A Year With My Son – Down Syndrome Is A Condition He Has, Not Who He Is

Posted: July 16, 2019

From a frail baby to a toddler who now stands on his own, a mother describes her journey with her son who has Down Syndrome.

A lot has happened in the year one of Reyansh, and a lot more is in progress. I’ve seen him grow from a tiny little human who couldn’t raise his head to today transitioning and sitting and even standing. He smiles, he giggles, and laughs at unexpected things!

Oh, what I would give to just keep watching him laugh all day. It is the most infectious laugh. He fills the room with his affection. You just have to be near him to feel like everything is fine and that everything will continue to be so.

You read about him earlier that ‘Just a Diagnosis Can’t Define Him‘. Down syndrome is a condition he has – it is not who he is. He is not a Downs kid, he is Reyansh, a kid who has Down syndrome. As he is growing up, I can see how true it is. He is, first and foremost, a baby who lives a slightly different routine from other kids, and that’s about it.

Yes, the routine is different; but the unending physiotherapy sessions, and doctor appointments do pay off. The constant lookout for a cognitive activity or physical movement is there. However, every little milestone is a big win for us and every naughty act is a blessing.

If there is anything Reyansh has taught me in the last year, it is that it’s all okay, it’s all good, and there is nothing I need to worry about. He also taught me patience and that things take time. And there is nothing wrong in taking time as long as you finally arrive with confidence.

He just continues to grow! And I can’t believe he has turned into a big boy now. I look at the pile of clothes he has outgrown and remember the time when even infant clothes were loose on him, and he was so frail to look at.

Google showed me a video of Reyansh’s transformation and my God, what a transformation it was! Thank you Google Photos for sometimes doing things that I can only think of and I don’t have time to do. He has grown up magnificently, it’s true. He is chubby and cute with a sparkle in his eyes and mischief on his lips.

What I’ve also realized is that to parents, their children will always be the most beautiful beings in this world. I have found Reyansh handsome right from the day he came into my arms. There is no person more perfect than he is, for me, in every way possible.

His personality has flourished in the last few months drastically, you don’t realize the slight changes, and then when you sit and think – it’s like voila! I’m a person of my own.

He has preferences, he isn’t all smiles always – he shows disappointment, anger, even frustration sometimes. There is a wide range of emotions he experiences and expresses. He knows how to manipulate you into giving him food! He knows that if he just makes the sound of crying (and not actually cry) he can get away with things. It actually took me some time to realize this and then when I started calling him out on his drama, he would start to smile or giggle. Isn’t it amazing? This is a one-year-old we are talking about.

Did I mention he loves to read books? Oh my, so many books – flipping through them and just observing them. He can do it all day. There is a sense of curiosity you can see in him when he is around books.

I’ve learned to discipline myself too. I’ve learned my preferences as well. I’ve learned to be fiercely possessive and protective of my son. I’ve learned to advocate for him as well.

I’ve also learned that he is a child with ‘additional‘ needs and not ‘special‘ needs. This is an important learning. Many people label these children as special. They are not. They are just children doing their own thing, living their own journey.

Yes, what they do have are additional needs, extra help in a certain aspect of their life. So as a principle I now refrain from calling my child ‘special’. It is important to understand that if you think your child is special and probably has limitations, all you’ll focus on is a limitation. If you think your child is like any other child, but yes, he needs a little more hard work in certain areas, you’ll focus only on the hard work and remember that he is capable of achieving anything he puts his heart or mind to.

But I am a mother and so I have wishes and I just can’t wait for him to start crawling and walking and turning the house upside down. I can’t wait to run behind him all day long. I can’t wait to take him swimming and to music classes and more! I also can’t wait to hear him say the word ‘ma’… To start to talk. This year I’m going to learn sign language to help him communicate if need be. There is just so much in store for Year Two. So much to be achieved and lived.

We just have to learn to focus on the positives, and it isn’t difficult to do that when you have amazing children like ours.

After all, we are #TheLuckyFew.

First published here.

Image via Pixabay

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