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.
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.
The following interviews are with teens and families about their experiences with Cerebral Palsy:
- Interview with Maggie
- Interview with Abbie, Maggie’s sister
- Interview with Dana, Maggie and Abbie’s mother
- Interview with Logan
- Interview with Debbie, Logan’s mother
The following interviews feature clinicians speaking about Cerebral Palsy:
- Interview with Dr. Laurie Glader, a pediatrician and Co-Director of the Cerebral Palsy Program at Boston Children’s Hospital.
- Interview with Carol Nolan, RN, a nurse formerly with the Cerebral Palsy Program
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.
- My life with Cerebral Palsy
- Hospital visits, treatments, and surgeries
- How it affects my family
- How it affects me at school
- Telling friends, answering questions, and coping with bullying
- My goals and accomplishments
- Words of wisdom
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.
- The first signs
- Getting the diagnosis and reactions
- Sources of support
- Working with clinicians
- How it affects our family
- How it affects our child in school and sports
- Hospital visits and surgery
- Helping our child communicate
- Answering questions
- How we cope with stress
- How we help our child cope
- Advice for other families
- Words of wisdom
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
- Meet our experts
- What is Cerebral Palsy?
- Working with patients and caregivers
- Treatments, interventions, and surgeries
- Resources we offer
- Challenges and rewards
- Advice from clinicians
- Clinician stories
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 Neurology, Developmental Medicine, and Psychiatry as well as the Cerebral Palsy Program.
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.