Can’t waste time crying
It has been over 24 years since I found out that my son, Johannes was going to be born with Down Syndrome.
When I first knew, I was a few months into the pregnancy.
I spent a good month sitting around, frustrated, thinking only about that. I cried a lot. I could not focus on anything else. A friend told me, “You can’t waste time crying. Instead, you should spend the time teaching and nurturing your child.”
People around me recommended that I join a support group for parents with children with Down Syndrome. The group was really helpful and I learnt so much from attending it. Once, one of the parents taught me massage techniques that I could use on my son.
Seeing so many brave faces in the group really inspired and encouraged me to keep going. I think that it is important for parents to have a strong support system, especially since they are the primary caregivers.
Johannes. He can be hilarious. He can be your best friend. He is like any other 24-year-old to me; confident and determined.
Before Johannes was born, I was told that his condition is mild. Even then, we started very early intervention for him. This helped him to learn how to be independent from a young age. We are extremely lucky.
When Johannes was eight months old, we sent him to a centre for children with special needs. In the beginning, I thought he was too young to be taught anything. But the centre successfully made use of signing and visuals to teach and train him.
At the age of two, Johannes started going to a childcare centre. There, they trained him to speak. Now, he can articulate well and I think early intervention played a crucial part in this development.
As his family, we also try to expose him to as many things as possible. We explored different hobbies that he might enjoy, took him on trips overseas, and introduced books, music, sports and writing to him. We wanted him to find something that he enjoyed doing.
The trips we took overseas as a family helped him gain perspective on how life is beyond the norm that he is used to. This also prepared him for the trips he later took with Special Olympics.
I first heard of Special Olympics from one of the parents in the Down Syndrome support group. She told me about a programme that Johannes could participate in. He was nine when we signed him up as an athlete with Special Olympics Singapore. He took up badminton and has been playing ever since. Now, he even helps to train the beginners.
In Singapore, there is still a stigma surrounding intellectual disabilities such as Down Syndrome. Over the years, it has gotten better. There is higher awareness and more understanding within the community.
I remember bringing Johannes along to a supermarket when he was younger. The cashier asked me, “Did you do anything wrong? Did he eat anything wrong?”, implying that I was responsible for his condition. Now as I look back, I understand. Back then, there was little awareness of what Down Syndrome is and what people with Down Syndrome are like.
For those who are afraid or resistant to interact with Johannes, I hope they will be open to getting to know him. Establish a certain level of trust. Start a conversation. This is how he will get to know you; who you are, where you come from and your intentions. I hope to see people interacting more with not only my son but also all others who have Down Syndrome and other intellectual disabilities.
Don’t be afraid to get to know people with intellectual disabilities. Don’t underestimate them. Approach them with an open heart and give them the opportunity to prove themselves.