1. Learn the signs
2. Seek support
- For Siblings - a resource for siblings of children with special needs, disabilities, and chronic illnesses: Link
- For Parents - know that you are not alone. Connect with other parents who have similar experiences:
Casey’s Circle is a nonprofit dedicated to helping families of children with special needs find ways for their kids to be kids first – patients later.
Hope for HIE is a global community and non-profit dedicated to improving the quality of life for children and families affected by Hypoxic Ischemic Encephalopathy (HIE).
Hand to Hold provides personalized support before, during and after a NICU stay to help ensure all NICU families thrive.
Child Neurology Foundation is committed to helping children and their families living with a neurologic condition receive the best care and achieve their highest quality of life.
3. Ask your healthcare provider or social workers to connect you with resources for social and emotional support
4. Celebrate every moment and small victory with your child and family
5. Explore our NSR Infographics
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Longitudinal Parent Experience
This infographic was created by the NSR, using information adapted from the NSR.
Manténganse al tanto
Question Prompt List
This infographic was created by the NSR, using information adapted from the NSR.
Manténganse al tanto
Parent Well-Being
This infographic was created by NSR and Hope for HIE, using information adapted from the NSR.
Infantile Spasms
This infographic was created by NSR and Hope for HIE, using information adapted from the NSR, Infantile Spasms Action Network and the Child Neurology Foundation.
Parent Well-Being Trajectory
This infographic was created by NSR and Hope for HIE, using information adapted from the NSR, Infantile Spasms Action Network and the Child Neurology Foundation.
