Advocating for Your Child

One of your most important roles as a parent is to be your child's best and most assertive cheerleader. That's what an advocate is. You must become your child's voice and partner.

Since your baby cannot yet speak or make decisions for herself, you must become her voice and partner. You must work closely with health and social service professionals who are helping her. This is true for all parents. If your child has special needs, this role is even more important and, often, more difficult.

As your child's advocate, make sure she is getting high-quality and appropriate medical care and education. If your child has a disability, learn as much as you can about your child's condition. Select and work with a team of health care providers who can help your child. This will take time, patience and, most of all, emotional commitment. You may have to learn new skills to do this job. You will need to:

  • Communicate with your child's caregivers and social service providers. Do so kindly, but firmly. Use terms that are familiar to them.
  • Persuade them to provide all the services your child is entitled to.
  • Investigate new treatment options, services or educational opportunities for your child.
  • Ask for help when you need it.

Sometimes being the best advocate for your child means changing your baby's caregivers. If a provider does not seem to care or be concerned about your baby, or he treats you in a demeaning manner, then it may be best for you and your child to find someone else. Look for providers who see your child's strengths and who will take an active role in helping your child reach her potential.

Many parents discover strengths and abilities they didn't know they had. Some even find new career opportunities. Despite the frustrations, most find they are rewarded over and over by their child's progress and development. They are comforted with the knowledge that they are doing all they can for their child.

Additional information and support for families with babies in the NICU can be found at Share Your Story, the March of Dimes Web site for NICU families.

August 2009