My First Born: (3) Overcoming the Stigmatism of Down Syndrome

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They looked and said “Down Syndrome.” I look and say “beautiful.”
Since the day our boy arrived, we faced an unknown future. None of us knew much about Down Syndrome (DS) but the stigmatism was there because of the many myths that have developed in society. It was an interesting journey researching about DS and what it meant for our son to be diagnosed with Robertsonian Translocation. Research certainly helped us understand the diagnosis and gave us a new perspective for others with DS.
For instance, did you know that not all people with Down Syndrome have an extra chromosome? In fact, approximately 1 in every 50,000 diagnosed with Down Syndrome (like our baby) instead have what is known as Translocation Trisomy 21. This means that a part of a chromosome breaks off and reattaches itself to another chromosome, which can cause similar symptoms to Down Syndrome.
Did you know that having a child with Down Syndrome does not mean that a person’s genetics is necessarily weak or affected (a common and offensive misconception I have read from the opinions of other people)? Although a translocation comes with additional fear for family involved because the parents need to be tested if  they are a ‘balanced carrier‘, tests like this can inform the parents (more often than not) that it was something that ‘just happened’ during conception? (Like my husband and I.)
Also, did you know that a person with Down Syndrome is far more like their family members than another person with Down Syndrome?
Did you know that their is a variety of symptoms that can affect someone with Down Syndrome but which ones and how many symptoms vary from person to person (and although they are usually delayed at meeting certain milestones as they grow, eventually they will meet them, none-the-less)?
Did you know that many individuals that have been diagnosed with Down Syndrome function well in society; living independently in their own accommodation, working, sometimes with a Trade, competing in sport, etc?
Did you know that families with a child diagnosed with Down Syndrome want people to acknowledge their child by their personality and what makes them who they are and not define them by their disability?
Did you know that because our family is Christian, I pray for protection, health and development of our baby boy daily? And did you know that despite his diagnosis, he is meeting his milestones very well and is very healthy? This is our testimony.
Did you know that we first did not want to tell anyone about his diagnosis because we did not want to take away their joy, celebrating the arrival of our first baby?
Did you know that we later did not want to tell everyone (besides close friends and family) because we did not want him to be judged by anyone as “the baby with Down Syndrome?”
I am so grateful to be blessed with our baby boy and hope that people get to know our son by what makes him who he is daily, celebrating his achievements and only acknowledging any challenges that he might face in life when they arrive.
Regardless of his diagnosis, it has been a wonderful journey so far watching our boy grow and do so well. At 6-months-old, we have experienced a lot of joy. We took him swimming for the first time and watched him light up once he realised he could splash and manipulate the water with his hands. We introduced new textures for him to touch and feel; like the blades of grass under his toes, the whiskers of his dads beard, or just recently putting up the christmas tree and letting him grab and feel the texture of the bristles under his little fingers. I also watched my husband sit our boy on his lap and let him hold his drum sticks as he played different beats. It was great to see, but what surprised me today was when my husband decided to give the sticks to our boy.  He had learnt and was lifting the sticks appropriately to play our electric drum kit. Using both hands he made a repetitive beat until he lost coordination. Then my partner would align the sticks on the snare again for him and he would play again. The snare was easy to hit and we decided to capture it on video. He then hit the symbol a few times with the left stick while hitting the snare with the right which sent us into a fit of laughter. We just couldn’t believe how well he can play.
Nothing seems to be holding him back. My husband also learnt that by holding his hands from a sitting position, he will pull himself up to a standing position now. To many mums, all these milestones would seem normal – if not a little late compared to their children, but considering we were advised by specialists to prepare ourselves for a severe disability when he was born, I am overwhelmed with joy and gratitude. Our boy is understanding, applying, analysing, judging and creating.
I once read the opinions of a frustrated parent that saw a sign on their neighbours lawn which said, “I’m so proud of our little girl who just graduated from grade 2.” In response, they mocked by saying that “it isn’t that important” and “no one else really cares.” Back then I only thought it was a bit weird that it would bother them (but wasn’t too concerned either way), however my eyes are now open to a whole new perspective of a love for life and I think it is fantastic that they celebrate there child’s milestones, no matter how small they are. – Not all children have the opportunity to meet simple milestones that are commonly taken for granted in everyday life. Perhaps God would appreciate more of us celebrating the complex ability to grow, learn and enjoy life.
It’s also apparent that our boy is close to learning how to crawl, which is exciting to both watch and encourage. Every little step achieved has brought me a sense of gratitude from rolling back and forth, to pushing up onto his arms, to wiggling a full rotation in his cot, to wiggling backwards off from his play mat, to straightening his legs and poking his bum in the air, to pushing himself up onto all fours and rocking back and forth, before finally lunging himself forward after a toy he wants. I’m not sure when he will start, but I’m thinking it will happen very soon. Praise God.
To finish off an amazing month of milestones, I was blessed just recently to hear our boy, the day before turning 7-months-old, call out “mum, mum” after putting him down on the floor to attend a short trip to the bathroom. I was so shocked that I just lay there with him and continued to encourage and laugh with him at his achievement. I also recorded it to celebrate with friends and family later. What an amazing milestone to achieve! I feel so blessed because parents/carers of children with Down Syndrome on average, wait until their child is 11-months-old.
I am just so proud and so grateful. Thank you God. I love my boy so much.
If you would like to read more about our progress or about my testimony since he was born, feel welcome to browse the rest of my blog:
Thank you.

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