Looking Ahead

Finding Your Voice

You may be frustrated by some of the challenges your child and family face. You may think certain actions or policies don’t have your child’s best interest in mind. Because of this, you may want to speak out and find ways to change what doesn’t seem right to you.

Advocacy comes in many forms. It can range from teaching someone about your child to working with lawmakers to get laws passed. Each of us is different in how we advocate and what we choose to advocate for.

Learning to Advocate

The term advocacy doesn’t mean the same thing to everyone. One definition is “the act of speaking on the behalf of, or in support of, another person, place, or thing.” When you advocate, you are the voice for your child.

Not everyone recognizes families as equal partners. Learning and practicing advocacy skills can enhance your role and confidence in making decisions that impact your child’s life. This is be especially important when it comes to your child’s medical care.

Advocating for your child demonstrates that he or she matters. You model the importance of being involved. Often your child has better health outcomes when you take an active, equal role in care. It can be hard to feel like an equal partner in your child’s care in the beginning. Being an advocate doesn’t mean you disregard medical expertise and knowledge; it means you recognize and use the unique expertise and knowledge each person brings.

Learning to advocate happens over time. As you advocate for your child, you connect with others who have similar challenges. Often this helps because there is strength in numbers. By working together, you accomplish more than you would by yourself.

Telling and Educating Others

It is up to you what you share with others. Some families feel that sharing their child’s diagnosis and challenges is a way to get support, raise awareness or fundraise. They see it as an opportunity to teach others about something which may be new to them. Raising awareness may help your family feel better, and help others understand the challenges and issues your family is facing, or you may choose to only share with a few people close to you. Some people may be on a need-to-know basis. Whichever you are comfortable with is okay. It is important to discuss this with family and friends, so everyone is on the same page, and knows what your family is comfortable with sharing with others.