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If you know someone with cerebral palsy or a disability, make sure you are patient, understanding, and helpful. Treat them with kindness and equality. Be their friend.

Stephanie, 14

 

The Cerebral Palsy Experience Journal is a collection of stories and personal experiences from patients and families about what it is like to live with cerebral palsy. It represents the “collective wisdom” of these families as well as their health care providers.

While it is normal to feel some emotional discomfort associated with reading the stories of children and parents describing their experiences with Cerebral Palsy, we hope that families may learn from the stories of others facing similar experiences.

Visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about family and clinician recommended websites on Cerebral Palsy.


Video Interviews:

The following interviews are with teens and families about their experiences with Cerebral Palsy:

The following interviews feature clinicians speaking about Cerebral Palsy:

 

Child & Adolescent Stories:

People with cerebral palsy might have to overcome obstacles and challenges through life, an extra step in life. But like me and others with cerebral palsy, we are just like other people without cerebral palsy.

Karthik, 27

Family Stories:

At the end of the day, love your kid. Love them for who they are. Love them because they’re different. They’re special because they’re yours. You know, and that’s such a great thing. And like I tell people all the time: love makes things grow; love makes things change.

A Mother

Clinician Insights:

I strongly encourage families to ask the questions they have directly of their providers to get the best information that specifically relates to their child.

Laurie Glader, MD, Pediatrician, Cerebral Palsy Program


A group of parents and health care providers has reviewed all contributions for safety and appropriateness. The Cerebral Palsy Experience Journal was created by the Boston Children’s Hospital Departments of NeurologyDevelopmental Medicine, and Psychiatry as well as the Cerebral Palsy Program.

Acknowledgments

Editor’s note: Please keep in mind that every patient is different, and discussions of alternative treatments, complications, and timelines may not apply to you. Additionally, some families identify medications and treatments that work well for them. The Experience Journals do not endorse specific methods. Each individual is different, and we invite you to discuss treatments with your doctors and nurses to see if they are right for you.