Down Syndrome Week
We were so proud to spot Keira, Shailee and their brother, Kush, starring on ITV’s Lorraine on Tuesday morning! They are promoting a fantastic campaign to celebrate & spread positive awareness of those who have Down syndrome. Amazing work! Please see below for a feature from Mrs Soni.
Feature from Mrs Soni
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 non-judgmental 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 I because shortly after my son Kush was born nearly 8 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.
We have taken part in many awareness campaigns through the years. You may have seen the most recent which was a wonderfully uplifting carpool karaoke featuring siblings. We also have a small Instagram page to share the highs and lows of raising a child with additional needs and to right so many wrong negative assumptions/preconceptions that are associated to those with additional needs (@t21teamkush).
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 organisation 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 break 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 realise 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 6 year-old sister. Keira is one of the most compassionate girls I know, closely followed by our youngest daughter Shailee who is 3. I’m sure this is in large part a product of growing up with Kush. They are not scared of children in wheelchairs or with medical equipment. It doesn’t phase them, and their kindness, and adaptations in how they interact with Kush astounds me.
If you happen to see my family or one that resembles mine, please remember and 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. Yes, they have some extra challenges that you might not, but they rely on your support, your ability to teach your children by example – to help differently abled children thrive and be included in society. And, most of all, you should know that if you were in their shoes, you would and could do it, too.