October every year is celebrated in many countries around the world as World Down Syndrome Awareness Month and in the last seven years, I have taken to my social media handles (mostly Facebook and and sometimes, Instagram) to create awareness. As parents and carers of individuals with Down syndrome, this is a big deal for us. It is an even bigger deal for me because I am aware of families who hide their children with Down syndrome in Ghana because of the societal stigma and simply because they don’t know better (I am not saying this to spite anyone but from experiences shared with me)
I chose the path of sharing information about Down syndrome by sharing my journey with my son. Some time last month after making a post, I had someone slide into my inbox and tried to chide me for ‘making too much noise’ about my son and all that he can do/is doing. It took me several hours to be able to respond to that message because it was so unexpected and I saw it as an opportunity to enlighten them on Down syndrome further. I waited till they were online and asked if they were willing to engage me on a conversation about their comment? They answered yes.
I asked them, if they had had to do anything extra other than the usual to get their child(ren) to meet developmental milestones that I seemed to be bragging about? They answered, not really. Do they celebrate it when their child(ren) achieves these developmental milestones without so much effort? Their answer was a definite yes! Do they share these milestones achievement with friends and family or not? Of course they do! I took my time and explained to them that, for my son and others like hime, to achieve any particular developmental milestones, it means we, yes, my son and I, have been working on them for months/years, with a team of health, allied health and therapists/professionals – so it is a big deal to know that our efforts have not gone to waste. These so-called touting of the achievements, gives us the energy to tackle the next task.
It is therefore not enough for me to just keep it to myself and rejoice that he’s done it and check it off as achieved but I wish I could shout it from the rooftops to let the whole world know that he has done it. The world includes parents who have been struggling with the care of their children because society may have failed them, it also includes parents who have just received a diagnosis for their child and are stressing about the journey ahead and whether they are equipped enough to handle it. Sharing our journey gives others not only hope, but some form of guidelines (call them sign posts, if you may) on their own journey. Let’s just say, this person left my inbox with a different attitude than they entered.
I bet you are wondering where all of this is leading to? This month, history was made! We had the first person with Down syndrome running an ironman triathlon! Yes, Chris Nikic, 21 living with his parents in an Orlando suburb, Florida, became the first person with Down syndrome in the world, to become an Ironman! I followed the hype prior to the race via Facebook, followed the race via updates on Facebook and have been following the interviews after the race via several news media and Facebook. He got the recognition from the Guinness Book of Records for this achievement! If you don’t know already, I am this excited for Chris and his family and every individual with Down syndrome the world over because I am also raising an amazing son with Down syndrome!
Let me tell you about the Ironman Triathlon. Ironman combines the three disciplines of swimming, biking and running. They cover distances of 3.8km swimming, 180km biking and 42.2km of running. They are performed consecutively in one day without stopping and with just a short transition period between each discipline and must be completed within 17 hours to qualify as an Ironman! https://www.sportstoursinternational.co.uk/they-say-anything-is-possible-but-can-anyone-do-an-ironman/
Clearly, this is an endurance sports that one cannot just get up and do and as we all know, these kinds of sports events are not for everyone! Hunter Lussi is the youngest person on record to have completed an ironman race at only 13years old – https://www.kidzworld.com/article/20421-worlds-youngest-ironman/ . Tim Don is on record as the fastest Ironman with a time of 7:40:23! https://www.on-running.com/en-gb/articles/tim-don-breaks-the-ironman-world-record
From all I read about Chris, before he became famous by achieving this feat of Ironman, he had an open heart surgery at 5 months old, was able to walk unsupported at 4 years old and to keep him from choking, his parents only fed bay foods until he was 6years old! Apparently, when he learnt to run, it took him years to be able to swing his arms by his side instead of holding it straight above his head. Going into this race, Chris had one major goal; if he could finish this race, he could fulfil one ultimate dream of living an independent life, get a wife and begin a family of his own! https://www.nytimes.com/2020/11/16/sports/ironman-triathlon-down-syndrome.html
I found out that Chris only learnt to ride a bike six years ago at age 15! And he set his eyes on the Ironman triathlon only October last year. Once the decision was made by him, through the support of his family and a local endurance training group and his volunteer coach, Dan Grieb, they began training with only one push up a day. Chris then challenged himself to be 1% better every day – .https://chrisnikic.com/ With that determination, he and his coach trained for 4-8hours every day for the last one year and he completed the Florida Ironman competition In Panama City Beach on November 7, 2020, with 14 minutes to spare!
A few days after the race, which wasn’t without its own obstacles, when the New York Times reporter, Kurt Streeter, spoke with Chris, he told him that ‘I learned that there are no limits, do not put a lid on me’. It is for this single line that I am writing this post today. Chris was supported by parents who believed in him and gave him the opportunities he needed to get to this point that we are all proud of, at 21 years old. They had to change elementary schools for him, 7 times until they got a place that was a perfect fit for his needs and development. They knew he could ride a bike so they did not give up until he learnt the art at 15 years old and there was no looking back for him after that!
His mom became a stay-at-home mom to make sure he got the care he needed. They didn’t say the Ironman was out of his reach, especially knowing fully well that no special considerations will be made because Chris has special needs, they just encouraged him because he was convinced he could do it and they believed along with him. At the end of the race, Chris’s dad, Nik Nikic told the Today Show that, ‘’Our hope is that Chris will launch thousands of parents to look at their children differently” – same reason I’m sharing this.
As parents and caregivers, let’s acknowledge the challenges that comes with Down syndrome, but let us not limit our kids because, they are capable. I have always told new parents that the key words/phrases you never have to forget, when caring for an individual with Down syndrome are patience (loads of it), consistency, love, encouragement, praise and hope. Believe in them so much that they have no choice but to believe in their own abilities to break stereotypes and limitations set for them by society.
I could go on forever but I think you already got the picture I’m trying to paint here – it is possible, we need only believe, encourage and push the boundaries to achieve!