For Families

You are not alone.

This section is dedicated to children, families, siblings, relatives, friends, and caregivers who are affected by CDKL5. In the words of one of our parents, remember that “you don’t know how strong you are until you have to be.” Let’s be strong together.

We wish love were enough to help out children, but our abundance of love is only the beginning of what we need. So love is where we start.
— Katheryn Frame, mother of a child diagnosed with 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.
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