place. Through everyday situations, it often hits home just how far we as a society still need to go.
Of course, raising awareness is just the first step in making the world a kinder, more inclusive place – and World Down Syndrome Day provides the perfect opportunity to do so. Celebrated every March 21 since 2012, it’s a chance for us to come together on a global scale to celebrate people with Down syndrome – and, more importantly, to begin to change mindsets and encourage acceptance.
The day has a lot of personal relevance to my family and me because shortly after my son Kush was born nearly six years ago, he was diagnosed with Down syndrome. To say the first few months were hard would be an understatement. But slowly, as we got over the shock and accepted our new reality, my husband, Hamel, and I made it our priority to give our son the best life he could have. Since then, Kush has become the epicenter of our family.
But it’s not just Hamel and I who champion our son. Kush has an army of people behind him, and for that we are truly grateful and extremely lucky. He’s also growing up alongside his two younger sisters, Keira and Shailee, who love and adore him. In short, to know him is to love him; life without him would be unimaginable.
That said, there are different considerations when it comes to raising a child with additional needs. I have to be a fighter. From battling to give him access to the education he deserves in a mainstream school to the organization that’s required for him to be able to take part in extracurricular activities to tackling the mountain of paperwork that his hundreds of appointments (speech, occupational and physiotherapy appointments, to name just a few) demand, I’m no longer fazed by much.
The things, however, that still have the power to cripple me, reduce me to tears and knock me sideways are simple passing comments and ignorant judgment from others. If I had a penny for every time someone said, “I don’t know how you do it,” and “I couldn’t do it,” I’d be an incredibly rich yet deeply frustrated mother.
And then there are the knife-to-the-heart type of comments: “Didn’t you have the tests?” or “Thank God my screenings came back fine.” Would having a child like mine be so awful? Why do you shamefully assume that if I did have those prenatal screenings I’d have terminated my pregnancy?
Add that to the number of times I hear words like “retard,” “spastic” and “special needs” used in casual banter to describe a lack of intelligence (of someone who is otherwise fully abled), and I am left hollow. I constantly face an internal battle of how to formulate the right response.
Part of the struggle is that I know in the vast majority of cases there is no intention to cause offense or be derogatory to others. Combine that with the fact that there are many adults who don’t take too well to being corrected, and it can get awkward.
But to say nothing, I feel, is almost worse.
Equally, it’s a tough pill to swallow when people stare at us – at Kush – with eyes filled with pity. I see it all: The side glances when we’re out in a restaurant, the quick bow of your head when I look up to catch your stare. I know you are imagining what you would do if your child had a disability. I know you get a pang of pure gratitude that you have your fully abled child sitting in front of you.
I know this because I was once like you.
But it doesn’t have to be this way, does it?
We need to get to a point where when your observant child points at another child with a disability and asks you at the top of his lungs, “Why can’t he talk properly?” you don’t drop your head and pretend you didn’t hear him ask. We need to get to a point where you don’t “shhh” your child because you’re embarrassed. Instead, you answer your child’s question, and if you’re not sure how to, at least try. Or, if you’re feeling brave enough, come on over and let’s answer it together.
If people don’t answer those questions, society will keep teaching children that disabilities are taboo and to be embarrassed about differences. I hope adults will soon realize that it’s OK for children to be curious, and that the family of the child that your child is pointing at is not embarrassed by the difference – they are embracing it and welcome your questions.
And if you need proof, just take a look at Kush’s 4-year-old sister, Keira, who is the most compassionate girl I know. I’m sure this is in large part a product of growing up with Kush. She’s not scared of children in wheelchairs or with medical equipment. She is inclusive of all, and her kindness astounds me.
If you happen to see my family or one that resembles mine, you’ll appreciate that parents love all of their children wholly and unconditionally. The fact that they have a child with additional needs doesn’t make this any different. They – just like you – are trying their best to raise a wonderfully compassionate family. They are happy, content and fulfilled. And, most of all, you should know that if you were in their shoes, you would and could do it, too.
This is the message I hope to spread this Down Syndrome Awareness Day – and every day.
There has been a huge movement in the last few years that is paving the way slowly but surely to this more accepting world. A number of viral videos, parent bloggers and social media accounts all help break down barriers. We, too, have a social media presence – on Instagram and Facebook – and not because I necessarily want to publicize my family’s life, but because I have come to realize that often people feel more comfortable learning about something from behind a computer screen.
I will continue striving to open people’s eyes to the reality of living with Down syndrome and to level the playing field for my boy and others like him. With your help and commitment to make a change, I truly believe we can make it a reality.
