National Down Syndrome Congress 2014 Convention, Indianapolis
July 11th to 13th, 2014
The annual Convention hosted by the National Down Syndrome Congress (NDSC) is the premier and most informative event specifically for the national and international community of persons with Down syndrome and their families. My name is Kelvin Thomas and I had the opportunity this year to attend the NDSC Convention with my wife, 16 year old son and my 5 year old daughter with Down syndrome. This was an experience we will never forget and here’s why.
Like most parents in Trinidad and Tobago we were shocked into a new reality of raising a child with Down syndrome with little to no medical advice or counseling from our “well trained medical professionals” in our hospitals. Facing the unknown, our strong spiritual foundation enabled us to quickly arrive at the point of acceptance and even curiosity as to the divine purpose and nature of what our lives would now be having a child with Down syndrome. Still ill-equipped we got an epiphany that if we are to successfully raise our child to become independent, as most of us would have as a goal, we would need to tap into a reservoir of knowledge and support. This internal posture triggered our journey that would lead us to Indianapolis.
One day while running a business errand with my daughter tagging along, Glen Niles approached me seeing that my daughter had Down syndrome, introduced himself and the Down Syndrome Family Network (DSFN) to me and invited me to a workshop, which I was happy to attend with my wife. Through DSFN we were able to gather pertinent information that greatly assisted us and directed us to valuable resource and relationships that today we still enjoy. Needless to say, Glen mentioned the upcoming NDSC Convention in Indianapolis, perhaps in a workshop, which I took note of and subsequently became the topic of conversation with my wife. We decided that this is an opportunity to learn so much and equip ourselves to successfully raise our daughter.
The NDSC Convention in Indianapolis didn’t fail to deliver the insight, knowledge and experience we were seeking for. When we got to the JW Marriot Hotel for on-sight registration, everything was so well organized and the multiple workshops that catered for every stage of development and a wide range topics overwhelmed me as I wanted to attend all.
I attended the D.A.D.S. Session, which is close to my heart. This is an initiative that Glen told me about in 2013, so I was eager to be a part of it and see this established in Trinidad and Tobago. I have heard so many stories in Trinidad of men bailing out on their families that I wanted to meet these guys in Indianapolis and hear of their stories. We have to strengthen the family unit if we are to have a fighting chance of raising our children.
I also attended another workshop addressing the issue of Down syndrome and Autism. My daughter is much more than Down syndrome. She is on the autistic spectrum and that dominates, because Autism is behavioral. My wife and I attended separate sessions, but related to our daughter’s unique dual-diagnosis. The parents that came shared their stories, struggles and hurts. The feelings of isolation. For many of us, we asked the question, “why me?” The answer became clear to me. I felt privileged to be in the same room with these parents who fought for their children, exercised such great patience, expressed such determination and possess such practical knowledge that is responsible for the progress seen in their children. These are not ordinary people. These are not frivolous average humans who worry over material things. That’s my inheritance as a father of a child with DS+ASD. To stand resilient. My daughter is my joy and greatest life project for which I have no intentions to fail.
At this convention we discovered parents like ourselves and even in one of the many books we bought, the author speaks of her challenges which seemed identical to mine. We could leave and head back to Trinidad at this point. Mission accomplished. We’re not alone. We’re not isolated. I have to out-law isolation and embrace community life. Connecting to parents and professionals across the world who is so willing to share information and their experiences.
My 16 year old son and big brother to his sister with DS was there and participated in a conference designed for siblings of children with DS, which from all reports was very impactful. He got to meet a sporting celebrity and even visited the famous Motor Speedway where he got a chance to watch F1 racing cars practice.
Of course our kids with DS won’t be left out. They too had their own conference and also a kids’ camp where our daughter enjoyed fun games and things to do while we attended the many workshops.
In conclusion, I began this journey struggling to comprehend the way forward, but I am convinced that when God decided to give us this gift of a child with Down syndrome, it wasn’t designed to break us and plunge us into chaos, but rather with our child came a storeroom that in the fullness of time releases resource, relationships, information and opportunities that would guarantee the ability to take good care of our kids and become an extraordinary super human. There we were recounting the journey, meeting Glen Niles and one resource after the other unlocking everything we need. If it won’t for my daughter I won’t be half the man I am becoming and I would never had the opportunity to take my family to Indianapolis and meet the many wonderful people that I am grateful to have met.
Anything is possible, but we just have to make the commitment, possess the determination, express the patience and make the right decisions for the right reasons. Be and stay connected to the right people. Don’t wait for resource to come to you, it’s a journey, we have to keep moving forward.
Click here to view some photos of the trip.