Whether your child is born with a disability or is diagnosed years later, your life is suddenly detoured onto an unfamiliar road. Unless you are a professional trained to work with disabled childre, you won't be prepared. When raising a special needs child you will also have to learn the medical, legal and educational issues related to the diagnosis.
Definition
A disability is any type of physical or mental impairment that prevents or restricts normal life activities. Physical disabilities can be caused by neuromuscular, cardiovascular, pulmonary or orthopedic disorders. The category of mental disabilities includes mental illness, organic brain damage and learning and developmental disabilities.
Stay Balanced
Many parents go through a grief process after hearing the diagnosis. You may feel shock, denial, anger and depression or feel guilty and wonder what you could have done differently. Know that this stage will pass. Raising a disabled child becomes a time-consuming whirlwind of working with your child, medical appointments and meetings. It's so important to take care of yourself with a healthy diet, exercise and time away to relax and refresh. It's easy to become isolated, so purposefully maintain communication with family and friends.
Education
Learn everything you can about your child's disability. Talk to professionals, talk to other parents, join support groups, do research and obtain information from the appropriate organizations. Be sure you understand what causes the disability (if the causes are known), the symptoms and behaviors associated with it and the different types of treatment that are available. In addition to learning about the disability, look for sources of help including case management, community-based therapy, funding streams for therapy, medical assistance, social security and supplemental security income.
Programs
Early intervention is critical to ensure the best possible outcome, especially for developmental disabilities. The health professionals familiar with your child should develop a treatment plan and refer you to local agencies providing services. If you don't have a physician, then contact your county health department. The U.S. Office of Special Education Programs operates Child Find, which evaluates children with disabilities to determine their need for early intervention. Child Find services are provided through your local school system. As your child enters school you'll be part of the team creating an Individualized Education Plan for your child. This is a document that details emotional, behavioral and educational goals as well as special accommodations needed to ensure an appropriate education.
Behavior Issues
Disabilities make it difficult to master typical tasks and activities. Processing thoughts, emotions and problems may be extremely challenging. Your child may not have the language skills to express her thoughts and emotions. All of this results in frustration and may trigger misbehavior. Approach behavioral issues with the perspective that misbehavior has a purpose and it's up to you to determine what that is. Pay attention to what precedes the behavior and try to understand what your child really needs. While children with disabilities need extra support, never sell them short. Create appropriate expectations, and encourage them to be responsible.
Advocate
In spite of laws intended to protect your child, the reality is that the best services are not always going to be provided--especially in an age of budget cuts. At some point you will need to be a tireless advocate to ensure your child receives the programs and assistance she needs to optimize success.
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