A Parent’s Journey With Down Syndrome

Spread the love

Down syndrome is not always inherited. When the condition is caused by trisomy 21, the chromosomal abnormality occurs as a random event during the formation of reproductive cells in a parent. Though researchers know that it is caused by an extra chromosome, no one knows for sure why it occurs. October is Down’s Syndrome awareness month and we share the parenting journey of Meghnaa Surana on raising a child with Down syndrome, empowering other parents, and creating awareness on it through her initiative Bubbles.

Unnathi was born on 10th Jan 2006. We were informed of her diagnosis at birth. I had never heard the term Down Syndrome before and so I didn’t know what to expect. The doctors and nurses at the hospital had sympathy and apology written all over their faces. It wasn’t how I had expected my daughter to be welcomed in this world.

I am blessed to be living in a joint family where every member only sees the ‘up’ side of life. In fact, my father-in-law named her Unnathi because he knew that she was here to grow.

In spite of all this support, I was still struggling to accept the diagnosis. When Unnathi was about 1.5 months old, I travelled to Chennai to my parents’ place. That’s where I heard of Rekha Aunty, Dr. Surekha Ramachandran to the world and Rekha Ma to our community. My first meeting with her at Mathru Mandir changed my life. Rekha Aunty showed me a world of possibilities. I don’t have the words to describe how she transformed my life but I’ll sum it up with this – she told me, “Your daughter will do whatever you believe she can. It’s all about your belief and your efforts.” To date, her words guide me.

Then began a slew of interventions – physiotherapy, sensory integration, speech therapy, yoga, chanting, special education. I was fortunate to connect to some great therapists and I had decided to give it my all. With an awesome family and some amazing friends backing me, Unna started blossoming. Not to forget, her role model, her brother Mudit. Mudit was barely 3 when she was born but he took his Big Brother role quite seriously. He’s her best friend, her teacher, her guide, and her critic. He is the biggest influence in her life.

Fountainhead School, Surat has been our greatest blessing. A school that’s truly inclusive – Unnathi is currently studying in grade 9. The school has molded her, empowered her and most importantly, given her some beautiful friends. She has been for every school trip, she has anchored shows during school events, she has participated in fairs and exhibitions, she also gets opportunities to help around in the community. The management and her teachers are very co-operative and her peers are regularly sensitized.

Unnathi is learning pottery and Kuchipudi. She plays table tennis, loves to dance, and has her own Youtube channel. She loves being on the stage and was invited to speak at the United Nations on the occasion of World Down Syndrome day. Unfortunately, the event was cancelled due to the pandemic.

***Children enjoying a session at Bubbles***

My experiences with Unnathi led to the formation of Bubbles. Bubbles is an initiative founded by Aanchal (my sister-in-law), Mudit, and me to create empowerment and awareness for the Down Syndrome community. At Bubbles, we organize various sessions by specialists for our children. When we had started off, our volunteers for all our sessions were young teens and I strongly feel that that is a very important step towards inclusion. After the pandemic, our sessions have gone online and we’re now reaching out to families outside Surat. We’ve also collaborated with the Friendship Circle, through which typical teens and our special teens interact every Sunday. October, being the Down Syndrome awareness month, we’re sharing a series of videos to dispel the myths about Down Syndrome on our social media handles.

Down Syndrome is a disorder, not a disease.
Down syndrome is not a disease, disorder, defect or medical condition and therefore does not require treatment, prevention or a cure. It is a naturally occurring condition, which impacts the arrangement in a person’s chromosomes.#downsyndrome #downsyndromeawareness # #theluckyfew #sindromededown #downsyndromelove #inclusion #specialneeds #nothingdownaboutit #love #trisomy #downsyndromerocks #morealikethandifferent #trisomia #downrightperfect #upsyndrome
Posted by Bubbles on Thursday, October 1, 2020

Unnathi and her Brother Mudit busting some myths on Down Syndrome

All in all, it’s been a challenging yet quite a rewarding journey. Unnathi is an embodiment of unconditional love and her positivity is absolutely contagious. Her resilience, her grit, and her charm are exemplary. She is the sunshine in my world!

As told to the author

Highlights

The manner of communication with our kids has the potential to shape their personalities. We often don’t realize but the way we speak to them leaves a lasting impact on them.

Any comment on the physical appearance of kids is disrespectful.

Don’t instill unnecessary fears in a child’s mind to stop them from making mischief.

Comparing your kid’s growth or achievement to other kids is hostile and emotionally damaging.

Spread the love

Parents can be the biggest cheerleaders as well as harshest critics of their children. In our defense I can say that all we want is to raise our kids in the appropriate way and sometimes we may take methods which are borderline abusive towards our kids. Healthy communication is the most important aspect of right parenting and it should not be compromised on any grounds.

The manner of communication with our kids has the potential to shape their personalities. We often don’t realize but the way we speak to them leaves a lasting impact on them. It won’t be an exaggeration when I say that parenting is all about how to communicate with kids, moreover what to say and what to refrain from.

Many adults suffering from anxiety and confidence issues trace back the origin of their problems to unhealthy and toxic communication with their families.

The world may not always be kind and appreciative towards your children. There will be bullying, mocking and discouragement. The home should be their safe haven.

Our communication with the kids influences the way they perceive the world around them.

We have enlisted ten phrases we should never tell our kids and what their impact is.

