This presentation from the 2023 AACPDM Community Forum presents a model for creating a smooth transition from pediatric care to adult care for teens and young adults with cerebral palsy.
This study highlights the importance of monitoring and managing chronic conditions in adults with cerebral palsy. It also provides important information that can help healthcare professionals better understand the health needs of this population.
Speech impairments like dysarthria are common in children with cerebral palsy (CP) which can greatly affect participation across environments. Our study examined how speech impairment severity changes over time in 101 children with CP at 4, 6, 8, and 10 years of age.
When a person is looking for a way to communicate in alternative ways, they need to find something that really works for them. They need to try to find a voice that sounds natural. They want to try to find a way to be efficient. They want to be able to communicate as normally as possible, even though they're not using their biological voice.
Dysarthria is a motor speech disorder that affects how clear and understandable a person’s speech is. Between 50-90% of people with CP have dysarthria.
CPF Executive Director Rachel Byrne and Jason Benetti talk about his hard work, misperceptions, resilience, and his experience with cerebral palsy.
CPF Executive Director Rachel Byrne and Xian Horn, author and disability advocate discuss breaking down stereotypes.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
The Cerebral Palsy Foundation has created a checklist to help guide you in living the healthiest life possible. This checklist has been created for adults with cerebral palsy to provide basic guidance surrounding routine and additional screenings that should occur as part of your primary and preventive care.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
Though the initial insult or injury to the brain that causes cerebral palsy is non-progressive, aging with cerebral palsy and lack of physical activity during critical periods of development can impact biologic and metabolic function for adults with cerebral palsy.
Our educational series continues with this virtual event featuring a multi-disciplinary panel discussion on spasticity management and related issues for adults with Cerebral Palsy!
CPF Executive Director Rachel Byrne and Lily Collison with Kara Buckley and individuals from the book Pure Grit, talk about what it takes to be successful with a disability.
CPF Executive Director Rachel Byrne and Peter Trojic, professional dancer with the Heidi Latski dance Company in New York City, discuss dance and disability.
CPF Executive Director Rachel Byrne and speech therapist, Kristen Allison, PhD, CCC-SLP discuss communication and Cerebral Palsy.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
Don't miss Part 2 of this very special podcast series when podcast host Cynthia Frisina dives deeper with Michael Kutcher into his life growing up with cerebral palsy, his "coming of age" as the twin brother of actor Christopher "Ashton" Kutcher, and what Michael is doing now with his new "diffability" concept and continued advocacy work on behalf of people with disabilities and organ transplants recently featured in Forbes Magazine https://www.forbes.com/sites/karlmoore/2021/07/08/michael-kutcher-on-turning-obstacles-into-opportunities/?sh=6ed0e70f722f
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
Wonder what it's like to grow up as Michael Kutcher? On this episode of "Let's Talk CP" Michael Kutcher and host Cynthia Frisina dive deep into Michael's childhood and journey to adulthood - including the good, the not so good and the very surprising. You won't want to miss what Michael has to say in this very candid and intimate conversation.
As your child with CP is becoming a teenager, there are a couple of things you may want to think about.
It's important for all of us who are imposed with certain physical boundary conditions to push those boundary conditions as far as possible and maintain as much independence as absolutely possible.
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
