For New Parents

Being told that your child is diagnosed with a serious health issue or disability can be devastating. You are filled with fear and uncertainty. The diagnosis often leads a parent to experience the same stages of grief as when you lose a loved one. The first stage is denial. How can your child have this? Did you do something wrong during the pregnancy? Are your genes “bad”? Denial is often followed by guilt or anger. One may also experience depression. These responses are all normal, and often necessary, in order to deal with the diagnosis and come to terms with the “new normal” that will encompass your life.

What can you do? How can you cope? The best way to navigate through this journey of emotions is to seek information—to find what is known about your child’s condition and what is unknown. Finding answers and gathering facts gives you the tools you need to confront your fears and begin the important task of taking action on behalf of your child.

Throughout the past decade, researchers have learned much about disorders of the corpus callosum. Medical imaging technologies have improved and made diagnosis easier, some even occurring while the child is still in the womb. Though a diagnosis can be made, the outcome for each child cannot be predicted. Disorders of the corpus callosum lie on a spectrum, making each child’s condition unique, and therefore, the outcome unique. Although the structural disorder inside the brain cannot be changed or cured, the outcome for the child is going to depend on how he or she is treated with medicines, counseled with coping strategies, educated in both academic and social skills, and guided through life with their unique attributes.

On these website pages you will find information and action plans that can improve the outcome for your child.

Never lose confidence in yourself as a parent. You are your child’s advocate and caregiver. Surround yourself with a strong support system that will help you meet the challenges, overcome the obstacles, seek ways to create a better quality of life, and celebrate the successes no matter how large or small.

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