When expecting a baby, most parents often don’t think about their new child having a disability. If the baby has a disability, however, the families find they must adjust their plans and dreams—their thinking.
One of the first things to learn is that disability is part of the human experience in any culture. It is a natural human condition in all nationalities, geographic areas, economies, and educational backgrounds.
As cultures may be different from one another, most parents of children with disabilities have several things in common:
• Parents value their children with disabilities and provide love and unconditional care. They may feel sad, however, because they realize the child will probably face disability-related challenges throughout life.
• When they first understand that their child has a disability, most parents simply want the disability to go away. Most disabilities don’t just go away, so the parents realize they must learn how to manage the disability and its related issues.
• Parents often seek a reason for their child’s disability. They may explore family history, environmental factors, the pregnancy, an injury to the child, or any other factors that contributed to the disability. Many cultures, including those of Southeast Asia, no longer consider disability to be the result of a curse, sin, or evil deeds.
• Parents of children with disabilities must go through a process to accept the disability, find out more about it, and learn how to manage it, so their child has an opportunity for a good future. Ultimately, the parents must develop confidence to do what they believe is in the best interest of their child.
There are strategies that parents can use to help their child with disabilities. Most apply to any culture:
• Learn to accept the disability. As you learn more about it, you become more understanding of the condition and how to support your child.
• Seek services for your child. The earlier after your child is born or diagnosed, the better. As you and your child gain more information and experience more options, you can make good decisions. There are many resources for very young children in the community. Some resources come from the medical community, some through the schools, and some from other systems or organizations.
• Rely on yourselves. Understand that you are the parent. The child is your child. In the Southeast Asian culture, the support from the community and extended family can be a good thing. Ultimately, however, parents must do what they believe is best for their child, despite the well-meaning intentions and advice of family, community, and even professionals.
• Realize that for each resource or service, there is usually a separate process or system. Families must follow the instructions for each individual service. For example, a health clinic may do things one way, but the school does things a different way.
• Know that your child probably is entitled to some services by law. However, there is often confusion because the law may not apply to all the services a child needs. Parent advocates at PACER Center can help families understand the various systems and learn what services are available for their child.
• Understand that as your child grows up, services may change. Like clothing, what may fit a child at age two will not work for age eight. Therefore, services must meet the child’s current needs. That means that parents must stay informed about their child’s progress and the resources to serve their child.
• Seek information from many sources. It is a positive and accepted thing to do. Some parents may feel uncomfortable asking for information outside of their family group or community, but there are many resources to serve families in Minnesota. These organizations want and expect families to come to them for help. The more information parents have, the better they can understand what their child with a disability needs and to what he or she is entitled.
Members of the Southeast Asian community may face additional challenges. The following strategies may apply particularly to them:
• Ask for an interpreter or bring someone who can translate to meetings or appointments if you have difficulty speaking or understanding English. Mistakes in communicating can cause problems for your child. A federal law called the Individuals with Disabilities Education Act (IDEA) says the school must communicate so that the parent of a child with a disability can understand.
• Participate in discussions about your child. Most parents from Southeast Asia are taught to humble themselves to authority. However, in the United States, it is the job of school staff, medical personnel, agency employees, and other professionals to help children and families. It is not disrespectful to ask the professionals questions or to give your opinion. If you appear to be listening but you say nothing, professionals may believe that you agree with them and will use their advice. Parents and professionals must understand one another and work together to best help a child with a disability.
• Seek options for services and support. Many families new to the United States have not come to take advantage of opportunities, but to survive. They often have limited incomes, and they cannot afford to purchase assistive technology and equipment or hire tutors to help their child with a disability. The families often rely on public programs, such as Medical Assistance. Such assistance, however, usually has limits, so the families cannot depend on it to be current in technology or other services. If you pursue the various options, you may find other funding choices to help your child. However, competition for such support is great, and you must be assertive to make your child’s needs known.
Even with specific strategies for parents to help their child with a disability, there is a single, important factor: parents’ common sense. Parents know their child’s needs better than anyone else. They also care about the child more than anyone else does. So, if there is one strategy that every parent needs to help their child, it is:
Think of what is best for your child, and then do everything you can to make it happen.
Dao Xiong is the father of an adult daughter with disabilities, a member of the Twin Cities’ Hmong community, and a PACER Center parent advocate. PACER Center is a training and information center for families of children and youth with all disabilities and special health needs. PACER provides free resources such as publications, workshops, and individualized assistance to MN parents. It helps families make decisions about education, vocational training, employment, and other services for their child with disabilities. Families can call 952-838-9000. PACER’s Web site is www.pacer.org and its e-mail address is email@example.com