What does it mean to be an advocate for my child?

An advocate is someone who speaks up for someone else, or who acts on behalf of another person. As a parent, you know your child better than anyone else, and you are in the best position to speak for them and act on their behalf. Advocating for your child is emotionally challenging. It requires a full understanding of your child’s needs and acceptance of their disability. There is so much involved in understanding and managing your own emotions towards raising a child with special needs, all the while, finding ways to best help your child reach their fullest potential.

You are stronger than you know! There are so many twists and turns on this CDKL5 journey. Your life will be altered in many ways. But at the center of everything is a beautiful son or daughter whom you love unconditionally. Their life is a celebration, and that will empower you to fight as hard as possible for them.

As a parent and advocate, you will be your child’s voice in every aspect of their lives and help them reach their fullest potential. Effective advocacy sets the foundation for what will be expected for your child throughout his or her life. This is often challenging, and you may feel a spectrum of emotions (anger, disappointment, rage, defeat, sadness, joy, triumph). We have all been there, but it helps to keep focused on the why we are doing this – for our children.

There are many systems that service your child. County, state and federal laws control the various public assistance systems you will encounter. All have unique rules, regulations, policies and procedures. Becoming familiar with these will help you effectively advocate for your child. It never hurts to ask for what you want. Even if think you it is impossible. YOU know your child best and what he or she needs to reach her fullest potential.

People working for governmental agencies and in school systems are often restricted by budgets, ambiguous rules, and likely have a lack of information regarding CDKL5 disorders. They may not know your child and may not have a full understanding of how to best serve your child. Be as informed as possible to effectively navigate through the system you are in. Ask questions and seek information about treatments and services available to improve your child’s care. When possible seek help and support from others. Your ultimate goal is to obtain the highest level of services that your child needs to live life at their fullest.

The IFCR is available for advocacy support by contacting us at We would be happy to answer any questions pertaining to your CDKL5 child and how to guide you towards becoming your child’s voice. There are also a few CDKL5 Facebook support groups where you can seek advice and various perspectives on issues of importance to you. If you are unable to access the on-line support groups, please contact the IFCR, and we will help connect you with an individual or group that can further assist you with your request.

Being a champion for your child it not easy. It takes time, planning, patience, and perseverance. You can do this! “You don’t know how strong you are until you have to be” ~ Leita Boltwood, mother of three children affected by CDKL5


10 Tips for Coping with the Emotions of Parenting a Child with Special Needs:

  1. Allow yourself to feel sadness related to your child’s disability. It is part of the cycle of grief and, ultimately, of healing.
  2. Surround yourself with supportive people who “get it” about your child. Connect with other parents who are walking in your shoes. You are not alone!
  3. Don’t be afraid to ask for help. Often family and friends want to help, but they just don’t know how.
  4. Be honest about your feelings and share them with trusted friends, family members, or a counselor.
  5. Do not let your child’s disability define you or your child.
  6. Celebrate your child’s accomplishments and his/her successes no matter how small, they all count!
  7. Even though it is often difficult, try to live in the moment and truly enjoy your child for the person they are!
  8. Learn about your child’s disability – it will go a long way toward understanding and advocating for your child.
  9. Have a sense of humor – laugh often! It is important for your children to see you happy.
  10. Take care of YOU! With all you have to do, it is important to fit at least a little time for yourself. A refreshed parent goes a long way toward helping your child.