The Down Syndrome Association (DSA) organized a sharing session for new parents of children with Down Syndrome (DS). This session would give us more info about the first 18 months of our child, and more importantly, to network with people in this community.
The sharing session had started when I reached. One of the parent mentors kindly helped me to get a seat next to the aisle so that my pram can be next to me. Good, K is asleep, so I can fully concentrate. I scanned around quickly, checking out the participants.
The session started with a welcome speech by the chairperson of DSA followed by an introduction of the parent mentors, and then us, the new parents. We broke into our small groups for some sharing after that.
What struck me was that most of the new parents are around my age group. Also, many of the parent mentors have at least 3 kids. One of them has 7 children! How do they manage?? I'll share more about some of the parents and what I've learnt from them.
Pat - this lady is amazing, and I was greatly encouraged by her story even before I met her in person. Heard her story from my parent mentor when she visited me during the confinement month. Pat had two boys, and the older passed away of cancer when he was eight years old. Before his death, he asked his mom to give birth again so that his younger brother can have a playmate. So, Pat got pregnant and gave birth to a daughter who has DS. She said that though her daughter has DS, at least she is alive and they can help her and be with her. How touching! I cried when I heard this. I admire the courage and strength of this lady. It must have been heart wrenching to see her own child pass away at such a young age. And then to have to go through the fear and uncertainties once again, to face the challenges of taking care of a baby with DS.
Grace - when this mom learnt that her baby boy has DS, her paediatrician told her not to bother sending him to a school in the future, and that he wouldn't be able to talk or do much. She believed him initially, thinking that her son will not be able to do much in the future, but soon realised that he was totally wrong. This prompted her to do her best to help him. She quit from her job and took all opportunities to teach her son. She read a lot on DS, did flashcards with him, and even woke him up from his naps just so that she could do some therapies with him. I can imagine how tired she must have been then, but she persevered through the challenges.
One couple introduced themselves as cousins of another participant. They have 3 children and they attended the session to learn how to take care and help their cousin who has a child with DS. How encouraging! It shows how much they love their cousin and the special one! The child is so blessed to have such a doting uncle and aunty who are willing to take care of him.
There are many more parents whom I would love to network with. Hopefully I can do so during the next DSA event.
During the sharing, I realise our journey with K is not alone. Many of us have similar questions. What lies ahead? Will their physical health get worse over the years? What are the therapies available? Who is the best paediatrician in Singapore? Where do we get help and guidance in this area? All these parents here have/ will walk through similar journeys with our special ones. I take comfort that I am able to get support and advice from the parents of this community when the going gets tough. You may want to get this book to find out more about the experiences of these parents.
Echoing the words of the chairperson of DSA, not many children with DS have managed to survive, but OURS HAVE. So, congratulations to all the parents for bringing our special ones to this world!
