FINDING A COMMON MIND COMMUNITY IS CRUCIAL
While activities like hiking help their children with special needs, parents also benefit from meeting others on the same path.
The early stages of the care journey were no walk in the park for Mdm Kan, who quit her job around nine years ago at the age of 50. She had to manage her expectations, having not been her son’s primary caregiver for many years.
“When I had my son with Down syndrome, I didn’t cry. I never thought it was a challenge, just to go and do the best I can. But after I retired, I realized the link was missing. Even though we bonded, the focus that I could have given him as a full-time carer was not there,” she said.
“That’s where I broke down. I didn’t know I would be in so much trouble until we couldn’t understand each other.
As such, finding support groups like Mr. Yap’s has encouraged Mdm Kan. She regards her son’s friends as “buddies” and their parents as “kakis” (Malay for “buddy”).
They “play games together, have fun together and cry together,” she said. “We really struggle to wrestle, but we understand each other.”
Finding her own community also taught Mdm Kan how to better support her son.
“I first learned from a volunteer when we had to bring food for our children. The volunteer told us (the parents) not to help or interfere with anything. That’s when I learned that they were trying to train (our children) to be independent, when we as parents have been helping them from the beginning,” she explained.
“When we try to teach our own children, they tend not to listen. But if there are other people, like a coach or team leader, they tend to follow and listen. Sometimes it is easier for our children to be coached by a coach than by the parents. They will take advantage of their parents; they’re going to freak out.
Mdm Kan added that these support groups for parents do not have to come from “official organizations” like charities and churches. In fact, many who “pop up on their own” spread by word of mouth, and their only communication platform is a WhatsApp group chat.
And as an expat, Nadia’s first exposure to these local parent support groups about three or four years ago was key to her belonging. Her son had been homeschooled until then.
“Once I start interacting with Singaporean parents, you realize that they are so willing to help you and include you in everything. And it becomes a community,” she said.
“I don’t know if a doctor would help me as much as any other parent. I would trust a parent more than a doctor. Parents gave me hope. They included my child; they tell me what works and what doesn’t.
For parents who are just starting to care for a child with special needs, Nadia advised them to “breathe first” after their child’s diagnosis.
“Look for other parents who have been in your place; parents of slightly older children who have made the same trip. Look on social media. Once you get your hands forward, you’ll get a lot of help. But you have to reach out, and there will be plenty of hands to pick you up,” she said.