GUEST BLOG – Up Syndrome

To celebrate World Down Syndrome Day, my little Bubba is proud to welcome our guest blogger, Aarti, who writes about her wonderful son Niam and the importance of changing perceptions of Down Syndrome in society. 

My son Niam is four years old. He loves music and dancing. He loves eating (almost anything and everything) but especially garlic bread! He loves school and making friends. He loves books and his all time favourite is The Very Hungry Caterpillar. He loves being cheeky and making others laugh. He enjoys going to the park. He has many of the same interests as any other four year old boy. Oh yes and he has Down Syndrome. Down Syndrome is not something that defines my little boy. To me, he leads a pretty much normal life. Well as normal as can be. He is working through his developmental milestones but just at a slower pace. 

I found out about his extra 21st chromosome during my pregnancy. It was a shock to say the least. It wasn’t easy and I wish I could turn back time knowing what I know now. Everything is and will be fine. I didn’t need to worry as much as I did. A lot of my feelings were down to how Down Syndrome is perceived in our society. All throughout my pregnancy, I was offered a chance to terminate. The news I received at the many hospital appointments were always so negative. Some people I have met have said, “I’m sorry.” But the honest truth is that there isn’t anything to be sorry about. My boy is perfect in my eyes, as every child is to their mother. It’s just a shame that even though we are in the 21st century, what people look like ultimately influences one’s perception of them. Niam has some of the wonderful facial characteristics of others with Down Syndrome but he also resembles his family. But it’s his warm hearted, caring nature that simply melts my heart.

Niam has accomplished so much already that I am so proud of. He started primary school this year and played Joseph in his first Christmas nativity. He has improved his Makaton and is great at learning new signs. He has recovered amazingly after his open heart surgery last June and he has just recently started taking his first steps! He is a loveable, sociable and happy little boy, who makes me smile with pride every single day. 

March 21st is such a significant day to us as it’s a chance to share with the world how wonderful life is livingwith a child with Down Syndrome. Of course there are off days and as a parent I often feel sad. Sad that the world and the society that we live in does not accept such differences.

I feel that it is my duty as a parent to raise awareness of Down Syndrome, to ensure that people understand that actually there isn’t much to be ‘down’ about.

My son has taught me so many beautiful things. He has taught me to laugh and smile at every opportunity. He has taught me to appreciate all the tiny things we may take for granted.  Because of him, I am so much more of a stronger person. 

Every child is a gift. Every child is special and unique. We really must start accepting these differences and changing mindsets for the future and well being of all of our children. I wouldn’t change him for the world but I want to change the world for him. A place where he is accepted by others and given more opportunities to succeed in life like any other person.

For more information on World Down Syndrome Day, please go to https://worlddownsyndromeday.org.

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