Being a parent is an around-the-clock job – add on the challenges of raising a child with special health care needs, and it can feel overwhelming. Parents of children with special needs have to manage numerous medical appointments and therapy sessions, advocate for education and support services, manage challenging behaviors, and care for other family members and siblings.
For the Chinese population, this is an even bigger struggle. Disability is still considered to be a taboo subject in many Asian communities. Families that have children with special health care needs, such as autism, developmental disabilities, or Down syndrome, feel isolated from their neighbors and report feelings of guilt and shame about their child‘s condition – they are often stigmatized in their community. For parents who speak limited English, language can also be a barrier, making it even more difficult to vocalize their needs to medical providers and find the right resources to support their children.
The Charles B. Wang Community Health Center created the Special Needs Initiative to provide support and improve care for these families. Since 2011, we have been working with parents, specialists, social workers, therapists, educators, and community programs to develop a system that empowers parents to help their children reach their best potential.
One of the most inspirational components of the program is the Parent Support Group. Facilitated by a pediatrician and parent peer leader, this monthly group is conducted in both Cantonese and Mandarin. Parents are introduced to services that cater to children with special needs and gain social and emotional support from each other. We recently sat down with some parents who participated in the Parent Support Group to hear about the impact of this group on themselves, their children, and their families.
“I felt helpless in the beginning,” says Angela, a parent support group member of four years. “I would talk to the parents of the typically developing kids [and] they don’t understand me at all.” While many people have heard the term “special needs,” few people know what these words mean. For Angela, everything changed when she finally met peers who could empathize with her. “After hearing the experiences of other parents, I didn’t feel scared anymore,” she explains, “this group gave me a chance to share my feelings with other parents with similar experience, and I feel better.”
For Sandy, a group member for five years, parents of older children were an especially good resource: “They have gone down this road, so they know how to walk through it. This group teaches me how to help my child adapt to social life. I also learned how to determine whether my child needs to take medication.”
The groups also train parents to use behavior management techniques that are critical to building a positive relationship with their children. “The ABA training impresses me the most,” says Wendy, a group member of eight months. ABA stands for applied behavior analysis. ABA therapy lowers challenging behavior and increases skills for communication, learning, and everyday living. “The older generation will blame everything on you and complain that you don’t know how to teach your kids,” shares group member Angela, “the group taught me how to manage my child’s behavior and better communicate with my family.”
Stress is also a frequent topic of conversation for the group members. Many parents have reported having trouble sleeping and feeling moody. To help reduce these symptoms, parents start every group meeting with a relaxation exercise. “We need to find a way to protect ourselves,” says group member Sandy, “even some simple stretches are beneficial for me to fall asleep. [One of the parents], her husband is a doctor. He requires her to run every day, and she reminds me as well.”
Through the parent support activities and training, parents have made meaningful relationships within their community and have a new appreciation for the potential of their child with special needs.