1. This colour/dress doesn’t look good on you-

Any comment on the physical appearance of kids is disrespectful. The kids may be little and unaware but they understand the sense of appreciation and criticism. It can be anything from “You don’t look good in this dress.” or “You should not wear white/black or any colour.” which may affect their self worth for a long time.

2. If you eat more, you will get fat-

Kids are not meant for following your fitness goals. They should not be submitted to cruel models of diets and fitness. Their age is to experiment with different tastes and relish them. You are also forcing down the wrong ideas of body image saying being fat is bad and thin is good.

Instead, tell them about how the food affects their health and say: “Eating too much of this can be unhealthy for you and we will eat just 2 spoons or a bowl.”

You can also say: “We have eaten this enough. Let’s try something new now.”

3. I told you so-

Making mistakes and learning from them is the way of life. That’s the way adults go about their lives too. We cannot expect our children to always be obedient and perfect. They ought to try their methods instead of always listening.

When we say “I told you so.” to them, we push them away from sharing their experiences with us.

The child may hesitate or get scared in sharing the consequences of their actions as they fear getting scolded or being looked down on.

Instead, tell them: “It’s ok, it happens. Try doing it the way Mumma/Papa told you for the next time.”

4. You can’t do this-

This could be the most discouraging phrase you can say to your children. Naturally, children try to attempt something purely out of curiosity and by being inspired by others. The most we can do is assist them in their attempt. Once they learn that a particular action is beyond their capacity, they will step back and wait for the right time. But what they will remember out of this will be your supporting attitude.

If we discourage kids at the first step, they will probably try to attempt it on their own and in your absence which is even more harmful.

So what you can say instead: ” Let me help you. It will be difficult for you to do it alone.”

5. She/ He is better than you-

Comparing your kid’s growth or achievement to other kids is hostile and emotionally damaging. It fills them with self-doubt, low confidence and even jealousy. Do we as adults like to be compared with our friends or colleagues? Your kid may start distancing from yourself emotionally with the guilt of not making you happy or proud.

Instead, work on their qualities and guide them in excelling in those.

6. Boys don’t cry or Don’t be a cry baby-

Tears and grief are not age or gender-specific. Crying is a healthy way of letting out one’s emotions and suppression of one’s emotion of sadness can lead to anger and aggression. When we stop our kids from crying, we are not only hampering their emotional growth but are also teaching them to pile up their feelings.

Studies show that many men who have temperament issues or are violent towards their partners have been stopped from expressing their anger and sadness through tears. Also, they believe that crying is an act of weakness and therefore they don’t respect the opposite gender.

Dr. Ishinna Sadana is a certified parenting expert and empowers parents to find positive ways of raising happy children @https://www.instagram.com/dr.ishinnasadana/

7. Girls/Boys don’t do this-

It’s the 21st century. Gender stereotypes have been thrashed and broken multiple times. Many parents now are choosing gender-neutral parenting.

Let your child do whatever they like doing irrespective of their gender.

It can start with something simple like letting your daughters play with monster trucks and buy your son a kitchen playset if he wants.

To read more about gender-neutral parenting, read https://infano.care/gender-neutral-parenting-parenting-beyond-stereotypes/

8. We can’t afford it-

If you as a family ever face financial difficulties, think a lot before disclosing it to the children.

Telling them that you can’t afford to buy a new toy for your kid is just not the right way to put it across, even as a casual joke.

It may cause fear and inferiority complex in them and they may start hiding their genuine needs from you.

Instead, try explaining that this will help you as a family to save for more important things.

9. If you don’t listen to me I will….

Parents often use the threat as a last resort to get their kids to behave the way they want but it’s not a healthy and long-term plan.

Also, it may backfire as kids get rebellious or its effect keeps on getting reduced.

Don’t instill unnecessary fears in a child’s mind to stop them from making mischief.

We all carry one or the other fear of our childhood into our adult life. It may be a fear of insects, ghosts or even a policeman.

Instead, tell them the reason you don’t want them to behave in a wrong way.

10. Go give a hug or kiss to them-

It looks adorable when tiny kids give a peck on your cheeks or hug you with their little arms. But don’t be in a misunderstanding, even infants and toddlers have a sense of comfort about their physical space.

Learn to respect their space and body.

Kids get the sense and vibes from others just like adults. Never force them to give a hug or kiss someone otherwise it may turn out very dangerous for the future.

Set and learn to respect their boundaries from the youngest age.

Always ask for their consent and try to teach them a sense of good and bad touch.

Ambica Agrawal is a parenting coach and she shares her wonderful insights through her instagram page @true_parenting_story

Child psychologists also believe that appreciating your kid at every small achievement with phrases like ‘good job’ can be detrimental to their emotional strength as they may get dependent on your appreciation for every little task.

Be respectful towards their feelings and emotions. Practice non-violent parenting.

What else do you think parents should refrain from saying to their kids? Share with us in the comments.

1 thought on “A Parent’s Journey With Down Syndrome”

Kavita thawani

October 6, 2020 at 10:02 pm

A beautiful journey. A journey becomes remarkable not because of the ease with which it’s taken, but because of the stumbling blocks crossed over to carry on. More power to Bubbles, Unnati, Mudit the bro, and the proud and resilient parents. Meghna, bless you to be a guiding light for other parents and the Unnatis in their lives. 🙏