By Janelle Wetzstein
Northwest Asian Weekly
Raising a child with special needs can be extremely difficult — especially when English is not your first language. Though there are many services offered to children with disabilities and their families, navigating the system to access them can seem almost impossible when one has to additionally battle language barriers and cultural stigmas.
That’s how Ginger Kwan, executive director of Open Doors for Multicultural Families, felt when she and several other parents started the organization in 2009.
“We came to the realization, after more than a decade of struggling together, that there was no better option for us,” said Kwan. “So we formed Open Doors to better serve this population, because we are the minorities of the minorities.”
Open Doors for Multicultural Families is a nonprofit organization based in Kent that offers assistance to families of color that have children with special needs. Kwan said that individual in-home visits, language and cultural assistance, parent training, group sessions, and referrals to health and informational services are all offered in a variety of languages.
Kwan’s own son has autism. As a Korean immigrant, Kwan dealt with a language barrier — English is her second language — and the cultural stigma that comes from having a child with special needs for 14 years.
During that time, she met many other immigrant, refugee, and international families also struggling with these issues.
The latest Washington State Department of Health profile on children with disabilities estimates that there are at least 1,700,000 children in the state requiring specialized health care. This estimate, published in 2005, divides the number of children by age group, but it does not specify how many are children of color.
Kwan said this is representative of the lack of consideration offered to children of color with special needs.
“In talking about families who have children with disabilities from culturally diverse backgrounds, there is not one organization locally that is dedicated to serving this population. There are many organizations serving people with disabilities in King County, but culture and language have always been a barrier for minority populations.”
Though Open Doors does not offer medical services, it does have access to a large network of medical professionals that specialize in helping children with disabilities. Connecting families to these professionals is another way that Open Doors assists its clients.
“Our services can be individualized for specific needs, or be part of group interaction for families going through similar issues,” said Kwan. “We work with children with autism, Down syndrome, learning disabilities, cerebral palsy, and epilepsy, to name a few. We also work with the larger community to provide education on how to work with these children.”
Winnie Tet is on the board of directors for Open Doors and also has a son with autism.
She has known Kwan for more than a decade and began working with her in 2008, when her son started having problems within the Seattle School District. Her son’s school began claiming that he was displaying violent behaviors on campus.
Tet said she tried to work with the school to set up behavioral strategies to help both the school administration and her son.
The school seemed determined to either medicate her son or keep him out of school entirely.
“The school was not supportive at all. They suspended him for eight days for what they called ‘violent behavior.’ They said he could come back when he was medicated, or that he could serve his suspension,” Tet said. “It was an outrage because when I picked him up from school, he was just sitting quietly. He was never doing anything.”
When Tet decided to appeal the suspension, with the help of Kwan, she said the school retaliated by reporting her to Child Protective Services (CPS) as an unfit mother.
“Kwan was a major help,” she said. “CPS investigated and found nothing, and Kwan helped me fight to move my son to a different school, despite the district’s desire of keeping him where he was. We eventually got him moved, and he is doing much better.”
Tet added that she would have had a very hard time making it through this battle with the school district if it hadn’t been for Kwan’s connections and assistance. After this, Tet became both a board member and a client at Open Doors.
Almost as important as providing assistance in different languages, Open Doors also reaches out to families that come from cultures that ostracize children with disabilities.
Kwan said that many people of color come from countries where people with special needs are seen as a burden or as a curse brought on by a relative’s actions.
“Asian culture definitely has that negative stigma toward people who have disabilities,” she said. “These kinds of beliefs contribute to a mother’s struggle, because in the Asian male-dominant society, women raise the children themselves and are blamed if their children have any issues.”
Kwan described a Korean woman whose child had cerebral palsy. The entire family blamed the mother. The stress of that kind of thinking eventually led that woman to divorce her husband and split up her family.
Kwan also talked about a Chinese mother with an autistic son. Kwan said that not only was it extremely difficult for the woman to take her son out, but that when she did, community members looked at her as if she were a bad mother, blaming her for his disorder.
“So the Chinese mother stopped leaving the house and became very isolated,” Kwan said. “Very often, families feel ashamed about having children with disabilities. So these children are kept hidden behind closed doors, unless they are able to connect with other families in similar situations.”
Both Kwan and Tet agree that becoming involved with other families who have children with disabilities is essential when raising special needs kids. Many of the other 250 families Open Doors works with feel the same way, including the two mothers previously mentioned.
“Through our organization, families can meet other families with children just like theirs,” said Kwan. “Once they learn more, they become more involved, more active — they can see a future. Without support and connection, very often, the future can seem depressing because these parents feel like they have to continue it alone forever. But we believe that we can empower families to become strong advocates for their children with disabilities.” (end)
For more information, visit www.multiculturalfamilies.org.
Janelle Wetzstein can be reached at email@example.com.