Raising A Child With Down Syndrome: A Mother’s Story

Raising A Child With Down Syndrome: A Mother’s Story

Pooja Maheshwary

A few weeks ago, I came across an Instagram handle that caught my attention. The feed had pictures and videos of a young mum and her child who has Down syndrome. What really piqued my interest was the positivity and love I felt while browsing through their feed, and I felt I simply had to reach out to her and learn their story. What followed was a conversation that stayed with me long after.

Read on to know about Pooja Khanna and Norah Mittal, a mother-daughter duo that is changing the narrative on children with special needs one post at a time!

The Beginnings

Norah was born six weeks premature. She wasn’t breathing on her own and was kept in the ICU. The doctors said there was a possibility that she has Down syndrome. Pooja says,

Our first reaction was disbelief. We were in complete denial. It couldn’t be happening to us! We tried to reason it through little excuses… my father too had small eyes, after all.

A lot of tests were done to rule out the condition. And to ensure Norah’s heart, pancreas and other organs were fine. Pooja says,

When the confirmation came through, we took it hard initially. My family was very supportive though, and my husband was amazing throughout. Normally people would look up the challenges or implications of the condition. Instead, he looked up success stories of people with Down syndrome. This kind of positivity helped us start to come to terms with it. He was my rock.

Norah started undergoing physical therapy when she was four weeks old to improve muscle tone and enable her to reach her milestones. Early intervention in her developmental process was key. Pooja goes on to share,

We started seeing her for who she is. You cannot ignore a child no matter what. The needs of children are the same. The more I started seeing Norah the more I realised she’s not very different. We took the help we needed in the form of therapy, and she surprised us since the day she was born by doing things not expected of her.

Norah underwent speech therapy and occupational therapy, apart from what kids normally do.

Thriving Despite The odds

Exposure is key for learning for any kid, and Norah’s family includes her to be a part of everything they do to help stimulate her mind. Pooja says,

We treat Norah like any child. My friends have kids of their own, and I see each kid is different from the other. Even in one family, each sibling has different personalities and strengths. Just because a child comes with a label, doesn’t mean they don’t deserve the same opportunities.

Pooja dotingly adds,

Norah is very friendly and makes friends easily. Her school’s environment is very inclusive. The other kids help her if they see she needs help, and it isn’t like their parents or teachers have told them to do so. It’s something I feel we need to learn from kids—they don’t see each other as different. She’s a happy, confident kid and irrespective of what you think of her she’s very comfortable in her skin.

Norah loves music and every day, her family does a lot of signs and songs with her. She sings with signs, and learnt to dance even before she walked!

Challenges

Like any mother raising a toddler, parenthood came with its own challenges for Pooja. She says,

There are challenges every other day, be it as a mum of a two-year-old or as as a mum of a child with special needs. Norah’s currently going through the terrible two’s phase, with her tantrums and all, haha. She is strong and opinionated and clear about what she wants.

The real challenges, Pooja says, are in dealing with people who are not aware of Down syndrome. Sometimes, parents refuse to let their kids play with Norah as they think her condition is contagious.

Pooja was on bed rest during her pregnancy, and after she had given birth to Norah some people made her feel guilty about that saying things like “had you not been idle during pregnancy, this wouldn’t have happened”. Pooja shares,

Comments like ‘your kid looks Chinese’, ‘she’s already one, how is she not walking yet’ or ‘why does she stick her tongue out so much’ hurt a bit. It’s not a pleasant experience. When you hear, ‘oh, I’m so sorry’ you wish people would realise that it’s not a disease, Norah isn’t ‘suffering’. No, she’s not a ‘Down’s baby’; that’s not her identity. She is  a person first and her diagnosis comes later. At the same time, I understand it comes from ignorance. And we’ve received a lot of love from others, and that’s what we focus on.

Pooja explains that people compare because they don’t know any better. And she chooses to speak up on social media to help everyone understand that children are not so different. It’s a way to help normalise the situation, and when other parents of kids with special needs see Norah’s videos (both the good and the bad) it’s almost like hope for them and makes them realise that the situation is not so bad or scary. She stresses the importance of building empathy… Even for the doctors.

When doctors say things like, “she won’t be able to do much so just give her the love she needs” it makes me angry. They are not really looking at people but defining them with their weaknesses and labelling them with whatever they can’t do. For Norah, it’s her life, she doesn’t know any different. Her determination and resilience helps us stay positive too!

I asked Pooja what kind of support or resources she wishes were available to her in the initial phase, and she says,

When Norah was born, there was no one to reach out to. There were very few people speaking about it. I decided to share my stories on social media to reach out to other parents. Not only did I receive immense support and positivity but in the process, I also ended up helping out other parents raising children with Down syndrome.

Pooja recommends being a part of a community to help make parenthood easier. And it helps to be vocal when one’s looking for a community. Even when dealing with issues like breastfeeding or latching, a support system helps one know they aren’t alone.

A Day In Their Life

Pooja shares that she made a conscious decision to take a sabbatical from work and spend time with Norah—not because she had to do it, but because she wanted to.

So, what does a regular day look like in the lives of the Mittal-Khanna family? Pooja says,

My husband wakes her up, prepares breakfast and gets her ready for school. I drop her to school, pick her up, we go for therapy and then have lunch. Post her nap, we either go to the park, playdates or birthday parties. Once in a while, we’ll even head to the mall. She started walking after the age of two, so right now we also focus on activities that promote walking.

Throughout this conversation, I couldn’t help but be struck by Pooja’s positivity. And if I were to be completely honest, I was in awe of her. I’m sure many others out there are similarly inspired by this mother’s stories. How does she find the strength to maintain a calm and positive attitude? She says,

We all have struggles and challenging days. But when we look beyond those to the smallest milestones we’ve achieved, it lifts us up. Personally, I live off Norah’s larger-than-life drive to thrive, and her carefree nature. We don’t know what the future holds, so why worry about it? We might as well just live and have fun with our kids. If you feel like you’re going through a bad thing, someone’s probably going through a worse time. I simply look for one little joy in a day, every day. And that’s how I remember it!

What’s your story? We’d love to know! Please tell us something about yourself in the comments below.

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